Educational and vocational goal disruption in adolescent and young adult cancer survivors.

PubMed

Vetsch, Janine; Wakefield, Claire E; McGill, Brittany C; Cohn, Richard J; Ellis, Sarah J; Stefanic, Natalie; Sawyer, Susan M; Zebrack, Brad; Sansom-Daly, Ursula M

2018-02-01

Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals. Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work. Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals. The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals. Copyright © 2017 John Wiley & Sons, Ltd.

Provincial Disparities of Growth Hormone Coverage for Young Adult Survivors of Paediatric Brain Tumours across Canada

PubMed Central

Hasan, Haroon; Howard, Fuchsia; Morgan, Steven G.; Metzger, Daniel L.; Gill, Sabrina; Johnson, Michelle; Lo, Andrea C.; Goddard, Karen

2014-01-01

Background: Young adult survivors of paediatric brain tumours (PBTs) who have been treated with radiation therapy will likely be severely growth hormone–deficient when retested at the achievement of final height. Growth hormone replacement therapy (GHRT) is administered to treat growth hormone deficiency (GHD). Public drug coverage for GHRT falls under the responsibility of provincial governments across Canada. This study sought to determine the extent of public drug coverage and cost in each Canadian province for GHRT to treat GHD during adulthood for young adult survivors of PBTs. Methods: Data were collected from provincial government resources and drug formularies from 2012–2013 on the extent of coverage for GHRT based on a clinical case scenario representative of a young adult survivor of a PBT with childhood-onset radiation-induced GHD, the ingredient cost for GHRT and the applicable provincial public drug plan cost-sharing policies. A model was then created to simulate out-of-pocket costs incurred by a young adult male and a young adult female survivor of a PBT for one year of GHRT in each province with applicable cost-sharing arrangements and levels of low annual individual total income that best represent the majority of young adult survivors of PBTs. Out-of-pocket costs were expressed as a percentage of annual income. Comparisons were made between provinces descriptively, and variation among provinces was summarized statistically. Results: Alberta, Manitoba, Ontario, Quebec, New Brunswick, and Newfoundland and Labrador provide coverage for GHD during adulthood on a case-by-case basis, while British Columbia, Saskatchewan, Nova Scotia and Prince Edward Island provide no coverage. The percentage of annual income to fund GHRT across the provinces without public coverage ranged from 14.4% to 25.5% for males and 21.5% to 38.3% for females, and with public coverage was 0.0% to 4.1% for males and 0.0% to 5.0% for females. Interpretation: There are

Measuring health-related beliefs of mothers of adolescent and young adult childhood cancer survivors.

PubMed

Doshi, Kinjal; Kazak, Anne E; Derosa, Branlyn Werba; Schwartz, Lisa A; Hobbie, Wendy; Ginsberg, Jill; Ittenbach, Richard F

2011-03-01

Childhood cancer has long-term implications for survivors and their family members. While the impact of cancer on the family continues into adulthood, little research exists on family related issues during this important developmental period. In order to advance our understanding of families of adolescent and young adult (AYA) childhood cancer survivors, a measure of health-related beliefs for parents of AYA cancer survivors was developed. Exploratory factor analysis based on the mothers' data was used to identify four factors among 23 items: Social Competence, Satisfaction with Healthcare, Health Perceptions, and Health Apprehension. The scales are associated with psychological distress, quality of life, and posttraumatic stress symptoms but unrelated to age of the child at diagnosis and cancer treatment intensity. The beliefs identified in this study are consistent with clinical observations of families of young adult survivors and provide indications for the importance of ongoing attention to the families of childhood cancer survivors. (c) 2011 APA, all rights reserved

Screening for thyroid cancer in survivors of childhood and young adult cancer treated with neck radiation.

PubMed

Tonorezos, Emily S; Barnea, Dana; Moskowitz, Chaya S; Chou, Joanne F; Sklar, Charles A; Elkin, Elena B; Wong, Richard J; Li, Duan; Tuttle, R Michael; Korenstein, Deborah; Wolden, Suzanne L; Oeffinger, Kevin C

2017-06-01

The optimal method of screening for thyroid cancer in survivors of childhood and young adult cancer exposed to neck radiation remains controversial. Outcome data for a physical exam-based screening approach are lacking. We conducted a retrospective review of adult survivors of childhood and young adult cancer with a history of neck radiation followed in the Adult Long-Term Follow-Up Clinic at Memorial Sloan Kettering between November 2005 and August 2014. Eligible patients underwent a physical exam of the thyroid and were followed for at least 1 year afterwards. Ineligible patients were those with prior diagnosis of benign or malignant thyroid nodules. During a median follow-up of 3.1 years (range 0-9.4 years), 106 ultrasounds and 2277 physical exams were performed among 585 patients. Forty survivors had an abnormal thyroid physical exam median of 21 years from radiotherapy; 50% of those with an abnormal exam were survivors of Hodgkin lymphoma, 60% had radiation at ages 10-19, and 53% were female. Ultimately, 24 underwent fine needle aspiration (FNA). Surgery revealed papillary carcinoma in seven survivors; six are currently free of disease and one with active disease is undergoing watchful waiting. Among those with one or more annual visits, representing 1732 person-years of follow-up, no cases of thyroid cancer were diagnosed within a year of normal physical exam. These findings support the application of annual physical exam without routine ultrasound for thyroid cancer screening among survivors with a history of neck radiation. Survivors with a history of neck radiation may not require routine thyroid ultrasound for thyroid cancer screening. Among adult survivors of childhood and young adult cancer with a history of radiation therapy to the neck, annual physical exam is an acceptable thyroid cancer screening strategy.

Enhancing Psychosocial Outcomes for Young Adult Childhood CNS Cancer Survivors: Importance of Addressing Vocational Identity and Community Integration

ERIC Educational Resources Information Center

Strauser, David R.; Wagner, Stacia; Wong, Alex W. K.

2012-01-01

The purpose of this study was to examine the relationship between vocational identity, community integration, positive and negative affect, and satisfaction with life in a group of young adult central nervous system (CNS) cancer survivors. Participants in this study included 45 young adult CNS cancer survivors who ranged in age from 18 to 30 years…

Engagement of young adult cancer survivors within a Facebook-based physical activity intervention.

PubMed

Valle, Carmina G; Tate, Deborah F

2017-12-01

Few studies have examined how young adult cancer survivors use online social media. The objective of this study was to characterize Facebook engagement by young adult cancer survivors in the context of a physical activity (PA) intervention program. Young adult cancer survivors participated in one of two Facebook groups as part of a 12-week randomized trial of a PA intervention (FITNET) compared to a self-help comparison (SC) condition. A moderator actively prompted group discussions in the FITNET Facebook group, while social interaction was unprompted in the SC group. We examined factors related to engagement, differences in engagement by group format and types of Facebook posts, and the relationship between Facebook engagement and PA outcomes. There were no group differences in the number of Facebook comments posted over 12 weeks (FITNET, 153 vs. SC, 188 p = 0.85) or the proportion of participants that reported engaging within Facebook group discussions at least 1-2 days/week. The proportion of participants that made any posts decreased over time in both groups. SC participants were more likely than FITNET participants to agree that group discussions caused them to become physically active (p = 0.040) and that group members were supportive (p = 0.028). Participant-initiated posts elicited significantly more comments and likes than moderator-initiated posts. Responses posted on Facebook were significantly associated with light PA at 12 weeks (β = 11.77, t(85) = 1.996, p = 0.049) across groups. Engagement within Facebook groups was variable and may be associated with PA among young adult cancer survivors. Future research should explore how to promote sustained engagement in online social networks. ClinicalTrials.gov identifier: NCT01349153.

Vocational identity, positive affect, and career thoughts in a group of young adult central nervous system cancer survivors.

PubMed

Lange, Dustin D; Wong, Alex W K; Strauser, David R; Wagner, Stacia

2014-12-01

The aims of this study were as follows: (a) to compare levels of career thoughts and vocational identity between young adult childhood central nervous system (CNS) cancer survivors and noncancer peers and (b) to investigate the contribution of vocational identity and affect on career thoughts among cancer survivors. Participants included 45 young adult CNS cancer survivors and a comparison sample of 60 college students. Participants completed Career Thoughts Inventory, My Vocational Situation, and the Positive and Negative Affect Schedule. Multivariate analysis of variance and multiple regression analysis were used to analyze the data in this study. CNS cancer survivors had a higher level of decision-making confusion than the college students. Multiple regression analysis indicated that vocational identity and positive affect significantly predicted the career thoughts of CNS survivors. The differences in decision-making confusion suggest that young adult CNS survivors would benefit from interventions that focus on providing knowledge of how to make decisions, while increasing vocational identity and positive affect for this specific population could also be beneficial.

Validity of self-reported fertility-threatening cancer treatments in female young adult cancer survivors.

PubMed

Roberts, Samantha C; Knight, Amber; Whitcomb, Brian W; Gorman, Jessica R; Dietz, Andrew C; Irene Su, H

2017-08-01

Detailed cancer treatment information is important to fertility and pregnancy care of female young adult cancer survivors. Accuracy of self-report of treatments that impact fertility and pregnancy is unknown. This study assessed agreement between self-report and medical records on receipt of fertility-threatening treatments. A national cohort study of female young adult cancer survivors reported cancer treatments via Web-based questionnaires. Primary cancer treatment records were abstracted. Self-reported exposure to fertility-threatening therapies (alkylating chemotherapy, stem cell transplant, pelvic radiation, hysterectomy, and/or oophorectomy) was compared to medical records. Logistic regression models estimated odds ratios (OR) for characteristics associated with inaccurate self-report of fertility-threatening therapies. The study included 101 survivors (mean age 28.2, SD 6.3). Lymphoma (33%), breast cancer (26%), and gynecologic cancers (10%) were the most common cancers. Accuracy of self-report was 68% for alkylating chemotherapy and 92-97% for radiation, surgery, and transplant. Significant proportions of survivors who were treated with transplant (8/13, 62%), alkylating chemotherapy (18/43, 42%), pelvic radiation (4/13, 31%), or hysterectomy and/or oophorectomy (3/13, 23%) did not report undergoing these therapies. In adjusted analysis, age ≤ 25 at diagnosis (OR 3.4, 95% CI 1.3-8.7) and recurrence (OR 6.0, 95% CI 1.5-24.4) were related to inaccurate self-report. Female young adult cancer survivors have limited recall of fertility-threatening cancer treatment exposures. Reproductive health providers and researchers who need this information may require primary medical records or treatment summaries. Additional patient education regarding treatment-related reproductive risks is needed to facilitate patient engagement in survivorship. Obtaining a cancer treatment summary will help survivors communicate their prior treatment exposures to reproductive

Young adult survivors of childhood acute lymphoblastic leukemia show evidence of chronic inflammation and cellular aging.

PubMed

Ariffin, Hany; Azanan, Mohamad Shafiq; Abd Ghafar, Sayyidatul Syahirah; Oh, Lixian; Lau, Kee Hie; Thirunavakarasu, Tharshanadhevasheri; Sedan, Atiqah; Ibrahim, Kamariah; Chan, Adelyne; Chin, Tong Foh; Liew, Fong Fong; Jeyamogan, Shareni; Rosli, Erda Syerena; Baharudin, Rashidah; Yap, Tsiao Yi; Skinner, Roderick; Lum, Su Han; Hainaut, Pierre

2017-11-01

Large epidemiologic studies have reported the premature onset of age-related conditions, such as ischemic heart disease and diabetes mellitus, in childhood cancer survivors, decades earlier than in their peers. The authors investigated whether young adult survivors of childhood acute lymphoblastic leukemia (ALL) have a biologic phenotype of cellular ageing and chronic inflammation. Plasma inflammatory cytokines were measured using a cytometric bead array in 87 asymptomatic young adult survivors of childhood ALL (median age, 25 years; age range, 18-35 years) who attended annual follow-up clinic and compared with healthy, age-matched and sex-matched controls. Leukocyte telomere length (LTL) was measured using Southern blot analysis. Survivors had significant elevation of plasma interleukin-2 (IL-2), IL-10, IL-17a, and high-sensitivity C-reactive protein levels (all P < .05). A raised high-sensitivity C-reactive protein level (>0.8 mg/dL) was related to increased odds of having metabolic syndrome (odds ratio, 7.256; 95% confidence interval, 1.501-35.074). Survivors also had significantly shorter LTL compared with controls (median, 9866 vs 10,392 base pairs; P = .021). Compared with published data, LTL in survivors was similar to that in healthy individuals aged 20 years older. Survivors who received cranial irradiation had shorter LTL compared with those who had not (P = .013). Asymptomatic young adult survivors of childhood ALL demonstrate a biologic profile of chronic inflammation and telomere attrition, consistent with an early onset of cellular processes that drive accelerated aging. These processes may explain the premature development of age-related chronic conditions in childhood cancer survivors. Understanding their molecular basis may facilitate targeted interventions to disrupt the accelerated aging process and its long-term impact on overall health. Cancer 2017;123:4207-4214. © 2017 American Cancer Society. © 2017 American Cancer Society.

Health Status of Adolescent and Young Adult Cancer Survivors

PubMed Central

Tai, Eric; Buchanan, Natasha; Townsend, Julie; Fairley, Temeika; Moore, Angela; Richardson, Lisa C.

2017-01-01

BACKGROUND Adolescents and young adults (AYA) ages 15 to 29 years who are diagnosed with cancer are at risk for long-term morbidity and mortality associated with treatment of their cancer and the cancer itself. In this article, the authors describe the self-reported health status of AYA cancer survivors. METHODS The authors examined 2009 data from the Behavioral Risk Factor Surveillance System, including demographic characteristics, risk behaviors, chronic conditions, health status, and health care access, among AYA cancer survivors compared with respondents who had no history of cancer. RESULTS The authors identified 4054 AYA cancer survivors and 345,592 respondents who had no history of cancer. AYA cancer survivors, compared with respondents who had no history of cancer, reported a significantly higher prevalence of current smoking (26% vs 18%); obesity (31% vs 27%); chronic conditions, including cardiovascular disease (14% vs 7%), hypertension (35% vs 29%), asthma (15% vs 8%), disability (36% vs 18%), and poor mental health (20% vs 10%) and physical health (24% vs 10%); and not receiving medical care because of cost (24% vs 15%). CONCLUSIONS AYA cancer survivors commonly reported adverse behavioral, medical, and health care access characteristics that may lead to poor long-term medical and psychosocial outcomes. Increased adherence to established follow-up guidelines may lead to improved health among AYA cancer survivors.* PMID:22688896

Participating in life again: a mixed-method study on a goal-orientated rehabilitation program for young adult cancer survivors.

PubMed

Hauken, May Aasebø; Holsen, Ingrid; Fismen, Eirik; Larsen, Torill Marie Bogsnes

2014-01-01

Young adult cancer survivors (18-35 years old) are at risk of lifelong threats to physical and psychosocial health and decreased life participation. Research indicates lack of information about the late effects and health risks and limited follow-up and rehabilitation. The objectives of this study were to examine whether a goal-oriented rehabilitation program increased young adult cancer survivors' participation and explore the participants' descriptions and experience of the process. We used a convergent parallel design combining quantitative and qualitative methods. Sixteen young adult cancer survivors (aged 24-35 years), with different cancer diagnoses, were allocated to a 6-month rehabilitation program. The Canadian Occupational Performance Measure showed significant (P < .001) change in both performance and satisfaction from the start (T1) to the end (T4) of the program. Qualitative results indicated that increased participation was depended on building capacity and finding the balance, gaining new insight, and follow-up. Important factors of the rehabilitation program seemed to be physical activity, psychoeducation, peer-to-peer support, and follow-up over time. Results indicate that a goal-oriented rehabilitation program may increase participation by young adult cancer survivors. The goal-oriented process is not straightforward and depends on experience of coping and control, finding a balance between the different areas of life and follow-up over time. Health professionals should play an important role in the rehabilitation of young adult cancer survivors by promoting empowerment and follow-up over time. The Canadian Occupational Performance Measure seems to be a valuable instrument for setting goals and thus helps facilitate participation.

Racial Differences in 20-Year Cardiovascular Mortality Risk Among Childhood and Young Adult Cancer Survivors.

PubMed

Berkman, Amy M; Brewster, Abenaa M; Jones, Lee W; Yu, Jun; Lee, J Jack; Peng, S Andrew; Crocker, Abigail; Ater, Joann L; Gilchrist, Susan C

2017-09-01

Whether cardiovascular disease (CVD) risk differs according to race and cancer type among survivors of childhood or young adulthood cancers is unknown. Data from the years 1973-2011 were analyzed using the Surveillance, Epidemiology, and End Results (SEER) registries. Cases were categorized by ICD-0-3/WHO 2008 Adolescent and Young Adult classification. CVD death was determined by ICD-10 codes for diseases of the heart, atherosclerosis, cerebrovascular diseases, or other diseases of the arteries. Cox proportional hazards models were fitted to evaluate the hazard ratio (HR) and 95% confidence intervals (CIs) for the effects of race on time-to-event outcomes. A total of 164,316 cases of childhood and young adult primary cancers were identified. There were 43,335 total and 1466 CVD deaths among Black and White survivors. Black survivors had higher risks of all-cause mortality (HR: 1.75, 95% CI: 1.70-1.7) and CVD mortality (HR: 2.13, 95% CI: 1.85-2.46) compared to White survivors. The increased risk of CVD for Black survivors compared to White survivors persisted at 5-years (HR: 2.38, 95% CI: 1.83-3.10), 10-years (HR: 2.59, 95% CI: 2.09-3.21), and 20-years (HR: 2.31, 95% CI: 1.95-2.74) postdiagnosis, and varied by cancer type, with the highest HRs for melanoma (HR: 8.16, 95% CI: 1.99-33.45) and thyroid cancer (HR: 3.43, 95% CI: 1.75-6.73). Black survivors of childhood or young adulthood cancers have a higher risk of CVD mortality compared to Whites that varies by cancer type. Knowledge of at-risk populations is important to guide surveillance recommendations and behavioral interventions. Further study is needed to understand the etiology of racial differences in CVD mortality in this population.

Body Image Discomfort of Adolescent and Young Adult Hematologic Cancer Survivors.

PubMed

Zucchetti, Giulia; Bellini, Simona; Bertolotti, Marina; Bona, Francesca; Biasin, Eleonora; Bertorello, Nicoletta; Tirtei, Elisa; Fagioli, Franca

2017-06-01

This study focuses on body image discomfort (BID) of 50 adolescent and young adult (AYA) hematologic cancer survivors (age range 15-23; 52% males). The study results were obtained through data from a self-report questionnaire: the Body Uneasiness Test. Findings differed according to gender: a greater proportion of females were in the Risk category of impaired body image than males (χ 2  = 5.258, p < 0.05). No significant body image differences were found according to the type of diagnosis or to the length of survival. To manage survivors' BIDs and to improve their quality of life, assessing BID in AYA cancer survivors is important for identifying those who might be in need of additional supportive care or a program.

Distinct health behavior and psychosocial profiles of young adult survivors of childhood cancers: a mixed methods study.

PubMed

Lowe, Kincaid; Escoffery, Cam; Mertens, Ann C; Berg, Carla J

2016-08-01

We used a mixed-methods approach to examine health behavior profiles of young adult cancer survivors and characterize related sociodemographic and psychosocial factors. We conducted a mail-based survey assessing sociodemographics, cancer treatment, health behaviors (e.g., tobacco use, physical activity), healthcare provider interactions, and psychosocial factors (e.g., Profile of Moods States [POMS]) among 106 young adult survivors from a southeastern cancer center and semi-structured interviews among a subset of 26. A k-means cluster analysis using eight health behaviors yielded three distinct health behavior profiles: high risk (n = 25), moderate risk (n = 39), and low risk (n = 40). High risks had the highest current alcohol, tobacco, and marijuana use; physical activity; and number of sexual partners (p's < 0.001). They had higher symptoms of POMS tension-anxiety, depression-dejection, fatigue-inertia, and confusion-bewilderment (p's < 0.05). Moderate risks had lowest physical activity (p < 0.05) but otherwise had moderate health behaviors. Low risks had the lowest alcohol, tobacco, and marijuana use and fewest sexual partners (p's < 0.05). They had the lowest levels of tension-anxiety, depression-dejection, fatigue-inertia, and confusion-bewilderment (p's < 0.05). Qualitative interviews showed that cancer had a range of effects on health behaviors and variable experiences regarding how healthcare providers address these behaviors. Assessing health behavior profiles, rather than individual health behaviors, is informative in characterizing young adult cancer survivors and targeting survivorship care. Young adult cancer survivors demonstrate distinct health behavior profiles and are differentially impacted by the experience of cancer. Healthcare providers should be consistently intervening to ensure that survivors understand their specific health risks.

Sexual function in adolescent and young adult survivors of lower extremity bone tumors.

PubMed

Barrera, Maru; Teall, Tanya; Barr, Ronald; Silva, Mariana; Greenberg, Mark

2010-12-15

Improving survival rates and new surgical options have led to increased interest regarding late effects and quality of life in adolescent and young adult survivors of bone cancers, including their sexual functioning. This study investigated sexual functioning in adolescent and young adult survivors of lower limb bone tumors, in relation to surgical treatments, gender differences, depressive symptoms, global self worth, and physical disability. Twenty-eight participants (age range 18-32 years) completed measures of gender specific sexual function, depressive symptoms, global self worth, and physical disability. For analysis, surgical intervention was grouped into limb sparing surgeries (LS; allograft fusion and endoprosthesis) and amputation or Van Nes rotationplasty (AMP). Male survivors reported significantly higher scores than females on total sexual function scores (P = 0.050), sexual drive (P = 0.002), and frequency of sexual thoughts, fantasies or erotic dreams (P = 0.021). Men also reported significantly better physical functioning scores than women (P = 0.012). LS scored significantly lower on frequency of sexual thoughts, fantasies and erotic dreams (P = 0.048) and frequency of sexual experiences (P = 0.016) compared with AMP. In addition, LS reported significantly more depressive symptoms scores (P = 0.004) and lower self worth scores (P = 0.037), than AMP. These results suggest that male survivors of lower extremity bone tumors experience better sexual functioning than women. Survivors of limb sparing surgeries struggle with sexual function, depressive symptoms, and poor self-perception compared to Van Nes rotationplasty and amputation survivors. Copyright © 2010 Wiley-Liss, Inc.

Patterns of diagnostic imaging and associated radiation exposure among long-term survivors of young adult cancer: a population-based cohort study.

PubMed

Daly, Corinne; Urbach, David R; Stukel, Thérèse A; Nathan, Paul C; Deitel, Wayne; Paszat, Lawrence F; Wilton, Andrew S; Baxter, Nancy N

2015-09-03

Survivors of young adult malignancies are at risk of accumulated exposures to radiation from repetitive diagnostic imaging. We designed a population-based cohort study to describe patterns of diagnostic imaging and cumulative diagnostic radiation exposure among survivors of young adult cancer during a survivorship time period where surveillance imaging is not typically warranted. Young adults aged 20-44 diagnosed with invasive malignancy in Ontario from 1992-1999 who lived at least 5 years from diagnosis were identified using the Ontario Cancer Registry and matched 5 to 1 to randomly selected cancer-free persons. We determined receipt of 5 modalities of diagnostic imaging and associated radiation dose received by survivors and controls from years 5-15 after diagnosis or matched referent date through administrative data. Matched pairs were censored six months prior to evidence of recurrence. 20,911 survivors and 104,524 controls had a median of 13.5 years observation. Survivors received all modalities of diagnostic imaging at significantly higher rates than controls. Survivors received CT at a 3.49-fold higher rate (95% Confidence Interval [CI]:3.37, 3.62) than controls in years 5 to 15 after diagnosis. Survivors received a mean radiation dose of 26 miliSieverts solely from diagnostic imaging in the same time period, a 4.57-fold higher dose than matched controls (95% CI: 4.39, 4.81). Long-term survivors of young adult cancer have a markedly higher rate of diagnostic imaging over time than matched controls, imaging associated with substantial radiation exposure, during a time period when surveillance is not routinely recommended.

Response to a Treatment Summary and Care Plan Among Adult Survivors of Pediatric and Young Adult Cancer

PubMed Central

Spain, Peter D.; Oeffinger, Kevin C.; Candela, Joanne; McCabe, Mary; Ma, Xiaomei; Tonorezos, Emily S.

2012-01-01

Purpose: Survivors of pediatric and young adult cancer are at increased risk for treatment-related problems. Yet, few survivors receive risk-based care. The treatment summary and care plan are recommended to improve understanding of cancer treatment, potential late effects, and recommended screening. It is unknown whether survivors retain, understand, value, and disseminate the document, and whether it causes worry. Methods: We surveyed 111 adult survivors of pediatric and young adult cancer 1 to 6 weeks after receipt of a one-page treatment summary and care plan (response rate, 96%). Participants answered questions regarding retention, understanding, value, dissemination, concern, and preferences. Results: Participants were majority female (58%), college-educated (60%), diagnosed with cancer before age 21 (76%), on average 18 years from diagnosis (range, 2 to 50 years), and treated with radiation and chemotherapy (61%). Median age was 30 years (range, 18 to 65 years). A majority of participants stated that they understood the treatment summary (95%), retained the document (95%), and valued it (92%). A minority reported that the document caused concern (14%) or wanted more information than the form provided (20%). Although the time between receipt of the document and survey was brief, many described dissemination of the document to their personal circle (44%) or an outside provider (10 [33%] of 30 who saw an outside doctor). Conclusion: A one-page treatment summary and care plan was well-received and did not cause report of undue concern. Additional health-related information was requested by some, and dissemination to outside providers could be improved. PMID:22942816

Executive functioning deficits in young adult survivors of bronchopulmonary dysplasia.

PubMed

Gough, Aisling; Linden, Mark A; Spence, Dale; Halliday, Henry L; Patterson, Christopher C; McGarvey, Lorcan

2015-01-01

To assess long-term impairments of executive functioning in adult survivors of bronchopulmonary dysplasia (BPD). Participants were assessed on measures of executive functioning, health-related quality of life (HRQoL) and social functioning. Survivors of BPD (n = 63; 34 males; mean age 24.2 years) were compared with groups comprising preterm (without BPD) (<1500 g; n = 45) and full-term controls (n = 63). Analysis of variance was used to explore differences among groups for outcome measures. Multiple regression analyzes were performed to identify factors predictive of long-term outcomes. Significantly more BPD adults, compared with preterm and term controls, showed deficits in executive functioning relating to problem solving (OR: 5.1, CI: 1.4-19.3), awareness of behavior (OR: 12.7, CI: 1.5-106.4) and organization of their environment (OR: 13.0, CI: 1.6-107.1). Birth weight, HRQoL and social functioning were predictive of deficits in executive functioning. This study represents the largest sample of survivors into adulthood of BPD and is the first to show that deficits in executive functioning persist. Children with BPD should be assessed to identify cognitive impairments and allow early intervention aimed at ameliorating their effects. Implications for Rehabilitation Adults born preterm with very-low birth weight, and particularly those who develop BPD, are at increased risk of exhibiting defects in executive functioning. Clinicians and educators should be made aware of the impact that BPD can have on the long-term development of executive functions. Children and young adults identified as having BPD should be periodically monitored to identify the need for possible intervention.

Cognitive, behaviour, and academic functioning in adolescent and young adult survivors of childhood acute lymphoblastic leukaemia: a report from the Childhood Cancer Survivor Study.

PubMed

Jacola, Lisa M; Edelstein, Kim; Liu, Wei; Pui, Ching-Hon; Hayashi, Robert; Kadan-Lottick, Nina S; Srivastava, Deokumar; Henderson, Tara; Leisenring, Wendy; Robison, Leslie L; Armstrong, Gregory T; Krull, Kevin R

2016-10-01

Survivors of childhood acute lymphoblastic leukaemia (ALL) are at risk for neurocognitive deficits that affect development in adolescence and young adulthood, and influence educational attainment and future independence. We examined a large and diverse cohort of survivors to identify risk predictors and modifiers of these outcomes. In this cohort study, cognitive and behaviour symptoms were assessed via a standardised parent questionnaire for 1560 adolescent survivors of ALL diagnosed between 1970 and 1999. Clinically significant symptoms (≥90th percentile) and learning problems were compared between survivors and a sibling cohort. Multivariable regression models were used to examine associations with demographic and treatment characteristics. Models were adjusted for inverse probability of sampling weights to reflect undersampling of ALL survivors in the expansion cohort. In a subset of survivors with longitudinal data (n=925), we examined associations between adolescent symptoms or problems and adult educational attainment. Compared with siblings, survivors treated with chemotherapy only were more likely to demonstrate headstrong behaviour (155 [19%] of 752 survivors vs 88 [14%] of 610 siblings, p=0·010), inattention-hyperactivity (15 [19%] vs 86 [14%], p<0·0001), social withdrawal (142 [18%] vs 75 [12%], p=0·002), and had higher rates of learning problems (191 [28%] vs 76 [14%], p<0·0001). In multivariable models among survivors, increased cumulative dose of intravenous methotrexate (ie, >4·3 g/m 2 ) conferred increased risk of inattention-hyperactivity (relative risk [RR] 1·53, 95% CI 1·13-2·08). Adolescent survivors with cognitive or behaviour problems and those with learning problems were less likely to graduate from college as young adults than adolescent survivors without cognitive or behaviour problems. Although modern therapy for childhood ALL has eliminated the use of cranial radiation therapy, adolescent survivors treated with chemotherapy

Understanding parenting concerns in cancer survivors with minor and young-adult children.

PubMed

Inhestern, Laura; Bultmann, Johanna Christine; Beierlein, Volker; Möller, Birgit; Romer, Georg; Koch, Uwe; Bergelt, Corinna

2016-08-01

Parents with cancer are concerned about the impact of their disease on their children. However, parenting concerns and associated factors in cancer survivors have not previously been analyzed. The purpose of this study is to examine parenting concerns and to test a path model for understanding parenting concerns in cancer survivors. In a cross-sectional study, a total of 1416 parents with cancer (mean age 47.5years, 74% women) having minor or young-adult children were recruited through two cancer registries. Parenting concerns were assessed using the Parenting Concerns Questionnaire. Structural equation modeling (SEM) was used to analyze the associations between social support, parenting confidence, emotional distress, family functioning and parenting concerns. Mothers reported higher total parenting concerns than fathers (p<0.001). We observed strong effects of emotional distress and parenting confidence on parenting concerns. Family dysfunctioning was associated with lower concerns. An indirect association between social support and parenting concerns was identified. Parenting concerns in cancer survivors display the need for interventions and after care programs that focus on affected families with minor and young adult children. The results of the structural path model illustrate the associations between psychological and interactional factors. Supporting parents with cancer in their parenting confidence and strengthen social support and family functioning may not only reduce the long-term burden on the parents themselves but also the burden on the entire family. Copyright © 2016 Elsevier Inc. All rights reserved.

Birth Outcomes Among Adolescent and Young Adult Cancer Survivors.

PubMed

Anderson, Chelsea; Engel, Stephanie M; Mersereau, Jennifer E; Black, Kristin Z; Wood, William A; Anders, Carey K; Nichols, Hazel B

2017-08-01

Cancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors. To compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis. The North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery. Prevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score. Overall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score (<7) did not differ significantly between groups. Live births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.

Self-Perceived Physical Attractiveness in Relation to Scars Among Adolescent and Young Adult Cancer Survivors: A Population-Based Study.

PubMed

Olsson, Maria; Enskär, Karin; Steineck, Gunnar; Wilderäng, Ulrica; Jarfelt, Marianne

2018-06-01

Cancer treatment may result in various effects that last long after treatment has been concluded. The purpose of this study was to explore to what extent scars affect adolescents and young adults postcancer treatment. In this population-based study, a study-specific questionnaire was developed by a method used in several previous investigations carried out by our research group, Clinical Cancer Epidemiology. Question development involved expert validation by professionals from oncology units, midwives, epidemiologists, and statisticians. The questionnaire was developed in collaboration with adolescent and young adult cancer survivors. The topics covered in the questionnaire were as follows: psychosocial health, body image and sexuality, fertility, education, work, and leisure. The web-based questionnaire was sent to teenage and young adult cancer survivors and matched controls in Sweden. In this study, the relative risk of feeling less attractive due to scars was higher both for female cancer survivors RR 1.48, CI 1.05-2.08 and male cancer survivors RR 1.90, CI 1.15-3.13 compared to controls. The feeling of attractiveness was negatively related to the size of scars in both cancer and control groups. In a logistic regression analysis, significant associations were found between age, education, exercise, depression, and the feeling of low attractiveness due to scars. The results of this study provide a basis for care interventions for teenage and young adult cancer patients during and after cancer treatment. Further research is needed on care interventions to reduce, if possible, the impact of scars.

Neurocognitive and Family Functioning and Quality of Life Among Young Adult Survivors of Childhood Brain Tumors

PubMed Central

Hocking, Matthew C.; Hobbie, Wendy L.; Deatrick, Janet A.; Lucas, Matthew S.; Szabo, Margo M.; Volpe, Ellen M.; Barakat, Lamia P.

2012-01-01

Many childhood brain tumor survivors experience significant neurocognitive late effects across multiple domains that negatively affect quality of life. A theoretical model of survivorship suggests that family functioning and survivor neurocognitive functioning interact to affect survivor and family outcomes. This paper reviews the types of neurocognitive late effects experienced by survivors of pediatric brain tumors. Quantitative and qualitative data from three case reports of young adult survivors and their mothers are analyzed according to the theoretical model and presented in this paper to illustrate the importance of key factors presented in the model. The influence of age at brain tumor diagnosis, family functioning, and family adaptation to illness on survivor quality of life and family outcomes are highlighted. Future directions for research and clinical care for this vulnerable group of survivors are discussed. PMID:21722062

Adolescent and Young Adult Cancer Survivors' Perspectives on Their Internet Use for Seeking Information on Healthy Eating and Exercise.

PubMed

Mooney, Ryan; Samhouri, Mahasen; Holton, Avery; Devine, Katie A; Kirchhoff, Anne C; Wright, Jennifer; Wu, Yelena P

2017-06-01

To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors.

Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer.

PubMed

Zebrack, Brad

2009-09-01

Thirty years of psychosocial oncology research have detailed issues having significant impact in both pediatric and adult populations; yet, few studies have captured the subtle and unique ways in which cancer impacts, disrupts and in some instances promotes the growth and development of adolescents and young adults with a cancer history. This paper reports the initiation of an effort to assess the impact of cancer in this young survivor population through the development of a new Impact of Cancer (IOC) instrument. 64 young adults aged 18-39 years and treated for a pediatric malignancy participated in face-to-face interviews and responded to questions prompting them to describe the impact of cancer on their physical, psychological, social and spiritual/existential well-being. Intent of analysis was to organize data into meaningful sub-categories from which to develop a set of candidate survey items that assess a range of problems, issues and changes that long-term survivors ascribe to their cancer experience. A total of 82 candidate survey items represented content across 11 topical domains including Body, Health and Body image, Treatment and Health Care, Having Children, Identity, Talking and Thinking About Cancer, Meaning of Cancer, Memory and Thinking, Finances, Family and Relationships, Socializing, and Life Goals. Assessing the instrument's psychometric properties in a large representative group of young cancer survivors is the next step for further development of such a measure. Once established, a valid and reliable Impact of Cancer instrument has the potential for identifying salient survivorship issues in a clinical setting.

Dental Care for Survivors of Adolescent and Young Adult Cancer: Special Considerations

PubMed Central

Fair, Douglas; Wright, Jennifer; Kirchhoff, Anne C.

2016-01-01

Purpose: Oral health is important for quality of life, but may be undermanaged for survivors of cancer. We examine dental care use and barriers among long-term survivors of adolescent and young adult (AYA) cancer in comparison to individuals without a history of cancer. Methods: The 2008–2012 Medical Expenditure Panel Survey (MEPS) identified 1216 individuals diagnosed with cancer at AYA ages (15–39 years), who were at least 5 years from diagnosis. A comparison group was matched using age, sex, and other factors. We evaluated self-reported dental visits in the previous 12 months, and inability and delay in receiving necessary dental care among survivors and the comparison group. Furthermore, individual factors associated with dental care use were identified using multivariable logistic regressions. Results: Of survivors, 60.86% reported no dental visits in the previous year compared to 51.96% of the comparison individuals (p < 0.001). Survivors were more likely to report inability (10.71% vs. 6.29%, p = 0.001) and delay (8.12% vs. 4.45%, p = 0.001) in getting necessary dental care than the comparison group. Notably, survivors without dental insurance were more likely to report inability and delay. Female survivors were more likely to use dental care than males (odds ratio = 1.76, 95% confidence interval 1.15–2.71, p = 0.01). Hispanic survivors, those diagnosed at younger ages, and uninsured survivors were less likely to have at least one dental visit. Conclusion: Survivors of AYA cancer need timely surveillance to manage late effects, including dental complications. Yet, these survivors, particularly those who are uninsured, delay dental care more often than individuals from the general population. Survivor-specific interventions are needed to reduce dental care barriers. PMID:27028878

Lifestyle behavior interventions delivered using technology in childhood, adolescent, and young adult cancer survivors: A systematic review.

PubMed

Kopp, Lisa M; Gastelum, Zachary; Guerrero, Christian H; Howe, Carol L; Hingorani, Pooja; Hingle, Melanie

2017-01-01

Childhood, adolescent, and young adult cancer survivors demonstrate increased cardio-metabolic risk factors, which are amenable to lifestyle changes. The use of technology to impact lifestyle change expands previously limited intervention access, yet little is known about its use. We summarized lifestyle interventions for survivors delivered using technology, finding six studies, primarily targeting physical activity. Study samples were small and durations ranged from 5 to 16 weeks and outcomes modest. Participants were older, white, survivors of leukemia or brain tumors, and the majority received Web-based interventions. Study quality was moderate. Few technology-based interventions have been developed, suggesting an area of opportunity for survivors. © 2016 Wiley Periodicals, Inc.

Adolescent and Young Adult Cancer Survivors' Perspectives on Their Internet Use for Seeking Information on Healthy Eating and Exercise

PubMed Central

Mooney, Ryan; Samhouri, Mahasen; Holton, Avery; Devine, Katie A.; Kirchhoff, Anne C.; Wright, Jennifer

2017-01-01

Purpose: To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. Methods: Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. Results: Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. Conclusion: Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors. PMID:27845844

Screening young adult cancer survivors for distress with the Distress Thermometer: Comparisons with a structured clinical diagnostic interview.

PubMed

Recklitis, Christopher J; Blackmon, Jaime E; Chang, Grace

2016-01-15

The validity of the Distress Thermometer (DT) as a screen for psychological distress in young adult cancer survivors was assessed by comparing it with the results of a psychiatric diagnostic interview, the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) (SCID), to evaluate the accuracy of the DT and identify optimal cutoff scores for this population. A total of 247 survivors aged 18 to 40 years completed the DT and SCID. Based on the SCID, participants were classified as having: 1) ≥ 1 SCID diagnoses; 2) significant symptoms, but no SCID diagnosis; or 3) no significant SCID symptoms. Receiver operating characteristic analyses determined the sensitivity and specificity of all possible DT cutoff scores for detecting survivors with a SCID diagnosis, and subsequently for survivors with significant SCID symptoms or a SCID diagnosis. The recommended DT cutoff score of ≥5 failed to identify 31.81% of survivors with a SCID diagnosis (sensitivity of 68.18% and specificity of 78.33%), and 32.81% of survivors with either significant SCID symptoms or a SCID diagnosis. No alternative DT cutoff score met the criteria for acceptable sensitivity (≥85%) and specificity (≥75%). The DT does not reliably identify young adult cancer survivors with psychiatric problems identified by a "gold standard" structured psychiatric interview. Therefore, the DT should not be used as a stand-alone psychological screen in this population. Cancer 2016;122:296-303. © 2015 American Cancer Society. © 2015 American Cancer Society.

Predictors of Posttraumatic Stress Symptoms Among Adolescent and Young Adult Survivors of Childhood Cancer: Importance of Monitoring Survivors' Experiences of Family Functioning.

PubMed

Kamibeppu, Kiyoko; Murayama, Shiho; Ozono, Shuichi; Sakamoto, Naoko; Iwai, Tsuyako; Asami, Keiko; Maeda, Naoko; Inada, Hiroko; Kakee, Naoko; Okamura, Jun; Horibe, Keizo; Ishida, Yasushi

2015-11-01

The purpose of this study was to identify factors associated with posttraumatic stress symptoms (PTSS) among Japanese long-term childhood cancer survivors (CCSs). Subjects comprised 185 adolescent and young adult (AYA) CCSs who completed anonymous self-report questionnaires. Attending physicians also completed an anonymous disease/treatment data sheet. Mean age of survivors was approximately 8 years at diagnosis and 23 years at participation. Multiple regression analysis showed that family functioning, satisfaction with social support, being female, and interactions between family functioning and gender and age at the time of diagnosis were associated with PTSS among survivors. This study revealed family functioning as the most predictive factor of PTSS among AYA CCSs in Japan. Even when the survivor may have unchangeable risk factors, family functioning can potentially moderate the effects on PTSS. Thus, it is crucial for health professionals to carefully monitor and attend to survivors' experiences of family functioning to mitigate PTSS. © The Author(s) 2015.

Marriage and divorce among young adult cancer survivors.

PubMed

Kirchhoff, Anne C; Yi, Jaehee; Wright, Jennifer; Warner, Echo L; Smith, Ken R

2012-12-01

We examined marital outcomes among cancer survivors diagnosed during early adulthood from the 2009 Behavioral Risk Factor Surveillance System dataset. Eligible participants were ages 20-39 years. Of the 74,433 eligible, N = 1,198 self-reported a cancer diagnosis between the ages of 18 and 37, were ≥2 years past diagnosis, and did not have non-melanoma skin cancer. The remaining N = 67,063 were controls. Using generalized linear models adjusted for age, gender, race, and education, we generated relative risks (RR) and 95 % confidence intervals (95 % CI) to examine survivor status on indicators of ever married, currently married, and divorced/separated. Survivors were slightly older than controls [33.0 (SD = 3.8) vs. 30.0 (SD = 4.0); p < 0.001]. Average time since diagnosis was 7.4 years. Most common diagnoses were cervical (females; 45 %) and non-Hodgkin lymphoma (males; 20 %). Survivors were less likely to be currently married than controls (58 % vs. 64 %; RR = 0.92, 95 % CI 0.85-0.99). Among ever married participants, survivors were at an increased risk of divorce/separation than controls (18 % vs. 10 %; RR = 1.77, 95 % CI 1.43-2.19). Divorce/separation risk persisted for female survivors (RR 1.83, 95 % CI 1.49-2.25), survivors ages 20-29 (RR 2.57, 95 % CI 1.53-4.34), and survivors ages 30-39 (RR 1.62, 95 % CI 1.29-2.04). The emotional and financial burdens of cancer may lead to marital stress for younger cancer survivors. Young survivors may face a higher risk of divorce; support systems are needed to assist them in the years following diagnosis.

The association of metacognitive beliefs with emotional distress and trauma symptoms in adolescent and young adult survivors of cancer.

PubMed

Fisher, Peter L; McNicol, Kirsten; Cherry, Mary Gemma; Young, Bridget; Smith, Ed; Abbey, Gareth; Salmon, Peter

2018-04-03

Adolescent and young adults who have survived cancer are at an increased risk of psychological distress. This study investigated whether metacognitive beliefs are associated with emotional distress and trauma symptoms in adolescent and young adult (AYA) survivors of cancer independent of known covariates, including current physical health difficulties. Cross-sectional survey using multiple self-report measures. Eighty-seven AYA survivors of cancer were recruited from follow-up appointments at an oncology unit and completed self-report questionnaires measuring emotional distress, posttraumatic stress symptoms, metacognitive beliefs, demographic information, and current physical health difficulties. Data were analysed using correlational and hierarchical multiple regression analyses. Metacognitive beliefs explained an additional 50% and 41% of the variance in emotional distress and posttraumatic stress symptoms, respectively, after controlling for known covariate effects, including current physical health difficulties. Conclusions/Implications for Psychosocial Providers or Policy: The metacognitive model of psychopathology is potentially applicable to AYA survivors of cancer who present with elevated general distress and/or posttraumatic stress symptoms. Prospective studies are required to determine whether metacognitive beliefs and processes have a causal role in distress in AYA survivors of cancer.

Quality of life, self-esteem and worries in young adult survivors of childhood cancer.

PubMed

Langeveld, N E; Grootenhuis, M A; Voûte, P A; de Haan, R J; van den Bos, C

2004-12-01

This study assessed quality of life, self-esteem and worries in young adult survivors of childhood cancer compared to a group of young adults with no history of cancer. The impact of demographic, medical and treatment factors and self-esteem on survivors' quality of life and worries was studied. Participants were 400 long-term survivors (LTS) of childhood cancer (age range 16-49 years, 45% female) who had completed treatment an average of 16 years previously and 560 persons (age range 16-53 years, 55% female) with no history of cancer. All participants completed the MOS-24 (Medical Outcome Study Scale), a Worry questionnaire consisting of three scales (cancer-specific concerns, general health concerns, present and future concerns), and the Rosenberg Self-Esteem Scale. Small to moderate differences were found in mean MOS-24 scores between the LTS group and controls (range effect sizes -0.36-0.22). No significant difference was found in the mean self-esteem scores between LTS and controls. Female LTS had more cancer-specific concerns than male LTS. In several related areas of general health, self-image and dying, the LTS group reported less worries than controls, but LTS worried significantly more about their fertility, getting/changing a job and obtaining insurance's. Multiple linear regression analysis revealed that female gender, unemployment, severe late effects/health problems and a low self-esteem were predictors of worse quality of life in survivors. In addition, age at follow-up, unemployment, years since completion of therapy and a low self-esteem were associated with a higher degree of survivors' worries. Quality of life and the level of self-esteem in LTS of childhood cancer is not different from their peers. Although many LTS worried not more or even less about health issues than their peers, they often are concerned about some present and future concerns. The investigated factors could explain poor quality of life and worries only to a limited extent

Risk of Cerebrovascular Events in 178 962 Five-Year Survivors of Cancer Diagnosed at 15 to 39 Years of Age: The TYACSS (Teenage and Young Adult Cancer Survivor Study).

PubMed

Bright, Chloe J; Hawkins, Mike M; Guha, Joyeeta; Henson, Katherine E; Winter, David L; Kelly, Julie S; Feltbower, Richard G; Hall, Marlous; Cutter, David J; Edgar, Angela B; Frobisher, Clare; Reulen, Raoul C

2017-03-28

Survivors of teenage and young adult cancer are at risk of cerebrovascular events, but the magnitude of and extent to which this risk varies by cancer type, decade of diagnosis, age at diagnosis, and attained age remains uncertain. This is the largest-ever cohort study to evaluate the risks of hospitalization for a cerebrovascular event among long-term survivors of teenage and young adult cancer. The population-based TYACSS (Teenage and Young Adult Cancer Survivor Study) (N=178,962) was linked to Hospital Episode Statistics data for England to investigate the risks of hospitalization for a cerebrovascular event among 5-year survivors of cancer diagnosed when 15 to 39 years of age. Observed numbers of first hospitalizations for cerebrovascular events were compared with that expected from the general population using standardized hospitalization ratios (SHRs) and absolute excess risks per 10 000 person-years. Cumulative incidence was calculated with death considered a competing risk. Overall, 2782 cancer survivors were hospitalized for a cerebrovascular event-40% higher than expected (SHR=1.4, 95% confidence interval, 1.3-1.4). Survivors of central nervous system (CNS) tumors (SHR=4.6, 95% confidence interval, 4.3-5.0), head and neck tumors (SHR=2.6, 95% confidence interval, 2.2-3.1), and leukemia (SHR=2.5, 95% confidence interval, 1.9-3.1) were at greatest risk. Males had significantly higher absolute excess risks than females (absolute excess risks =7 versus 3), especially among head and neck tumor survivors (absolute excess risks =30 versus 11). By 60 years of age, 9%, 6%, and 5% of CNS tumor, head and neck tumor, and leukemia survivors, respectively, had been hospitalized for a cerebrovascular event. Beyond 60 years of age, every year, 0.4% of CNS tumor survivors were hospitalized for a cerebral infarction (versus 0.1% expected), whereas at any age, every year, 0.2% of head and neck tumor survivors were hospitalized for a cerebral infarction (versus 0

A Diversified Recruitment Approach Incorporating Social Media Leads to Research Participation Among Young Adult-Aged Female Cancer Survivors.

PubMed

Gorman, Jessica R; Roberts, Samantha C; Dominick, Sally A; Malcarne, Vanessa L; Dietz, Andrew C; Su, H Irene

2014-06-01

Purpose: Cancer survivors in their adolescent and young adult (AYA) years are an understudied population, possibly in part because of the high effort required to recruit them into research studies. The aim of this paper is to describe the specific recruitment strategies used in four studies recruiting AYA-aged female cancer survivors and to identify the highest yielding approaches. We also discuss challenges and recommendations. Methods: We recruited AYA-aged female cancer survivors for two studies conducted locally and two conducted nationally. Recruitment strategies included outreach and referral via: healthcare providers and clinics; social media and the internet; community and word of mouth; and a national fertility information hotline. We calculated the yield of each recruitment approach for the local and national studies by comparing the number that participated to the number of potential participants. Results: We recruited a total of 534 participants into four research studies. Seventy-one percent were diagnosed as young adults and 61% were within 3 years of their cancer diagnosis. The highest-yielding local recruitment strategy was healthcare provider and clinic referral. Nationally, social media and internet outreach yielded the highest rate of participation. Overall, internet-based recruitment resulted in the highest number and yield of participants. Conclusion: Our results suggest that outreach through social media and the internet are effective approaches to recruiting AYA-aged female cancer survivors. Forging collaborative relationships with survivor advocacy groups' members and healthcare providers also proved beneficial.

A Diversified Recruitment Approach Incorporating Social Media Leads to Research Participation Among Young Adult-Aged Female Cancer Survivors

PubMed Central

Gorman, Jessica R.; Roberts, Samantha C.; Dominick, Sally A.; Malcarne, Vanessa L.; Dietz, Andrew C.

2014-01-01

Purpose: Cancer survivors in their adolescent and young adult (AYA) years are an understudied population, possibly in part because of the high effort required to recruit them into research studies. The aim of this paper is to describe the specific recruitment strategies used in four studies recruiting AYA-aged female cancer survivors and to identify the highest yielding approaches. We also discuss challenges and recommendations. Methods: We recruited AYA-aged female cancer survivors for two studies conducted locally and two conducted nationally. Recruitment strategies included outreach and referral via: healthcare providers and clinics; social media and the internet; community and word of mouth; and a national fertility information hotline. We calculated the yield of each recruitment approach for the local and national studies by comparing the number that participated to the number of potential participants. Results: We recruited a total of 534 participants into four research studies. Seventy-one percent were diagnosed as young adults and 61% were within 3 years of their cancer diagnosis. The highest-yielding local recruitment strategy was healthcare provider and clinic referral. Nationally, social media and internet outreach yielded the highest rate of participation. Overall, internet-based recruitment resulted in the highest number and yield of participants. Conclusion: Our results suggest that outreach through social media and the internet are effective approaches to recruiting AYA-aged female cancer survivors. Forging collaborative relationships with survivor advocacy groups' members and healthcare providers also proved beneficial. PMID:24940529

Adolescent and Young Adult Cancer Survivors' Valuation of Post-Treatment Recommended Care.

PubMed

Kaul, Sapna; Smits-Seemann, Rochelle R; Zamora, Eduardo R; Spraker-Perlman, Holly; Boyle, Kevin J; Kirchhoff, Anne C

2017-03-01

Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treatment care using focus groups and a willingness to pay (WTP) survey. WTP, a measure of value, indicates the dollar amount individuals are willing to pay to use a service. Participants were recruited through the Utah Cancer Registry. N = 28 survivors diagnosed with cancer at ages 15-39 and currently aged ≥18 participated in focus groups, and N = 4 in phone interviews (participation rate = 50%). All participants responded to a demographic survey and WTP questions based on one-time and monthly payments for annual visits. Focus group participants responded to an open-ended question on the value of follow-up care. Interval regressions identified factors associated with WTP. Qualitative analysis summarized themes for the open-ended question. Focus group participants reported valuing follow-up care as it brings peace of mind and helps them manage their health. Yet, 38% reported not having a cancer-related visit in the previous year. Only 27% and 43% of survivors agreed to pay any one-time and monthly payments, respectively. The monthly payment mean WTP was $41 (95% confidence interval [CI]: 31-84), equating to $494 annually, which is greater than the mean WTP for one-time payment ($362, 95% CI: 293-432, p < 0.001), suggesting that survivors may prefer monthly payments. Several factors, including being female and in better health, predicted higher WTP. Many AYA cancer survivors report not visiting their doctors annually for post-treatment care despite verbally valuing care. Models that demonstrate high quality and distribute costs over time should be evaluated to encourage survivors to receive recommended care.

Talking About Cancer Among Adolescent and Young Adult Cancer Patients and Survivors: A Systematic Review.

PubMed

Janin, Madeleine Marie Hortense; Ellis, Sarah Jane; Wakefield, Claire Elizabeth; Fardell, Joanna Elizabeth

2018-05-31

Communication plays an essential role in social relationships. Yet it is unclear how young cancer patients and survivors communicate with peers, and whether this contributes to increased rates of social difficulties. We aimed to analyze how childhood cancer patients and survivors communicate about their cancer with family and peers. We systematically searched Medline, Embase and PsycINFO for peer-reviewed studies on cancer-related communication among patients and survivors (any cancer, <25 years at diagnosis). We screened 309 articles, and included 6 qualitative studies. Studies were assessed using a standardized quality assessment tool. Participants were adolescents and young adults, 16-34 years of age at the time of study. Included studies related to different forms of cancer-related communication, benefits, and challenges. We found that cancer-related communication was an individual, complex process, addressing medical, existential, and emotional aspects of cancer. Communication occurred on a spectrum with variation in who information was shared with, as well as differences in the frequency at which information was shared, and the amount and type of information shared. Communication often occurred at uncertain or significant times for participants, or was initiated by others. Communicating about cancer yielded benefits as a coping strategy, prompted social support, and appeared central to significant relationships. Barriers to communication, including fear of stigma and poor peer reactions, hindered willingness to disclose. The number of studies analyzing this topic was limited. Communicating about cancer is a significant yet complex process for young patients and survivors. Further research is needed to complement the existing literature and to establish the evidence base for the development of future effective interventions promoting social and communication skills.

Excess mortality among 10-year survivors of classical Hodgkin lymphoma in adolescents and young adults.

PubMed

Xavier, Ana C; Epperla, Narendranath; Taub, Jeffrey W; Costa, Luciano J

2018-02-01

Adolescents and young adults (AYA) surviving classical Hodgkin lymphoma (cHL) risk long term fatal treatment-related toxicities. We utilized the Surveillance, Epidemiology and End Results (SEER) program to compare excess mortality rate (EMR-observed minus expected mortality) for 10-year survivors of AYA cHL diagnosed in 1973-1992 and 1993-2003 eras. The 15-year EMR reduced from 4.88% to 2.19% while the 20-year EMR reduced from 9.46% to 4.07% between eras. Survivors of stages 1-2 had lower EMR than survivors of stages 3-4 cHL in the 1993-2003 but not in the 1973-1992 era. There was an overall decline in risk of death between 10 and 15 years from diagnosis, driven mostly by second neoplasms and cardiovascular mortality. Despite reduction in fatal second neoplasms and cardiovascular disease with more current therapy, long term survivors of AYA cHL still have a higher risk of death than the general population highlighting the need for safer therapies. © 2017 Wiley Periodicals, Inc.

Health-Related Quality of Life of Adolescent and Young Adult Survivors of Central Nervous System Tumors: Identifying Domains From a Survivor Perspective.

PubMed

Kuhlthau, Karen; Luff, Donna; Delahaye, Jennifer; Wong, Alicia; Yock, Torunn; Huang, Mary; Park, Elyse R

2015-01-01

This article uses qualitative methods to describe the domains of health-related quality of life (HRQoL) that adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors identify as important. Survivors clearly attributed aspects of their current HRQoL to their disease or its treatment. We identified 7 key domains of AYA CNS tumor survivorship: physical health, social well-being, mental health, cognitive functioning, health behaviors, sexual and reproductive health, and support systems. Although most aspects of HRQoL that survivors discussed represented new challenges, there were several areas where survivors pointed out positive outcomes. There is a need for a HRQoL tool designed for this population of survivors, given their unique treatment and survivorship experience. Aspects of HRQoL related to cognition, sexual and reproductive health, health behaviors, and support systems are not typically included in generic HRQoL tools but should be assessed for this population. Developing HRQoL measurement instruments that capture the most significant aspects of HRQoL will improve the ability to track HRQoL in AYA CNS tumor survivors and in the long-term management of common sequelae from CNS tumors and their treatments. © 2015 by Association of Pediatric Hematology/Oncology Nurses.

For Many Young Cancer Survivors, Late Effects Pose Lasting Problems

Cancer.gov

Many survivors of adolescent and young adult cancers are unaware of or underestimate their heightened risk for late health effects. Efforts are underway to raise awareness and increase monitoring and surveillance.

Associates of Engagement in Adult-Oriented Follow-Up Care for Childhood Cancer Survivors.

PubMed

Szalda, Dava; Piece, Lisa; Brumley, Lauren; Li, Yimei; Schapira, Marilyn M; Wasik, Monika; Hobbie, Wendy L; Ginsberg, Jill P; Schwartz, Lisa A

2017-02-01

Understanding how to predict appropriate uptake of adult-oriented medical care is important for adult patients with pediatric-onset chronic health conditions with continued health vulnerability. We examined associates of engagement in adult survivors of childhood cancer following transfer to adult-oriented care. Adult survivors of childhood cancer (N = 80), within 1-5 years post transfer from pediatric to adult-oriented follow-up care, completed assessments of engagement with recommended adult-oriented follow-up care and psychosocial and transition readiness measures. Measures were validated with adolescent and young adults and/or intended to measure readiness to transition to adult care. Earlier age at diagnosis, parental involvement in health care decision-making, higher motivation, and increased comfort speaking to providers about health concerns were significantly associated with attendance at adult-oriented follow-up care visits. Associates of engagement in adult care are complex, representing social-ecological variables. Current measures of transition readiness or adolescent and young adult health-related measures may not adequately capture the associates of engagement in care or identify targets of intervention to promote successful transfer of care. Identifying patients at risk for loss to follow-up will be useful to design interventions for young adult survivors of childhood cancer and other young adults with pediatric-onset chronic conditions who require ongoing adult-oriented care. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Patterns of family management for adolescent and young adult brain tumor survivors.

PubMed

Deatrick, Janet A; Barakat, Lamia P; Knafl, George J; Hobbie, Wendy; Ogle, Sue; Ginsberg, Jill P; Fisher, Michael J; Hardie, Thomas; Reilly, Maureen; Broden, Elizabeth; Toth, Jennifer; SanGiacomo, Nicole; Knafl, Kathleen A

2018-04-01

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Impact of obesity on body image dissatisfaction and social integration difficulty in adolescent and young adult burn injury survivors

PubMed Central

Chondronikola, Maria; Sidossis, Labros S.; Richardson, Lisa M.; Temple, Jeff R.; van den Berg, Patricia A.; Herndon, David N.; Meyer, Walter J.

2012-01-01

Objective Burn injury deformities and obesity have been associated with social integration difficulty and body image dissatisfaction. However, the combined effects of obesity and burn injury in social integration difficulty and body image dissatisfaction are unknown. Methods Adolescent and young adults burn injury survivors were categorized as normal weight (n=47) or overweight and obese (n=21). Burn-related and anthropometric information was obtained from patients' medical records, while validated questionnaires were used to assess the main outcomes and possible confounders. Analysis of covariance and multiple linear regressions were performed to evaluate the objectives of this study. Results Obese and overweight burn injury survivors did not experience increased body image dissatisfaction (12 ± 4.3 vs 13.1 ± 4.4, p = 0.57) or social integration difficulty (17.5 ± 6.9 vs 15.5 ± 5.7, p=0.16) compared to normal weight burn injury survivors. Weight status was not a significant predictor of social integration difficulty or body image dissatisfaction (p=0.19 and p=0.24, respectively). However, mobility limitations predicted greater social integration difficulty (p=0.005) and body image dissatisfaction (p<0.001), while higher weight status at burn was a borderline significant predictor of body image dissatisfaction (p=0.05). Conclusions Obese and overweight adolescents and young adults, who sustained a major burn injury as children, do not experience greater social integration difficulty and body image dissatisfaction compared to normal weight burn injury survivors. Mobility limitations and higher weight status at burn are likely more important factors affecting the long-term social integration difficulty and body image dissatisfaction of these young people. PMID:23292577

Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

PubMed

Oeffinger, Kevin C; Mertens, Ann C; Hudson, Melissa M; Gurney, James G; Casillas, Jacqueline; Chen, Hegang; Whitton, John; Yeazel, Mark; Yasui, Yutaka; Robison, Leslie L

2004-01-01

We wanted to determine the type of outpatient medical care reported by young adult survivors of childhood cancer and to examine factors associated with limited medical care. We analyzed data from 9,434 adult childhood cancer survivors enrolled in a retrospective cohort study who completed a baseline questionnaire. They had a mean age of 26.8 years (range 18 to 48 years), 47% were female, 12% were minorities, and 16% were uninsured. Four self-reported outcome measures were used to determine outpatient medical care in a 2-year period: general contact with the health care system, general physical examination, cancer-related medical visit, and medical visit at a cancer center. Eighty-seven percent reported general medical contact, 71.4% a general physical examination, 41.9% a cancer-related visit, and 19.2%, a visit at a cancer center. Factors associated with not reporting a general physical examination, a cancer-related visit, or a cancer center visit included no health insurance (odds ratio [OR] = 2.34; 95% confidence interval [CI], 1.97-2.77), male sex (OR = 1.65; 95% CI, 1.44-1.88), lack of concern for future health (OR = 1.57; 95% CI, 1.36-1.82), and age 30 years or older in comparison with those 18 to 29 years (OR = 1.56; 95% CI, 1.35-1.81). The likelihood of reporting a cancer-related visit or a general physical examination decreased significantly as the survivor aged or the time from cancer diagnosis increased. This trend was also significant for those treated with therapies associated with substantial risk for cardiovascular disease or breast cancer. Primary care physicians provide health care for most of this growing high-risk population. To optimize risk-based care, it is critical that cancer centers and primary care physicians develop methods to communicate effectively and longitudinally.

“Psychosocial Interventions for Cancer Survivors, Caregivers and Family Members—One Size Does Not Fit All: My Perspective as a Young Adult Survivor, Advocate and Oncology Social Worker” a personal reflection by Mary Grace Bontempo - Office of Cancer Survivorship

Cancer.gov

“Psychosocial Interventions for Cancer Survivors, Caregivers and Family Members—One Size Does Not Fit All: My Perspective as a Young Adult Survivor, Advocate and Oncology Social Worker” a personal reflection by Mary Grace Bontempo page

Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls.

PubMed

Kazak, Anne E; Derosa, Branlyn Werba; Schwartz, Lisa A; Hobbie, Wendy; Carlson, Claire; Ittenbach, Richard F; Mao, Jun J; Ginsberg, Jill P

2010-04-20

PURPOSE The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes. PATIENTS AND METHODS AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems. Results There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs. CONCLUSION AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.

Memories of Parent Behaviors and Adult Attachment in Childhood Cancer Survivors.

PubMed

Lehmann, Vicky; Hagedoorn, Mariët; Gerhardt, Cynthia A; Keim, Madelaine C; Guthrie, Lory; Sanderman, Robbert; Tuinman, Marrit A

2017-03-01

Childhood cancer is stressful for the entire family. Preoccupation and anxiety surrounding the child's illness may result in parents of children with cancer being overprotective or less emotionally responsive toward their children. Such parenting in response to a negative life event like childhood cancer may cause survivors to be more insecurely attached than healthy peers, which could have downstream effects on survivors' romantic relationships later in life. Therefore, we examined survivors' perspectives on parent behaviors, adult attachment, and marital status among adult survivors of childhood cancer relative to controls. One hundred forty-nine young adult survivors and 149 matched controls (M age  = 28, range 20-40) indicated their relationship status (single vs. partnered) and completed standardized questionnaires assessing memories of upbringing (warmth, overprotection, rejection) and adult attachment (avoidance, anxiety). Adult survivors of childhood cancer remembered mothers and fathers as emotionally warmer (d = 0.53/0.30), and mothers as less rejecting than controls (d = 0.30). Adult attachment was overall similar between survivors and controls, but partnered survivors reported particularly low attachment-related anxiety. Childhood cancer was related to higher mother and father warmth, which were associated with lower attachment-related avoidance and in turn with a greater likelihood of being in a relationship. Adult childhood cancer survivors did not remember their parents as overprotective, but reported more positive parenting relative to controls; and similar adult attachment and relationship status. The results were unexpected, but offer novel insights for future prospective studies, which are necessary to better understand psychosocial late effects of childhood cancer.

Health Literacy in Adolescents and Young Adults: Perspectives from Australian Cancer Survivors.

PubMed

Lin, Merry; Sansom-Daly, Ursula M; Wakefield, Claire E; McGill, Brittany C; Cohn, Richard J

2017-03-01

Health literacy is a critical determinant of health and an emerging public health concern. Little is known about the health literacy of adolescents and young adults (AYAs) or about the ability of young patients to communicate health needs and critically evaluate information. We used qualitative methods to investigate the three aspects of health literacy (functional, communicative, and critical) in Australian AYA cancer survivors. Forty Australian AYA cancer survivors, aged 15-29 either at diagnosis or recruitment, participated in semistructured interviews. Participants were asked about sources of information and ability to understand information, communicate questions, and critically evaluate the validity, reliability, and relevancy of information to their situation. Self-reported adherence levels and advice for AYA-specific care was also obtained. Interviews were coded and analyzed for emergent themes using QSR NVivo 10. Almost all AYAs named their doctor as the primary source of information. Most AYAs reported no difficulties with understanding, communicating, or assessing relevancy of information. Conversely, few AYAs reported confidence in assessment of validity and reliability of information. The doctor-patient relationship appeared to be an influential factor in all aspects of health literacy. AYAs frequently reported having a good understanding and communication around health information; however, few AYAs described engaging in critical evaluations of this information. The potential impact of the doctor-patient relationship across several domains of health literacy suggests that more focus could be placed on promoting health literacy at physician, community, and societal levels, in addition to promoting individual skills.

Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions.

PubMed

Wu, Yelena P; Yi, Jaehee; McClellan, Jessica; Kim, Jonghee; Tian, Tian; Grahmann, Bridget; Kirchhoff, Anne C; Holton, Avery; Wright, Jennifer

2015-12-01

This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18-39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. Survivors (M(age) = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors.

Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions

PubMed Central

Yi, Jaehee; McClellan, Jessica; Kim, Jonghee; Tian, Tian; Grahmann, Bridget; Kirchhoff, Anne C.; Holton, Avery; Wright, Jennifer

2015-01-01

Purpose: This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18–39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. Methods: Survivors (Mage = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. Results: In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). Conclusion: AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors. PMID:26697268

Development of the functional social network index for adolescent and young adult cancer survivors.

PubMed

Huang, I-Chan; Jones, Conor M; Brinkman, Tara M; Hudson, Melissa M; Srivastava, D Kumar; Li, Yuelin; Robison, Leslie L; Krull, Kevin R

2018-05-15

To the authors' knowledge, social network status in adolescent and young adult (AYA) cancer survivors has not been adequately studied to date. The authors developed and validated a functional social network index (FSNI) for AYA survivors, and compared its performance with that of 2 traditional indices (density and betweenness centrality). A total of 102 AYA survivors and 102 noncancer controls who were matched for age, sex, and race were recruited from an Internet panel. Each participant reported relationships with up to 25 close friends and/or relatives. The authors developed a FSNI with reported marital status, contact frequency with friends/relatives, available resources for emotional and tangible support, and available resources for physical activity and weight management advice. Linear regression was used to analyze associations between the FSNI and cancer diagnoses, treatments, and coping skills. Based on the FSNI, survivors were found to have more available resources for emotional support (beta [b] = 3.02; P = .003), tangible support (b = 4.17; P<.001), physical activity advice (b = 3.94; P<.001), and weight management advice (b = 4.10; P<.001) compared with noncancer controls. Survivors of lymphoma had the largest FSNI, whereas survivors of central nervous system malignancies had the smallest (b = 2.77; P = .02). A higher FSNI was associated with better coping skills: less denial (b = 0.10; P = .01), using emotional support (b = 0.08; P = .04), using instrumental support (b = 0.12; P<.001), less behavioral disengagement (b = 0.08; P = .04), venting of emotions (b = 0.10; P = .004), positive reframing (b = 0.12; P = .003), planning for the future (b = 0.08; P = .03), and religious engagement (b = 0.16; P<.001). Density and betweenness centrality indices demonstrated neither significant differences in social networks between cancer survivors and controls (all P values >.05) nor significant associations with coping skills (all P values >.05). The FSNI appears

Health Care of Young Adult Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study

PubMed Central

Oeffinger, Kevin C.; Mertens, Ann C.; Hudson, Melissa M.; Gurney, James G.; Casillas, Jacqueline; Chen, Hegang; Whitton, John; Yeazel, Mark; Yasui, Yutaka; Robison, Leslie L.

2004-01-01

BACKGROUND We wanted to determine the type of outpatient medical care reported by young adult survivors of childhood cancer and to examine factors associated with limited medical care. METHODS We analyzed data from 9,434 adult childhood cancer survivors enrolled in a retrospective cohort study who completed a baseline questionnaire. They had a mean age of 26.8 years (range 18 to 48 years), 47% were female, 12% were minorities, and 16% were uninsured. Four self-reported outcome measures were used to determine outpatient medical care in a 2-year period: general contact with the health care system, general physical examination, cancer-related medical visit, and medical visit at a cancer center. RESULTS Eighty-seven percent reported general medical contact, 71.4% a general physical examination, 41.9% a cancer-related visit, and 19.2%, a visit at a cancer center. Factors associated with not reporting a general physical examination, a cancer-related visit, or a cancer center visit included no health insurance (odds ratio [OR] = 2.34; 95% confidence interval [CI], 1.97–2.77), male sex (OR = 1.65; 95% CI, 1.44–1.88), lack of concern for future health (OR = 1.57; 95% CI, 1.36–1.82), and age 30 years or older in comparison with those 18 to 29 years (OR = 1.56; 95% CI, 1.35–1.81). The likelihood of reporting a cancer-related visit or a general physical examination decreased significantly as the survivor aged or the time from cancer diagnosis increased. This trend was also significant for those treated with therapies associated with substantial risk for cardiovascular disease or breast cancer. CONCLUSIONS Primary care physicians provide health care for most of this growing high-risk population. To optimize risk-based care, it is critical that cancer centers and primary care physicians develop methods to communicate effectively and longitudinally. PMID:15053285

Romantic and Sexual Relationships, Body Image, and Fertility in Adolescent and Young Adult Testicular Cancer Survivors: A Review of the Literature

PubMed Central

Carpentier, Melissa Y.; Fortenberry, J. Dennis

2010-01-01

This review presents a summary of existing knowledge regarding the impact of testicular cancer along four broad domains, including romantic and sexual relationships, body image, and fertility. A total of 37 studies were reviewed. Of note, most research consists of older adult testicular cancer survivors, with very little research attention afforded to adolescent and young adult (AYA) survivorship. Relationship status (i.e., partnered versus unpartnered) appears to play an important role as it relates to adjustment outcomes in testicular cancer survivors. In addition, sexual function (and thereby fertility) and body image are also frequently compromised. Implications regarding a lack of developmentally focused research on AYA testicular cancer survivorship are discussed, along with recommendations for new research. PMID:20638003

Social Media: Support for Survivors and Young Adults With Cancer.

PubMed

Walton, AnnMarie L; Albrecht, Tara A; Lux, Lauren; Judge Santacroce, Sheila

2017-10-01

Social media use is ubiquitous among young adults. Young adults with cancer must make important decisions about where, what, and how to share information on social media. Oncology nurses are in a unique position to start conversations about the risks and benefits of social media use. This column aims to review a variety of social media platforms that may be used by young adults with cancer and provide guidance to nurses on initiating open dialogue with young adults about social media usage. 
.

Exercise and Fatigue in Adolescent and Young Adult Survivors of Hodgkin Lymphoma: A Report from the Children's Oncology Group

PubMed Central

Hooke, Mary C.; Friedman, Debra L.; Campbell, Kristin; Withycombe, Janice; Schwartz, Cindy L.; Kelly, Kara; Meza, Jane

2015-01-01

Fatigue is a significant problem for adolescent and young adult (AYA) Hodgkin lymphoma (HL) survivors. The relationship between exercise and fatigue is complex. This study explored the trajectory of and the relationship between exercise and fatigue over 36 months post-therapy in a cohort of 103 AYA-aged HL survivors treated on Children's Oncology Group (COG) study AHOD0031. Descriptive statistics and generalized estimating equations were used in this secondary data analysis. Exercise and fatigue improved over time but were unrelated; amount of exercise at end of therapy predicted amount of exercise at 12 (p = 0.02) and 36 (p = 0.0008) months post-therapy. PMID:26421221

Trajectories of social isolation in adult survivors of childhood cancer.

PubMed

Howard, A Fuchsia; Tan de Bibiana, Jason; Smillie, Kirsten; Goddard, Karen; Pritchard, Sheila; Olson, Rob; Kazanjian, Arminee

2014-03-01

Long-term childhood cancer survivors may be at increased risk for poor social outcomes as a result of their cancer treatment, as well as physical and psychological health problems. Yet, important challenges, namely social isolation, are not well understood. Moreover, survivors' perspectives of social isolation as well as the ways in which this might evolve through young adulthood have yet to be investigated. The purpose of this research was to describe the trajectories of social isolation experienced by adult survivors of a childhood cancer. Data from 30 in-depth interviews with survivors (9 to 38 years after diagnosis, currently 22 to 43 years of age, 60 % women) were analyzed using qualitative, constant comparative methods. Experiences of social isolation evolved over time as survivors grew through childhood, adolescence and young adulthood. Eleven survivors never experienced social isolation after their cancer treatment, nor to the present day. Social isolation among 19 survivors followed one of three trajectories; (1) diminishing social isolation: it got somewhat better, (2) persistent social isolation: it never got better or (3) delayed social isolation: it hit me later on. Knowledge of when social isolation begins and how it evolves over time for different survivors is an important consideration for the development of interventions that prevent or mitigate this challenge. Assessing and addressing social outcomes, including isolation, might promote comprehensive long-term follow-up care for childhood cancer survivors.

Impact of Cancer on Romantic Relationships Among Young Adults: A Systematic Review.

PubMed

Rabin, Carolyn

2018-04-24

The aim of this review was to determine the impact of a cancer diagnosis and history on young adults' ability to initiate and maintain romantic relationships. MedLine and PsycInfo databases were used to identify articles that address dating, romantic relationships, or marriage among 18- to 45-year-old cancer survivors. Twenty-one relevant articles were identified. Findings indicate that young adult cancer survivors struggle with when/how to disclose their cancer history to potential partners, are delayed in initiating their first romantic relationships, have fewer romantic relationships than peers, and are less likely than peers to marry. Young survivors report that their cancer experience impacts their long-term relationships in both positive and negative ways. In summary, young survivors face significant barriers to establishing and maintaining romantic relationships. Those who have difficulty establishing romantic relationships may benefit from receiving additional support from other sources, including family members, friends, and (in some cases) mental health professionals.

Introduction to Adolescent and Young Adult Cancers

Cancer.gov

Cancer researchers, advocates, and a cancer survivor introduce the topic of adolescent and young adult (AYA) cancers, covering distinct aspects of cancer in these patients and research questions to answer.

Mental health among young adult survivors of childhood cancer and their siblings including posttraumatic growth.

PubMed

Kamibeppu, Kiyoko; Sato, Iori; Honda, Misato; Ozono, Shuichi; Sakamoto, Naoko; Iwai, Tsuyako; Okamura, Jun; Asami, Keiko; Maeda, Naoko; Inada, Hiroko; Kakee, Naoko; Horibe, Keizo; Ishida, Yasushi

2010-12-01

Few studies have addressed the mental health status of young adult childhood cancer survivors (CCSs) and their siblings (SIBs). This paper focuses on depression, anxiety, posttraumatic stress symptoms (PTSS), and posttraumatic growth (PTG) among Japanese CCSs and their SIBs. Adolescent and young adult CCSs (n=185), in remission for more than 1 year, their SIBs (n=72), and general controls (CONTs) (n=1,000) completed anonymous self-report questionnaires for depression, anxiety, PTSS, and PTG. The physicians in charge also completed an anonymous disease/treatment data sheet. CCSs were approximately 8 years old at diagnosis and approximately 23 years old at the time of the survey. Their diagnoses included leukemia (57%), lymphoma (12%), and solid tumors (30%). Thirty-eight percent underwent surgery and 25% received stem cell transplantation. No significant differences were found between CCSs and CONTs in terms of depression and anxiety. CCSs had significantly more PTSS and had remarkably greater PTG compared to CONTs. Although no significant differences were found between SIBs and CONTs regarding depression, anxiety, or PTSS, female SIBs exhibited greater PTG compared to female CONTs. To empower CCSs, they should be evaluated periodically regarding PTSS and PTG and should be provided appropriate care and feedback. The fact that the mental health status of young adult SIBs was similar to CONTs at 15 years after their siblings' diagnoses may help reassure parents who worry about mental health among the siblings of an affected child during and after his/her treatment.

Relationship between cancer-related traumatic stress and family milestone achievement in adolescent and young adult survivors of childhood cancer.

PubMed

Tillery, Rachel; Beal, Sarah J; Thompson, Aimee N; Pai, Ahna L H

2018-06-01

Late physical and emotional effects of cancer treatment pose a burden for adolescent and young adult survivors of childhood cancer, including family milestone achievement. This brief report examined links between ongoing cancer-related post-traumatic stress symptoms (CR-PTSS) and family milestone achievement. Survivors (n = 51; M age  = 24.73, SD = 8.20) completed CR-PTSS and family formation questionnaires. Descriptive statistics, univariate parameter-constraints, and correlation analyses examined relations among study variables. Ongoing intrusive thoughts and hyperarousal were negatively linked to family identity development and family achievement. Findings from the present study provide support that ongoing CR-PTSS may be a barrier to family formation. © 2018 Wiley Periodicals, Inc.

Love and load--the lived experience of the mother-child relationship among young adult traumatic brain-injured survivors.

PubMed

Kao, Hsueh-Fen S; Stuifbergen, Alexa K

2004-04-01

This study aims to describe the meaning of the experience of the relationship between young adult traumatic brain injury (TBI) survivors and their mothers using a phenomenological approach. Informants included 9 males and 3 females who were at least 2 years post-TBI, and their mothers, who were their primary caregivers after the injury. TBI informants were 18 to 25 years of age, had motor vehicle accident-induced injury, experienced post-traumatic amnesia longer than 24 hours, and were able to participate in a verbal interview. In addition, all informants currently were living with their mothers, who also participated in this study. Survivors acquired the sense of being abnormal from various sources, including social pressures, dynamics within the family, and intrapersonal changes. Mothers adopted both positive and negative actions during the period of uncertainty and often struggled to balance protecting their children and letting them become independent. They also struggled to maintain harmonious relationships with people both inside and outside of the family. Sometimes, survivors' parents marital relationships were at risk. Health professionals should design more appropriate long-term community interventions to help TBI survivors and their families decrease the burden of injury and the resulting stress, increase survivors' self-esteem, and improve quality of life of both survivors and their families, serving as a foundation for further TBI care.

Alleviating Emotional Distress in Adolescent and Young Adult Cancer Survivors: An Open Trial of Metacognitive Therapy.

PubMed

Fisher, Peter L; McNicol, Kirsten; Young, Bridget; Smith, Ed; Salmon, Peter

2015-06-01

Metacognitive therapy (MCT) is an effective psychological treatment for a range of emotional disorders. However, the applicability of MCT to treating emotional distress in physical health populations has yet to be tested. The present study examined the potential of MCT for alleviating emotional distress in adolescent and young adult cancer (AYAC) survivors. Twelve AYAC survivors, aged 18-23, who had completed acute medical treatment participated in this pilot open trial with 6 months follow-up. Each participant completed a baseline period followed by 8-14 sessions of MCT that targeted perseverative thinking (worry and rumination), attentional control, and metacognitive beliefs. The primary outcome variable was severity of depression and anxiety symptoms as measured by the Hospital Anxiety and Depression Scale (HADS). MCT was associated with large and statistically significant reductions in anxiety, depression, trauma symptoms, and metacognitive beliefs and processes. In the intention-to-treat sample, 50% of participants met standardized criteria for recovery on the HADS at posttreatment and these gains were maintained through to 6-month follow-up. MCT is a promising transdiagnostic approach to treating different forms of emotional distress in AYAC survivors. Further investigation in controlled trials is now warranted.

Exploring Mediators of Physical Activity in Young Adult Cancer Survivors: Evidence from a Randomized Trial of a Facebook-Based Physical Activity Intervention

PubMed Central

Tate, Deborah F.; Mayer, Deborah K.; Allicock, Marlyn; Cai, Jianwen

2015-01-01

Purpose: This study examined the effects of a physical activity (PA) intervention for young adult cancer survivors on changes in self-efficacy, social support, and self-monitoring and determined whether changes in these social cognitive theory constructs mediated the relationship between the intervention and changes in PA. Methods: A 12-week randomized trial compared a Facebook-based intervention (FITNET) aimed at increasing moderate-to-vigorous intensity PA to a Facebook-based self-help comparison group. Young adult cancer survivors (N=86, aged 21–39) were randomly assigned to one of the two groups. Self-report measures of PA and psychosocial variables were collected at baseline and after 12 weeks. Results: The FITNET group reported lower self-efficacy for sticking to exercise (mean change=−0.38; 95% CI: −0.62 to −0.12; p=0.025) and social support from friends on social networking websites (mean change=−0.47; 95% CI: −1.45 to 0.65; p=0.039) relative to the self-help comparison group over time. Changes in social support from friends on social networking websites partially mediated the intervention effects on moderate-to-vigorous PA (mean indirect effect=−22.4; 95% CI: −62.0 to −2.8) in the unexpected direction. Across both groups, social support from friends and self-monitoring were positively associated with changes in moderate-to-vigorous PA. Conclusion: The proposed mediators did not explain the positive effects of the FITNET intervention on mild PA. The lack of significant improvements in psychosocial constructs among FITNET participants may partly explain why the intervention did not increase moderate-to-vigorous PA relative to the self-help comparison group. Future PA interventions with young adult cancer survivors should examine targeting social support from friends and self-monitoring. PMID:25852972

Exploring Mediators of Physical Activity in Young Adult Cancer Survivors: Evidence from a Randomized Trial of a Facebook-Based Physical Activity Intervention.

PubMed

Valle, Carmina G; Tate, Deborah F; Mayer, Deborah K; Allicock, Marlyn; Cai, Jianwen

2015-03-01

This study examined the effects of a physical activity (PA) intervention for young adult cancer survivors on changes in self-efficacy, social support, and self-monitoring and determined whether changes in these social cognitive theory constructs mediated the relationship between the intervention and changes in PA. A 12-week randomized trial compared a Facebook-based intervention (FITNET) aimed at increasing moderate-to-vigorous intensity PA to a Facebook-based self-help comparison group. Young adult cancer survivors (N=86, aged 21-39) were randomly assigned to one of the two groups. Self-report measures of PA and psychosocial variables were collected at baseline and after 12 weeks. The FITNET group reported lower self-efficacy for sticking to exercise (mean change=-0.38; 95% CI: -0.62 to -0.12; p=0.025) and social support from friends on social networking websites (mean change=-0.47; 95% CI: -1.45 to 0.65; p=0.039) relative to the self-help comparison group over time. Changes in social support from friends on social networking websites partially mediated the intervention effects on moderate-to-vigorous PA (mean indirect effect=-22.4; 95% CI: -62.0 to -2.8) in the unexpected direction. Across both groups, social support from friends and self-monitoring were positively associated with changes in moderate-to-vigorous PA. The proposed mediators did not explain the positive effects of the FITNET intervention on mild PA. The lack of significant improvements in psychosocial constructs among FITNET participants may partly explain why the intervention did not increase moderate-to-vigorous PA relative to the self-help comparison group. Future PA interventions with young adult cancer survivors should examine targeting social support from friends and self-monitoring.

Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls.

PubMed

Mader, Luzius; Vetsch, Janine; Christen, Salome; Baenziger, Julia; Roser, Katharina; Dehler, Silvia; Michel, Gisela

2017-03-21

Teenage and young adult (TYA) cancer patients are faced with the diagnosis during a challenging period of psychosocial development that may affect social outcomes in the long term. Therefore, we aimed to: (1) determine differences in social outcomes between long-term TYA cancer survivors and healthy controls and (2) identify factors associated with adverse social outcomes. We sent a questionnaire to TYA cancer survivors (aged 16-25 years at diagnosis, 5 years after diagnosis) registered in the Cancer Registry Zurich and Zug. Information on controls was obtained from the Swiss Health Survey 2012. We assessed educational achievement, employment status, marital status and life partnership (survivors only), and compared these outcomes between survivors and controls. We used logistic regression to identify sociodemographic and cancer-related factors associated with social outcomes. We included 160 TYA cancer survivors and 999 controls. Educational achievement of survivors differed significantly from controls (p = 0.012): more survivors than controls reported upper secondary education (33 vs 27%) and fewer survivors reported university education (12 vs 21%). No significant differences were found for employment (p = 0.515) and marital status (p = 0.357). The majority of survivors (91%) and controls (90%) were employed, and 37% of survivors were married, compared with 41% of controls. There were no cancer-related factors associated with having only basic education. Unemployment was associated with younger age at diagnosis (odds ratio [OR] 5.3, 95% confidence interval [CI] 1.3-30.8) and self-reported late effects (OR 4.7, 95% CI 1.3-19.5). Survivors of younger age at diagnosis were more likely not to be married (OR 2.7, 95% CI 1.3-5.7) and not to have a life partner (OR 2.3, 95% CI 1.0-5.2). Our findings indicate that TYA cancer survivors completed applied higher education rather than a university education. Future studies including larger samples of TYA cancer survivors

Urological Survivorship Issues Among Adolescent Boys and Young Men Who Are Cancer Survivors.

PubMed

Sukhu, Troy; Ross, Sherry; Coward, R Matthew

2018-01-27

Urological survivorship issues encompass an area that may potentially be overlooked after treatment of childhood cancer in adolescent boys and young men. Side effects of cancer therapy may include subsequent development of erectile dysfunction (ED), hypogonadism, and infertility in adulthood. The purpose of this review is to focus on the etiology and prevalence of the range of sexual and gonadal dysfunction in adolescent boys and young men who are cancer survivors, while discussing current recommendations for evaluation and treatment. We performed a literature review of articles evaluating hypogonadism, sexual dysfunction, ED, and infertility in young men cancer survivors. There is compelling evidence that significant survivorship issues are faced by boys entering adulthood after completing cancer therapy. Overall, young men cancer survivors are much more likely to report symptoms of sexual dysfunction than the general population of men. These patients can develop ED due to physiologic and psychological changes that take place with diagnosis of a malignancy and subsequent treatment. Primary hypogonadism can arise due to pelvic radiation or chemotherapy, and central hypogonadism may arise from pituitary insufficiency after brain radiation or surgery. Infertility develops from direct damage to the Sertoli cells and germinal epithelium from radiotherapy or chemotherapy. Cancer survivors who are men should therefore be screened for these important urological survivorship issues, although exact surveillance strategies remain unclear. Urological survivorship issues including ED, hypogonadism, and infertility are common among cancer survivors and result in significant morbidity. Due to the medical complexity of cancer survivorship, the population of adolescent and young adult survivors would benefit from a network of multidisciplinary survivorship experts to aid the transition into adulthood. Improved research efforts may help to clarify risk factors and to develop

Structural and Functional Lung Impairment in Adult Survivors of Bronchopulmonary Dysplasia.

PubMed

Caskey, Steven; Gough, Aisling; Rowan, Stephen; Gillespie, Scott; Clarke, Jim; Riley, Marshall; Megarry, Jacqui; Nicholls, Paul; Patterson, Chris; Halliday, Henry L; Shields, Michael D; McGarvey, Lorcan

2016-08-01

As more preterm infants recover from severe bronchopulmonary dysplasia (BPD), it is critical to understand the clinical consequences of this condition on the lung health of adult survivors. To assess structural and functional lung parameters in young adult BPD survivors and preterm and term control subjects. Young adult survivors of BPD (mean age, 24 yr) underwent spirometry, lung volume assessment, transfer factor, lung clearance index, and fractional exhaled nitric oxide measurements, together with high-resolution chest computed tomography and cardiopulmonary exercise testing. Twenty-five adult BPD survivors (mean ± SD gestational age, 26.8 ± 2.3 wk; birth weight, 866 ± 255 g), 24 adult prematurely born non-BPD control subjects (gestational age, 30.6 ± 1.9 wk; birth weight, 1,234 ± 207 g), and 25 adult term-birth control subjects (gestational age, 38.5 ± 0.9 wk; birth weight, 3,569 ± 2,979 g) were studied. Subjects with BPD were more likely to be wakened by cough (odds ratio, 9.7; 95% confidence interval, 1.8-52.6; P < 0.01) or wheeze and breathlessness (odds ratio, 12.2; 95% confidence interval; 1.3-112; P < 0.05) than term control subjects after adjusting for sex and current smoking. Preterm subjects had greater airway obstruction than term subjects. Subjects with BPD had significantly lower values for FEV1 and forced expiratory flow, midexpiratory phase (percent predicted and z-scores), than term control subjects (both P < 0.001). Although non-BPD subjects also had lower spirometric values than term control subjects, none of the differences reached statistical significance. More subjects with BPD (25%) had fixed airflow obstruction than non-BPD (12.5%) and term (0%) subjects (P = 0.004). Both BPD and non-BPD subjects had significantly greater impairment in gas transfer (Kco percent predicted) than term subjects (both P < 0.05). Eighteen (37%) preterm participants were classified as small for gestational

Quality of Life of Young Adult Survivors of Pediatric Burns Using World Health Organization Disability Assessment Scale II and Burn Specific Health Scale-Brief: A Comparison.

PubMed

Murphy, Mary Elizabeth; Holzer, Charles E; Richardson, Lisa M; Epperson, Kathryn; Ojeda, Sylvia; Martinez, Erin M; Suman, Oscar E; Herndon, David N; Meyer, Walter J

2015-01-01

The objective was to determine long-term psychological distress and quality of life (QOL) in young adult survivors of pediatric burns using the World Health Organization Disability Assessment Scale II (WHODAS) and the Burn Specific Health Scale-Brief (BSHS-B). Fifty burn survivors 2.5 to 12.5 years postburn (16-21.5 years old; 56% male, 82% Hispanic) completed the WHODAS and BSHS-B. The WHODAS measures health and disability and the BSHS-B measures psychosocial and physical difficulties. Scores were calculated for each instrument, and then grouped by years postburn, TBSA, sex, burn age, and survey age to compare the effects of each. Next, the instruments were compared with each other. The WHODAS disability score mean was 14.4 ± 2.1. BSHS-B domain scores ranged from 3 to 3.7. In general, as TBSA burned increased, QOL decreased. Female burn survivors, survivors burned prior to school entry, and adolescents who had yet to transition into adulthood reported better QOL than their counterparts. In all domains except Participation, the WHODAS consistently identified more individuals with lower QOL than the BSHS-B. Young adult burn survivors' QOL features more disability than their nonburned counterparts, but score in the upper 25% for QOL on the BSHS-B. This analysis revealed the need for long-term psychosocial intervention for survivors with larger TBSA, males, those burned after school entry, and those transitioning into adulthood. Both instruments are useful tools for assessing burn survivors' QOL and both should be given as they discern different individuals. However, the WHODAS is more sensitive than the BSHS-B in identifying QOL issues.

Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?

PubMed Central

Keegan, Theresa H.M.; Tao, Li; DeRouen, Mindy C.; Wu, Xiao-Cheng; Prasad, Pinki; Lynch, Charles F.; Shnorhavorian, Margarett; Zebrack, Brad J.; Chu, Roland; Harlan, Linda C.; Smith, Ashley W.; Parsons, Helen M.

2014-01-01

Purpose Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored. Methods We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study (AYA HOPE), a cohort of 15 to 39 year-olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used. Results Most AYA cancer survivors (95%), who were 15–35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI): 1.7–13.8) or have had health insurance in the past year (OR= 4.0; 95% CI: 0.99–16.3). Cancer recurrence, lacking employment and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. 11% of all AYAs and 25% of AYAs who did not receive medical care in the past 12-months lost health insurance between the initial and follow-up surveys. Conclusion AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance. Implications for Cancer Survivors Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs. PMID:24408440

Health status of the oldest adult survivors of cancer during childhood.

PubMed

Kenney, Lisa B; Nancarrow, Cheryl Medeiros; Najita, Julie; Vrooman, Lynda M; Rothwell, Monica; Recklitis, Christopher; Li, Frederick P; Diller, Lisa

2010-01-15

Young adult survivors of childhood cancer have an increased risk for treatment-related morbidity and mortality. In this study, the authors assessed how treatment for childhood cancer affects older-adult health and health practices. One hundred seven adults treated for childhood cancer between 1947 and 1968, known to have survived past age 50 years, were identified from a single-institution cohort established in 1975. Updated vital status on eligible cases was obtained from public records. Survivors and a control group of their age-matched siblings and cousins completed a mailed survey to assess physical and social function, healthcare practices, and the prevalence of common adult illnesses. Of the 107 survivors known to be alive at age 50 years, 16 were deceased at follow-up; 7 deaths could be associated with prior treatment (second malignancy in radiation field [3], small bowel obstruction after abdominal radiation [2], and cardiac disease after chest irradiation [2]). The 55 survivors (median age, 56 years; range, 51-71 years), and 32 family controls (median age, 58 years; range, 48-70 years), reported similar health practices, health-related quality of life, and social function. However, survivors reported more frequent visits to healthcare providers (P < .05), more physical impairments (P < .05), fatigue (P = .02), hypertension (P = .001), and coronary artery disease (P = .01). An increased risk of hypertension was associated with nephrectomy during childhood (odds ratio, 18.9; 95% confidence interval, 3.0-118.8). The oldest adult survivors of childhood cancer continue to be at risk for treatment-related complications that potentially decrease their life expectancy and compromise their quality of life.

Relationship of Genital Injuries and Age in Adolescent and Young Adult Rape Survivors

PubMed Central

Baker, Rachel B.; Sommers, Marilyn S.

2013-01-01

Objective To examine the associations between age and genital injuries in adolescent and young adult women examined following rape. Design & Setting A retrospective review of 234 medical records from an emergency department sexual assault program. Sample Women aged 14 to 29 years. Fifty percent of the sample was African American, 48% was White, and 2% was either Asian or an “other” race. Main Outcome Measures Genital injury was described by injury prevalence, frequency, and anatomical locations of injuries. Results Overall genital injury prevalence was 62.8%. Younger age was not significantly associated with the presence or absence of genital injury. However, younger age was significantly associated with an increased number of genital injuries overall and to the thighs, labia minora, periurethral area, fossa navicularis, and vagina. Conclusion These findings support the need for further research to determine if the current care provided to rape survivors is age appropriate. PMID:18507599

Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.

PubMed

Berg, Carla J; Stratton, Erin; Esiashvili, Natia; Mertens, Ann

2016-09-01

We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18-34 recruited from a university-affiliated children's hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14 (SD = 3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p = 0.003), being male (p < 0.001), lack of insurance (p = 0.002), and having had chemotherapy (p = 0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.

Health promotion and psychological interventions for adolescent and young adult cancer survivors: A systematic literature review.

PubMed

Bradford, Natalie Katrina; Chan, Raymond Javan

2017-04-01

The effects of cancer and treatment have severe and long lasting negative impacts on quality of life. Adolescents and Young Adults (AYA) have high survival rates but may not reach their full life potential because of these consequences. This review aims to identify, appraise and synthesise the effects of health promotion and psychological interventions for AYA after cancer treatment. The review was undertaken using the preferred reporting items for systematic reviews and meta-analyses guidelines. Included studies were identified though a range of electronic databases through to May 2016. Studies were critically appraised using the Cochrane Risk of Bias tool. Seventeen studies, comprising a total of 2314 participants aged 13-39years were included in this review. Participants in 15 studies were survivors of childhood cancer, with only two studies specifically recruiting survivors of cancer diagnosed during young adulthood. Ten studies were randomised controlled trials (RCTs); the remaining seven were before and after studies. The quality of studies was variable across all appraised domains; risk of bias was evident in regards to recruitment, measures of exposure and outcomes, confounding factors, attrition and lost-to follow-up. Studies evaluated a range of health promotion and psychological interventions to improve health related and process outcomes. Eleven studies reported modest positive outcomes, with psychological and physical activity interventions achieving greater success compared to general health promotion interventions. This review highlights the lack of high-quality studies for optimising the health and well-being of AYA cancer survivors. No conclusive evidence favouring specific interventions were identified, although recommendations for future studies are made. Interventions delivered face-to-face and those that facilitate peer-to-peer support hold promise. Harnessing social media and technology to deliver interventions is likely to increase and these

Am I a 6 or a 10? Mate Value Among Young Adult Survivors of Childhood Cancer and Healthy Peers.

PubMed

Lehmann, Vicky; Tuinman, Marrit A; Keim, Madelaine C; Hagedoorn, Mariët; Gerhardt, Cynthia A

2018-02-01

This study focused on self-perceived mate value of young adult survivors of childhood cancer relative to healthy peers. Qualitative studies indicate potential problems surrounding romantic relationships among survivors, but systematic studies are missing. One-hundred forty-nine childhood cancer survivors and 149 matched controls completed online questionnaires about their mate value, social comparison strategies (i.e., upward/downward identifying/contrasting strategies), and marital status. Survivors and controls were aged 20-40 (M = 27.8), 55% were female, and survivors had been treated for brain tumors (n = 52; 35%), leukemia (n = 42; 28%), lymphoma (n = 31; 21%), or other solid tumors (n = 24; 16%) at 5-33 years before study participation. Survivors and controls did not differ on overall mate value, but on individual characteristics: Survivors thought they had a better sense of humor (d = 0.36), were more loyal (d = 0.32), had higher social status (d = 0.26), and were more ambitious (d = 0.19), while also considering themselves less sexually adventurous (d = 0.31), less healthy (d = 0.26), having less desire to have children (d = 0.21), and a less attractive face (d = 0.20). Higher mate value was related to being partnered, more upward-identifying, less upward-contrasting, and less downward-identifying strategies. Moreover, less downward-identifying was associated with higher mate value in survivors, but not controls; whereas greater downward-contrasting was associated with higher mate value among controls only (R 2  = 30.8%). Survivors do not generally view themselves as less valuable (potential) romantic partners, but they evaluate different characteristics either more positively or more negatively. Social comparison strategies offer targetable points of interventions to intervene on negative self-evaluations, potentially enhancing well-being.

Insulin Resistance and Risk Factors for Cardiovascular Disease in Young Adult Survivors of Childhood Acute Lymphoblastic Leukemia

PubMed Central

Oeffinger, Kevin C.; Adams-Huet, Beverley; Victor, Ronald G.; Church, Timothy S.; Snell, Peter G.; Dunn, Andrea L.; Eshelman-Kent, Debra A.; Ross, Robert; Janiszewski, Peter M.; Turoff, Alicia J.; Brooks, Sandra; Vega, Gloria Lena

2009-01-01

Purpose To determine the prevalence of insulin resistance and other risk factors for cardiovascular disease (CVD) in young adult survivors of childhood acute lymphoblastic leukemia (ALL). Patients and Methods In this cross-sectional evaluation of 118 survivors of childhood ALL (median age, 23.0 years; range, 18 to 37 years), insulin resistance was estimated using the homeostasis model for assessment of insulin resistance (HOMA-IR). Sex-specific comparisons were made with a cohort of 30- to 37-year-old individuals from the same region participating in the Dallas Heart Study (DHS, N = 782). ALL survivors were stratified by treatment with and without cranial radiotherapy (CRT). Results Female ALL survivors had a significantly higher HOMA-IR (CRT, mean 4.6, 95% CI, 3.6 to 5.7; no CRT, mean 3.3, 95% CI, 2.8 to 3.8) in comparison with DHS women (mean 2.4, 95% CI, 2.2 to 2.7). Eighty percent of women treated with CRT had at least three of six CVD risk factors, and they were significantly more likely to have three or more risk factors compared with DHS women (odds ratio [OR], 5.96; 95% CI, 2.15 to 16.47). Male ALL survivors had a significantly higher HOMA-IR (CRT, mean 4.0, 95% CI, 2.8 to 5.6; no CRT, mean 3.4, 95% CI, 2.9 to 3.9) in comparison with DHS men (mean 2.3, 95% CI, 2.1 to 2.6), but were not more likely to have multiple CVD risk factors. Conclusion ALL survivors had an increased prevalence of insulin resistance in comparison with a cohort of older individuals from the same community. Importantly, women treated with CRT seem to have an increased prevalence of multiple CVD risk factors, warranting close monitoring and risk-reducing strategies. PMID:19564534

Survivor Fitness: An Exercise Program for Young Survivors and Patients With Cancer.

PubMed

Acevedo, Jose A

2017-04-01

Young survivors of cancer often face challenges reintegrating into their schools and communities after treatment. Maintaining a physically active lifestyle is recommended, but finding appropriate exercises that cater to their needs can be difficult. As a result, the pilot fitness program Move4Fun/Move4Fitness was developed. This 12-week basic fitness program teaches young survivors of cancer appropriate exercises and how they can exercise on their own with limited space and equipment. Participants experienced physical and mental transformations demonstrated through weight loss, building of muscle, and increased self-confidence.

Service Patterns of Adult Survivors of Childhood versus Adult Sexual Assault/Abuse

ERIC Educational Resources Information Center

Grossman, Susan F.; Lundy, Marta; Bertrand, Cathy; Ortiz, Cynthia; Tomas-Tolentino, Grace; Ritzema, Kim; Matson, Julia

2009-01-01

This analysis compared the characteristics and service patterns of adult survivors of childhood sexual assault/abuse and adult survivors of adult sexual assault/abuse. Utilizing data from sexual assault crisis centers serving survivors in a Midwestern state over a six year period and controlling for revictimization, we describe and compare the…

Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?

PubMed

Keegan, Theresa H M; Tao, Li; DeRouen, Mindy C; Wu, Xiao-Cheng; Prasad, Pinki; Lynch, Charles F; Shnorhavorian, Margarett; Zebrack, Brad J; Chu, Roland; Harlan, Linda C; Smith, Ashley W; Parsons, Helen M

2014-06-01

Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored. We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study, a cohort of 15 to 39 year olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used. Most AYA cancer survivors (95%), who were 15-35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI) = 1.7-13.8) or have had health insurance in the past year (OR = 4.0; 95% CI = 0.99-16.3). Cancer recurrence, lacking employment, and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. Eleven percent of all AYAs and 25% of AYAs who did not receive medical care in the past 12 months lost health insurance between the initial and follow-up surveys. AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance. Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

An Integrative Review of Psychosocial Concerns Among Young African American Breast Cancer Survivors.

PubMed

Nolan, Timiya S; Frank, Jennifer; Gisiger-Camata, Silvia; Meneses, Karen

African American (AA) women are more likely to be given a diagnosis of breast cancer at an early age, experience morbidity after treatment, and exhibit disparities in survivorship. Although psychosocial well-being is largely studied among breast cancer survivors, data are sparse regarding young AA survivors. This integrative review examined psychosocial concerns in survivorship among young AA survivors using a quality-of-life framework. PubMed, CINHAL, EMBASE, PsychINFO, and Scopus were searched for articles exploring psychosocial well-being in young AA survivors. The search yielded 237 articles that were retrieved and reviewed for relevance. Of these, 16 articles were selected based on inclusion/exclusion criteria. Data were evaluated and synthesized based on the quality-of-life model. Selected articles omitted the study of several psychological subconstructs and identified existing psychosocial concerns that require mitigation. The review revealed key areas of psychosocial concerns among young AA survivors including ongoing anxiety/depression, cognitive changes, and relationships. Identified gaps include paucity of research with young AA survivors and their residual psychosocial concerns. Review findings indicate a need to increase survivorship research on young AA survivors. Researchers, clinicians, and young AA survivors must partner in efforts to understand psychosocial concerns and translate findings into clinical practice (ie, use of psychosocial distress tools, distress de-escalation protocols, and individualized survivorship care plans) toward reduction of quality-of-life health disparities among young AA survivors.

"She Was a Little Social Butterfly": A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors.

PubMed

Wilford, Justin; Buchbinder, David; Fortier, Michelle A; Osann, Kathryn; Shen, Violet; Torno, Lilibeth; Sender, Leonard S; Parsons, Susan K; Wenzel, Lari

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

Physical performance limitations among adult survivors of childhood brain tumors

PubMed Central

Ness, Kirsten K.; Morris, E. Brannon; Nolan, Vikki G.; Howell, Carrie R.; Gilchrist, Laura S.; Stovall, Marilyn; Cox, Cheryl L.; Klosky, James L.; Gajjar, Amar; Neglia, Joseph P.

2013-01-01

Background Young adult survivors of childhood brain tumors (BT) may have late-effects that compromise physical performance and everyday task participation. Objective To evaluate muscle strength, fitness, physical performance, and task participation among adult survivors of childhood BT. Design/Method In-home evaluations and interviews were conducted for 156 participants (54% male). Results on measures of muscle strength, fitness, physical performance, and participation were compared between survivors and population-group members with chi-squared statistics and two-sample t-tests. Associations between late effects and physical performance, and physical performance and participation, were evaluated in regression models. Results BT survivors were a median age of 22 (18–58), and 14.7 (6.5–45.9) years from diagnosis. Survivors had lower estimates of grip strength (Female: 24.7±9.2 vs. 31.5±5.8, Male: 39.0±12.2 vs. 53.0±10.1 kilograms), knee extension strength (Female: 246.6±95.5 vs. 331.5±5.8, Male: 304.7±116.4 vs. 466.6±92.1 Newtons) and peak oxygen uptake (Female: 25.1±8.8 vs. 31.3±5.1, Male: 24.6±9.5 vs. 33.2±3.4 milliliters/kilogram/minute) than population-group members. Physical performance was lower among survivors and associated with not living independently (OR=5.0, 95% CI=2.0–12.2) and not attending college (OR=2.3, 95% CI 1.2–4.4). Conclusion Muscle strength and fitness values among BT survivors are similar to those among persons 60+ years, and are associated with physical performance limitations. Physical performance limitations are associated with poor outcomes in home and school environments. These data indicate an opportunity for interventions targeted at improving long-term physical function in this survivor population. PMID:20564409

Male Reproductive Health After Childhood, Adolescent, and Young Adult Cancers: A Report From the Children's Oncology Group

PubMed Central

Kenney, Lisa B.; Cohen, Laurie E.; Shnorhavorian, Margarett; Metzger, Monika L.; Lockart, Barbara; Hijiya, Nobuko; Duffey-Lind, Eileen; Constine, Louis; Green, Daniel; Meacham, Lillian

2012-01-01

The majority of children, adolescents, and young adults diagnosed with cancer will become long-term survivors. Although cancer therapy is associated with many adverse effects, one of the primary concerns of young male cancer survivors is reproductive health. Future fertility is often the focus of concern; however, it must be recognized that all aspects of male health, including pubertal development, testosterone production, and sexual function, can be impaired by cancer therapy. Although pretreatment strategies to preserve reproductive health have been beneficial to some male patients, many survivors remain at risk for long-term reproductive complications. Understanding risk factors and monitoring the reproductive health of young male survivors are important aspects of follow-up care. The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer (COG-LTFU Guidelines) were created by the COG to provide recommendations for follow-up care of survivors at risk for long-term complications. The male health task force of the COG-LTFU Guidelines, composed of pediatric oncologists, endocrinologists, nurse practitioners, a urologist, and a radiation oncologist, is responsible for updating the COG-LTFU Guidelines every 2 years based on literature review and expert consensus. This review summarizes current task force recommendations for the assessment and management of male reproductive complications after treatment for childhood, adolescent, and young adult cancers. Issues related to male health that are being investigated, but currently not included in the COG-LTFU Guidelines, are also discussed. Ongoing investigation will inform future COG-LTFU Guideline recommendations for follow-up care to improve health and quality of life for male survivors. PMID:22649147

Development of a text messaging system to improve receipt of survivorship care in adolescent and young adult survivors of childhood cancer.

PubMed

Casillas, Jacqueline; Goyal, Anju; Bryman, Jason; Alquaddoomi, Faisal; Ganz, Patricia A; Lidington, Emma; Macadangdang, Joshua; Estrin, Deborah

2017-08-01

This study aimed to develop and examine the acceptability, feasibility, and usability of a text messaging, or Short Message Service (SMS), system for improving the receipt of survivorship care for adolescent and young adult (AYA) survivors of childhood cancer. Researchers developed and refined the text messaging system based on qualitative data from AYA survivors in an iterative three-stage process. In stage 1, a focus group (n = 4) addressed acceptability; in stage 2, key informant interviews (n = 10) following a 6-week trial addressed feasibility; and in stage 3, key informant interviews (n = 23) following a 6-week trial addressed usability. Qualitative data were analyzed using a constant comparative analytic approach exploring in-depth themes. The final system includes programmed reminders to schedule and attend late effect screening appointments, tailored suggestions for community resources for cancer survivors, and messages prompting participant feedback regarding the appointments and resources. Participants found the text messaging system an acceptable form of communication, the screening reminders and feedback prompts feasible for improving the receipt of survivorship care, and the tailored suggestions for community resources usable for connecting survivors to relevant services. Participants suggested supplementing survivorship care visits and forming AYA survivor social networks as future implementations for the text messaging system. The text messaging system may assist AYA survivors by coordinating late effect screening appointments, facilitating a partnership with the survivorship care team, and connecting survivors with relevant community resources. The text messaging system has the potential to improve the receipt of survivorship care.

Sociodemographic disparities in the occurrence of medical conditions among adolescent and young adult Hodgkin lymphoma survivors.

PubMed

Keegan, Theresa H M; Li, Qian; Steele, Amy; Alvarez, Elysia M; Brunson, Ann; Flowers, Christopher R; Glaser, Sally L; Wun, Ted

2018-06-01

Hodgkin lymphoma (HL) survivors experience high risks of second cancers and cardiovascular disease, but no studies have considered whether the occurrence of these and other medical conditions differ by sociodemographic factors in adolescent and young adult (AYA) survivors. Data for 5,085 patients aged 15-39 when diagnosed with HL during 1996-2012 and surviving ≥ 2 years were obtained from the California Cancer Registry and linked to hospitalization data. We examined the impact of race/ethnicity, neighborhood socioeconomic status (SES), and health insurance on the occurrence of medical conditions (≥ 2 years after diagnosis) and the impact of medical conditions on survival using multivariable Cox proportional hazards regression. Twenty-six percent of AYAs experienced at least one medical condition and 15% had ≥ 2 medical conditions after treatment for HL. In multivariable analyses, Black HL survivors had a higher likelihood (vs. non-Hispanic Whites) of endocrine [hazard ratio (HR) = 1.37, 95% confidence interval (CI) 1.05-1.78] and circulatory system diseases (HR = 1.58, CI 1.17-2.14); Hispanics had a higher likelihood of endocrine diseases [HR = 1.24 (1.04-1.48)]. AYAs with public or no insurance (vs. private/military) had higher likelihood of circulatory system diseases, respiratory system diseases, chronic kidney disease/renal failure, liver disease, and endocrine diseases. AYAs residing in low SES neighborhoods (vs. high) had higher likelihood of respiratory system and endocrine diseases. AYAs with these medical conditions or second cancers had an over twofold increased risk of death. Strategies to improve health care utilization for surveillance and secondary prevention among AYA HL survivors at increased risk of medical conditions may improve outcomes.

Fatigue in young survivors of extracranial childhood cancer: a Finnish nationwide survey.

PubMed

Mört, Susanna; Lähteenmäki, Päivi M; Matomäki, Jaakko; Salmi, Toivo T; Salanterä, Sanna

2011-11-01

To evaluate self-reports of fatigue by young cancer survivors (aged 11-18 years), to compare young survivors' fatigue scores with the scores of a healthy control group and of the parent proxy evaluation, and to analyze whether demographic or disease-related factors are associated with young survivors' fatigue. Cross-sectional quantitative study. An urban hospital in southwestern Finland. 384 survivors diagnosed with an extracranial malignancy at age 16 or younger, who have survived four or more years postdiagnosis, and who are free of cancer. General matched population controls were randomly selected from the Finnish Population Registry. Demographic data and a self-report written fatigue questionnaire. Total fatigue (TF), general fatigue (GF), sleep or rest fatigue (SF), and cognitive fatigue. The control populations reported significantly more issues with TF, GF, and SF than did the survivor population. In survivors, older age, the need for remedial education at school, and a sarcoma diagnosis were associated with increasing fatigue, whereas female gender, better school grades, and greater health-related quality-of-life (HRQOL) scores were associated with lower fatigue. The study variables explained 49%-65% of the variation in fatigue scores. Although survivors and their matched controls seem to have similar fatigue, subgroups of survivors do experience excessive fatigue, which may have an impact on their HRQOL. This study increases the knowledge about fatigue levels of young survivors of extracranial malignancies and identifies the need for instruments specifically designed to assess fatigue in this population. The healthcare team should pay attention to the fatigue level of young survivors, particularly SF.

Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study

PubMed Central

Keegan, Theresa H.M.; Lichtensztajn, Daphne Y.; Kato, Ikuko; Kent, Erin E.; Wu, Xiao-Cheng; West, Michelle M.; Hamilton, Ann S.; Zebrack, Brad; Bellizzi, Keith M.; Smith, Ashley W.

2012-01-01

Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals. PMID:22457219

Correlates of self-efficacy for disease management in adolescent/young adult cancer survivors: A systematic review.

PubMed

Herts, Kate L; Khaled, Mona M; Stanton, Annette L

2017-03-01

The primary objective of this review was to summarize the literature regarding factors associated with self-efficacy for disease management (SEDM) in cross-sectional studies and the efficacy/effectiveness of psychosocial interventions that are designed to improve SEDM in adolescent and young adult (AYA) cancer survivors. The secondary aim was to assess the quality of included studies. We conducted a systematic review using PsycINFO and PubMed to identify studies for review. Eligible studies were conducted in AYA cancer survivors ages 15 to 39; included a measure of SEDM assessed as an outcome or in a cross-sectional analysis; and were published in a peer-reviewed, English-language journal. From the 2,910 records screened, 7 cross-sectional studies and 4 intervention studies met criteria for inclusion. Eleven of the 12 SEDM measures in the studies were author-constructed, limiting the ability to draw conclusions across studies. All cross-sectional studies met at least 21 of 26 relevant quality assessment criteria, and intervention studies met between 4 and 11 of 14 criteria. Cross-sectional findings indicate that SEDM is positively associated with health-promoting behaviors and inversely related to physical and mental health problems. The intervention studies demonstrated that behavioral and educational interventions have the potential to increase SEDM. Directions for research include the need for validated measures of SEDM for AYA cancer survivors, as well as interventions that target both the health care team's and the patient's role in promoting SEDM. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Current lifestyle of young adults treated for cancer in childhood.

PubMed

Evans, S E; Radford, M

1995-05-01

The aim of this study was to look at the current lifestyle of young adult survivors of childhood cancer between the ages of 16 and 30 years to document their achievements and expose any psychosocial problems. Sixty six young adult survivors were contacted and asked if they and their siblings (16-30 years) would take part in a lifestyle study; 48 patients and 38 sibling controls were interviewed. This took the form of a structured lifestyle questionnaire, a self esteem questionnaire (Oxford Psychologists Press), and an unstructured interview. Fifty five per cent of patients achieved five or more A-C grades at 'O' level/GCSE compared with 62% of siblings and a national average of 30%. Despite that these patients were significantly less likely to go on to higher education than their siblings. The two groups were equally employable and earning similar salaries. There were three cases of known employer prejudice. A slightly higher percentage of patients than siblings had their driving licence. Seventeen patients felt their appearance had changed and eight felt that they had a residual physical mobility problem. Both groups were socially active and equally likely to partake in competitive sports. There was no overall difference in the self esteem of the two groups. In general the survivors of childhood cancer were coping well in their young adult life and achieving the same lifestyle goals as their siblings. However, significant problems have been identified.

Outdoor adventure therapy to increase physical activity in young adult cancer survivors.

PubMed

Gill, Elizabeth; Goldenberg, Marni; Starnes, Heather; Phelan, Suzanne

2016-01-01

Despite the health benefits of physical activity (PA), limited research has examined PA interventions in young adult cancer survivors (YACS). This study used a two-group parallel design to examine the effects of a 7-day outdoor adventure camp vs. waitlist control on PA levels among YACS. Secondary aims examined effects on sedentary behavior and PA correlates. 50 camp and 66 control participants were assessed at baseline, end of camp, and 3 months. Intent-to-treat analyses indicated that, relative to baseline, camp participants had significantly (p = 0.0001) greater increases in PA than controls during camp (+577 vs. +9 minutes/week) and 3 months post-camp (+133 vs. -75 minutes/week, p = 0.001). Camp participants also reported significantly greater improvements in TV viewing (p = 0.001), hours sitting (p = 0.001), PA variety (p = 0.0001), barriers to PA (p = 0.007), and enjoyment of structured activities (p = 0.04) during camp but not 3 months post-camp. A week-long outdoor adventure therapy camp increased PA levels during camp and 3 months after camp termination, although effects were attenuated over time. Outdoor adventure therapy camps may increase PA and its correlates in YACS, but future research should explore methods to promote sustained PA after camp termination.

Prevalence and Predictors of Risky and Heavy Alcohol Consumption Among Adult Siblings of Childhood Cancer Survivors

PubMed Central

Lown, E. Anne; Mertens, Ann C.; Korcha, Rachael A.; Leisenring, Wendy; Hudson, Melissa M.; Greenfield, Thomas K.; Robison, Leslie L.; Zeltzer, Lonnie K.

2013-01-01

Objective To describe alcohol consumption patterns and risk factors for heavy alcohol use among siblings of childhood cancer survivors compared to survivors and national controls. Methods Secondary analysis of prospectively collected data from two national surveys was performed including a cohort of 3,034 adult siblings of childhood cancer survivors (age 18-56 years) and 10,398 adult childhood cancer survivors both from the Childhood Cancer Survivor Study, plus 5,712 adult participants from the population-based National Alcohol Survey. Cancer-related experiences, self-reported current health and mental health were examined in relation to alcohol consumption patterns including heavy and risky drinking. Results Adult siblings of childhood cancer survivors were more likely to be heavy drinkers (ORadj=1.3; 1.0-1.6) and risky drinkers (ORadj=1.3; 1.1-1.6) compared to controls from a national sample. Siblings were also more likely to drink at these two levels compared to survivors. Factors associated with heavy drinking among siblings include being 18-21 years old (ORadj=2.9; 2.0-4.4), male (ORadj=2.3; 1.7-3.0), having a high school education or less (ORadj=2.4; 1.7-3.5), and drinking initiation at a young age (ORadj=5.1; 2.5-10.3). Symptoms of depression, (ORadj=2.1; 1.3-3.2), anxiety (ORadj=1.9; 1.1-3.3) and global psychiatric distress (ORadj=2.5; 1.5-4.3) were significantly associated with heavy alcohol use. Conclusions Siblings of children with cancer are more likely to be heavy drinkers as adults compared to childhood cancer survivors or national controls. Early initiation of drinking and symptoms of psychological distress should be identified during early adolescence and effective sibling-specific interventions should be developed and made available for siblings of children with cancer. PMID:22736595

Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.

PubMed

Keegan, Theresa H M; Lichtensztajn, Daphne Y; Kato, Ikuko; Kent, Erin E; Wu, Xiao-Cheng; West, Michelle M; Hamilton, Ann S; Zebrack, Brad; Bellizzi, Keith M; Smith, Ashley W

2012-09-01

We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms. Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.

From Adjustment to Thriving: Exploring Well-Being in Young Adult Survivors of Childhood Cancer and Their Siblings.

PubMed

Scrignaro, Marta; Nichelli, Francesca; Cattaneo, Laura; Spinelli, Marco; Magrin, Maria Elena; Fraschini, Donatella; Biondi, Andrea; Jankovic, Momcilo

2016-12-01

Few studies have addressed the adaptive mental health status of young adult (YA) survivors of childhood cancer (SCCs) and the siblings (SIBs) of the same families. This article explores the existence of different psychological well-being (PWB) profiles and verifies their relationship with life satisfaction, resilience, and mental adjustment among Italian YA survivors of childhood leukemia or lymphoma and their own SIBs. YA SCCs (n = 35) who had been off primary treatment for at least 5 years and their SIBs (n = 47) completed anonymous self-report questionnaires for PWB, life satisfaction, resilience, and mental adjustment. The survivors at the time of the survey had an average age of 27 years (SD 3.37) and they were an average age of 12 years (SD 1.93) at diagnosis. Their own SIBs had an average age of 29 years (SD ±5.25). No significant differences were found between SCCs and their SIBs in all considered dimensions. Only 12% of the sample showed evidence of clinically significant mental health disorders, 51% manifested medium levels of resilience, and 49% fit a functional PWB profile. By means of cluster analysis, three PWB statuses could be derived: self-devaluing (25.5%), fatalist (25.5%), and eudaimonic (49%). Each of these PWB statuses exhibited a significant distinct profile in terms of life satisfaction, resilience, and mental adjustment. There is a need to establish psychosocial services that offer follow-up examinations aimed to not only prevent mental disorders but also to promote PWB.

The work life and career development of young breast cancer survivors.

PubMed

Raque-Bogdan, Trisha L; Hoffman, Mary Ann; Ginter, Amanda C; Piontkowski, Sarah; Schexnayder, Kelci; White, Rachel

2015-10-01

Breast cancer survivors represent the largest proportion of cancer survivors, and the rate of young breast cancer survivors who are diagnosed before the age of 40 is increasing. Cancer survivorship scholarship has begun to address many aspects of survivors' quality of life, yet the role of work and career issues have been understudied, particularly for young survivors. To explore the work lives and career development of young breast cancer survivors, this study used consensual qualitative research methodology (Hill, Thompson, & Williams, 1997) to analyze data from qualitative interviews with 13 young women diagnosed with breast cancer before the age of 40. The 4 career-related domains that emerged from the data were (a) cancer-related work challenges, (b) coping with cancer-related work challenges, (c) reappraisal of career development after cancer, and (d) components of career and life satisfaction after cancer. Experiencing breast cancer at a young age was viewed by participants as contributing to an increased desire for work to provide a sense of meaning as well as financial security and insurance. Cancer was further viewed as contributing to lost control over career success and work choices, treatment side effects that interfere with work self-efficacy and capabilities, and interpersonal difficulties connecting within and outside of work. Women with more extensive cancer treatment and side effects reported greater work struggles. Despite this, participants' cancer narratives were characterized by a range of coping strategies, including reframing and seeking control, and by evidence of persistence, resilience, and hope. Implications for research and practice are discussed. (c) 2015 APA, all rights reserved).

The Experiences of Young Adults With Hodgkin Lymphoma Transitioning to Survivorship: A Grounded Theory Study.

PubMed

Matheson, Lauren; Boulton, Mary; Lavender, Verna; Collins, Graham; Mitchell-Floyd, Tracy; Watson, Eila

2016-09-01

To explore the experiences of young adults with Hodgkin lymphoma during the first year following the end of initial treatment. 
. A qualitative grounded theory study.
. Interviews with patients recruited from three cancer centers in England.
. 10 Hodgkin lymphoma survivors (four men and six women aged 21-39 years) recruited as part of a larger study of 28 young adult cancer survivors.
. Semistructured interviews were conducted about two months after treatment completion, and follow-up interviews were conducted seven months later. The authors' grounded theory of positive psychosocial adjustment to cancer provided the conceptual framework.
. Positive reframing, informal peer support, acceptance, and normalization helped young adults dismantle the threats of Hodgkin lymphoma during the course of treatment. However, they described losing a sense of security following treatment completion. Greater age-specific information to enable better preparation for the future was desired regarding body image, fertility, sexual relationships, work, and socializing.
. Informal support mechanisms, like peer support and patient navigator interventions, may be useful ways to further support young adults after treatment completion.
. Positive psychosocial adjustment to cancer survivorship in young adults is facilitated by having informal peer support; being able to positively reframe, accept, and normalize their experience; and being prepared for the future.

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

PubMed

Schwartz, Lisa A; Hamilton, Jessica L; Brumley, Lauren D; Barakat, Lamia P; Deatrick, Janet A; Szalda, Dava E; Bevans, Katherine B; Tucker, Carole A; Daniel, Lauren C; Butler, Eliana; Kazak, Anne E; Hobbie, Wendy L; Ginsberg, Jill P; Psihogios, Alexandra M; Ver Hoeve, Elizabeth; Tuchman, Lisa K

2017-10-01

The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement. © The Author 2017. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Cardiovascular disease incidence in adolescent and young adult cancer survivors: a retrospective cohort study.

PubMed

Keegan, Theresa H M; Kushi, Lawrence H; Li, Qian; Brunson, Ann; Chawla, X; Chew, Helen K; Malogolowkin, Marcio; Wun, Ted

2018-06-01

Few population-based studies have focused on cardiovascular disease (CVD) risk in adolescent and young adult (AYA; 15-39 years) cancer survivors and none have considered whether CVD risk differs by sociodemographic factors. Analyses focused on 79,176 AYA patients diagnosed with 14 first primary cancers in 1996-2012 and surviving > 2 years after diagnosis with follow-up through 2014. Data were obtained from the California Cancer Registry and State hospital discharge data. CVD included coronary artery disease, heart failure, and stroke. The cumulative incidence of developing CVD accounted for the competing risk of death. Multivariable Cox proportional hazards regression evaluated factors associated with CVD and the impact of CVD on mortality. Overall, 2249 (2.8%) patients developed CVD. Survivors of central nervous system cancer (7.3%), acute lymphoid leukemia (6.9%), acute myeloid leukemia (6.8%), and non-Hodgkin lymphoma (4.1%) had the highest 10-year CVD incidence. In multivariable models, African-Americans (hazard ratio (HR) = 1.55, 95% confidence interval (CI) = 1.33-1.81; versus non-Hispanic Whites), those with public/no health insurance (HR = 1.78, 95% CI = 1.61-1.96; versus private) and those who resided in lower socioeconomic status neighborhoods had a higher CVD risk. These sociodemographic differences in CVD incidence were apparent across most cancer sites. The risk of death was increased by eightfold or higher among AYAs who developed CVD. While cancer therapies are known to increase the risk of CVD, this study additionally shows that CVD risk varies by sociodemographic factors. The identification and mitigation of CVD risk factors in these subgroups may improve long-term patient outcomes.

Life satisfaction in adult survivors of childhood brain tumors.

PubMed

Crom, Deborah B; Li, Zhenghong; Brinkman, Tara M; Hudson, Melissa M; Armstrong, Gregory T; Neglia, Joseph; Ness, Kirsten K

2014-01-01

Adult survivors of childhood brain tumors experience multiple, significant, lifelong deficits as a consequence of their malignancy and therapy. Current survivorship literature documents the substantial impact such impairments have on survivors' physical health and quality of life. Psychosocial reports detail educational, cognitive, and emotional limitations characterizing survivors as especially fragile, often incompetent, and unreliable in evaluating their circumstances. Anecdotal data suggest some survivors report life experiences similar to those of healthy controls. The aim of our investigation was to determine whether life satisfaction in adult survivors of childhood brain tumors differs from that of healthy controls and to identify potential predictors of life satisfaction in survivors. This cross-sectional study compared 78 brain tumor survivors with population-based matched controls. Chi-square tests, t tests, and linear regression models were used to investigate patterns of life satisfaction and identify potential correlates. Results indicated that life satisfaction of adult survivors of childhood brain tumors was similar to that of healthy controls. Survivors' general health expectations emerged as the primary correlate of life satisfaction. Understanding life satisfaction as an important variable will optimize the design of strategies to enhance participation in follow-up care, reduce suffering, and optimize quality of life in this vulnerable population. © 2014 by Association of Pediatric Hematology/Oncology Nurses.

Physical performance limitations among adult survivors of childhood brain tumors.

PubMed

Ness, Kirsten K; Morris, E Brannon; Nolan, Vikki G; Howell, Carrie R; Gilchrist, Laura S; Stovall, Marilyn; Cox, Cheryl L; Klosky, James L; Gajjar, Amar; Neglia, Joseph P

2010-06-15

Young adult survivors of childhood brain tumors (BTs) may have late effects that compromise physical performance and everyday task participation. The objective of this study was to evaluate muscle strength, fitness, physical performance, and task participation among adult survivors of childhood BTs. In-home evaluations and interviews were conducted for 156 participants (54% men). Results on measures of muscle strength, fitness, physical performance, and participation were compared between BT survivors and members of a population-based comparison group by using chi-square statistics and 2-sample t tests. Associations between late effects and physical performance and between physical performance and participation were evaluated in regression models. : The median age of BT survivors was 22 years (range, 18-58 years) at the time of the current evaluation, and they had survived for a median of 14.7 years (range, 6.5-45.9 years) postdiagnosis. Survivors had lower estimates of grip strength (women, 24.7 + or - 9.2 kg vs 31.5 + or - 5.8 kg; men, 39.0 + or - 12.2 kg vs 53.0 + or - 10.1 kg), knee extension strength (women, 246.6 + or - 95.5 Newtons [N] vs 331.5 + or - 5.8 N; men, 304.7 + or - 116.4 N vs 466.6 + or - 92.1 N), and peak oxygen uptake (women, 25.1 + or - 8.8 mL/kg per minute vs 31.3 + or - 5.1 mL/kg per minute; men, 24.6 + or - 9.5 mL/kg per minute vs 33.2 + or - 3.4 mL/kg per minute) than members of the population-based comparison group. Physical performance was lower among survivors and was associated with not living independently (odds ratio [OR], 5.0; 95% confidence interval [CI], 2.0-12.2) and not attending college (OR, 2.3; 95% CI 1.2-4.4). Muscle strength and fitness values among BT survivors were similar to those among individuals aged > or = 60 years and were associated with physical performance limitations. Physical performance limitations were associated with poor outcomes in home and school environments. The current data indicated an opportunity for

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

PubMed Central

Fernandez, Conrad; Fraser, Graeme A.M.; Freeman, Carolyn; Grunfeld, Eva; Gupta, Abha; Mery, Leslie Stephen; De Pauw, Sonja

2011-01-01

Adolescents and young adults (AYA) with cancer and survivors of cancer in childhood, adolescence, and young adulthood are a constituency facing disparities of care affecting quality of life and other outcomes in many parts of the world. In Canada, this situation occurs in a nation with population-based cancer control programs and a government-funded healthcare system. The Canadian Task Force on Adolescents and Young Adults with Cancer was established in 2008 with a mission to ensure that AYA-aged Canadians with cancer and AYA survivors of cancer have prompt, equitable access to the best care, and to establish and support research to identify how their health outcomes and quality of life can be optimized. Following a survey of existing services, and in consultation with survivors, healthcare professionals, and policy makers, the Task Force identified principles of care, priority issues for research and the establishment of outcome metrics, and strategies for implementing change that are designed to improve the outcomes and quality of life of this specific cohort of patients and survivors with unique developmental needs. The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, and will provide economic and other societal benefits. PMID:23610731

The power in being together for young adults who have heart disease - the photoshoot experience.

PubMed

Gallagher, Robyn; Potter, Ellen; Thomson Mangnall, Linda; Ladak, Laila; Gallagher, Patrick; Neubeck, Lis

The study aimed to determine perceived motivations and benefits of photoshoot participation for young adults who have heart disease. Feeling isolated and different can have lifelong affects on quality of life in heart disease survivors. Photoshoots, where people create a photographic image of themselves, promote positive interpretation of their cardiac illness experience, but participant experiences remain under-investigated. Young adult heart disease support group members completing a photoshoot were interviewed and data were thematically analyzed. Seven females and one male aged 20-47 years participated. The main theme, People Like Me, emphasized feelings of being different, isolated and uncertain due to the heart disease. Other themes related to support gained from people who were not like them, gaining and providing support to their peers. The photoshoot enabled a highly valued collective feeling. For young adult heart disease survivors, the photoshoot provides a fun, social opportunity to reduce isolation and share experiences. Copyright © 2017 Elsevier Inc. All rights reserved.

Using Mechanical Turk for research on cancer survivors.

PubMed

Arch, Joanna J; Carr, Alaina L

2017-10-01

The successful recruitment and study of cancer survivors within psycho-oncology research can be challenging, time-consuming, and expensive, particularly for key subgroups such as young adult cancer survivors. Online crowdsourcing platforms offer a potential solution that has not yet been investigated with regard to cancer populations. The current study assessed the presence of cancer survivors on Amazon's Mechanical Turk (MTurk) and the feasibility of using MTurk as an efficient, cost-effective, and reliable psycho-oncology recruitment and research platform. During a <4-month period, cancer survivors living in the United States were recruited on MTurk to complete two assessments, spaced 1 week apart, relating to psychosocial and cancer-related functioning. The reliability and validity of responses were investigated. Within a <4-month period, 464 self-identified cancer survivors on MTurk consented to and completed an online assessment. The vast majority (79.09%) provided reliable and valid study data according to multiple indices. The sample was highly diverse in terms of U.S. geography, socioeconomic status, and cancer type, and reflected a particularly strong presence of distressed and young adult cancer survivors (median age = 36 years). A majority of participants (58.19%) responded to a second survey sent one week later. Online crowdsourcing represents a feasible, efficient, and cost-effective recruitment and research platform for cancer survivors, particularly for young adult cancer survivors and those with significant distress. We discuss remaining challenges and future recommendations. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Prevalence and predictors of risky and heavy alcohol consumption among adult siblings of childhood cancer survivors.

PubMed

Lown, E Anne; Mertens, Ann C; Korcha, Rachael A; Leisenring, Wendy; Hudson, Melissa M; Greenfield, Thomas K; Robison, Leslie L; Zeltzer, Lonnie K

2013-05-01

To describe alcohol consumption patterns and risk factors for risky and heavy alcohol use among siblings of childhood cancer survivors compared with survivors and national controls. Secondary analysis of prospectively collected data from two national surveys was performed including a cohort of 3034 adult siblings of childhood cancer survivors (age 18-56 years) and 10,398 adult childhood cancer survivors, both from the Childhood Cancer Survivor Study, plus 5712 adult participants from the population-based National Alcohol Survey. Cancer-related experiences, self-reported current health, and mental health were examined in relation to alcohol consumption patterns including heavy and risky drinking. Adult siblings of childhood cancer survivors were more likely to be heavy drinkers (OR adj = 1.3; 1.0-1.6) and risky drinkers (OR adj = 1.3; 1.1-1.6) compared with controls from a national sample. Siblings were also more likely to drink at these two levels compared with survivors. Factors associated with heavy drinking among siblings included being 18-21 years old (OR adj = 2.9; 2.0-4.4), male (OR adj = 2.3; 1.7-3.0), having a high school education or less (OR adj = 2.4; 1.7-3.5), and drinking initiation at a young age (OR adj = 5.1; 2.5-10.3). Symptoms of depression, (OR adj = 2.1; 1.3-3.2), anxiety (OR adj = 1.9; 1.1-3.3), and global psychiatric distress (OR adj = 2.5; 1.5-4.3) were significantly associated with heavy alcohol use. Siblings of children with cancer are more likely to be risky and heavy drinkers as adults compared with childhood cancer survivors or national controls. Early initiation of drinking and symptoms of psychological distress should be identified during early adolescence and effective sibling-specific interventions should be developed and made available for siblings of children with cancer. Copyright © 2012 John Wiley & Sons, Ltd.

Employment in French young adult survivors of childhood leukemia: an LEA study (for Leucemies de l'Enfant et de l'Adolescent-childhood and adolescent leukemia).

PubMed

Berbis, Julie; Reggio, Céline; Michel, Gérard; Chastagner, Pascal; Bertrand, Yves; Kanold, Justyna; Sirvent, Nicolas; Plantaz, Dominique; Baruchel, André; Tabone, Marie-Dominique; Garnier, Floriane; Lehucher-Michel, Marie-Pascale; Auquier, Pascal

2016-12-01

Our principal aim was to assess the occupational outcomes of French survivors of childhood leukemia, compared to national population. The secondary objective was to identify determinants linked with employment stability after childhood leukemia. All survivors aged 15 and over enrolled in the French LEA Cohort (Childhood and Adolescent Leukemia) were included. Occupational data were self-reported. The occupational distributions expected in the cohort for each age range were established based on the distribution in France as reference, and comparisons between observed and expected distributions were performed. Logistic regression model was used to explore determinants of stability of survivors' employment. The questionnaire was completed by 845 eligible survivors (response rate 87.8 %), with a mean age of 22.3 ± 5.4 years and a mean follow-up duration of 14.3 ± 6.3 years. Among the 361 survivors currently in the labor market, 36 (10.0 %) were seeking a job, which is significantly lower than expected (19.3 %) compared to French population. Conversely, among those currently employed, the number of survivors in unstable employment (43.9 %) was significantly higher than expected (33.5 %). Younger age and higher number of late effects were risk factors for unstable employment. While the employment rate of the young French adult population of childhood leukemia survivors seems rather positive, access to a steady job appears to be compromised for some survivors. A strategy to better identify particular subgroups of survivors at greatest risk for difficulties in their professional achievement will help ensure the development of specific intervention strategies and support procedures.

The Health Behavior Information Needs and Preferences of Teenage and Young Adult Cancer Survivors.

PubMed

Pugh, Gemma; Hough, Rachael E; Gravestock, Helen L; Jackson, Sarah E; Fisher, Abigail

2017-06-01

This study aimed to establish teenage and young adult cancer survivors (TYACS') specific interest in receiving information on physical activity, diet, smoking, and alcohol consumption and their preferences regarding the delivery, format, and timing of such health behavior information. TYACS aged 13-25 years were invited to complete a questionnaire assessing the advice they had received in the past and their preferences on when and how health behavior information should be delivered. A total of 216 TYACS (mean age: 20 years; mean age at diagnosis: 16 years) completed the questionnaire. Approximately 40% of TYACS received no advice on physical activity and diet, and more than half (54%) received no advice on weight management. The majority (>70%) reported receiving no advice on smoking or alcohol consumption. Interest in receiving lifestyle advice was high overall (71%) but varied across behaviors, with TYACS reporting a greater level of interest in receiving advice on health protective behaviors (physical activity and diet) than health risk behaviors (smoking and alcohol consumption) (∼85% vs. ∼15%, respectively). TYACS reported seeking health behavior information from health professionals and were most interested in information delivered online or in the form of a mobile app. Similar proportions (18%-29%) felt health behavior information should first be provided before, during, immediately after, and post-treatment. It is evident that there is a need to develop lifestyle interventions in a range of formats available to TYACS throughout the care pathway to address the health behavior information needs of young people with cancer.

Impact of Cancer on Work and Education Among Adolescent and Young Adult Cancer Survivors

PubMed Central

Parsons, Helen M.; Harlan, Linda C.; Lynch, Charles F.; Hamilton, Ann S.; Wu, Xiao-Cheng; Kato, Ikuko; Schwartz, Stephen M.; Smith, Ashley W.; Keel, Gretchen; Keegan, Theresa H.M.

2012-01-01

Purpose To examine the impact of cancer on work and education in a sample of adolescent and young adult (AYA) patients with cancer. Patients and Methods By using the Adolescent and Young Adult Health Outcomes and Patient Experience Study (AYA HOPE)—a cohort of 463 recently diagnosed patients age 15 to 39 years with germ cell cancer, Hodgkin's lymphoma, non-Hodgkin's lymphoma, sarcoma, and acute lymphocytic leukemia from participating Surveillance, Epidemiology, and End Results (SEER) cancer registries—we evaluated factors associated with return to work/school after cancer diagnosis, a belief that cancer had a negative impact on plans for work/school, and reported problems with work/school after diagnosis by using descriptive statistics, χ2 tests, and multivariate logistic regression. Results More than 72% (282 of 388) of patients working or in school full-time before diagnosis had returned to full-time work or school 15 to 35 months postdiagnosis compared with 34% (14 of 41) of previously part-time workers/students, 7% (one of 14) of homemakers, and 25% (five of 20) of unemployed/disabled patients (P < .001). Among full-time workers/students before diagnosis, patients who were uninsured (odds ratio [OR], 0.21; 95% CI, 0.07 to 0.67; no insurance v employer-/school-sponsored insurance) or quit working directly after diagnosis (OR, 0.15; 95% CI, 0.06 to 0.37; quit v no change) were least likely to return. Very intensive cancer treatment and quitting work/school were associated with a belief that cancer negatively influenced plans for work/school. Finally, more than 50% of full-time workers/students reported problems with work/studies after diagnosis. Conclusion Although most AYA patients with cancer return to work after cancer, treatment intensity, not having insurance, and quitting work/school directly after diagnosis can influence work/educational outcomes. Future research should investigate underlying causes for these differences and best practices for

Specialized survivor clinic attendance is associated with decreased rates of emergency department visits in adult survivors of childhood cancer.

PubMed

Sutradhar, Rinku; Agha, Mohammad; Pole, Jason D; Greenberg, Mark; Guttmann, Astrid; Hodgson, David; Nathan, Paul C

2015-12-15

Survivors of childhood cancer are at considerable risk of experiencing treatment-related adverse health outcomes. To provide survivors with specialized care focused on these risks during adulthood, the government of Ontario funded a provincial network of specialized survivor clinics in 1999. The aim of this study was to determine whether prior attendance at survivor clinics by adult survivors of childhood cancer was associated with rates of emergency department (ED) visits. This was a population-based, retrospective cohort study using multiple linked administrative health databases. The cohort consisted of all adult survivors of childhood cancer diagnosed between January 1, 1986 and December 31, 2005 in Ontario, Canada. A recurrent event regression model was used to evaluate the association between prior attendance at survivor clinics and the rate of ED visits; adjustments were made for individual, demographic, treatment, and provider characteristics. The study consisted of 3912 adult survivors of childhood cancer. Individuals who had at least 1 prior visit to a survivor clinic had a 19% decreased rate of ED visits in comparison with individuals who had not visited a survivor clinic (adjusted relative rate, 0.81; 95% confidence interval, 0.78-0.85). Each additional prior visit to a survivor clinic was associated with a 5% decrease in the rate of ED visits (adjusted relative rate, 0.95; 95% confidence interval, 0.93-0.96). These results were independent of whether or not survivors received care from a primary care physician. Attendance at a specialized survivor clinic was significantly associated with decreased ED visits among adult survivors of childhood cancer. © 2015 American Cancer Society.

Self-perceptions of young adults who survived severe childhood burn injury.

PubMed

Russell, William; Robert, Rhonda S; Thomas, Christopher R; Holzer, Charles E; Blakeney, Patricia; Meyer, Walter J

2013-01-01

The transition of pediatric burn survivors into adulthood is accompanied by a reformulation of their self-concept. To anticipate the need for and guide development of appropriate psychosocial interventions, this study examines how young adults who were burned as children perceive themselves and how this perception might affect their self-esteem. Eighty-two young adult burn survivors (45 male, 37 female) were assessed using the Tennessee Self-Concept Scale, 2nd edition (TSCS2) to determine how the participants perceive themselves and their interaction with society. To gain insight into the possible effects of these self-concept scores, relationships were analyzed between self-concept, a behavioral assessment (Young Adult Self-Report [YASR]), and a psychiatric symptom assessment (Structured Clinical Interview for DSM-IV Axis I Disorders [SCID I]). This group of burn survivors scored significantly lower in self-concepts, reflected in TSCS2 subscale scores of physical function, appearance, and sexuality, moral conduct, personal values, academics and work, and identity, than did the reference population. Pearson correlation coefficients showed that as moral, personal, family, and social aspects of self-concept decreased, clinical problems endorsed on the YASR subscales increased, including anxiety, somatic, attention, intrusive, and aggressive. Persons with lower self-concept scores on the TSCS2 personal, family, and social scales were more withdrawn on the YASR. Similarly, those with lower TSCS2 scores on the personal and family scales endorsed significantly more thought problems on the YASR. TSCS2 total self-concept, personal, and all of the supplementary scale scores were significantly lower for the group with an affective disorder. Those whose SCID I scores were consistent with a current anxiety disorder had significantly lower scores for the TSCS2 total self-concept and personal. Lower self-concept was associated with endorsement of SCID symptoms. In summary, the

Mental distress and health care use among survivors of adolescent and young adult cancer: A cross-sectional analysis of the National Health Interview Survey.

PubMed

Kaul, Sapna; Avila, Jaqueline C; Mutambudzi, Miriam; Russell, Heidi; Kirchhoff, Anne C; Schwartz, Cindy L

2017-03-01

The current study was conducted to examine the prevalence and correlates of mental distress among survivors of adolescent and young adult (AYA) cancer and a comparison group. A total of 875 AYA cancer survivors who were diagnosed between the ages of 15 and 39 years and who were at least 5 years from their initial diagnosis were identified from the 2013 and 2014 National Health Interview Surveys. A comparison group was created. The Kessler nonspecific mental/psychological distress scale was used to examine none/low, moderate, and severe distress. The issues of whether individuals talked to mental health professionals within the previous year and if they could afford mental health care also were examined. Variables (ie, demographics, behavioral [eg, smoking status], comorbidity, and mental health visits) associated with distress among the 2 groups were identified using multinomial logistic regressions. Survivors reported mental distress more often than the comparison group (moderate: 23.2% vs 16.9%; and severe: 8.4% vs 3.0% [P<.001]). Survivors cited not being able to afford mental health care more often (6.4% vs 2.3%; P = .002). Moreover, 74.7% and 52.2% of survivors, respectively, with moderate and severe distress had not talked to a mental health professional. Contrary to the comparison group, survivors who were current smokers reported severe distress more often compared with nonsmokers (relative risk, 3.59; 95% confidence interval, 1.46-8.84 [P = .01]). Having public and no insurance versus private insurance and report of sleep-related trouble within the previous week were found to be associated with greater distress among survivors. AYA cancer survivors are more likely to demonstrate mental distress than individuals without cancer. Nevertheless, few survivors may be receiving professional mental health services. Survivors need greater access to mental health screening and counseling to address the current gaps in care delivery. Cancer 2017;123:869-78. �

Endocrine and metabolic disorders in young adult survivors of childhood acute lymphoblastic leukaemia (ALL) or non-Hodgkin lymphoma (NHL).

PubMed

Steffens, M; Beauloye, V; Brichard, B; Robert, A; Alexopoulou, O; Vermylen, Ch; Maiter, D

2008-11-01

Treatments of acute lymphoblastic leukaemia (ALL) and non-Hodgkin lymphoma (NHL), involving various combinations of chemotherapy (chemo), cranial irradiation (CI) and/or bone marrow transplantation after total body irradiation (BMT/TBI), are often successful but may have several long-term harmful effects. To evaluate late endocrine and metabolic complications in adult survivors of childhood ALL and NHL, in relation with the different therapeutic schemes received. Endocrine and metabolic parameters were determined in 94 patients (48 men, mean age: 24 +/- 5 years) with a former childhood ALL (n = 78) or NHL (n = 16) and subgrouped according to their previous treatment: chemo only (group I; n = 44), chemo + CI (group II; n = 32) and chemo + BMT/TBI (group III; n = 18). Severe GH deficiency (peak < 3.0 ng/ml after glucagon) was observed in 22% and 50% of patients of groups II and III, respectively, while hypothyroidism was mainly observed in group III (56%). Moreover, 83% of men developed hypogonadism after BMT/TBI, compared to 17% and 8% in groups I and II, respectively (P < 0.05), and all grafted women had ovarian failure, in contrast with other female patients in whom menarche had occurred spontaneously. Patients with BMT/TBI had also an adverse metabolic profile, with insulin resistance in 83% and dyslipidaemia in 61%. This study reveals a high prevalence of endocrine and metabolic disorders in young adult survivors of childhood ALL or NHL, this frequency mainly depending on the treatment received. Treatment with BMT/TBI is the most detrimental and many of these patients will develop GHD, hypothyroidism, hypogonadism, insulin resistance and dyslipidaemia.

A Fitbit and Facebook mHealth intervention for promoting physical activity among adolescent and young adult childhood cancer survivors: A pilot study.

PubMed

Mendoza, Jason A; Baker, K Scott; Moreno, Megan A; Whitlock, Kathryn; Abbey-Lambertz, Mark; Waite, Alan; Colburn, Trina; Chow, Eric J

2017-12-01

Physical activity (PA) may be important for preventing chronic diseases for adolescent and young adult (AYA) childhood cancer survivors. Randomized controlled trials (RCTs) of PA interventions for AYA survivors are sparse, but necessary to determine effective programs for increasing PA among this population. Thus, we conducted a pilot RCT, testing the feasibility of a mobile health (mHealth) intervention to promote PA among AYA survivors. We recruited 14- to 18-year-olds who were ≥1-year post cancer therapy from Seattle Children's Hospital. The 10-week intervention consisted of a wearable PA-tracking device (Fitbit Flex) and a peer-based virtual support group (Facebook group). Research staff helped set step goals and awarded badges weekly. Controls received usual care. Baseline assessments occurred before randomization and follow-up assessments occurred during weeks 8-10 of the intervention period. Feasibility criteria are defined below. Qualitative interviews assessed acceptability. Exploratory outcomes included PA, quality of life, and motivation for PA. All feasibility criteria were met: we recruited 60 survivors, intervention participants wore the Fitbit on the majority (71.5%) of intervention days, and ≥90% of all participants completed questionnaires. Qualitative data confirmed intervention acceptability. Exploratory analyses found no significant adjusted group differences for change in moderate-to-vigorous PA (4.4 vs. 5.0 min/day; P = 0.92) or sedentary time (-4.5 vs. 1.0 min/day; P = 0.73), comparing intervention subjects to controls. Some modest differences were found for select subscales of quality of life and motivation for PA. This mHealth PA intervention was feasible and acceptable to AYA childhood cancer survivors and warrants a fully powered RCT. © 2017 Wiley Periodicals, Inc.

Hawai‘i's Multiethnic Adolescent and Young Adult Survivors of Childhood Cancer: Are Their Health Behavior Risks Similar to State and National Samples?

PubMed Central

Glaser, Darryl W; O'Carroll Bantum, Erin; Orimoto, Trina; Steffen, Alana D; Elia, Jennifer L; Albright, Cheryl L

2013-01-01

Due to toxicities associated with their malignancies and treatments, adolescent and young adult survivors of childhood cancer (AYASCC) are at high risk for developing chronic diseases. This can be compounded by a greater prevalence of unhealthy behaviors relative to similarly aged non-cancer peers. Disparities in health behaviors have been noted for Black and Hispanic AYASCC, but data on Asian American (AA) or Native Hawaiian and Other Pacific Islander (NHOPI) minorities are lacking. The purpose of this study was to help bridge these information gaps by gathering data from Hawai‘i AA and NHOPI AYSCC. Telephone surveys were used to collect health behavior data from survivors 13–24 years of age (N=64); 55% of the sample was female, 77% AA or NHOPI, 63% leukemia/lymphoma survivors, and 32% overweight/obese. These were compared to state/national survey data for similarly aged individuals (Youth Risk Behavior Surveillance System data for 13–17 year olds, and Behavioral Risk Factor Surveillance System data for 18–24 year olds). While Hawai‘i AYASCC had significantly lower rates of tobacco/alcohol use, a higher proportion did not eat five fruits/vegetables a day (96%) compared to state (83%) and national (78%) samples (P < .001). Although many met age-specific physical activity recommendations, 44% of <18 year olds and 29% of ≥18 year olds still failed to meet national guidelines. Low intake of fruits/vegetables and suboptimal levels of physical activity place these vulnerable, ethnic minority cancer survivors at higher risk for chronic disease. These findings underscore the need to assess and advise survivors about their diet and exercise habits as part of post-treatment care. PMID:24251083

Cancer experiences and health-related quality of life among racial and ethnic minority survivors of young adult cancer: a mixed methods study.

PubMed

Munoz, Alexis R; Kaiser, Karen; Yanez, Betina; Victorson, David; Garcia, Sofia F; Snyder, Mallory A; Salsman, John M

2016-12-01

Young adult (YA) racial and ethnic minority survivors of cancer (diagnosed ages 18-39) experience significant disparities in health outcomes and survivorship compared to non-minorities of the same age. However, little is known about the survivorship experiences of this population. The purpose of this study is to explore the cancer experiences and health-related quality of life (HRQOL) among YA racial/ethnic minorities in an urban US city. Racial and ethnic minority YA cancer survivors (0 to 5 years posttreatment) were recruited from a comprehensive cancer center using a purposive sampling approach. Participants (n = 31) completed semi-structured interviews, the FACT-G (physical, emotional, social well-being) and the FACIT-Sp (spiritual well-being). Mixed methods data were evaluated using thematic analysis and analysis of covariance (ANCOVA). The majority of survivors were women (65 %), single (52 %), and Hispanic (42 %). Across interviews, the most common themes were the following: "changes in perspective," "emotional impacts," "received support," and "no psychosocial changes." Other themes varied by racial/ethnic subgroups, including "treatment effects" (Hispanics), "behavior changes" (Blacks), and "appreciation for life" (Asians). ANCOVAs (controlling for gender and ECOG performance status scores) revealed that race/ethnicity had a significant main effect on emotional (P = 0.05), but not physical, social, or spiritual HRQOL (P > 0.05). Our findings suggest that minority YA cancer survivors report complex positive and negative experiences. In spite of poor health outcomes, survivors report experiencing growth and positive change due to cancer. Variations in experiences and HRQOL highlight the importance of assessing cultural background to tailor survivorship care among YA racial and ethnic minorities.

Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer.

PubMed

Quinn, Gwendolyn P; Huang, I-Chan; Murphy, Devin; Zidonik-Eddelton, Katie; Krull, Kevin R

2013-02-01

Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology. Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate the relevance and accuracy of standardized HRQoL instruments used with YASCC. In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content from existing instruments. Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood. Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency, and breadth of these items in a larger sample.

Development and Validation of the Health Competence Beliefs Inventory in Young Adults With and Without a History of Childhood Cancer

PubMed Central

DeRosa, Branlyn Werba; Doshi, Kinjal; Schwartz, Lisa A.; Ginsberg, Jill; Mao, Jun J.; Straton, Joseph; Hobbie, Wendy; Rourke, Mary T.; Carlson, Claire; Ittenbach, Richard F.

2012-01-01

Background Adolescent and young adult survivors of childhood cancer are a vulnerable population. Health beliefs may be related to necessary follow-up care. Purpose This study seeks to develop a measure of health beliefs for adolescents and young adults with and without a history of cancer. Methods Inductive and deductive methods and focus groups were used to develop the Health Competence Beliefs Inventory. Cancer survivors (n=138) and comparison participants (n=130) completed the Health Competence Beliefs Inventory and other measures. Healthcare providers reported current medical problems. Results A series of iterative exploratory factor analyses generated a 21-item four-factor solution: (1) Health Perceptions; (2) Satisfaction with Healthcare; (3) Cognitive Competence; and (4) Autonomy. Survivors reported significantly different Health Competence Beliefs Inventory scale scores than comparisons (p<.05). The Health Competence Beliefs Inventory was associated with beliefs, affect, quality of life, posttraumatic stress symptoms, and medical problems. Conclusions The Health Competence Beliefs Inventory is a promising measure of adolescent and young adult perceptions of health and well-being. PMID:20936390

Barriers to rehabilitative care for young breast cancer survivors: a qualitative understanding.

PubMed

Miedema, Baukje; Easley, Julie

2012-06-01

The goal of this study was to assess the rehabilitation needs of young women breast cancer survivors under the age of 50 and to identify factors that may impact or prevent cancer rehabilitation utilization. Utilizing a grounded theory methodology, 35 young breast cancer survivors were interviewed twice in four Atlantic Canadian provinces. A considerable number of barriers exist to receiving rehabilitative care post-treatment for young breast cancer survivors. The systemic barriers include the lack of availability of services, travel issues, cost of services, and the lack of support to address the unique needs for this age group. However, the most complicated barriers to accessing rehabilitative care were personal barriers which related more to choice and circumstances, such as the lack of time due to family responsibilities and appointment fatigue. Many of these personal barriers were rooted in the complex set of gender roles of young women as patients, mothers, workers, and caregivers. The contexts of young women's lives can have a substantial impact on their decisions to seek and receive rehabilitative care after breast cancer treatment. The systemic barriers can be reduced by introducing more services or financial assistance; however, the personal barriers to rehabilitation services are difficult to ameliorate due to the complex set of roles within and outside the family for this group of young breast cancer survivors. Health care providers need to take into consideration the multiple contexts of women's lives when developing and promoting breast cancer rehabilitation services and programs.

Worse quality of life in young and recently diagnosed breast cancer survivors compared with female survivors of other cancers: A cross-sectional study.

PubMed

Li, Jingmei; Humphreys, Keith; Eriksson, Mikael; Dar, Huma; Brandberg, Yvonne; Hall, Per; Czene, Kamila

2016-12-01

Literature focusing on health-related quality of life (HRQoL) by cancer site among women only is scarce. This study examines HRQoL of breast cancer (BC) survivors compared with female survivors of other cancers, and to understand which subgroups of BC survivors were particularly at risk of reduced HRQoL. We placed emphasis on young (<50 years) and recently diagnosed (≤5 years) survivors, where the deficits in HRQoL were most pronounced. The cross-sectional study consisted of 2,224 BC survivors, 8,504 non-cancer controls and 2,205 other cancer survivors in the Karma study. We examined HRQoL differences using linear regression analyses in the whole cohort and in a subset of young and recently diagnosed BC survivors (n = 242) and female survivors of other cancers (n = 140) with comparable ages at diagnosis (43.6 vs 43.6, p = 0.917) and time since diagnosis (2.3 vs 2.8 years, p < 0.001). HRQoL was assessed using the EORTC QLQ-C30 questionnaire. While only cognitive functioning was significantly compromised in BC survivors compared with survivors of other cancers when women of all ages were included, young BC survivors reported significantly lower HRQoL on multiple functional scales (global quality of life, emotional, role, social and cognitive functioning) and experienced more fatigue and insomnia. BC survivors with any prior medical history of mental disorders reported poorer HRQoL than those without such a history. We also observed a close-knit relationship between tumor and treatment characteristics. BC survivors perform poorly in HRQoL in comparison with female survivors of other cancers. Our results emphasize the importance of age- and gender-appropriate comparison groups. © 2016 UICC.

Young adult outcomes of very-low-birth-weight children.

PubMed

Hack, Maureen

2006-04-01

Information on the young adult outcomes of the initial survivors of neonatal intensive care has been reported from the United States, Canada, Australia, Great Britain and other European countries. The studies have varied with regard to whether they were regional or hospital-based, their birth-weight group and gestational age, rates of survival, socio-demographic background, and measures of assessment and types of outcome studied. Despite these differences the overall results reveal that neurodevelopment and growth sequelae persist to young adulthood. Very-low-birth-weight young adults have, with few exceptions, poorer educational achievement than normal-birth-weight controls, and fewer continue with post-high-school study. Rates of employment are, however, similar. There are no major differences in general health status, but the young adults demonstrate poorer physical abilities, higher mean blood pressure and poorer respiratory function. There is no evidence of major psychiatric disorder, although anxiety and depression are reported more often. The young adults report less risk-taking than control populations. They report fairly normal social lives and quality of life. When differences are noted they are usually due to neurosensory disabilities. Longer-term studies are needed to evaluate ultimate educational and occupational achievement. It will also be important to assess the effects of preterm birth, early growth failure and catch-up growth on later metabolic and cardiovascular health.

Quantifying Risk Factors for Long-Term Sleep Problems After Burn Injury in Young Adults.

PubMed

Lee, Austin F; Ryan, Colleen M; Schneider, Jeffrey C; Kazis, Lewis E; Li, Nien Chen; Rose, Mary; Liang, Matthew H; Wang, Chao; Palmieri, Tina; Meyer, Walter J; Pidcock, Frank S; Reilly, Debra; Sheridan, Robert L; Tompkins, Ronald G

Restorative sleep is an important component of quality of life. Disturbances in sleep after burn injury were reported but all based on uncontrolled or nonstandardized data. The occurrence and the effect of long-term sleep problems in young adult burn survivors have not been well defined. This 5-year (2003-2008) prospective multicenter longitudinal study included adults with burn injuries ages 19 to 30 years who completed the Young Adult Burn Outcome Questionnaire (YABOQ) up to 36 months after injury. The items measured 15 patient-reported outcomes including physical, psychological, and social statuses and symptoms such as itch and pain. Scores of these 15 YABOQ outcome domains were standardized to a mean of 50 and a SD of 10 based on an age-matched nonburned reference group of young adults. Sleep quality was assessed using the item 'How satisfied are you now with your sleep,' rated by a 5-point Likert scale. Patients responding with very and somewhat dissatisfied were classified as having sleep dissatisfaction and the remaining as less or not dissatisfied. The associations between sleep dissatisfaction (yes/no) and YABOQ outcome domains were analyzed longitudinally using mixed-effect generalized linear models, adjusted for %TBSA burned, age, gender, and race. Generalized estimating equations were used to take into account correlated error resulting from repeated surveys on each patient over time. One hundred and fifty-two burn survivors participated in the YABOQ survey at baseline and during the follow-up who had at least one survey with a response to the sleep item. Among them, sleep dissatisfaction was twice as prevalent (76/152, 50%) when compared with the nonburned reference group (29/112, 26%). The likelihood of a burn survivor being dissatisfied with sleep was reduced over time after the burn injury. Sleep dissatisfaction following burns was significantly associated, in a dose-dependent manner, with increasing burn size (P = .001). Better sleep was associated

Cumulative burden of cardiovascular morbidity in paediatric, adolescent, and young adult survivors of Hodgkin's lymphoma: an analysis from the St Jude Lifetime Cohort Study.

PubMed

Bhakta, Nickhill; Liu, Qi; Yeo, Frederick; Baassiri, Malek; Ehrhardt, Matthew J; Srivastava, Deo K; Metzger, Monika L; Krasin, Matthew J; Ness, Kirsten K; Hudson, Melissa M; Yasui, Yutaka; Robison, Leslie L

2016-09-01

The magnitude of cardiovascular morbidity in paediatric, adolescent, and young adult survivors of Hodgkin's lymphoma is not known. Using medically ascertained data, we applied the cumulative burden metric to compare chronic cardiovascular health conditions in survivors of Hodgkin's lymphoma and general population controls. For this study, participant data were obtained from two ongoing cohort studies at St Jude Children's Research Hospital: the St Jude Lifetime Cohort Study (SJLIFE) and the St Jude Long-term Follow-up Study (SJLTFU). SJLIFE is a cohort study initiated on April 27, 2007, to enable longitudinal clinical evaluation of health outcomes of survivors of childhood cancer treated or followed at St Jude Children's Research Hospital, and SJLTFU is an administrative system-based study initiated in 2000 to collect outcome and late toxicity data for all patients treated at the hospital for childhood cancer. The patient cohort for our study was defined as patients treated at St Jude Children's Research Hospital who reached 18 years of age and were at least 10 years post-diagnosis of pathologically confirmed primary Hodgkin's lymphoma. Outcomes in the Hodgkin's lymphoma survivors were compared with a sample of SJLIFE community control participants, aged 18 years or older at the time of assessment, frequency-matched based on strata defined by 5-year age blocks within each sex, who were selected irrespective of previous medical history. All SJLIFE participants underwent assessment for 22 chronic cardiovascular health conditions. Direct assessments, combined with retrospective clinical reviews, were used to assign severity to conditions using a modified Common Terminology Criteria of Adverse Events (CTCAE) version 4.03 grading schema. Occurrences and CTCAE grades of the conditions for eligible non-SJLIFE participants were accounted for by multiple imputation. The mean cumulative count (treating death as a competing risk) was used to estimate cumulative burden. Of 670

Childhood Sexual Abuse. A Booklet for First Nations Adult Survivors.

ERIC Educational Resources Information Center

Samson, Alana; And Others

This booklet offers information about sources of help for First Nations adult survivors of childhood sexual abuse, particularly in Canada. It explains the definition of sexual abuse and describes the specifics of the law regarding such abuse. Descriptions of common aspects of childhood sexual abuse include quotes from adult survivors. Long-term…

Adult Adjustment of Survivors of Institutional Child Abuse in Ireland

ERIC Educational Resources Information Center

Carr, Alan; Dooley, Barbara; Fitzpatrick, Mark; Flanagan, Edel; Flanagan-Howard, Roisin; Tierney, Kevin; White, Megan; Daly, Margaret; Egan, Jonathan

2010-01-01

Objective: To document the adult adjustment of survivors of childhood institutional abuse. Method: Two hundred and forty-seven adult survivors of institutional abuse with a mean age of 60 were interviewed with a protocol that included the Childhood Trauma Questionnaire, modules from the Structured Clinical Interview for Axis I Disorders of DSM IV…

Anxiety Disorders in Long-Term Survivors of Adult Cancers

PubMed Central

Greer, Joseph A.; Solis, Jessica M.; Temel, Jennifer S.; Lennes, Inga T.; Prigerson, Holly G.; Maciejewski, Paul K.; Pirl, William F.

2011-01-01

Background Little is known about the prevalence of anxiety disorders among long-term survivors of adult cancers. Using data from the National Comorbidity Survey-Replication (NCS-R), we compared rates of anxiety disorders between long-term cancer survivors and individuals without a history of cancer. Methods A nationally representative sample of 9,282 adults participated in a household survey to assess the prevalence of DSM-IV psychiatric disorders, a subset of whom also answered questions about medical comorbidities, including cancer. Long-term survivors were defined as those who received an adult cancer diagnosis at least five years before the survey. Multiple logistic regression analyses were used to examine associations between cancer history and anxiety disorders in the past year. Results The NCS-R sample consisted of 225 long-term cancer survivors and 5,337 people without a history of cancer. Controlling for socio-demographic variables, long-term cancer survivors were more likely to have an anxiety disorder (OR: 1.49, 95% CI: 1.04-2.13), including specific phobia (OR: 1.59, 95% CI: 1.06-2.44) and medical phobia (OR: 3.45, 95% CI: 1.15-10.0), during the past 12 months compared to those without cancer histories. Rates for social anxiety disorder, generalized anxiety disorder, posttraumatic stress disorder, panic disorder and agoraphobia were not significantly different between groups. Conclusion Long-term survivors of adult cancers were more likely to have an anxiety disorder diagnosis, namely specific phobia, in the past 12 months compared with the general public. Further longitudinal study is needed to clarify the timing and course of anxiety relative to the cancer diagnosis. PMID:21907059

Self Perceptions of Young Adults who Survived Severe Childhood Burn Injury

PubMed Central

Russell, W; Robert, RS; Thomas, CR; Holzer, CE; Blakeney, P; Meyer, WJ

2012-01-01

Objective The transition of pediatric burn survivors into adulthood is accompanied by a reformulation of their self concept. In order to anticipate the need for and guide development of appropriate psychosocial interventions, this study examines how young adults who were burned as children perceive themselves and how this perception might affect their self-esteem. Method 82 young adult burn survivors (45 males, 37 females) were assessed using the Tennessee Self-Concept, 2nd Edition (TSCS2) to determine how the participants perceive themselves and their interaction with society. To gain insight into the possible effects of these self-concept scores, relationships were analyzed between self-concept, a behavioral assessment (Young Adult Self-Report, YASR) and a psychiatric symptom assessment (Structured Clinical Interview for DSM-IV Axis I Disorders, SCID I). Results This group of burn survivors scored significantly lower in self-concepts, reflected in TSCS2 sub-scale scores of Physical function, appearance, and sexuality, Moral conduct, Personal values, Academics and work, and Identity than did the reference population. Pearson correlation coefficients showed that as Moral, Personal, Family and Social aspects of self concept decreased, clinical problems endorsed on the YASR sub-scales increased, including Anxiety Somatic, Attention, Intrusive and Aggressive. Persons with lower self-concept scores on the TSCS2 Personal, Family, and Social Scales, were more withdrawn on the YASR. Similarly those with lower TSCS2 scores on the Personal and Family Scales endorsed significantly more Thought Problems on the YASR. Affective distress on the SCID I was associated with significantly lower self concept. TSCS2 Total Self Concept, Personal, and all of the Supplementary Scale scores were significantly lower for the group with an affective disorder. Those whose SCID I scores were consistent with a current anxiety disorder had significantly lower scores for the TSCS2 Total Self

What are the needs of adolescents and young adults after a cancer treatment? A Delphi study.

PubMed

Galán, S; de la Vega, R; Tomé Pires, C; Racine, M; Solé, E; Jensen, M P; Miró, J

2017-03-01

Advances in the early detection of cancer and the development of more effective treatments have resulted in a larger number of adolescents and young adults (AYAs), becoming cancer survivors. However, knowledge regarding their needs and if those needs are adequately addressed remains limited. The aims of this study were to: (1) better understand the needs of AYAs after cancer treatment; (2) analyse the importance of those needs; (3) determine which needs are not adequately addressed; and (4) test the hypothesis that AYA cancer survivors have different needs than adult survivors. Twenty-nine health oncology professionals, 17 AYA survivors and 12 relatives of AYA survivors participated in the Delphi study. The needs identified could be classified into six categories, and all were rated as highly important by all participants. The category perceived as least adequately addressed across the three groups was 'Counselling and psychological support.' The findings provide important new information regarding the needs of AYA cancer survivors that can inform the development of interventions to improve the quality of life of these individuals. © 2016 John Wiley & Sons Ltd.

The course of life of survivors of childhood cancer.

PubMed

Stam, H; Grootenhuis, M A; Last, B F

2005-03-01

The developmental consequences in adulthood of growing up with childhood cancer are not well understood. The Course of life questionnaire was developed to assess the attainment of developmental milestones retrospectively and socio-demographic outcomes in young adulthood. The aim of this study was to assess the course of life and socio-demographic outcomes in young adult survivors of childhood cancer. Knowledge about possible gaps in the course of life could enable health care providers to aim for the most favourable course of life. A total of 353 Dutch survivors and a comparison group of 508 peers without a history of cancer, all aged between 18 and 30, filled in the Course of life questionnaire. The course of life of the survivors was found to be hampered. The young adult survivors of childhood cancer in the Netherlands turned out to have achieved fewer milestones than their peers with respect to autonomy development, social development, and psycho-sexual development, or to have achieved the milestones when they were older than their peers. In addition, survivors displayed less risk behaviour than the comparison group. The survivors and the comparison group also differed on some socio-demographic issues. A considerably lower percentage of survivors than peers in the comparison group were married or living together, and/or employed. Their educational level, on the other hand, was as high as that of their peers. Copyright 2004 John Wiley & Sons, Ltd.

Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors.

PubMed

Granek, Leeat; Nathan, Paul C; Rosenberg-Yunger, Zahava R S; D'Agostino, Norma; Amin, Leila; Barr, Ronald D; Greenberg, Mark L; Hodgson, David; Boydell, Katherine; Klassen, Anne F

2012-09-01

Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics. Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of 'cancer identity' and 'cancer a thing of the past' and; (2) Emotional components included the subthemes of 'fear and anxiety' and 'gratitude and gaining perspective'. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor's life experience). Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care.

Sex trafficking of adolescents and young adults in the United States: healthcare provider's role.

PubMed

Chaffee, Tonya; English, Abigail

2015-10-01

Sex trafficking of adolescents and young adults is both a human rights violation and a public health problem, globally and in the United States. Healthcare providers, including obstetricians and gynecologists, interact with victims, often while they remain under their traffickers' control, but because of providers' lack of training in identification and response many victims go unrecognized and unaided. This review provides an overview of the definitions of sex trafficking and commercial sexual exploitation, contributing factors, health consequences, recruitment of victims, and identification and response by healthcare providers. The literature on definitions and risk factors associated with sex trafficking is growing; however, literature on healthcare providers' role in addressing sex trafficking remains more limited. It is increasingly recognized that healthcare providers have an important role in victim identification and response and as advocates, collaborating with national, regional, and local agencies to increase awareness of sex trafficking as a public health problem and to address the needs of adolescent and young adult victims and survivors globally and in the United States. As professionals who interact with adolescent and young adult victims of sex trafficking, healthcare providers have an important role: in collaboration with other professionals and agencies they can help to identify, respond to, extricate, protect, and advocate for victims and survivors.

To be young, Black, and living with breast cancer: a systematic review of health-related quality of life in young Black breast cancer survivors.

PubMed

Samuel, Cleo A; Pinheiro, Laura C; Reeder-Hayes, Katherine E; Walker, Jennifer S; Corbie-Smith, Giselle; Fashaw, Shekinah A; Woods-Giscombe, Cheryl; Wheeler, Stephanie B

2016-11-01

Compared with young White women, young Black women are more likely to present with aggressive breast cancer (BC) subtypes that are potentially linked to worse health-related quality of life (HRQOL); however, there is limited consensus regarding HRQOL needs among young Black BC survivors. Employing Ferrell's framework on QOL in BC (i.e., physical, psychological, social, and spiritual well-being), we conducted a systematic review on HRQOL among Black BC survivors aged <50 years and proposed recommendations for advancing HRQOL research and care for this population. Literature searches were conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published from 1995 to 2015. Abstracts and full-text articles were screened using predetermined inclusion/exclusion criteria and evaluated for quality. A total of 2533 articles were identified, but six met eligibility criteria. Most studies examined multiple HRQOL domains, with the psychological domain most represented. Compared with their older, White, and BC-free counterparts, young Black BC survivors reported greater fear of dying, unmet supportive care needs, financial distress, and lower physical/functional well-being. However, spiritual well-being appeared favorable for young Black survivors. Research gaps include the absence of longitudinal studies and under-representation of studies examining physical, social, and particularly, spiritual HRQOL in young Black BC survivors. Young Black BC survivors generally experience suboptimal HRQOL after BC diagnosis. As few studies have reported on HRQOL among this group, future research and oncology care should prioritize young Black women in ways that recognize their unique concerns, in order to ensure better HRQOL outcomes both during and after treatment.

Annual Economic Burden of Productivity Losses Among Adult Survivors of Childhood Cancers.

PubMed

Guy, Gery P; Berkowitz, Zahava; Ekwueme, Donatus U; Rim, Sun Hee; Yabroff, K Robin

2016-11-01

Although adult survivors of childhood cancers have poorer health and greater health limitations than other adults, substantial gaps remain in understanding the economic consequences of surviving childhood cancer. Therefore, we estimated the economic burden of productivity losses among adult survivors of childhood cancers. We examined health status, functional limitations, and productivity loss among adult survivors of childhood cancers (n = 239) diagnosed at ≤14 years of age compared with adults without a history of cancer (n = 304 265) by using the 2004-2014 National Health Interview Survey. We estimated economic burden using the productivity loss from health-related unemployment, missed work days, missed household productivity, and multivariable regression models controlling for age, sex, race/ethnicity, education, comorbidities, and survey year. Childhood cancer survivorship is associated with a substantial economic burden. Adult survivors of childhood cancers are more likely to be in poorer health, need assistance with personal care and routine needs, have work limitations, be unable to work because of health, miss more days of work, and have greater household productivity loss compared with adults without a history of cancer (all P < .05). The annual productivity loss for adult survivors of childhood cancer is $8169 per person compared with $3083 per person for individuals without a history of cancer. These findings underscore the importance of efforts to reduce the health and economic burden among adult survivors of childhood cancer. In addition, this study highlights the potential productivity losses that could be avoided during adulthood from the prevention of childhood cancer in the United States. Copyright © 2016 by the American Academy of Pediatrics.

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico

PubMed Central

Rosenberg, Shoshana M.; González-Robledo, Maria Cecilia; Cohn, Julia G.; Villarreal-Garza, Cynthia; Partridge, Ann H.; Knaul, Felicia M.

2018-01-01

Objective Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions. Methods Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30–60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software. Results 25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Conclusions Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico. PMID:29787612

Psychosocial needs of young breast cancer survivors in Mexico City, Mexico.

PubMed

Hubbeling, Harper G; Rosenberg, Shoshana M; González-Robledo, Maria Cecilia; Cohn, Julia G; Villarreal-Garza, Cynthia; Partridge, Ann H; Knaul, Felicia M

2018-01-01

Young breast cancer survivors in Mexico face distinct psychosocial challenges that have not been characterized. This study aims to describe the psychosocial needs of young breast cancer survivors in Mexico at 5 or more years of survivorship, identifying areas of focus for early interventions. Breast cancer patients diagnosed at age 40 or prior with 5 or more years since diagnosis were invited to participate in one-on-one 30-60 minute semi-structured audio-recorded interviews at the Instituto Nacional de Cancerología in Mexico City. Transcripts were coded using thematic analysis with NVivo software. 25 women participated. Five major phenomena emerged from analysis: (1) minimization of fertility concerns; (2) persistence of body image disturbance over time; (3) barriers to employment during survivorship; (4) impact on family relationships and social networks; & (5) unmet psychological care and informational needs. Early interventions with a focus on fertility loss education, access to reconstructive surgery and body image support, guidance during return-to-work, assistance with childcare, integration of psychological care and the fulfillment of informational needs could ameliorate long-term psychological and social distress for young breast cancer survivors in Mexico.

Adolescents and young adults with acute lymphoblastic leukemia.

PubMed

Stock, Wendy

2010-01-01

During the last decade, increasing attention has been paid to a unique group of patients with acute lymphoblastic leukemia (ALL) who lie at the crossroad of therapeutic care by pediatric and adult hematologists/oncologists. ALL is a disease that affects infants, children, adolescents, and adult patients. With current therapies, the vast majority of children with ALL are now long-term survivors; unfortunately, the same good results have not yet been obtained for adults with ALL. This review will describe current controversies surrounding the treatment of adolescents and young adults with ALL--a group who finds themselves in the transition from "pediatric" to "adult" treatment approaches. The review focuses on recent insights into disease biology, prognostic factors, and treatment outcomes that have led to a series of prospective clinical trials specifically designed for adolescents and younger adults (AYAs) with ALL. These trials have been designed to provide important new clinical, psychosocial, and biological insights, and to further improve the survival of this challenging and unique group of patients.

Metabolic and Psychological Impact of a Pragmatic Exercise Intervention Program in Adolescent and Young Adult Survivors of Pediatric Cancer-Related Cerebral Insult.

PubMed

Rath, Shoshana R; Long, Treya M; Bear, Natasha L; Miles, Gordon C P; Bullock, Andrew M; Gottardo, Nicholas G; Cole, Catherine H; Naylor, Louise H; Choong, Catherine S Y

2018-06-01

To assess metabolic function among adolescent and young adult (AYA) survivors of childhood cancer-related brain surgery or cranial irradiation (CRT) and to determine feasibility, safety, and metabolic as well as psychological impact of a 6-month exercise program in this cohort. Twenty AYAs aged 15-23 years were recruited. All had completed cancer treatment by age 15.5 and were more than 1 year after end of treatment. Metabolic function was assessed at baseline (T1), after a 6-month non-intervention period (T2), and after the 6-month intervention (T3). Psychological assessments were performed at T1 and T3. Eight to 12 months after the program (T4), its lasting impact was assessed by questionnaire. The 6-month intervention consisted of small group-based, tailored, supervised exercise sessions combining resistance and aerobic exercise. Sessions were offered up to thrice per week and adherence defined as participation in ≥24 sessions. Flexibility was built into the design with an alternative home-based program offered to those who could not attend the gymnasium. Thirteen of the 20 recruited participants were adherent to the program. There was one fall during exercise, but no injury was sustained. Higher rates of metabolic impairment than would be expected in a healthy cohort were found at baseline both among brain tumor survivors and survivors of total body irradiation. Central adiposity reduced post-intervention (p = 0.014) and improvements in adaptive function were seen. Participants enjoyed the program, but work and study commitments limited attendance. AYA survivors of childhood brain tumors and CRT should be screened for metabolic and psychological well-being. Small group-based exercise is safe, feasible, and enjoyable for this cohort and may benefit them both metabolically and psychologically. ACTRN12614000796684. Retrospectively registered July 28, 2014.

Reconciling Memories of Internment Camp Experiences During WWII in Children's and Young Adult Literature.

ERIC Educational Resources Information Center

Glasgow, Jacqueline N.

2002-01-01

Examines the uprooting of Japanese Americans during World War II as portrayed in children's/young adult literature. Discovers the triumph of the spirit of the survivors and replaces suppressed images with empowering ones. Considers stories and narratives in literature as a resource through which readers might shape their understanding of the…

Sociodemographic Disparities in Quality of Life for Survivors of Adolescent and Young Adult Cancers in the Behavioral Risk Factor Surveillance System

PubMed Central

Spraker-Perlman, Holly L.; McFadden, Molly; Warner, Echo L.; Oeffinger, Kevin C.; Wright, Jennifer; Kinney, Anita Y.

2014-01-01

Purpose: Survivors of cancer diagnosed during adolescence and young adulthood (AYA; aged 15–39) may experience quality of life (QOL) limitations; however, little is known about QOL for AYA survivors who are now middle-aged or among racial/ethnic minority survivors. We evaluated QOL outcomes for AYA cancer survivors relative to a non-cancer comparison group by gender, race/ethnicity, and current age. Methods: Using the 2009 Behavioral Risk Factor Surveillance System (BRFSS) data, we identified 8375 individuals diagnosed with cancer while aged 15–39 years old and 334,759 controls. Participants were currently ≥20 years of age. QOL was measured using four items from the Center for Disease Control's Healthy Days Measure (general health, number of days of poor physical and mental health, and activity limitation days). Multivariable regressions compared these measures for survivors and controls by gender, race/ethnicity, and age, and among survivors to determine cancer-related factors associated with poor QOL. Results: Survivors were more likely to report fair/poor general health than controls (relative risk=1.92; 95% confidence interval: 1.77–2.10; p<0.001). QOL limitations existed by gender and race/ethnicity for survivors. Approximately 30% of survivors currently in their 40s, 50s, and early 60s were in poor health, compared to less than 20% of same-aged controls (both p<0.001). Of survivors with two or more cancers, 41.0% reported poor health, compared to 26.2% with one cancer (p<0.001). Conclusion: AYA cancer survivors have worse QOL compared to the general population and these limitations persist across gender, race/ethnicity, and age. Targeted interventions are essential for improving AYA cancer survivors' health status. PMID:24940530

Survivors of childhood cancer and comparison peers: the influence of early family factors on distress in emerging adulthood.

PubMed

Robinson, Kristen E; Gerhardt, Cynthia A; Vannatta, Kathryn; Noll, Robert B

2009-02-01

This prospective study examines family predictors of distress among survivors of childhood cancer and comparison peers during the transition to emerging adulthood. Children with cancer (n = 55), comparison peers (n = 60), and parents completed measures of distress, family environment, social support, and demographic characteristics during initial treatment, as well as follow-up measures of young adult distress and demographic characteristics soon after participants turned 18 years old. Severity of initial treatment and late effects were rated by healthcare providers for participants with cancer. For all participants, mother and father report of initial parent distress was associated with their report of young adult distress at follow-up. Young adult gender moderated this association. For survivors of childhood cancer, severity of initial treatment and late effects also moderated the association between parent and young adult distress. Improving parent distress may help reduce child distress in general. For survivors specifically, ameliorating the impact of initial treatment and long-term physical problems may be beneficial. Copyright 2009 APA, all rights reserved.

Unmet Information Needs and Quality of Life in Young Breast Cancer Survivors in Japan

PubMed Central

Miyashita, Mika; Ohno, Shinji; Kataoka, Akemi; Tokunaga, Eriko; Masuda, Norikazu; Shien, Tadahiko; Kawabata, Kimiko; Takahashi, Miyako

2015-01-01

Background: Young breast cancer survivors have specific needs related to age. Clarifying the relationships between unmet information needs and quality of life (QOL) in young breast cancer survivors can contribute to constructing a support system to enhance QOL in patients. Objective: This study aimed to identify the unmet information needs and examine the relationships between unmet information needs and QOL in young breast cancer survivors in Japan. Methods: Participants completed an information needs questionnaire containing 26 items, the World Health Organization Quality of Life Instrument–Short Form (WHOQOL-BREF), and a demographic and medical information questionnaire. Results: Fifty participants (30.7%) were unsatisfied with “overall communication with medical professionals.” The mean scores on all subscales of the WHOQOL-BREF of the participants who were satisfied with “overall communication with medical professionals” were significantly higher than those of the unsatisfied group. “follow-up tests,” “treatment for recurrence of breast cancer,” “strategies about communication with medical staff,” and “nutrition” were significantly related with all subscales in the WHOQOL-BREF. “Secondary menopause caused by hormonal therapy” was significantly related with physical and psychological health. Conclusions: Japanese young breast cancer survivors have unmet information needs, including age-specific issues. These unmet information needs are related to QOL. In particular, “overall communication with medical professionals,” which is the most unmet information need, is related to QOL. Implications for Practice: Oncology nurses should teach patients communication skills, provide adequate information, and provide education and emotional support to medical professionals to improve QOL in young breast cancer survivors. PMID:25254410

Psychological, social, and behavioral issues for young adults with cancer.

PubMed

Zebrack, Brad J

2011-05-15

Theories of human development suggest that, although all cancer patients experience a common set of life disruptions, they experience them differently, focus on different issues, and attach different levels of importance to different aspects of the experience depending on the time in life at which they were diagnosed. During the critical developmental transition from childhood to adulthood, older adolescents and young adults in particular have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family. Accordingly, cancer-related issues such as premature confrontation with mortality, changes in physical appearance, increased dependence on parents, disruptions in social life and school/employment because of treatment, loss of reproductive capacity, and health-related concerns about the future may be particularly distressing for adolescents and young adults. Psychosocial and behavioral interventions for young adult cancer patients and survivors often involve assisting these individuals in retaining or returning to function in significant social roles, such as spouse, parent, student, worker, or friend. Successful interventions will enable these young people to overcome the detrimental impact of a health crisis and strengthen the internal and external coping resources available to them. © 2011 American Cancer Society

Long-term outcome after arterial ischemic stroke in children and young adults.

PubMed

Goeggel Simonetti, Barbara; Cavelti, Ariane; Arnold, Marcel; Bigi, Sandra; Regényi, Mária; Mattle, Heinrich P; Gralla, Jan; Fluss, Joel; Weber, Peter; Hackenberg, Annette; Steinlin, Maja; Fischer, Urs

2015-05-12

To compare long-term outcome of children and young adults with arterial ischemic stroke (AIS) from 2 large registries. Prospective cohort study comparing functional and psychosocial long-term outcome (≥2 years after AIS) in patients who had AIS during childhood (1 month-16 years) or young adulthood (16.1-45 years) between January 2000 and December 2008, who consented to follow-up. Data of children were collected prospectively in the Swiss Neuropediatric Stroke Registry, young adults in the Bernese stroke database. Follow-up information was available in 95/116 children and 154/187 young adults. Median follow-up of survivors was 6.9 years (interquartile range 4.7-9.4) and did not differ between the groups (p = 0.122). Long-term functional outcome was similar (p = 0.896): 53 (56%) children and 84 (55%) young adults had a favorable outcome (modified Rankin Scale 0-1). Mortality in children was 14% (13/95) and in young adults 7% (11/154) (p = 0.121) and recurrence rate did not differ (p = 0.759). Overall psychosocial impairment and quality of life did not differ, except for more behavioral problems among children (13% vs 5%, p = 0.040) and more frequent reports of an impact of AIS on everyday life among adults (27% vs 64%, p < 0.001). In a multivariate regression analysis, low Pediatric NIH Stroke Scale/NIH Stroke Scale score was the most important predictor of favorable outcome (p < 0.001). There were no major differences in long-term outcome after AIS in children and young adults for mortality, disability, quality of life, psychological, or social variables. © 2015 American Academy of Neurology.

Moderating effects of perceived growth on the association between fear of cancer recurrence and health-related quality of life among adolescent and young adult cancer survivors.

PubMed

Cho, Dalnim; Park, Crystal L

2017-01-01

We examined whether (1) fear of cancer recurrence was related to lower health-related quality of life and (2) perceived growth moderated the link between fear of recurrence and health-related quality of life. About 292 adolescent and young adult cancer survivors (diagnosed with cancer at ages 15-34) completed a cross-sectional survey. Fear of recurrence was related to poorer physical and mental health-related quality of life. The negative association between fear of recurrence and mental health-related quality of life was moderated by perceived growth. Fostering perceived growth may mitigate the adverse associations of fear of recurrence and health-related quality of life.

Assessing quality of life in young adult cancer survivors: development of the Survivorship-Related Quality of Life scale.

PubMed

Park, Crystal L; Wortmann, Jennifer H; Hale, Amy E; Cho, Dalnim; Blank, Thomas O

2014-10-01

Scientific advances in treatments and outcomes for those diagnosed with cancer in late adolescence and early adulthood depend, in part, on the availability of adequate assessment tools to measure health-related quality of life (HRQOL) for survivors in this age group. Domains especially relevant to late adolescence and young adulthood (LAYA; e.g., education and career, committed romantic relationships, worldview formation) are typically overlooked in studies assessing the impact of cancer, usually more appropriate for middle-aged or older survivors. Current HRQOL measures also tend to assess issues that are salient during or shortly after treatment rather than reflecting life years after treatment. To develop a new measure to better capture the experience of LAYA cancer survivors in longer-term survivorship (the LAYA Survivorship-Related Quality of Life measure, LAYA-SRQL), we completed an extensive measure development process. After a literature review and focus groups with LAYA cancer survivors, we generated items and ran confirmatory factor and reliability analyses using a sample of 292 LAYA cancer survivors. We then examined validity using existing measures of physical and mental health, quality of life, and impact of cancer. The final model consisted of two domains (satisfaction and impact), each consisting of ten factors: existential/spirituality, coping, relationship, dependence, vitality, health care, education/career, fertility, intimacy/sexuality, and cognition/memory. Confirmatory factor analysis and validity analyses indicated that the LAYA-SRQL is a psychometrically sound instrument with good validity. The LAYA-SRQL fills an important need in survivorship research, providing a way to assess HRQOL in LAYAs in a developmentally informed way.

Psychometric Analysis of the Three-Factor Eating Questionnaire-R18V2 in Adolescent and Young Adult-Aged Central Nervous System Tumor Survivors.

PubMed

Swartz, Maria C; Basen-Engquist, Karen M; Markham, Christine; Lyons, Elizabeth J; Cox, Matthew; Chandra, Joya; Ater, Joann L; Askins, Martha A; Scheurer, Michael E; Lupo, Philip J; Hill, Rachel; Murray, Jeffrey; Chan, Wenyaw; Swank, Paul R

2016-09-01

Adolescent and young adult (AYA)-aged central nervous system (CNS) tumor survivors are an understudied population that is at risk of developing adverse health outcomes, such as obesity. Long-term follow-up guidelines recommend monitoring those at risk of obesity, thus motivating the need for an eating behavior questionnaire. An abbreviated online version of the Three-Factor Eating Questionnaire (TFEQ-R18v2) has been developed, but its applicability to this population is not yet known. This study investigated the instrument's factor structure and reliability in this population. AYA-aged CNS tumor survivors (n = 114) aged 15-39 years completed the TFEQ-R18V2 questionnaire online. Confirmatory factor analysis was used to examine the fit of the three-factor structure (uncontrollable eating, cognitive restraint, and emotional eating [EE]) and reliability (internal consistency of the TFEQ-R18v2). Associations between the three factors and body mass index (BMI) were assessed by linear regression. The theorized three-factor structure was supported in our population (RMSEA = 0.056 and CFI = 0.98) and demonstrated good reliability (α of 0.81-0.93). EE (β = 0.07, 95% CI 0.02-0.13) was positively associated with BMI, whereas the other two subscale scores were not. The TFEQ-R18v2 instrument holds promise for research and clinical use among AYA-aged CNS tumor survivors. The instrument may be a useful tool for researchers to develop tailored weight management strategies. It also may be a valuable tool for clinicians to monitor survivors who are at risk of obesity and to facilitate referral. Our results also suggest that EE in this population should be further investigated as a potential target for intervention.

Occupational outcomes of adult childhood cancer survivors: A report from the childhood cancer survivor study.

PubMed

Kirchhoff, Anne C; Krull, Kevin R; Ness, Kirsten K; Park, Elyse R; Oeffinger, Kevin C; Hudson, Melissa M; Stovall, Marilyn; Robison, Leslie L; Wickizer, Thomas; Leisenring, Wendy

2011-07-01

The authors examined whether survivors from the Childhood Cancer Survivor Study were less likely to be in higher-skill occupations than a sibling comparison and whether certain survivors were at higher risk for lower-skill jobs. The authors created 3 mutually exclusive occupational categories for participants aged ≥ 25 years: Managerial/Professional, Nonphysical Service/Blue Collar, and Physical Service/Blue Collar. The authors examined currently employed survivors (4845) and their siblings (1727) in multivariable generalized linear models to evaluate the likelihood of being in 1 of the 3 occupational categories. Multinomial logistic regression was used among all participants to examine the likelihood of these outcomes compared to being unemployed (survivors, 6671; siblings, 2129). Multivariable linear models were used to assess survivor occupational differences by cancer-  and treatment-related variables. Personal income was compared by occupation. Employed survivors were less often in higher-skilled Managerial/Professional occupations (relative risk, 0.93; 95% confidence interval 0.89-0.98) than their siblings. Survivors who were black, were diagnosed at a younger age, or had high-dose cranial radiation were less likely to hold Managerial/Professional occupations than other survivors. In multinomial models, female survivors' likelihood of being in full-time Managerial/Professional occupations (27%) was lower than male survivors (42%) and female (41%) and male (50%) siblings. Survivors' personal income was lower than siblings within each of the 3 occupational categories in models adjusted for sociodemographic variables. Adult childhood cancer survivors are employed in lower-skill jobs than siblings. Survivors with certain treatment histories are at higher risk for lower-skill jobs and may require vocational assistance throughout adulthood. Copyright © 2011 American Cancer Society.

Exploring the Feasibility of Establishing a Retrospective Cohort of Survivors of Adolescent and Young Adult Cancer to Study Long-Term Health Outcomes in an Integrated Managed Care Environment

PubMed Central

Chiu, Vicki; Mueller, Lisa A.; Cooper, Robert

2013-01-01

Purpose To determine the feasibility of conducting survivorship research for long-term health outcomes with survivors of cancer diagnosed as an adolescent or young adult (AYA) and enrolled in Kaiser Permanente Southern California (KPSC), an integrated managed care organization. Methods Survivors diagnosed at ages 15–39 during 1990 and 2000 at KPSC were included. A 1:5 age-, gender-, and calendar-year-matched non-cancer KPSC comparison group was also identified. Date of cancer diagnosis was defined as the study baseline. KPSC insurance retention rate was calculated at 5 and 10 years post-baseline among survivors. Multivariable logistic regression was used to examine demographic and cancer characteristics associated with KPSC insurance retention at ≥5 years after baseline. Results A total of 6170 AYA cancer patients were identified: 4745 (77%) and 4471 (72%) survived at 5 and 10 years after diagnosis respectively. Of these survivors, 3654 (77%) and 2817 (63%) remained insured at KPSC at 5 and 10 years post-cancer diagnosis respectively. Those aged 20–29 years when diagnosed and those with stage 4 cancer were less likely to retain KPSC insurance than other survivors. For non-cancer comparison subjects, the KPSC insurance retention rate was lower: 66% at 5 years and 51% at 10 years post-baseline. Younger age, female gender, white race, and later calendar years of study baseline were associated with a lower likelihood of KPSC insurance retention. Conclusion These results demonstrate the feasibility and potential limitations of conducting survivorship research to characterize long-term health outcomes for survivors of AYA cancer in a large, integrated managed care organization. PMID:23781402

Amelioration of sexual fantasies to sexual abuse cues in an adult survivor of childhood sexual abuse: a case study.

PubMed

Wilson, Jane E; Wilson, Keith M

2008-12-01

Although sexual dysfunction of childhood sexual abuse survivors has received considerable attention, other sexual difficulties experienced by survivors of CSA, such as sexual fantasies to cues of sexual abuse, have received less attention. In this A-B design case study, a young adult female survivor of childhood sexual abuse presented for treatment at a Midwest rape crisis center. After successful treatment of post-traumatic stress disorder, she complained of unwanted sexual fantasies to sexual abuse cues and concomitant guilt and shame. Following baseline data collection, treatment consisted of self-applied aversion therapy to unwanted sexual arousal to sexual abuse cues. Decrease in sexual arousal to these cues was concurrent with the introduction of treatment. A concomitant decrease in guilt and shame occurred while self-ratings of control increased.

Occupational outcomes of adult childhood cancer survivors: A report from the Childhood Cancer Survivor Study

PubMed Central

Kirchhoff, Anne C.; Krull, Kevin R.; Ness, Kirsten K.; Park, Elyse R.; Oeffinger, Kevin C.; Hudson, Melissa M.; Stovall, Marilyn; Robison, Leslie L.; Wickizer, Thomas; Leisenring, Wendy

2010-01-01

Background We examined whether survivors from the Childhood Cancer Survivor Study were less likely to be in higher skill occupations than a sibling comparison and whether certain survivors were at higher risk. Methods We created three mutually-exclusive occupational categories for participants aged ≥25 years: Managerial/Professional and Non-Physical and Physical Service/Blue Collar. We examined currently employed survivors (N=4845) and siblings (N=1727) in multivariable generalized linear models to evaluate the likelihood of being in the three occupational categories. Among all participants, we used multinomial logistic regression to examine the likelihood of these outcomes in comparison to being unemployed (survivors N=6671; siblings N=2129). Multivariable linear models were used to assess survivor occupational differences by cancer and treatment variables. Personal income was compared by occupation. Results Employed survivors were less often in higher skilled Managerial/Professional occupations (Relative Risk=0.93, 95% Confidence Interval 0.89–0.98) than siblings. Survivors who were Black, were diagnosed at a younger age, or had high-dose cranial radiation were less likely to hold Professional occupations than other survivors. In multinomial models, female survivors’ likelihood of being in full-time Professional occupations (27%) was lower than male survivors (42%) and female (41%) and male (50%) siblings. Survivors’ personal income was lower than siblings within each of the three occupational categories in models adjusted for sociodemographic variables. Conclusions Adult childhood cancer survivors are employed in lower skill jobs than siblings. Survivors with certain treatment histories are at higher risk and may require vocational assistance throughout adulthood. PMID:21246530

Specialized survivor clinic attendance increases adherence to cardiomyopathy screening guidelines in adult survivors of childhood cancer.

PubMed

Marr, Kristin C; Agha, Mohammad; Sutradhar, Rinku; Pole, Jason D; Hodgson, David; Guttmann, Astrid; Greenberg, Mark; Nathan, Paul C

2017-10-01

To determine if attendance at a specialized clinic for adult survivors of childhood cancer is associated with better rates of adherence to the Children's Oncology Group (COG) Long-term Follow-up (LTFU) guidelines for cardiomyopathy screening. We conducted a retrospective population-based study using administrative data in Ontario, Canada of 5-year survivors diagnosed between 1986 and 2005 at risk of therapy-related late cardiomyopathy. Patients were classified into three groups based on the recommended frequency of screening: annual, every 2 years, and every 5 years. Of 1811 eligible survivors followed for median 7.8 years (range 0-14.0), patients were adherent to screening for only 8.6% of their period of follow-up. Survivor clinic utilization had the strongest association with increased rates of adherence: when compared to no attendance, ≥ 5 clinic visits/10-year period had RR of adherence of 10.6 (95% CI 5.7-19.5) in the annual group, 3.3 (95% CI 2.3-4.8) in the every 2-year group, and 2.3 (95% CI 1.6-3.2) in the every 5-year group. Additional factors associated with increased adherence after adjusting for clinic attendance included annual assessment by a general practioner, female sex, diagnosis prior to 2003, and living in a rural area. In a model of specialized survivor care, increased clinic utilization is associated with improved patient adherence to COG LTFU cardiomyopathy screening guidelines. Specialized survivor clinics may improve health outcomes in survivors through improved adherence to screening. However, rates of adherence remain suboptimal and further multifacetted strategies need to be explored to improve overall rates of screening in adult survivors of childhood cancer.

Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation

PubMed Central

Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

2017-01-01

Background This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Objective The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of “How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?” Methods The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. Results The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1

Unemployment among adult survivors of childhood cancer: a report from the childhood cancer survivor study.

PubMed

Kirchhoff, Anne C; Leisenring, Wendy; Krull, Kevin R; Ness, Kirsten K; Friedman, Debra L; Armstrong, Gregory T; Stovall, Marilyn; Park, Elyse R; Oeffinger, Kevin C; Hudson, Melissa M; Robison, Leslie L; Wickizer, Thomas

2010-11-01

Adult childhood cancer survivors report high levels of unemployment, although it is unknown whether this is because of health or employability limitations. We examined 2 employment outcomes from 2003 in the Childhood Cancer Survivor Study (CCSS): (1) health-related unemployment and (2) unemployed but seeking work. We compared survivors with a nearest-age CCSS sibling cohort and examined demographic and treatment-related risk groups for each outcome. We studied 6339 survivors and 1967 siblings ≥25 years of age excluding those unemployed by choice. Multivariable generalized linear models evaluated whether survivors were more likely to be unemployed than siblings and whether certain survivors were at a higher risk for unemployment. Survivors (10.4%) reported health-related unemployment more often than siblings (1.8%; Relative Risk [RR], 6.07; 95% Confidence Interval [CI], 4.32-8.53). Survivors (5.7%) were more likely to report being unemployed but seeking work than siblings (2.7%; RR, 1.90; 95% CI, 1.43-2.54). Health-related unemployment was more common in female survivors than males (Odds Ratio [OR], 1.73; 95% CI, 1.43-2.08). Cranial radiotherapy doses ≥25 Gy were associated with higher odds of unemployment (health-related: OR, 3.47; 95% CI, 2.54-4.74; seeking work: OR, 1.77; 95% CI, 1.15-2.71). Unemployed survivors reported higher levels of poor physical functioning than employed survivors, and had lower education and income and were more likely to be publicly insured than unemployed siblings. Childhood cancer survivors have higher levels of unemployment because of health or being between jobs. High-risk survivors may need vocational assistance.

Many Survivors of Adolescent and Young Adult Cancers Have Chronic Health Problems

Cancer.gov

A 2012 study showed that people who’d had cancer as adolescents and young adults were more likely to be current smokers, be obese, have various chronic conditions, be disabled, and have poor mental and physical health. The findings highlight the importance of addressing the special needs and concerns of this population.

Very small embryonic-like stem cells (VSELs) detected in azoospermic testicular biopsies of adult survivors of childhood cancer.

PubMed

Kurkure, Purna; Prasad, Maya; Dhamankar, Vandana; Bakshi, Ganesh

2015-11-09

Infertility is a known side-effect of oncotherapy in cancer survivors, and often compromises the quality of life. The present study was undertaken to detect very small embryonic-like stem cells (VSELs) in testicular biopsies from young adult survivors of childhood cancer who had azoospermia. VSELs have been earlier reported in human and mouse testes. They resist busulphan treatment in mice and potentially restore spermatogenesis when the somatic niche is restored by transplanting Sertoli or mesenchymal cells. VSELs also have the potential to differentiate into sperm in vitro. The study had clearance from Institutional review board (IRB). Seven azoospermic survivors of childhood cancer were included in the study after obtaining their informed consent. Semen analysis was done to confirm azoospermia prior to inclusion in the study. Testicular biopsies were performed at the Uro-oncology Unit of the hospital and then used for various studies to detect VSELs. Hematoxylin and Eosin stained tubular sections confirmed azoospermia and smears revealed the presence of very small, spherical VSELs with high nucleo-cytoplasmic ratio, in addition to the Sertoli cells. Immuno-localization studies on testicular smears showed that the VSELs were CD133+/CD45-/LIN-, expressed nuclear OCT-4, STELLA and cell surface SSEA-4. Pluripotent transcripts Oct-4A, Nanog and Sox-2 were detected in azoospermic samples whereas marked reduction was observed in germ cell markers Oct-4 and Boule. The present study demonstrates the presence of pluripotent VSELs in the testicular biopsy of azoospermic adult survivors of childhood cancer. It is likely that these persisting VSELs can restore spermatogenesis as demonstrated in mice studies. Therefore, pilot studies need to be undertaken using autologous mesenchymal cells with a hope to restore testicular function and fertility in cancer survivors. The results of this study assume a great significance in the current era, where cryopreservation of testicular

Motivations associated with physical activity in young breast cancer survivors.

PubMed

Voege, Patricia; Bower, Julienne E; Stanton, Annette L; Ganz, Patricia A

2015-01-01

Physical activity is associated with positive health outcomes in breast cancer survivors. However, factors that promote or discourage physical activity in this population are not fully understood. This cross-sectional study was designed to examine approach and avoidance motivations, barriers for exercise, and their association with physical activity in breast cancer survivors younger than 50 years old at time of diagnosis. Current physical activity levels, approach and avoidance motivations, and barriers to exercise were assessed through self-report questionnaires in young breast cancer survivors (N = 156). Results indicated that barriers to exercise were negatively associated with physical activity (p < .01) while approach motivations were positively associated with physical activity (p < .01) and were most relevant in the context of low perceived barriers (p < .05). Avoidance motivations were not associated with physical activity (p = .91).

Personality and psychological distress among older adult, long-term cancer survivors.

PubMed

Deimling, Gary T; Albitz, Casey; Monnin, Kara; Renzhofer Pappada, Holly T; Nalepa, Elizabeth; Boehm, Melinda Laroco; Mitchell, Claire

2017-01-01

This research examines a model of how personality (Five-Factor Model) is related to adjustment to cancer in later life in terms of the presence of continuing cancer-related worry and depression among older adult, long-term cancer survivors. Data from an NCI-funded study with 275 older adult (age 60+), long-term (5+ years) survivors of breast, prostate, and colorectal cancer were examined. Regression analyses identified neuroticism as the strongest predictor of cancer-related worry along with continuing cancer-related symptoms. For depression, three personality dimensions (neuroticism, conscientiousness, and agreeableness) were significant predictors. Findings suggest the importance of considering the central role that survivors' personality characteristics play in understanding cancer-related worries and depression. Understanding these dispositional characteristics is key for social workers and health-care practitioners in counseling survivors experiencing these common mental health effects.

Psychometric Evaluation of an Adolescent and Young Adult Module of the Impact of Cancer Instrument.

PubMed

Husson, Olga; Zebrack, Bradley J

2017-03-01

To develop and evaluate a new instrument that measures unique aspects of long-term survivorship for people diagnosed with cancer as Adolescent and Young Adult (AYA), not measured by existing tools. A new candidate instrument-the Impact of Cancer for Adolescent and Young Adult (IOC-AYA) cancer survivors-was developed and administered to AYA cancer survivors aged 18-35 years who were 15-29 years old when diagnosed with cancer. Psychometric properties of newly derived scales were assessed. Factor analyses of items derived seven new and specific subscales: Social Life; Uncertainties, Worries and Wonders; Cognitive Function; Sense of Purpose/Life Goals; Identity; Health Behaviors; and Health Literacy. Two separate and conditional subscales were formed: Relationship Concerns (partnered/unpartnered) and Having Children (at least one child/no children). Internal consistency measurements for these subscales ranged from 0.70 to 0.90. Expected associations within and among IOC-AYA subscales and standardized measures of quality of life were observed. Psychometric analyses indicated that this initial version of the IOC-AYA measures distinct and relevant constructs for survivors diagnosed with cancer in adolescence and young adulthood. Future work is needed to confirm the responsiveness to change and further validate the instrument in multiple and representative samples. Use of the IOC-AYA instrument in research and clinical practice will inform the development of psychosocial and supportive care interventions that not only minimize or prevent long-term deleterious effects of cancer but also promote positive adaptation, resilience, and the achievement of age-specific developmental tasks.

Adult Attachment and Longterm Effects in Survivors of Incest.

ERIC Educational Resources Information Center

Alexander, Pamela C.; Anderson, Catherine L.; Brand, Bethany; Schaeffer, Cindy M.; Grelling, Barbara Z.; Kretz, Lisa

1998-01-01

Ninety-two adult female incest survivors were interviewed and completed measures of current functioning. Hierarchical regression analyses suggested that adult attachment behavior was significantly associated with personality structure, depression, and distress; and abuse severity was associated with posttraumatic stress disorder symptoms and…

Economic independence in survivors of cancer diagnosed at a young age: A Norwegian national cohort study

PubMed Central

Lie, Rolv Terje; Bjørge, Tone; Syse, Astri; Ruud, Ellen; Wesenberg, Finn; Moster, Dag

2016-01-01

BACKGROUND The impact of cancer on socioeconomic outcomes is attracting attention as the number of survivors of cancer in young age continues to rise. This study examines economic independence in a national cohort of survivors of cancer at a young age in Norway. METHODS Through the linkage of several national registries, the study cohort comprised 1,212,013 individuals born in Norway during 1965 through 1985, of which 5440 had received a cancer diagnosis before age 25 years. Follow‐up was through 2007, and the main outcomes were receipt of governmental financial assistance, employment, income, and occupation. Analytic methods included Cox proportional hazard regression, log‐binomial regression, and quantile regression models. RESULTS Individuals in the cancer survivor group had an increased probability of receiving governmental financial assistance (men: hazard ratio [HR], 1.4; 95% confidence interval [CI], 1.3‐1.5; women: HR, 1.5; 95% CI, 1.3‐1.6) and of not being employed (men: HR, 1.4; 95% CI, 1.2‐1.7; women: HR, 1.4; 95% CI, 1.2‐1.6) compared with those in the noncancer group. Income discrepancies were particularly pronounced for survivors of central nervous system tumors. There was no difference in representation in higher skilled occupations. CONCLUSIONS Survivors of cancer at a young age in Norway had an increased risk of being economically dependent and unemployed. This was evident in several tumor groups and was most pronounced in female survivors. There were only small differences in income or representation in higher skilled occupations for most employed survivors compared with the noncancer group. The current results are important for understanding the impact of a cancer diagnosis at a young age on subsequent job market outcomes. Cancer 2016;122:3873–3882. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. PMID:27518040

Disruption of White Matter Integrity in Adult Survivors of Childhood Brain Tumors: Correlates with Long-Term Intellectual Outcomes.

PubMed

King, Tricia Z; Wang, Liya; Mao, Hui

2015-01-01

. Radiation and adjunct chemotherapy treatment may play a role in greater white matter disruption. The relationships between white matter integrity and IQ, as well as cumulative neurological risk factors exist in young adult survivors of childhood brain tumors.

Survivorship Care in Reducing Symptoms in Young Adult Cancer Survivors

ClinicalTrials.gov

2017-10-13

Breast Carcinoma; Cancer Survivor; Depression; Fatigue; Leukemia; Lymphoma; Malignant Bone Neoplasm; Malignant Digestive System Neoplasm; Malignant Female Reproductive System Neoplasm; Malignant Male Reproductive System Neoplasm; Pain; Sleep Disorder; Soft Tissue Sarcoma

Increased Body Adiposity and Serum Leptin Concentrations in Very Long-Term Adult Male Survivors of Childhood Acute Lymphoblastic Leukemia.

PubMed

Jahnukainen, Kirsi; Heikkinen, Risto; Henriksson, Markus; Andersson, Sture; Ivaska, Kaisa K; Puukko-Viertomies, Leena-Riitta; Mäkitie, Outi

2015-01-01

We evaluated the body composition and its association with hypogonadism in adult male long-term acute lymphoblastic leukemia (ALL) survivors. The cohort included 49 long-term male ALL survivors and 55 age-matched healthy controls. Fat and lean mass was assessed by dual-energy X-ray absorptiometry; blood biochemistry was obtained for adipokines and testicular endocrine markers. As compared with controls, the ALL survivors (median age 29 years, range 25-38), assessed 10-28 years after ALL diagnosis, had higher percentages of body (p < 0.05) and trunk fat mass (p < 0.05), and a lower body lean mass (p < 0.001). Survivors had significantly higher levels of leptin and adiponectin and lower levels of insulin-like growth factor-binding protein 3. Body fat mass and percent fat mass correlated with serum leptin and sex hormone-binding globulin (SHBG) levels. Altogether, 15% of the ALL survivors and 9% of age-matched controls were obese (BMI ≥ 30). Obese survivors more often had hypogonadism, had received testicular irradiation, and needed testosterone replacement therapy compared to nonobese survivors. At young adulthood, long-term male ALL survivors have significantly increased body adiposity despite normal weight and BMI. Potential indicators of increased adiposity included high leptin and low SHBG levels. Serum testicular endocrine markers did not correlate with body adiposity. © 2015 S. Karger AG, Basel.

Cancer survivor identity shared in a social media intervention.

PubMed

Song, Hayeon; Nam, Yujung; Gould, Jessica; Sanders, W Scott; McLaughlin, Margaret; Fulk, Janet; Meeske, Kathleen A; Ruccione, Kathleen S

2012-01-01

This study investigates how cancer survivors construct their identities and the impact on their psychological health, as measured by depression and survivor self-efficacy. Fourteen young adult survivors of pediatric cancer participated in a customized social networking and video blog intervention program, the LIFECommunity, over a 6-month period. Survivors were asked to share their stories on various topics by posting video messages. Those video blog postings, along with survey data collected from participants, were analyzed to see how cancer survivors expressed their identities, and how these identities are associated with survivors' psychosocial outcomes. In survivors who held negative stereotypes about cancer survivors, there was a positive relationship with depression while positive stereotypes had a marginal association with cancer survivor efficacy. Findings indicate that although pediatric cancer survivors often do not publicly discuss a "cancer survivor identity," they do internalize both positive and negative stereotypes about cancer survivorship. It is important for practitioners to be aware of the long-term implications of cancer survivor identity and stereotypes.

Ovarian stimulation in young adult cancer survivors on targeted cancer therapies

PubMed Central

Su, H. Irene; Connell, Meghan W.; Bazhenova, Lyudmila A.

2016-01-01

Objective To describe a clinical approach to and outcomes of in vitro fertilization in reproductive-aged cancer survivors on targeted cancer therapies. Design Case report Setting Academic fertility preservation program Patients The first case is of a female patient with metastatic lung cancer on long-term crizotinib, an ALK inhibitor. The second case is of a female patient with metastatic colon cancer on long-term denosumab, a RANKL antibody. Both patients presented desiring fertility. Interventions In vitro fertilization Main outcome measures Live birth and embryo banking Results The potential impact of targeted therapy on oocytes and pregnancy was investigated via literature review and pharmaceutical company inquiries. Following oncologic, fertility and psychological counseling, both survivors underwent ovarian stimulation, in vitro fertilization and preimplantation genetic screening. One couple achieved live births of dizygotic twins via gestational surrogacy. The second couple froze one euploid blastocyst for future fertility. Both survivors are stable from their cancer standpoints. Conclusion Successful fertility treatments are possible in the context of exposure to crizotinib, and denosumab. PMID:27565250

Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation.

PubMed

Vollmer Dahlke, Deborah; Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

2017-02-10

This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of "How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?" The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784

Suicide and violent deaths in survivors of cancer in childhood, adolescence and young adulthood-A national cohort study.

PubMed

Gunnes, Maria W; Lie, Rolv T; Bjørge, Tone; Ghaderi, Sara; Syse, Astri; Ruud, Ellen; Wesenberg, Finn; Moster, Dag

2017-02-01

Suicide risk in adult cancer patients is found to be elevated, but limited information exists regarding risks of suicide and non-suicidal violent deaths when diagnosed with cancer in young age. We investigate suicide and violent deaths in a national cohort including individuals diagnosed with cancer before age 25. Through the linkage of different national registries (Cancer Registry of Norway, Norwegian Causes of Death Registry and the National Registry) a cohort of all live births in Norway during 1965-1985 was defined and followed up through 2008. Individuals diagnosed with cancer before age 25 and the cancer-free references were compared using an extended Cox proportional hazard regression model. The cohort comprised 1,218,013 individuals, including 5,440 diagnosed with cancer before age 25. We identified 24 suicides and 14 non-suicidal violent deaths in the cancer group. The hazard ratio (HR) of suicide in the cancer group was 2.5 (95% confidence interval (CI) 1.7-3.8), and was increased both when diagnosed with cancer in childhood (0-14 years of age); HR = 2.3 (95% CI: 1.2-4.6), and during adolescence/young adulthood (15-24 years); HR = 2.6 (95% CI: 1.5-4.2). Survivors of bone/soft tissue sarcomas, CNS tumors and testicular cancer were at particular risk. The risk of non-suicidal violent death was not increased in the cancer survivors (HR = 1.0; 95% CI: 0.6-1.7). Although based on small numbers and the absolute risk of suicide being low, these are novel findings with important implications for establishing adequate follow-up including suicide prevention strategies for young cancer survivors. © 2016 UICC.

Increased risk of second malignant neoplasms in adolescents and young adults with cancer.

PubMed

Lee, Jean S; DuBois, Steven G; Coccia, Peter F; Bleyer, Archie; Olin, Rebecca L; Goldsby, Robert E

2016-01-01

The authors describe the incidence and characteristics of secondary malignant neoplasms (SMNs) in adolescent and young adult (AYA) cancer survivors compared with those in younger and older cancer survivors. Children aged ≤ 14 years, AYAs aged 15 to 39, and older adults aged ≥ 40 years at the time of primary diagnosis who were reported as cancer survivors in the Surveillance, Epidemiology, and End Results (SEER) program between 1973 and 2011 were compared in this population-based analysis. The primary analysis was the risk that an SMN would occur ≥ 5 years after the original diagnosis for patients who had the more common AYA cancers (leukemia, lymphoma, testicular malignancy, ovarian malignancy, melanoma, and cancers of the thyroid, breast, soft tissue, or bone). The standardized incidence ratio (SIR), absolute excess risk (AER), and cumulative incidence of SMN for the selected cancers were assessed. The risk of SMN for the entire cohort also was analyzed. Of the 148,558 AYA survivors who were diagnosed with a selected cancer, 7384 developed an SMN 5 years after their original diagnosis. The SIRs (95% confidence intervals [CIs]) were 1.58 (95% CI, 1.55-1.62) for AYAs, 4.26 (95% CI, 3.77-4.80) for children, and 1.10 (95% CI, 1.09-1.11) for older adults, and the AERs were 22.9, 16.6, and 14.7, respectively. The cumulative incidence of SMN at 30 years was 13.9% for the AYA group. The most common SMNs in AYAs were breast cancer, gastrointestinal cancer, genital cancers, and melanoma. AYAs who had received radiation therapy had a higher cumulative incidence of SMN. AYAs who survive cancer for more than 5 years have a higher relative risk of SMN compared with the general population and have a higher absolute risk of SMN compared with younger or older cancer survivors. © 2015 American Cancer Society.

Workplace experiences and turnover intention among adult survivors of childhood cancer.

PubMed

Crom, Deborah B; Ness, Kirsten K; Martinez, Larry R; Hebl, Michelle R; Robison, Leslie L; Hudson, Melissa M; Brinkman, Tara M

2018-03-17

The purpose of this study was to investigate workplace experiences and turnover intention (consideration of leaving or changing a job) and to examine factors associated with turnover intention among survivors. Adult survivors of childhood cancer with a history of employment (n = 289) completed measures of workplace experiences (n = 50, 18-29 years; n = 183, 30-44 years; n = 56; > 45 years of age at follow-up). Turnover intention was assessed using three items from the Job Satisfaction Scale. Responses were dichotomized as reflecting high vs. low turnover intention. Path analysis was used to estimate the influence of demographic characteristics, treatment exposures (cranial radiation therapy [CRT]), and workplace experiences on turnover intention. Thirty percent of survivors reported high turnover intention (95% CL, 25 to 36%). Exposure to CRT (P = 0.003), older attained age (P < 0.001), experiencing formal workplace discrimination (P = 0.008), and having lower continuance (P < 0.001) or affective commitment (P < 0.001) were associated with high turnover intention among survivors. Informal discrimination, mediated through job satisfaction, also influenced survivors' reported intent to leave their jobs. One third of adult survivors of childhood cancer report turnover intention, which is related to their cancer treatment, but more temporally proximal, workplace discrimination. Additional research is needed to understand the consequences of turnover intention among survivors. Survivors and their health care providers should be aware of legislative policies related to workplace discrimination (e.g., American with Disabilities Act) and related implications for job turnover.

Applying Social Network Analysis to Identify the Social Support Needs of Adolescent and Young Adult Cancer Patients and Survivors.

PubMed

Koltai, Kolina; Walsh, Casey; Jones, Barbara; Berkelaar, Brenda L

2018-04-01

This article examines how theoretical and clinical applications of social network analysis (SNA) can inform opportunities for innovation and advancement of social support programming for adolescent and young adult (AYA) cancer patients and survivors. SNA can help address potential barriers and challenges to initiating and sustaining AYA peer support by helping to identify the diverse psychosocial needs among individuals in the AYA age range; find strategic ways to support and connect AYAs at different phases of the cancer trajectory with resources and services; and increase awareness of psychosocial resources and referrals from healthcare providers. Network perspectives on homophily, proximity, and evolution provide a foundational basis to explore the utility of SNA in AYA clinical care and research initiatives. The uniqueness of the AYA oncology community can also provide insight into extending and developing current SNA theories. Using SNA in AYA psychosocial cancer research has the potential to create new ideas and pathways for supporting AYAs across the continuum of care, while also extending theories of SNA. SNA may also prove to be a useful tool for examining social support resources for AYAs with various chronic health conditions and other like groups.

Menopausal symptoms in young survivors of breast cancer: a growing problem without an ideal solution.

PubMed

Murthy, Vijayashree; Chamberlain, Ronald S

2012-10-01

New breast cancers occur in 25% to 30% of women < 50 years of age. These young women undergo ablative surgery, chemotherapy, or hormonal/targeted treatment. These treatments have resulted in increased survival but at the expense of early menopause, marked by distressing vasomotor symptoms, sexual dysfunction, decreased metabolism, and musculoskeletal and cardiovascular effects. A comprehensive literature search was performed using PubMed. This article reviews the evidence-based approaches to the treatment of these distressing symptoms in young breast cancer survivors. Menopausal symptoms in young patients are typically more severe due to the abrupt and rapid decrease in estrogen, and chemotherapy and hormones worsen these symptoms. Evidence supporting the efficacy of most complementary therapies is scarce. Behavioral modification and yoga may be helpful in mild cases of vasomotor symptoms, whereas newer antidepressants are promising in moderate to severe cases, and stellate ganglion block may be used in refractory cases. Local vaginal moisturizers, and in refractory cases low-dose estrogen creams, may ameliorate most urogenital symptoms. Bisphosphonates, vitamin D, and calcium can treat osteoporosis, and weight-bearing exercises decrease bone mineral density loss and help to control weight. Smoking cessation, exercise, and dietary modifications should be recommended to all young patients to decrease cardiac morbidity. At present, there is insufficient evidence to support any natural agent as a viable alternative to hormone replacement therapy to treat these symptoms. No single agent can ameliorate vasomotor, cardiac, skeletal, and sexual concerns of young breast cancer survivors coping with menopausal symptoms. Quality-of-life research involving premenopausal breast cancer survivors is lacking. Further study is needed to identify safe and effective treatments for menopausal symptoms and to confirm their long-term safety in young breast cancer survivors.

Economic independence in survivors of cancer diagnosed at a young age: A Norwegian national cohort study.

PubMed

Gunnes, Maria W; Lie, Rolv Terje; Bjørge, Tone; Syse, Astri; Ruud, Ellen; Wesenberg, Finn; Moster, Dag

2016-12-15

The impact of cancer on socioeconomic outcomes is attracting attention as the number of survivors of cancer in young age continues to rise. This study examines economic independence in a national cohort of survivors of cancer at a young age in Norway. Through the linkage of several national registries, the study cohort comprised 1,212,013 individuals born in Norway during 1965 through 1985, of which 5440 had received a cancer diagnosis before age 25 years. Follow-up was through 2007, and the main outcomes were receipt of governmental financial assistance, employment, income, and occupation. Analytic methods included Cox proportional hazard regression, log-binomial regression, and quantile regression models. Individuals in the cancer survivor group had an increased probability of receiving governmental financial assistance (men: hazard ratio [HR], 1.4; 95% confidence interval [CI], 1.3-1.5; women: HR, 1.5; 95% CI, 1.3-1.6) and of not being employed (men: HR, 1.4; 95% CI, 1.2-1.7; women: HR, 1.4; 95% CI, 1.2-1.6) compared with those in the noncancer group. Income discrepancies were particularly pronounced for survivors of central nervous system tumors. There was no difference in representation in higher skilled occupations. Survivors of cancer at a young age in Norway had an increased risk of being economically dependent and unemployed. This was evident in several tumor groups and was most pronounced in female survivors. There were only small differences in income or representation in higher skilled occupations for most employed survivors compared with the noncancer group. The current results are important for understanding the impact of a cancer diagnosis at a young age on subsequent job market outcomes. Cancer 2016;122:3873-3882. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Perceptions of Childhood Sexual Abuse Survivors: Development and Initial Validation of a New Scale to Measure Stereotypes of Adult Survivors of Childhood Sexual Abuse

ERIC Educational Resources Information Center

Zafar, Sadia; Ross, Erin C.

2013-01-01

The Childhood Sexual Abuse Stereotypes Scale was developed to assess stereotypes of adult survivors of childhood sexual abuse. Scale items were derived from two studies that elicited cultural and personal beliefs about, and emotions experienced towards adult childhood sexual abuse survivors among university undergraduates. Two scales, Emotions and…

Recommendations for Premature Ovarian Insufficiency Surveillance for Female Survivors of Childhood, Adolescent, and Young Adult Cancer: A Report From the International Late Effects of Childhood Cancer Guideline Harmonization Group in Collaboration With the PanCareSurFup Consortium.

PubMed

van Dorp, Wendy; Mulder, Renée L; Kremer, Leontien C M; Hudson, Melissa M; van den Heuvel-Eibrink, Marry M; van den Berg, Marleen H; Levine, Jennifer M; van Dulmen-den Broeder, Eline; di Iorgi, Natascia; Albanese, Assunta; Armenian, Saro H; Bhatia, Smita; Constine, Louis S; Corrias, Andreas; Deans, Rebecca; Dirksen, Uta; Gracia, Clarisa R; Hjorth, Lars; Kroon, Leah; Lambalk, Cornelis B; Landier, Wendy; Levitt, Gill; Leiper, Alison; Meacham, Lillian; Mussa, Alesandro; Neggers, Sebastian J; Oeffinger, Kevin C; Revelli, Alberto; van Santen, Hanneke M; Skinner, Roderick; Toogood, Andrew; Wallace, William H; Haupt, Riccardo

2016-10-01

Female survivors of childhood, adolescent, and young adult (CAYA) cancer who were treated with alkylating agents and/or radiation, with potential exposure of the ovaries, have an increased risk of premature ovarian insufficiency (POI). Clinical practice guidelines can facilitate these survivors' access to optimal treatment of late effects that may improve health and quality of survival; however, surveillance recommendations vary among the existing long-term follow-up guidelines, which impedes the implementation of screening. The present guideline was developed by using an evidence-based approach and summarizes harmonized POI surveillance recommendations for female survivors of CAYA cancer who were diagnosed at age < 25 years. The recommendations were formulated by an international multidisciplinary panel and graded according to the strength of the evidence and the potential benefit gained from early detection and intervention. The harmonized POI surveillance recommendations were developed by using a transparent process and are intended to facilitate care for survivors of CAYA cancer. The harmonized set of POI surveillance recommendations is intended to be scientifically rigorous, to positively influence health outcomes, and to facilitate the care for female survivors of CAYA cancer. © 2016 by American Society of Clinical Oncology.

Losing a loved one to homicide: prevalence and mental health correlates in a national sample of young adults.

PubMed

Zinzow, Heidi M; Rheingold, Alyssa A; Hawkins, Alesia O; Saunders, Benjamin E; Kilpatrick, Dean G

2009-02-01

The present study examined the prevalence, demographic distribution, and mental health correlates of losing a loved one to homicide. A national sample of 1,753 young adults completed structured telephone interviews measuring violence exposure, mental health diagnoses, and loss of a family member or close friend to a drunk driving accident (vehicular homicide) or murder (criminal homicide). The prevalence of homicide survivorship was 15%. African Americans were more highly represented among criminal homicide survivors. Logistic regression analyses found that homicide survivors were at risk for past year posttraumatic stress disorder (OR = 1.88), major depressive episode (OR = 1.64), and drug abuse/dependence (OR = 1.77). These findings highlight the significant mental health needs of homicide survivors.

Losing a Loved One to Homicide: Prevalence and Mental Health Correlates in a National Sample of Young Adults

PubMed Central

Zinzow, Heidi; Rheingold, Alyssa A.; Hawkins, Alesia; Saunders, Benjamin E.; Kilpatrick, Dean G.

2010-01-01

The present study examined the prevalence, demographic distribution, and mental health correlates of losing a loved one to homicide. A national sample of 1753 young adults completed structured telephone interviews measuring violence exposure, mental health diagnoses, and loss of a family member or close friend to a drunk driving accident (vehicular homicide) or murder (criminal homicide). The prevalence of homicide survivorship was 15.2%. African Americans were more highly represented among criminal homicide survivors. Logistic regression analyses found that homicide survivors were at risk for past year posttraumatic stress disorder (OR = 1.88), major depressive episode (OR = 1.64), and drug abuse/dependence (OR = 1.77). These findings highlight the significant mental health needs of homicide survivors. PMID:19230006

Evaluating Questionnaires Used to Assess Self-Reported Physical Activity and Psychosocial Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Cognitive Interview Study.

PubMed

Wurz, Amanda; Brunet, Jennifer

2017-09-01

Physical activity is increasingly being studied as a way to improve psychosocial outcomes (e.g., quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, posttraumatic growth) among survivors of adolescent and young adult (AYA) cancer. Assessing levels of and associations between self-reported physical activity and psychosocial outcomes requires clear, appropriate, and relevant questionnaires. To explore how survivors of AYA cancer interpreted and responded to the following eight published questionnaires: Leisure Time Exercise Questionnaire, Exercise Self-Efficacy Scale, Physical Self-Description Questionnaire, Rosenberg Global Self-Esteem Scale, Multidimensional Body-Self Relations Questionnaire, Posttraumatic Growth Inventory, Functional Assessment of Cancer Therapy-General (FACT-G), RAND 36-Item Health Survey 1.0 (RAND-36), cognitive interviews were conducted with three men and four women age 18-36 years who were diagnosed with cancer at age 16-35 years. Initially, the first seven questionnaires listed above were assessed. Summaries of the interviews were prepared and compared across participants. Potential concerns were identified with the FACT-G; thus, a second interview was conducted with participants to explore the clarity, appropriateness, and relevance of the RAND-36. Concerns identified for the FACT-G related mostly to the lack of relevance of items pertaining to cancer-specific aspects of quality of life given that participants were posttreatment. No or few concerns related to comprehension and/or structure/logic were identified for the other questionnaires. In general, the questionnaires assessed were clear, appropriate, and relevant. Participants' feedback suggested they could be used to assess self-reported physical activity and varied psychosocial outcomes in studies with survivors of AYA cancer, either with or without slight modifications.

Adult survivors of childhood cancers' identity disclosures in the workplace.

PubMed

Martinez, Larry R; Hebl, Michelle R

2016-04-01

Recent medical advances have resulted in unprecedented increases in the number and vitality of employed adult survivors. These survivors must make decisions about whether or not to disclose their identities to others. The purpose of this study was to examine the characteristics that are related to cancer survivorship disclosure in workplace settings (perceived organizational support, centrality of survivorship to one's self-concept, and the degree to which family and friends know about one's survivor status) and an important organizational consequence: intentions to leave one's job. A total of 151 adult survivors of childhood cancer completed an online survey. Extent of disclosure of one's identity as a cancer survivor was negatively associated with turnover intentions. Furthermore, organizational support, identity centrality, and disclosure outside of work were all related to disclosure in the workplace. Relative weight analysis revealed that disclosure outside of work was the most strongly related to disclosure at work. Finally, there were indirect relations such that disclosure mediated the relations among organizational support, identity centrality, and disclosure outside of work and turnover intentions. Survivors who were more open about their cancer survivor status at work had fewer intentions to leave their organizations. Importantly, although some antecedents to disclosure were personal characteristics, organizations can also encourage identity disclosure demonstrating that they are related to of work retention. While disclosure in the workplace is a complex decision to make, the relationship with work retention may reflect that disclosure is more likely to occur in an existing positive work environment or that disclosure itself may contribute to a positive work environment where employees tend to remain. The specific factors that trigger both disclosure and retention require further study although they are clearly related.

Predictors of clinic satisfaction among adult survivors of childhood cancer.

PubMed

Absolom, Kate; Greenfield, Diana; Ross, Richard; Horne, Beverly; Davies, Helena; Glaser, Adam; Simpson, Adrian; Waite, Heather; Eiser, Christine

2006-07-01

Childhood cancer survivors experience a wide range of late-effects. As survival rates improve, follow-up in paediatric clinics becomes less feasible, and alternative models of care have been proposed. In this study, satisfaction among those attending a traditional paediatric late-effects clinic was compared with a multi-disciplinary clinic in an adult setting. Survivors (adult clinic n=93, paediatric clinic n=105, age 16-39 years) completed measures of symptoms, understanding of vulnerability to late-effects, purpose of follow-up, satisfaction and number of topics discussed. Predictors of satisfaction were: number of topics discussed, greater understanding of the purpose of follow-up and sex. Females, and those reporting longer waiting time were less satisfied. Aspects of clinic organisation, including shorter waiting times and opportunities to discuss health concerns, are more important in determining patient satisfaction than clinic type. Survivors' understanding of the purpose of follow-up is also integral in determining satisfaction.

Within the Box: Cross-Cultural Art Therapy with Survivors of the Rwanda Genocide

ERIC Educational Resources Information Center

Chu, Valerie

2010-01-01

This article discusses the creative making of boxes as a cross-cultural art therapy intervention in Kigali, Rwanda, with survivors of the 1994 Rwandan genocide. The box as an art form is particularly applicable with young adult survivors, given the nature of their prodigious trauma and the possibility of posttraumatic stress disorder, as well as…

A French national breast and thyroid cancer screening programme for survivors of childhood, adolescent and young adult (CAYA) cancers - DeNaCaPST programme.

PubMed

Demoor-Goldschmidt, Charlotte; Drui, Delphine; Doutriaux, Isabelle; Michel, Gérard; Auquier, Pascal; Dumas, Agnès; Berger, Claire; Bernier, Valérie; Bohrer, Sandrine; Bondiau, Pierre-Yves; Filhon, Bruno; Fresneau, Brice; Freycon, Claire; Stefan, Dinu; Helfre, Sylvie; Jackson, Angela; Kerr, Christine; Laprie, Anne; Leseur, Julie; Mahé, Marc-André; Oudot, Caroline; Pluchard, Claire; Proust, Stéphanie; Sudour-Bonnange, Hélène; Vigneron, Céline; Lassau, Nathalie; Schlumberger, Martin; Conter, Cécile Faure; de Vathaire, Florent

2017-05-12

Survival of childhood, adolescent and young adult (CAYA) cancers has increased with progress in the management of the treatments and has reached more than 80% at 5 years. Nevertheless, these survivors are at great risk of second cancers and non-malignant co-morbidities in later life. DeNaCaPST is a non-interventional study whose aim is to organize a national screening for thyroid cancer and breast cancer in survivors of CAYA cancers. It will study the compliance with international recommendations, with the aim, regarding a breast screening programme, of offering for every woman living in France, at equal risk, an equal screening. DeNaCaPST trial is coordinated by the INSERM 1018 unit in cooperation with the LEA (French Childhood Cancer Survivor Study for Leukaemia) study's coordinators, the long term follow up committee and the paediatric radiation committee of the SFCE (French Society of Childhood Cancers). A total of 35 centres spread across metropolitan France and la Reunion will participate. FCCSS (French Childhood Cancer Survivor Study), LEA and central registry will be interrogated to identify eligible patients. To participate, centers agreed to perform a complete "long-term follow-up consultations" according to good clinical practice and the guidelines of the SFCE (French Society of Children Cancers). As survival has greatly improved in childhood cancers, detection of therapy-related malignancies has become a priority even if new radiation techniques will lead to better protection for organs at risk. International guidelines have been put in place because of the evidence for increased lifetime risk of breast and thyroid cancer. DeNaCaPST is based on these international recommendations but it is important to recognize that they are based on expert consensus opinion and are supported by neither nonrandomized observational studies nor prospective randomized trials in this specific population. Over-diagnosis is a phenomenon inherent in any screening program and

Cancer-Related Worry and Physical Well-Being in the Context of Perceived Stress in Young Adults with Testicular Cancer.

PubMed

Darabos, Katie; Hoyt, Michael A

2017-06-01

Uncertainty associated with cancer can foster future-focused worry and ultimately diminish physical well-being, especially among young adult survivors. Stress perceptions might exacerbate the association of worry and physical well-being. Young adults with testicular cancer (N = 171) completed measures of physical well-being, perceived stress, and future cancer-related worry. Perceived stress and future worry were both negatively associated with physical well-being. Perceived stress moderated the relationship; more perceived stress was related to lower physical well-being in those with high worry. Interventions aimed at worry reduction might benefit from reducing global stress perceptions.

Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory ™ generic core scales, cancer module, and multidimensional fatigue scale in long-term adult survivors of pediatric cancer.

PubMed

Robert, Rhonda S; Paxton, Raheem J; Palla, Shana L; Yang, Grace; Askins, Martha A; Joy, Shaini E; Ater, Joann L

2012-10-01

Most health-related quality of life assessments are designed for either children or adults and have not been evaluated for adolescent and young adult survivors of pediatric cancer. The objective of this study was to examine the feasibility, reliability, and validity of the Pediatric Quality of Life Inventory (PedsQL ™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale in adult survivors of pediatric cancer. Adult survivors (n = 64; Mean age 35 year old; >2 years after treatment) completed the PedsQL™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale. Feasibility was examined with floor and ceiling effects; and internal consistency was determined by Cronbach's coefficient alpha calculations. Inter-factor correlations were also assessed. Significant ceiling effects were observed for the scales of social function, nausea, procedural anxiety, treatment anxiety, and communication. Internal consistency for all subscales was within the recommended ranges (α ≥ 0.70). Moderate to strong correlations between most Cancer Module and Generic Core Scales (r = 0.25 to r = 0.76) and between the Multidimensional Fatigue Scale and Generic Core Scales (r = 0.37 to r = 0.73). The PedsQL™ Generic Core Scales, Cancer Module, and Multidimensional Fatigue Scale appear to be feasible for an older population of pediatric cancer survivors; however, some of the Cancer Module Scales (nausea, procedural/treatment anxiety, and communication) were deemed not relevant for long-term survivors. More information is needed to determine whether the issues addressed by these modules are meaningful to long-term adult survivors of pediatric cancers. Copyright © 2012 Wiley Periodicals, Inc.

Types and Influence of Social Support on School Engagement of Young Survivors of Leukemia.

PubMed

Tougas, Anne-Marie; Jutras, Sylvie; Bigras, Marc

2016-08-01

The present study aimed to describe and explore the influence of social support on the school engagement of young survivors of pediatric leukemia. Fifty-three young Quebecers, previously diagnosed and treated for leukemia, completed a questionnaire measuring their school engagement and participated in an interview focusing on the support offered by four groups of relations with regard to school: parents, siblings, friends, and other nonprofessional relations. The interview responses revealed that parents were perceived to be the primary source of informational and emotional support, with support also provided to a lesser extent by friends, siblings, and members of the extended family. Inferential analyses indicated that young survivors report a higher school engagement score when they perceive themselves as receiving support from a greater number of groups of relations, especially from friends or siblings. © The Author(s) 2016.

Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions.

PubMed

Beresford, B; Stuttard, L

2014-08-01

Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from paediatrics is increasingly under discussion. This paper contributes to these debates. It reports a qualitative study of the experiences of young adults - all with complex chronic health conditions - as users of adult health services. Key findings from the study are reported, including an exploration of factors that help to explain interviewees' experiences. Study findings are discussed in the context of existing evidence from young adults in adult healthcare settings and theories of 'young adulthood'. Implications for training and practice are considered, and priorities for future research are identified. © 2014 Royal College of Physicians.

Treating adult survivors of childhood emotional abuse and neglect: A new framework.

PubMed

Grossman, Frances K; Spinazzola, Joseph; Zucker, Marla; Hopper, Elizabeth

2017-01-01

This article provides the outline of a new framework for treating adult survivors of childhood emotional abuse and neglect. Component-based psychotherapy (CBP) is an evidence-informed model that bridges, synthesizes, and expands upon several existing schools, or theories, of treatment for adult survivors of traumatic stress. These include approaches to therapy that stem from more classic traditions in psychology, such as psychoanalysis, to more modern approaches including those informed by feminist thought. Moreover, CBP places particular emphasis on integration of key concepts from evidence-based treatment models developed in the past few decades predicated upon thinking and research on the effects of traumatic stress and processes of recovery for survivors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Obesity and Metabolic Syndrome Among Adult Survivors of Childhood Leukemia.

PubMed

Gibson, Todd M; Ehrhardt, Matthew J; Ness, Kirsten K

2016-04-01

Treatment-related obesity and the metabolic syndrome in adult survivors of childhood acute lymphoblastic leukemia (ALL) are risk factors for cardiovascular disease. Both conditions often begin during therapy. Preventive measures, including dietary counseling and tailored exercise, should be initiated early in the course of survivorship, with referral to specialists to optimize success. However, among adults who develop obesity or the metabolic syndrome and who do not respond to lifestyle therapy, medical intervention may be indicated to manage underlying pathology, such as growth hormone deficiency, or to mitigate risk factors of cardiovascular disease. Because no specific clinical trials have been done in this population to treat metabolic syndrome or its components, clinicians who follow adult survivors of childhood ALL should use the existing American Heart Association/National Heart Lung and Blood Institute Scientific Statement to guide their approach.

The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults.

PubMed

Landwehr, Michelle S; Watson, Samantha E; Macpherson, Catherine F; Novak, Katherine A; Johnson, Rebecca H

2016-05-01

Young adult cancer survivors (YAs) are confronted with immense financial challenges in the wake of their treatment. Medical bills and loss of savings may cause YAs to forgo recommended medications or follow-up appointments. Young survivors with financial concerns also report depression, stress and anxiety. The Samfund is a national nonprofit organization that provides financial support to YAs post-treatment. To quantify the financial burden of cancer in YAs, a retrospective analysis was performed of data collected from Samfund grant applications of 334 YA cancer survivors. Grants were awarded between 2007 and 2013 and grant recipients were consented electronically in 2014 for retrospective data analysis. Recipients ranged from 19 to 39 years of age at the time of their grant applications. Descriptive statistics were calculated and compared to the Medical Expenditure Panel Survey (MEPS) and U.S. census data on age-matched peers. Financial indicators of YA cancer survivors are worse in many domains than those of age-matched controls. Furthermore, YA survivors in their 30s report more perilous prefunding financial situations than younger grant recipients. Cancer has a devastating and age-specific impact on the finances of YAs. Philanthropic grants from the cancer support community, in conjunction with healthcare policy reforms, have the potential to break the cycle of financial need and help YAs move forward with their lives after cancer treatment. © 2016 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.

Types and Influence of Social Support on School Engagement of Young Survivors of Leukemia

ERIC Educational Resources Information Center

Tougas, Anne-Marie; Jutras, Sylvie; Bigras, Marc

2016-01-01

The present study aimed to describe and explore the influence of social support on the school engagement of young survivors of pediatric leukemia. Fifty-three young Quebecers, previously diagnosed and treated for leukemia, completed a questionnaire measuring their school engagement and participated in an interview focusing on the support offered…

"I Got My Diagnosis on a Yellow Post-it Note": Young Adult Cancer Patients' Experiences of the Process of Being Diagnosed With Cancer.

PubMed

Hauken, May Aasebø; Hølge-Hazelton, Bibbi; Larsen, Torill M B

2018-06-01

Cancer in young adults is rare but young adult cancer patients (YACPs) are at an increased risk of severe physical and psychosocial impairments during cancer treatment and survivorship. However, little is known about the onset of this process. The aim of this study was to explore how young cancer survivors experience the process of being diagnosed with cancer. A qualitative method founded on a phenomenological-hermeneutical approach was used and included in-depth interviews with 20 young adult survivors (aged 24-35 years) with different cancer diagnoses, analyzed by Systematic Text Condensation. The participants' experiences of the diagnosis process were elaborated according to 3 main themes: (1) "I felt something was wrong, but…," (2) "The traumatic uncertainty," and (3) "The day my world collapsed." The findings indicate that the YACPs experienced a diagnosis of cancer as a highly traumatic and long-lasting process, characterized by lack of information and uncertainty. The findings indicate that healthcare professionals do not acknowledge the vulnerable phase of life and transitional challenges of YACPs. The findings highlight the need to raise awareness of cancer in young adulthood in the public and in the primary healthcare system, to shorten the diagnosis process, and to clarify responsibility for age-related information and psychosocial follow-up during the diagnosis process. Further research is highly warranted.

Female Reproductive Health After Childhood, Adolescent, and Young Adult Cancers: Guidelines for the Assessment and Management of Female Reproductive Complications

PubMed Central

Metzger, Monika L.; Meacham, Lillian R.; Patterson, Briana; Casillas, Jacqueline S.; Constine, Louis S.; Hijiya, Nobuko; Kenney, Lisa B.; Leonard, Marcia; Lockart, Barbara A.; Likes, Wendy; Green, Daniel M.

2013-01-01

Purpose As more young female patients with cancer survive their primary disease, concerns about reproductive health related to primary therapy gain relevance. Cancer therapy can often affect reproductive organs, leading to impaired pubertal development, hormonal regulation, fertility, and sexual function, affecting quality of life. Methods The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer (COG-LTFU Guidelines) are evidence-based recommendations for screening and management of late effects of therapeutic exposures. The guidelines are updated every 2 years by a multidisciplinary panel based on current literature review and expert consensus. Results This review summarizes the current task force recommendations for the assessment and management of female reproductive complications after treatment for childhood, adolescent, and young adult cancers. Experimental pretreatment as well as post-treatment fertility preservation strategies, including barriers and ethical considerations, which are not included in the COG-LTFU Guidelines, are also discussed. Conclusion Ongoing research will continue to inform COG-LTFU Guideline recommendations for follow-up care of female survivors of childhood cancer to improve their health and quality of life. PMID:23382474

Emotional support and adult depression in survivors of childhood sexual abuse.

PubMed

Musliner, Katherine L; Singer, Jonathan B

2014-08-01

The goals of this study were to evaluate the effects of emotional support from friends and parents at two time points (adolescence and adulthood) on adult depression in a nationally representative sample of survivors of childhood sexual abuse (CSA), and examine whether the associations were moderated by the identity of the perpetrator (parent/caregiver vs. not). Data were taken from Waves I and IV of the National Longitudinal Study of Adolescent Health (Add Health). The study sample included 1,238 Add Health participants with a history of CSA and an equivalently sized comparison group of individuals with no history of CSA. Parental support was measured using four items from each wave that assessed the warmth of participants' relationships with their parents and their satisfaction with those relationships. Friend support in adolescence was measured using participants' perceptions of how much their friends cared about them and in adulthood using participants' self-reported number of close friends. Depression was measured using a 10-item subscale of the CES-D. Logistic regressions showed that support from friends and parents in adulthood were significantly associated with lower odds of adult depression in CSA survivors who reported non-parent/caregiver abuse. Among survivors of parent/caregiver abuse, emotional support was not significantly associated with adult depression regardless of when or by whom it was provided. In conclusion, emotional support in adulthood from friends and parents is associated with reduced odds of adult depression in CSA survivors, but only in cases where the abuse was perpetrated by someone other than a parent or caregiver. Copyright © 2014 Elsevier Ltd. All rights reserved.

Predictors of Marriage and Divorce in Adult Survivors of Childhood Cancers: A Report from the Childhood Cancer Survivor Study

PubMed Central

Janson, Christopher; Leisenring, Wendy; Cox, Cheryl; Termuhlen, Amanda M.; Mertens, Ann C.; Whitton, John A.; Goodman, Pamela; Zeltzer, Lonnie; Robison, Leslie L.; Krull, Kevin R.; Kadan-Lottick, Nina S.

2009-01-01

Background/Objective Adult survivors of childhood cancer can have altered social functioning. We sought to identify factors that predict marriage and divorce outcomes in this growing population. Methods Retrospective cohort study of 8,928 ≥ five-year adult survivors of childhood malignancy and 2,879 random sibling controls participating in the Childhood Cancer Survivor Study. Marital status, current health, psychological status, and neurocognitive functioning were determined from surveys and validated instruments. Results Survivors were more likely to be never-married than siblings (relative risk (RR) = 1.21; 95% confidence interval (CI) 1.15–1.26) and the U.S. population (RR=1.25; 95% CI= 1.21 – 1.29), after adjusting for age, gender, and race. Patients with central nervous system (CNS) tumors were at greatest risk for not marrying (RR=1.50; 95% CI= 1.41–1.59). Married survivors divorced at frequencies similar to controls. In multivariable regression analysis, non-marriage was most associated with cranial radiation (RR=1.15; 95% CI=1.02–1.31 for >2400 centigray). In analysis of neurobehavioral functioning, non-marriage was associated with worse task efficiency (RR=1.27; 95% CI=1.20–1.35), but not with emotional distress, or problems with emotional regulation, memory, or organization. Physical conditions predictive of non-marriage included short stature (RR=1.27; 95% CI=1.20–1.34) and poor physical function (RR=1.08; 95% CI=1.00–1.18). Structural equation modeling suggested that cranial radiation influenced marriage status through short stature, cognitive problems, and poor physical function. Conclusions Childhood cancer survivors married at lower frequencies compared to peers. Patients with CNS tumors, cranial radiation, impaired processing efficiency, and short stature were more likely to never marry. Divorce patterns in survivors were similar to peers. PMID:19815636

Predictors of marriage and divorce in adult survivors of childhood cancers: a report from the Childhood Cancer Survivor Study.

PubMed

Janson, Christopher; Leisenring, Wendy; Cox, Cheryl; Termuhlen, Amanda M; Mertens, Ann C; Whitton, John A; Goodman, Pamela; Zeltzer, Lonnie; Robison, Leslie L; Krull, Kevin R; Kadan-Lottick, Nina S

2009-10-01

Adult survivors of childhood cancer can have altered social functioning. We sought to identify factors that predict marriage and divorce outcomes in this growing population. This was a retrospective cohort study of 8,928 > or = 5-year adult survivors of childhood malignancy and 2,879 random sibling controls participating in the Childhood Cancer Survivor Study. Marital status, current health, psychological status, and neurocognitive functioning were determined from surveys and validated instruments. Survivors were more likely to be never-married than siblings [relative risk (RR), 1.21; 95% confidence interval (95% CI), 1.15-1.26] and the U.S. population (RR, 1.25; 95% CI, 1.21-1.29), after adjusting for age, gender, and race. Patients with central nervous system tumors were at greatest risk of not marrying (RR, 1.50; 95% CI, 1.41-1.59). Married survivors divorced at frequencies similar to controls. In multivariable regression analysis, nonmarriage was most associated with cranial radiation (RR, 1.15; 95% CI, 1.02-1.31 for > 2,400 centigray). In analysis of neurobehavioral functioning, nonmarriage was associated with worse task efficiency (RR, 1.27; 95% CI, 1.20-1.35), but not with emotional distress, or problems with emotional regulation, memory, or organization. Physical conditions predictive of nonmarriage included short stature (RR, 1.27; 95% CI, 1.20-1.34) and poor physical function (RR, 1.08; 95% CI, 1.00-1.18). Structural equation modeling suggested that cranial radiation influenced marriage status through short stature, cognitive problems, and poor physical function. Childhood cancer survivors married at lower frequencies compared with peers. Patients with central nervous system tumors, cranial radiation, impaired processing efficiency, and short stature were more likely to never marry. Divorce patterns in survivors were similar to peers.

Correlates of Serious Suicidal Ideation and Attempts in Female Adult Sexual Assault Survivors

ERIC Educational Resources Information Center

Ullman, Sarah E.; Najdowski, Cynthia J.

2009-01-01

Relations between (a) serious suicidal ideation and attempts and (b) demographics, trauma history, assault characteristics, post-assault outcomes, and psychosocial variables were examined among female adult sexual assault survivors. Younger, minority, and bisexual survivors reported greater ideation. More traumas, drug use, and assault disclosure…

Recommendations for Premature Ovarian Insufficiency Surveillance for Female Survivors of Childhood, Adolescent, and Young Adult Cancer: A Report From the International Late Effects of Childhood Cancer Guideline Harmonization Group in Collaboration With the PanCareSurFup Consortium

PubMed Central

van Dorp, Wendy; Mulder, Renée L.; Kremer, Leontien C.M.; Hudson, Melissa M.; van den Heuvel-Eibrink, Marry M.; van den Berg, Marleen H.; Levine, Jennifer M.; van Dulmen-den Broeder, Eline; di Iorgi, Natascia; Albanese, Assunta; Armenian, Saro H.; Bhatia, Smita; Constine, Louis S.; Corrias, Andreas; Deans, Rebecca; Dirksen, Uta; Gracia, Clarisa R.; Hjorth, Lars; Kroon, Leah; Lambalk, Cornelis B.; Landier, Wendy; Levitt, Gill; Leiper, Alison; Meacham, Lillian; Mussa, Alesandro; Neggers, Sebastian J.; Oeffinger, Kevin C.; Revelli, Alberto; van Santen, Hanneke M.; Skinner, Roderick; Toogood, Andrew; Haupt, Riccardo

2016-01-01

Purpose Female survivors of childhood, adolescent, and young adult (CAYA) cancer who were treated with alkylating agents and/or radiation, with potential exposure of the ovaries, have an increased risk of premature ovarian insufficiency (POI). Clinical practice guidelines can facilitate these survivors’ access to optimal treatment of late effects that may improve health and quality of survival; however, surveillance recommendations vary among the existing long-term follow-up guidelines, which impedes the implementation of screening. Patients and Methods The present guideline was developed by using an evidence-based approach and summarizes harmonized POI surveillance recommendations for female survivors of CAYA cancer who were diagnosed at age < 25 years. The recommendations were formulated by an international multidisciplinary panel and graded according to the strength of the evidence and the potential benefit gained from early detection and intervention. The harmonized POI surveillance recommendations were developed by using a transparent process and are intended to facilitate care for survivors of CAYA cancer. Results and Conclusion The harmonized set of POI surveillance recommendations is intended to be scientifically rigorous, to positively influence health outcomes, and to facilitate the care for female survivors of CAYA cancer. PMID:27458300

Long-Term Outcomes Among Adult Survivors of Childhood Central Nervous System Malignancies in the Childhood Cancer Survivor Study

PubMed Central

Liu, Qi; Yasui, Yutaka; Huang, Sujuan; Ness, Kirsten K.; Leisenring, Wendy; Hudson, Melissa M.; Donaldson, Sarah S.; King, Allison A.; Stovall, Marilyn; Krull, Kevin R.; Robison, Leslie L.; Packer, Roger J.

2009-01-01

Background Adult survivors of childhood central nervous system (CNS) malignancies are at high risk for long-term morbidity and late mortality. However, patterns of late mortality, the long-term risks of subsequent neoplasms and debilitating medical conditions, and sociodemographic outcomes have not been comprehensively characterized for individual diagnostic and treatment groups. Methods We collected information on treatment, mortality, chronic medical conditions, and neurocognitive functioning of adult 5-year survivors of CNS malignancies diagnosed between 1970 and 1986 within the Childhood Cancer Survivor Study. Using competing risk framework, we calculated cumulative mortality according to cause of death and cumulative incidence of subsequent neoplasms according to exposure and dose of cranial radiation therapy (RT). Neurocognitive impairment and socioeconomic outcomes were assessed with respect to dose of CNS radiotherapy to specific brain regions. Cumulative incidence of chronic medical conditions was compared between survivors and siblings using Cox regression models. All tests of statistical significance were two-sided. Results Among all eligible 5-year survivors (n = 2821), cumulative late mortality at 30 years was 25.8% (95% confidence interval [CI] = 23.4% to 28.3%), due primarily to recurrence and/or progression of primary disease. Patients who received cranial RT of 50 Gy or more (n = 813) had a cumulative incidence of a subsequent neoplasm within the CNS of 7.1% (95% CI = 4.5% to 9.6%) at 25 years from diagnosis compared with 1.0% (95% CI = 0% to 2.3%) for patients who had no RT. Survivors had higher risk than siblings of developing new endocrine, neurological, or sensory complications 5 or more years after diagnosis. Neurocognitive impairment was high and proportional to radiation dose for specific tumor types. There was a dose-dependent association between RT to the frontal and/or temporal lobes and lower rates of employment, and marriage

Gonadal and Sexual Dysfunction in Childhood Cancer Survivors.

PubMed

Yoon, Ju Young; Park, Hyeon Jin; Ju, Hee Young; Yoon, Jong Hyung; Chung, Jin Soo; Hwang, Sang Hyun; Lee, Dong Ock; Shim, Hye Young; Park, Byung-Kiu

2017-10-01

Few studies have addressed gonadal and sexual dysfunctions in childhood cancer survivors. We evaluated the prevalence rates and risk factors for gonadal failure among adolescent/young adult childhood cancer survivors and their sexual function. Subjects were childhood cancer survivors aged 15-29 years who had completed therapy more than 2 years ago. Demographic and medical characteristics were obtained from the patients' medical records. In addition, hormonal evaluation and semen analysis were performed and sexual function was evaluated via questionnaire. The study included 105 survivors (57 males, 48 females), of which 61 were adults (age > 19 years) and 44 were adolescents. In both males and females, the proportion of survivors with low sex hormone levels did not differ among age groups or follow-up period. Thirteen female subjects (27.1%) needed sex hormone replacement, while five males subjects (8.8%) were suspected of having hypogonadism, but none were receiving sex hormone replacement. Of 27 semen samples, 14 showed azospermia or oligospermia. The proportion of normospermia was lower in the high cyclophosphamide equivalent dose (CED) group (CED ≥ 8,000 mg/m2) than the low CED group (27.3% vs. 62.5%, p=0.047). Among adults, none were married and only 10 men (35.7%) and eight women (34.3%) were in a romantic relationship. Though a significant proportion (12.0% of males and 5.3% of females) of adolescent survivors had experienced sexual activity, 13.6% had not experienced sex education. The childhood cancer survivors in this study showed a high prevalence of gonadal/sexual dysfunction; accordingly, proper strategies are needed to manage these complications.

Concentration, working speed and memory: cognitive problems in young childhood cancer survivors and their siblings.

PubMed

Wengenroth, L; Rueegg, C S; Michel, G; Gianinazzi, M E; Essig, S; von der Weid, N X; Grotzer, M; Kuehni, Claudia E

2015-05-01

Cognitive problems can have a negative effect on a person's education, but little is known about cognitive problems in young childhood cancer survivors (survivors). This study compared cognitive problems between survivors and their siblings, determined if cognitive problems decreased during recent treatment periods and identified characteristics associated with the presence of a cognitive problem in survivors. As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was sent to all survivors, aged 8-20 years, registered in the Swiss Childhood Cancer Registry, diagnosed at age <16 years, who had survived ≥ 5 years. Parent-reported (aged 8-15 years) and self-reported (aged 16-20 years) cognitive problems (concentration, working speed, memory) were compared between survivors and siblings. Multivariable logistic regression was used to identify characteristics associated with cognitive problems in survivors. Data from 840 survivors and 247 siblings were analyzed. More often than their siblings, survivors reported problems with concentration (12% vs. 6%; P = 0.020), slow working speed (20% vs. 8%; P = 0.001) or memory (33% vs. 15%; P < 0.001). Survivors from all treatment periods were more likely to report a cognitive problem than were siblings. Survivors of CNS tumors (OR = 2.82 compared to leukemia survivors, P < 0.001) and those who had received cranial irradiation (OR = 2.10, P = 0.010) were most severely affected. Childhood cancer survivors, even those treated recently (2001-2005), remain at risk to develop cognitive problems, suggesting a need to improve therapies. Survivors with cognitive problems should be given the opportunity to enter special education programs. © 2015 Wiley Periodicals, Inc.

Impaired cardiovascular structure and function in adult survivors of severe acute malnutrition.

PubMed

Tennant, Ingrid A; Barnett, Alan T; Thompson, Debbie S; Kips, Jan; Boyne, Michael S; Chung, Edward E; Chung, Andrene P; Osmond, Clive; Hanson, Mark A; Gluckman, Peter D; Segers, Patrick; Cruickshank, J Kennedy; Forrester, Terrence E

2014-09-01

Malnutrition below 5 years remains a global health issue. Severe acute malnutrition (SAM) presents in childhood as oedematous (kwashiorkor) or nonoedematous (marasmic) forms, with unknown long-term cardiovascular consequences. We hypothesized that cardiovascular structure and function would be poorer in SAM survivors than unexposed controls. We studied 116 adult SAM survivors, 54 after marasmus, 62 kwashiorkor, and 45 age/sex/body mass index-matched community controls who had standardized anthropometry, blood pressure, echocardiography, and arterial tonometry performed. Left ventricular indices and outflow tract diameter, carotid parameters, and pulse wave velocity were measured, with systemic vascular resistance calculated. All were expressed as SD scores. Mean (SD) age was 28.8±7.8 years (55% men). Adjusting for age, sex, height, and weight, SAM survivors had mean (SE) reductions for left ventricular outflow tract diameter of 0.67 (0.16; P<0.001), stroke volume 0.44 (0.17; P=0.009), cardiac output 0.5 (0.16; P=0.001), and pulse wave velocity 0.32 (0.15; P=0.03) compared with controls but higher diastolic blood pressures (by 4.3; 1.2-7.3 mm Hg; P=0.007). Systemic vascular resistance was higher in marasmus and kwashiorkor survivors (30.2 [1.2] and 30.8 [1.1], respectively) than controls 25.3 (0.8), overall difference 5.5 (95% confidence interval, 2.8-8.4 mm Hg min/L; P<0.0001). No evidence of large vessel or cardiac remodeling was found, except closer relationships between these indices in former marasmic survivors. Other parameters did not differ between SAM survivor groups. We conclude that adult SAM survivors had smaller outflow tracts and cardiac output when compared with controls, yet markedly elevated peripheral resistance. Malnutrition survivors are thus likely to develop excess hypertension in later life, especially when exposed to obesity. © 2014 American Heart Association, Inc.

Factor Structure of the Brief Symptom Inventory--18 in Adult Survivors of Childhood Cancer: Results from the Childhood Cancer Survivor Study

ERIC Educational Resources Information Center

Recklitis, Christopher J.; Parsons, Susan K.; Shih, Mei-Chiung; Mertens, Ann; Robison, Leslie L.; Zeltzer, Lonnie

2006-01-01

The factor structure of the Brief Symptom Inventory--18 (BSI-18; L. R. Derogatis, 2000) was investigated in a sample of adult survivors of childhood cancer enrolled in the Childhood Cancer Survivor Study (CCSS; N = 8,945). An exploratory factor analysis with a randomly chosen subsample supported a 3-factor structure closely corresponding to the 3…

Screening for psychological late effects in childhood, adolescent and young adult cancer survivors: a systematic review.

PubMed

Michel, Gisela; Vetsch, Janine

2015-07-01

In the past years, increasing evidence showed that many childhood cancer survivors suffer from psychological distress long after treatment ended. However, psychosocial issues are often neglected during follow-up care. Including screening for psychological distress before follow-up appointments might help addressing the topic in survivors who need support. Our aim was to systematically review the available evidence on screening for psychological distress in childhood cancer survivors. We found eight studies that investigated different screening tools for their utility in detecting psychological distress in childhood cancer survivors. The Brief Symptom Inventory-18 with an adapted cutoff score for childhood cancer survivors, and the newly developed short form of the Beck Depression Index were both shown to be of a potential benefit as brief screening tools in follow-up care. We identified promising screening tools to be used to detect psychological distress in childhood cancer survivors. However, there is still a lack of studies addressing applicability and effectiveness when screening is routinely implemented into follow-up care. To improve quality of follow-up care, and identify and treat survivors with psychological distress, screening tools should now be implemented and their adequacy further tested in day-to-day clinic life.

Effects of Parental Suicide on the Adolescent Survivors' Lives When They Are Adults

ERIC Educational Resources Information Center

Saatci, Yesim

2013-01-01

This qualitative inquiry, phenomenology, purported to provide insight into the role of parental suicide on the adolescent survivors' adult lives between 18 and 40. This study described the survivors' coping strategies, self-esteem, and effects of their grief and bereavement as a result of parental suicide on their emotional wellness or…

A Collaborative Step-Wise Process to Implementing an Innovative Clinic for Adult Survivors of Childhood Cancer.

PubMed

McClellan, Wendy; Fulbright, Joy M; Doolittle, Gary C; Alsman, Kyla; Klemp, Jennifer R; Ryan, Robin; Nelson, Eve-Lynn; Stegenga, Kristin; Krebill, Hope; Al-hihi, Eyad M; Schuetz, Nik; Heiman, Ashley; Lowry, Becky

2015-01-01

With a 5 year survival rate of approximately 80%, there is an increasing number of childhood cancer survivors in the United States. Childhood cancer survivors are at an increased risk for physical and psychosocial health problems many years after treatment. Long-term follow-up care should include education, development of individualized follow up plans and screening for health problems in accordance with the Children's Oncology Group survivor guidelines. Due to survivor, provider and healthcare system related barriers, adult survivors of childhood cancer (ASCC) infrequently are receiving care in accordance to these guidelines. In this paper we describe the stepwise process and collaboration between a children's hospital and an adult academic medical center that was implemented to develop the Survivorship Transition Clinic and address the needs of ASCC in our region. In the clinic model that we designed ASCC follow-up with a primary care physician in the adult setting who is knowledgeable about late effects of childhood cancer treatment and are provided transition support and education by a transition nurse navigator. Copyright © 2015 Elsevier Inc. All rights reserved.

Concentration, Working Speed and Memory: Cognitive Problems in Young Childhood Cancer Survivors and Their Siblings

PubMed Central

Wengenroth, L.; Rueegg, C. S.; Michel, G.; Gianinazzi, M. E.; Essig, S.; von der Weid, N. X.; Grotzer, M.; Kuehni, Claudia E.

2018-01-01

Background Cognitive problems can have a negative effect on a person’s education, but little is known about cognitive problems in young childhood cancer survivors (survivors). This study compared cognitive problems between survivors and their siblings, determined if cognitive problems decreased during recent treatment periods and identified characteristics associated with the presence of a cognitive problem in survivors. Methods As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was sent to all survivors, aged 8–20 years, registered in the Swiss Childhood Cancer Registry, diagnosed at age <16 years, who had survived ≥5 years. Parent-reported (aged 8–15 years) and self-reported (aged 16–20 years) cognitive problems (concentration, working speed, memory) were compared between survivors and siblings. Multivariable logistic regression was used to identify characteristics associated with cognitive problems in survivors. Results Data from 840 survivors and 247 siblings were analyzed. More often than their siblings, survivors reported problems with concentration (12% vs. 6%; P = 0.020), slow working speed (20% vs. 8%; P = 0.001) or memory (33% vs. 15%; P < 0.001). Survivors from all treatment periods were more likely to report a cognitive problem than were siblings. Survivors of CNS tumors (OR = 2.82 compared to leukemia survivors, P < 0.001) and those who had received cranial irradiation (OR = 2.10, P = 0.010) were most severely affected. Conclusion Childhood cancer survivors, even those treated recently (2001–2005), remain at risk to develop cognitive problems, suggesting a need to improve therapies. Survivors with cognitive problems should be given the opportunity to enter special education programs. PMID:25645276

Physical and psychologic rehabilitation outcomes for young adults burned as children.

PubMed

Baker, Christine P; Russell, William J; Meyer, Walter; Blakeney, Patricia

2007-12-01

To report physical and psychologic outcomes for young adult survivors of pediatric burns. Prospective, correlational study. Acute and rehabilitation pediatric burn care facility. Eighty-three young adult survivors of pediatric burns, who were 18 to 28 years of age, with total body surface area (TBSA) burns of 30% or greater, and were at least 2 years postburn. Not applicable. Physical outcomes were assessed by muscle strength tests, grip and pinch measurements, mobility levels, and self-care (activities of daily living) skills. Psychologic outcomes included behavioral problems, personality disorder, and incidence of psychiatric illness. An individually administered Structured Clinical Interview for Diagnosis, based on the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, for psychiatric diagnosis, was used to assess mental health, and behavioral problems were assessed with the Young Adult Self-Report. Participants reported educational achievement, employment status, state of transition from family of origin (home) to independent living, and pair bonding. The Short-Form 36-Item Health Survey and the Quality of Life Questionnaire were used to assess each participant's self-reported general health and quality of life. The majority of subjects had physical and psychologic outcomes that were within the normal range when compared with age-mates who had not experienced burns. The areas that were most likely to be impaired involved peripheral strength (wrist and grip). These deficits affected some self-care skills and correlated with TBSA. Standardized diagnostic interviews showed that greater than 50% of subjects qualified for a psychiatric diagnosis, with anxiety disorders as the most frequently occurring diagnosis. There were few significant correlations of the physical measurements or self-care skills with the burn size, psychologic problems, or social outcomes, and none appeared to be clinically important. Most of the people in this sample were

Facing the Maze: Young Cancer Survivors' Return to Education and Work-A Professional Expert Key Informant Study.

PubMed

Pedersen, Kaspar Jessen; Boisen, Kirsten Arntz; Midtgaard, Julie; Elsbernd, Abbey; Larsen, Hanne Baekgaard

2018-03-13

An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.

Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors.

PubMed

D'Agostino, Norma M; Penney, Annette; Zebrack, Brad

2011-05-15

To deliver developmentally appropriate psychosocial care, the key developmental tasks facing adolescents and young adults (AYA) need to be taken into consideration. These include establishing autonomy from parents; a personal set of values and identity; strong peer relationships, including intimate and sexual relationships; and obtaining adequate preparation to join the workforce. To minimize the amount of disruption caused by the cancer experience and to maximize the health-related quality of life of AYA patients, young individuals with cancer need opportunities to participate as much as possible in typical AYA activities and to master the developmental tasks of this life stage. Promoting a sense of normalcy is essential. To achieve this, the health care environment must be flexible and recognize the important role of peers. Informational and practical supports also are necessary for AYA to stay on track developmentally in the context of coping with cancer. Critical elements of effective AYA psychosocial services should include access to AYA-specific information and support resources, fertility and sexuality counseling, programs to maximize academic and vocational functioning, and financial support. © 2011 American Cancer Society

Comparing the Knowledge of Parents and Survivors Who Attend a Survivorship Clinic.

PubMed

Quillen, Joanne; Li, Yimei; Demski, Michele; Carlson, Claire; Bradley, Holli; Schwartz, Lisa; Ginsberg, Jill P; Hobbie, Wendy

This study underscores the importance of the survivor/parent dynamic in understanding the knowledge level of childhood cancer survivors and their parents with regard to cancer diagnosis, treatments, and potential late effects, and to assess the impact of parental knowledge on survivor's knowledge. A convenience sample (N = 219 dyads) consisting of childhood cancer survivors with a parent match was used. Survivors 2 years out from completion of therapy, aged 16 to 25 years, and fluent in English or Spanish completed 2 questionnaires to assess adolescent and young adult and parental knowledge regarding diagnosis, treatment, and long-term risks. Data from the survivor/parent dyad confirm that parents are more knowledgeable than their child regarding treatment specifics. However, survivors are more accurate when assessing second tumor and fertility risk. More knowledgeable parents led to more knowledgeable survivors. Although parents were well-informed about treatment specifics, they were not as accurate in identifying risks appropriately. Therefore, education must be directed at both parent and survivors to maximize knowledge.

Atypical Structural Connectome Organization and Cognitive Impairment in Young Survivors of Acute Lymphoblastic Leukemia.

PubMed

Kesler, Shelli R; Gugel, Meike; Huston-Warren, Emily; Watson, Christa

2016-05-01

Survivors of pediatric acute lymphoblastic leukemia (ALL) are at increased risk for cognitive impairments that disrupt everyday functioning and decrease quality of life. The specific biological mechanisms underlying cognitive impairment following ALL remain largely unclear, but previous studies consistently demonstrate significant white matter pathology. We aimed to extend this literature by examining the organization of the white matter connectome in young patients with a history of ALL treated with chemotherapy only. We applied graph theoretical analysis to diffusion tensor imaging obtained from 31 survivors of ALL age 5-19 years and 39 matched healthy controls. Results indicated significantly lower small-worldness (p = 0.007) and network clustering coefficient (p = 0.019), as well as greater cognitive impairment (p = 0.027) in the ALL group. Regional analysis indicated that clustered connectivity in parietal, frontal, hippocampal, amygdalar, thalamic, and occipital regions was altered in the ALL group. Random forest analysis revealed a model of connectome and demographic variables that could automatically classify survivors of ALL as having cognitive impairment or not (accuracy = 0.89, p < 0.0001). These findings provide further evidence of brain injury in young survivors of ALL, even those without a history of central nervous system (CNS) disease or cranial radiation. Efficiency of local information processing, reorganization of hub connectivity, and cognitive reserve may contribute to cognitive outcome in these children. Certain connectome properties showed U-shaped relationships with cognitive impairment suggesting an optimal range of regional connectivity.

Adult outcomes of preterm children.

PubMed

Hack, Maureen

2009-10-01

The survivors of the initial years of neonatal intensive care of preterm infants reached adulthood during the last decade. Reports of their adult outcomes examined have included neurodevelopmental, behavioral and health outcomes as well as social functioning and reproduction. Despite statistically significant differences between preterm young adults and controls in most outcomes studied, the majority of preterm survivors do well and live fairly normal lives. The two major predictors of adult outcomes are lower gestational age that reflect perinatal injury and family sociodemographic status which reflects both genetic and environmental effects.

Marriage, employment, and health insurance in adult survivors of childhood cancer.

PubMed

Crom, Deborah B; Lensing, Shelly Y; Rai, Shesh N; Snider, Mark A; Cash, Darlene K; Hudson, Melissa M

2007-09-01

Adult survivors of childhood cancer are at risk for disease- and therapy-related morbidity, which can adversely impact marriage and employment status, the ability to obtain health insurance, and access to health care. Our aim was to identify factors associated with survivors' attainment of these outcomes. We surveyed 1,437 childhood cancer survivors who were >18 years old and >10 years past diagnosis. We compared our cohort's data to normative data in the Medical Expenditure Panel Survey and the U.S. Census Bureau's Current Population Surveys. Respondents were stratified by hematologic malignancies, central nervous system tumors, or other solid tumors and by whether they had received radiation therapy. Most respondents were survivors of hematologic malignancies (71%), white (91%), and working full-time (62%); 43% were married. Compared with age- and sex-adjusted national averages, only survivors of hematologic malignancies who received radiation were significantly less likely to be married (44 vs. 52%). Full-time employment among survivors was lower than national norms, except among survivors of hematologic malignancies who had not received radiation therapy. The rates of coverage of health insurance, especially public insurance, were higher in all diagnostic groups than in the general population. While difficulty obtaining health care was rarely reported, current unemployment and a lack of insurance were associated with difficulty in obtaining health care (P < 0.05 and P < 0.001, respectively). CONCLUSIONS/IMPLICATIONS FOR CANCER SURVIVORS: Subgroups of cancer survivors do experience long-term differences in functional outcomes that should be addressed early. Survivors who are unmarried, unemployed, and uninsured experience difficulty accessing health care needed to address long-term health concerns.

"Cancer sucks," and other ponderings by adolescent and young adult cancer survivors.

PubMed

Zebrack, Brad; Kent, Erin E; Keegan, Theresa H M; Kato, Ikuko; Smith, Ashley Wilder

2014-01-01

As part of the National Cancer Institute's AYA HOPE study, 296 adolescent and young adults (AYAs) completed an open-ended survey item asking them to describe their medical care or experience with cancer. Patient, provider, and system-level characteristics all appear to influence AYAs' perceptions of their medical care. Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side-effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident. Findings contribute to a better understanding of AYAs' cancer treatment experiences and will inform improvements to oncology care for this population.

Young Cancer Survivor Connections: A Mixed Methods Investigation of Online Communications, Social Support, and Unmet Needs

DTIC Science & Technology

2015-01-08

report that connection with other young survivors also helps address feelings of depression , anxiety, self-blame, and stress (166). Further... depressed mood (132). Similarly, in a study of 131 women diagnosed with breast cancer at age 40 or earlier, lower social support predicted higher... depression over a 10 year follow-up period (82). A prospective study of 206 mixed site cancer survivors in the Netherlands found that receipt of

Predictors of inactive lifestyle among adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

PubMed

Ness, Kirsten K; Leisenring, Wendy M; Huang, Sujuan; Hudson, Melissa M; Gurney, James G; Whelan, Kimberly; Hobbie, Wendy L; Armstrong, Gregory T; Robison, Leslie L; Oeffinger, Kevin C

2009-05-01

: Participation in physical activity is important for childhood cancer survivors, because inactivity may compound cancer/treatment-related late effects. However, some survivors may have difficulty participating in physical activity, and these individuals need to be identified so that risk-based guidelines for physical activity, tailored to specific needs, can be developed and implemented. The objectives of the current study were to document physical activity patterns in the Childhood Cancer Survivor Study (CCSS) cohort, to compare the physical activity patterns with siblings in the CCSS and with a population-based sample from the Behavioral Risk Factor Surveillance System, and to evaluate associations between diagnosis, treatment, and personal factors in terms of the risk for an inactive lifestyle. : Percentages of participation in recommended physical activity were compared among survivors, siblings, and population norms. Generalized linear models were used to evaluate the associations between cancer diagnosis and therapy, sociodemographics, and the risk for an inactive lifestyle. : Participants included 9301 adult survivors of childhood cancer and 2886 siblings. Survivors were less likely than siblings (46% vs 52%) to meet physical activity guidelines and were more likely than siblings to report an inactive lifestyle (23% vs 14%). Medulloblastoma (35%) and osteosarcoma (27%) survivors reported the highest levels of inactive lifestyle. Treatments with cranial radiation or amputation were associated with an inactive lifestyle as were being a woman, black race, older age, lower educational attainment, underweight or obese status, smoking, and depression. : Childhood cancer survivors were less active than a sibling comparison group or an age- and sex-matched population sample. Survivors who are at risk for an inactive lifestyle should be considered high priority for developing and testing of intervention approaches. Cancer 2009. (c) 2009 American Cancer Society.

Living experiences of Indian adult cancer survivors--a brief report.

PubMed

Mohanti, Bidhu Kalyan; Kaur, Jaspreet

2015-01-01

This pilot study looked into the physical, social, psychological and economic issues of Indian adult cancer survivors. Assumed cancer free patients, after cancer directed therapy (CDT), were assessed on the basis of a questionnaire developed by the investigators. The mental status of the survivors was elicited by modified MINI international neuro-psychiatric interview. This cross sectional assessment was conducted as a direct interaction with each patient for 30 to 45 minutes at a cancer hospital in 2012. Thirty one adult cancer survivors participated in this study. Median age was 53 years with a median follow up duration of 21.8 months (Range 2.3-194.1 months). The majority (68%) did not receive financial support for treatment. Median interval after CDT to start of activity of daily living was 1.5 months (range: 0-24 months). Fatigue and loss of appetite were reported by 52% and 29% respectively. The cancer diagnosis and its treatment adversely impacted the financial condition in 42% of patients. Nineteen percent each showed social anxiety and post-traumatic stress disorder and another 13% patients reported depression. This prospective assessment highlights survivorship issues and the need to address those issues particularly in the context of developing countries where resources and manpower are limited.

Psychosexual Functioning Among Adult Female Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

PubMed Central

Ford, Jennifer S.; Kawashima, Toana; Whitton, John; Leisenring, Wendy; Laverdière, Caroline; Stovall, Marilyn; Zeltzer, Lonnie; Robison, Leslie L.; Sklar, Charles A.

2014-01-01

Purpose Childhood cancer survivors may be at risk for impaired psychosexual functioning as a direct result of their cancer or its treatments, psychosocial difficulties, and/or diminished quality of life. Patients and Methods Two thousand one hundred seventy-eight female adult survivors of childhood cancer and 408 female siblings from the Childhood Cancer Survivor Study (CCSS) completed a self-report questionnaire about their psychosexual functioning and quality of life. On average, participants were age 29 years (range, 18 to 51 years) at the time of the survey, had been diagnosed with cancer at a median age of 8.5 years (range, 0 to 20) and were most commonly diagnosed with leukemia (33.2%) and Hodgkin lymphoma (15.4%). Results Multivariable analyses suggested that after controlling for sociodemographic differences, survivors reported significantly lower sexual functioning (mean difference [MnD], −0.2; P = .01), lower sexual interest (MnD, −0.2; P < .01), lower sexual desire (MnD, −0.3; P < .01), lower sexual arousal (MnD, −0.3; P < .01), lower sexual satisfaction (MnD, −0.2; P = .01), and lower sexual activity (MnD, −0.1; P = .02) compared with siblings. Risk factors for poorer psychosexual functioning among survivors included older age at assessment, ovarian failure at a younger age, treatment with cranial radiation, and cancer diagnosis during adolescence. Conclusion Decreased sexual functioning among female survivors of childhood cancers seems to be unrelated to emotional factors and is likely to be an underaddressed issue. Several risk factors among survivors have been identified that assist in defining high-risk subgroups who may benefit from targeted screening and interventions. PMID:25113763

Second Primary Malignant Neoplasms and Survival in Adolescent and Young Adult Cancer Survivors.

PubMed

Keegan, Theresa H M; Bleyer, Archie; Rosenberg, Aaron S; Li, Qian; Goldfarb, Melanie

2017-11-01

Although the increased incidence of second primary malignant neoplasms (SPMs) is a well-known late effect after cancer, few studies have compared survival after an SPM to survival of the same cancer occurring as first primary malignant neoplasm (PM) by age. To assess the survival impact of SPMs in adolescents and young adults (AYAs) (15-39 years) compared with that of pediatric (<15 years) and older adult (≥40 years) patients with the same SPMs. This was a population-based, retrospective cohort study of patients with cancer in 13 Surveillance, Epidemiology and End Results regions in the United States diagnosed from 1992 to 2008 and followed through 2013. Data analysis was performed between June 2016 and January 2017. Five-year relative survival was calculated overall and for each cancer occurring as a PM or SPM by age at diagnosis. The impact of SPM status on cancer-specific death was examined using multivariable Cox proportional hazards regression. A total of 15 954 pediatric, 125 750 AYAs, and 878 370 older adult patients diagnosed as having 14 cancers occurring as a PM or SPM were included. Overall, 5-year survival after an SPM was 33.1% lower for children, 20.2% lower for AYAs, and 8.3% lower for older adults compared with a PM at the same age. For the most common SPMs in AYAs, the absolute difference in 5-year survival was 42% lower for secondary non-Hodgkin lymphoma, 19% for secondary breast carcinoma, 15% for secondary thyroid carcinoma, and 13% for secondary soft-tissue sarcoma. Survival by SPM status was significantly worse in younger vs older patients for thyroid, Hodgkin lymphoma, non-Hodgkin lymphoma, acute myeloid leukemia, soft-tissue sarcoma, and central nervous system cancer. Adolescents and young adults with secondary Hodgkin lymphoma (hazard ratio [95% CI], 3.5 [1.7-7.1]); soft-tissue sarcoma (2.8 [2.1-3.9]); breast carcinoma (2.1 [1.8-2.4]); acute myeloid leukemia (1.9 [1.5-2.4]); and central nervous system cancer (1.8 [1

Experiencing reproductive concerns as a female cancer survivor is associated with depression

PubMed Central

Gorman, Jessica R.; Su, H. Irene; Roberts, Samantha C.; Dominick, Sally A.; Malcarne, Vanessa L.

2014-01-01

Background Young adult female cancer survivors have unmet reproductive concerns and informational needs that are associated with poorer quality of life. The purpose of this study was to examine the association between current reproductive concerns and moderate to severe depression among young survivors. Methods This cross-sectional study includes 200 female cancer survivors between the ages of 18 and 35 years who completed a web-based survey measuring reproductive history, parenthood desires, reproductive concerns after cancer, and quality of life indicators. Results The mean age of participants was 28 years (SD = 4.4) and almost two-thirds were diagnosed within 5 years of completing the survey. Multivariable logistic regression analysis controlling for education, duration of survivorship, and social support revealed an association between experiencing reproductive concerns and moderate to severe depression (OR = 1.30, 95% CI = 1.06–1.60 for each 5 unit increase in RCAC score). Of those with moderate to severe depression, 23% had high RCAC scores as compared to 6% of those with minimal to mild depression (p < 0.001). Conclusion A higher level of reproductive concerns was associated with greater odds of experiencing moderate to severe depression. Almost a quarter of survivors in this sample reported moderate to severe depression, and addressing reproductive concerns represents one potential area of intervention to improve the psychosocial health of young survivors. PMID:25377593

Benchmarks for multidimensional recovery after burn injury in young adults: the development, validation, and testing of the American Burn Association/Shriners Hospitals for Children young adult burn outcome questionnaire.

PubMed

Ryan, Colleen M; Schneider, Jeffrey C; Kazis, Lewis E; Lee, Austin; Li, Nien-Chen; Hinson, Michelle; Bauk, Helena; Peck, Michael; Meyer, Walter J; Palmieri, Tina; Pidcock, Frank S; Reilly, Debra; Tompkins, Ronald G

2013-01-01

Although data exist on burn survival, there are little data on long-term burn recovery. Patient-centered health outcomes are useful in monitoring and predicting recovery and evaluating treatments. An outcome questionnaire for young adult burn survivors was developed and tested. This 5-year (2003-2008) prospective, controlled, multicenter study included burned and nonburned adults ages 19 to 30 years. The Young Adult Burn Outcome Questionnaires were completed at initial contact, 10 days, and 6 and 12 months. Factor analysis established construct validity. Reliability assessments used Cronbach α and test-retest. Recovery patterns were investigated using generalized linear models, with generalized estimating equations using mixed models and random effects. Burned (n = 153) and nonburned subjects (n = 112) completed 620 questionnaires (47 items). Time from injury to first questionnaire administration was 157 ± 36 days (mean ± SEM). Factor analysis included 15 factors: Physical Function, Fine Motor Function, Pain, Itch, Social Function Limited by Physical Function, Perceived Appearance, Social Function Limited by Appearance, Sexual Function, Emotion, Family Function, Family Concern, Satisfaction With Symptom Relief, Satisfaction With Role, Work Reintegration, and Religion. Cronbach α ranged from 0.72 to 0.92, with 11 scales >0.8. Test-retest reliability ranged from 0.29 to 0.94, suggesting changes in underlying health status after burns. Recovery curves in five domains, Itch, Perceived Appearance, Social Function Limited by Appearance, Family Concern, and Satisfaction with Symptom Relief, remained below the reference group at 24 months. The Young Adult Burn Outcome Questionnaire is a reliable and valid instrument for multidimensional functional outcomes assessment. Recovery in some domains was incomplete.

Infertility Education: Experiences and Preferences of Childhood Cancer Survivors.

PubMed

Cherven, Brooke O; Mertens, Ann; Wasilewski-Masker, Karen; Williamson, Rebecca; Meacham, Lillian R

2016-07-01

The majority of children diagnosed with cancer will become long-term survivors; however, many will suffer late effects of treatment, including infertility. Educating patients about potential risk for infertility is important, yet little is known regarding when patients would like to hear this information. The purpose of this study was to assess young adult survivors' previous experience in receiving education about their risk for infertility and determine their preferences for infertility education at various time points during and after treatment. Only 36% of survivors report receiving education about risk for infertility at diagnosis, 39% at end of therapy, and 72% in long-term follow-up/survivor clinic visits. Survivors consistently identified their oncologist as a preferred educator at each time point. Although almost all participants identified wanting education at diagnosis, this time point alone may not be sufficient. End of therapy and survivorship may be times this message should be repeated and adapted for the survivor's needs and developmental stage: conversations about the impact of cancer treatment on future fertility should be ongoing. © 2015 by Association of Pediatric Hematology/Oncology Nurses.

Understanding how adolescents and young adults with cancer talk about needs in online and face-to-face support groups.

PubMed

Thompson, Charee M; Crook, Brittani; Love, Brad; Macpherson, Catherine Fiona; Johnson, Rebecca

2015-04-27

We compared adolescent and young adult cancer patient and survivor language between mediated and face-to-face support communities in order to understand how the use of certain words frame conversations about family, friends, health, work, achievement, and leisure. We analyzed transcripts from an online discussion board (N = 360) and face-to-face support group (N = 569) for adolescent and young adults using Linguistic Inquiry and Word Count, a word-based computerized text analysis software that counts the frequency of words and word stems. There were significant differences between the online and face-to-face support groups in terms of content (e.g. friends, health) and style words (e.g. verb tense, negative emotion, and cognitive process). © The Author(s) 2015.

Victim Therapy with Adult Survivors of Child Sexual Abuse.

ERIC Educational Resources Information Center

Norris, Thomas L.

This paper describes a four-phase therapeutic approach that has proven useful to adult female and male survivors of child sexual abuse. The methods described are primarily used in individual therapy, although the context is within the family therapy realm and relies heavily upon Structural Family Systems Theory. The four phases which a victim…

Resilience and the rehabilitation of adult spinal cord injury survivors: A qualitative systematic review.

PubMed

Kornhaber, Rachel; Mclean, Loyola; Betihavas, Vasiliki; Cleary, Michelle

2018-01-01

To synthesize the qualitative research evidence that explored how survivors of adult spinal cord injury experience and make sense of resilience. Spinal cord injury is often a sudden and unexpected life-changing event requiring complex and long-term rehabilitation. The development of resilience is essential in determining how spinal cord injury survivors negotiate this injury and rehabilitation. A qualitative systematic review and thematic synthesis of the research evidence. CINAHL, PubMed, Embase, Scopus and PsycINFO were searched, no restriction dates were used. Methodological quality was assessed using the Critical Appraisal Skills Programme checklist. Thematic synthesis focused on how survivors of adult spinal cord injury experience and make sense of resilience. Six qualitative research articles reported the experiences of 84 spinal cord injury survivors. Themes identified were: uncertainty and regaining independence; prior experiences of resilience; adopting resilient thinking; and strengthening resilience through supports. Recovery and rehabilitation following spinal cord survivors is influenced by the individual's capacity for resilience. Resilience may be influenced by previous life experiences and enhanced by supportive nursing staff encouraging self-efficacy. Survivors identified the need for active involvement in decision-making about their care to enable a sense of regaining control of their lives. This has the potential to have a significant impact on their self-efficacy and in turn health outcomes. © 2017 John Wiley & Sons Ltd.

Selected Films for Young Adults, 1984.

ERIC Educational Resources Information Center

Top of the News, 1984

1984-01-01

This 22-item filmography of 16mm films recommended for use in programs planned for young adults was compiled by the Selected Films for Young Adults Committee, Young Adult Services Division, American Library Association. Producers, directors, distributors, length, price, and brief annotations are provided. Addresses for 12 distributors are…

The prevalence of Vitamin D deficiency is higher in adult survivors of childhood cancer.

PubMed

Neville, Kristen A; Walker, Jan L; Cohn, Richard J; Cowell, Christopher T; White, Christopher P

2015-05-01

It is unclear whether the rate of vitamin D deficiency in paediatric cancer survivors is higher than in the background population, and whether this is of pathological significance. 25OHD was measured in a previously studied group of 208 survivors (n = 108 paediatric 5-17 years, n = 99 adults 18-39 years) and compared with paediatric (5-17 years; n = 132) and adult controls (25-35 years; n = 1393 from the AusDiab cohort) adjusted for age and gender. Relationships with treatment factors (irradiation, bone marrow transplantation and intensity of treatment) along with overweight/obesity (defined by BMI), abdominal adiposity (waist:height ratio >0·5) and hyperinsulinism or abnormal glucose tolerance (HI/aGT) were sought. 25OHD concentrations were similar in paediatric survivors compared with controls (64·3 ± 21·6 nmol/l vs 66·3 ± 22·8 nmol/l), with no effect of age or gender. Adjusted for gender, rates of 25OHD deficiency (<50 nmol/l) were higher in adult survivors compared with AusDiab controls (42·4% vs 20·8%; P < 0·001). Apart from time since diagnosis (P = 0·03), no relationship with treatment factors was detected. In multivariate regression analysis, abdominal adiposity (P = 0·001), but not overweight/obesity by BMI status nor HI/aGT, was associated with significantly lower 25OHD concentrations. Adult survivors are at increased risk of abnormalities in vitamin D compared to the background population, probably reflecting longer time since diagnosis. Like others, we have not identified any contributory treatment-related factors. Vitamin D deficiency does not appear to be associated with the development of abnormal glucose tolerance in this population. © 2015 John Wiley & Sons Ltd.

Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words.

PubMed

Wong, Alex W K; Chang, Ting-Ting; Christopher, Katrina; Lau, Stephen C L; Beaupin, Lynda K; Love, Brad; Lipsey, Kim L; Feuerstein, Michael

2017-12-01

Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language. A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software. A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges. Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs. This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.

Cognitive and attentional functioning in adolescents and young adults with Tetralogy of Fallot and d-transposition of the great arteries.

PubMed

Murphy, Lexa K; Compas, Bruce E; Reeslund, Kristen L; Gindville, Melissa C; Mah, May Ling; Markham, Larry W; Jordan, Lori C

2017-01-01

The objective of this study is to investigate cognitive and attentional function in adolescents and young adults with operated congenital heart disease. Previous research has indicated that children with congenital heart disease have deficits in broad areas of cognitive function. However, less attention has been given to survivors as they grow into adolescence and early adulthood. The participants were 18 non-syndromic adolescents and young adults with tetralogy of Fallot and d-transposition of the great arteries that required cardiac surgery before the age of 5 years, and 18 healthy, unaffected siblings (11-22 years of age for both groups). Cases with congenital heart disease and their siblings were administered Wechsler Intelligence scales and reported attention problems using the Achenbach System of Empirically Based Assessments. Cases were compared to both healthy siblings and established norms. Cases performed significantly lower than siblings on full scale IQ and processing speed, and significantly lower than norms on perceptual reasoning. Cases also reported more attention problems compared to both siblings and norms. Effect sizes varied with medium-to-large effects for processing speed, perceptual reasoning, working memory, and attention problems. Findings suggest that neurocognitive function may continue to be affected for congenital heart disease survivors in adolescence and young adulthood, and that comparisons to established norms may underestimate neurocognitive vulnerabilities.

Fertility-related knowledge and reproductive goals in childhood cancer survivors: short communication.

PubMed

Lehmann, V; Keim, M C; Nahata, L; Shultz, E L; Klosky, J L; Tuinman, M A; Gerhardt, C A

2017-11-01

Do young adult survivors of childhood cancer know their fertility status, in the context of their parenthood goals and screening for gonadal functioning? While 80% of survivors (who were without children) wanted children in the future, most did not know their fertility status, and screening for gonadal functioning was underutilized. Survivors of childhood cancer are at risk for infertility, but fertility counseling and assessment are underutilized. Separate studies indicated that survivors' fertility-related knowledge is poor and that they often wanted to have children. Yet, studies have not investigated the intersection of both issues, as well as potential distress if parenthood goals are not met. Young adult male and female survivors of childhood cancer (N = 149) completed cross-sectional surveys, and data for those without children (n = 105, 70.5%) are presented here. Participants were 20-40 years old (M = 26.5), diagnosed 5-33 years prior to study participation, and completed questionnaires online. Knowledge of fertility status, parenthood goals, and potential distress if survivors were unable to have children were assessed. Medical records were reviewed for hormone levels as indicators of screening for gonadal functioning. Most survivors (n = 81; 77.1%) did not know their fertility status, while over 80% (n = 89) wanted children (neither aspect varied by socio-demographic/cancer-specific factors). Two-thirds of survivors indicated they would be distressed if parenthood goals remained unfulfilled; especially female (versus male, t = 2.64; P = 0.01) or partnered (versus single, t = -3.45; P < 0.001) survivors. Forty survivors (38.1%) had documented assessments of gonadal functioning, of which 33 (82.5%) reported not knowing their fertility status. Relevant risk factors may have not been identified owing to limited sample size and missing treatment information. The underutilization of screening for gonadal functioning needs further exploration in other pediatric

Promoting Exercise in Young Cancer Survivors

Cancer.gov

In children and adolescent cancer survivors, an online game helped them get regular exercise, as this NCI Cancer Currents post explains. A NCI-funded trial is testing the approach for acute lymphoblastic leukemia (ALL) survivors.

Developmental Status and Intimacy in Adult Survivors of Childhood Cancer.

ERIC Educational Resources Information Center

Zevon, Michael A.; Corn, Barbara; Lowrie, Geoffrey; Green, Daniel M.

Whereas aggressive multimodal therapies are responsible for improved survival rates of children and adolescents diagnosed with cancer, concern has grown regarding the potential for adverse and delayed developmental effects resulting from these treatments. In light of this concern, this study assessed 207 adult survivors of childhood cancer in…

Measuring Development of Adolescent and Young Adult Cancer Patients: An Integrative Review of Available Instruments.

PubMed

Bell, Cynthia J; Bell, Ryan A; Zebrack, Brad; Kato, Ikuko; Morse, Alyssa; Borinstein, Scott C

2018-06-01

Adolescents and young adults (AYAs) 15-39 years old face unique challenges during cancer treatment as developmental and social needs are often disrupted to achieve cure. Developmentally appropriate supportive care for AYAs across the cancer trajectory is needed. The purpose of this review is to identify and describe instruments that measure AYA development across physical, psychological, and social domains, commenting on the instruments' psychometric properties and usefulness in clinical practice and research. A computerized literature search published in English from 1950 to January of 2017 was conducted utilizing the following databases: Mental Measurements Yearbook (MMY), Health and Psychosocial Instruments, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and Google Scholar. The following instruments were identified and described: the Child Health and Illness Profile-Adolescent Edition (CHIP-AE); the Course of Life Questionnaire; the Developmental Task Questionnaire (DTQ); the Impact of Cancer scale for childhood survivors and AYAs (IOC-CS and IOC-AYA); the McCleery Scale of Adolescent Development (MSAD); and the Minneapolis-Manchester Quality of Life Adolescent and Young Adult Form (MMQL-AF and MMQL-YA). Among currently available instruments, the IOC-AYA and MMQL-AF were relevant to AYAs undergoing or completing cancer therapy. However, validation for the IOC-AYA occurred in cancer survivors off treatment so further psychometric evaluation is needed in AYAs currently undergoing cancer treatment. Furthermore, the MMQL-AF has been validated for use during active cancer treatment, but is limited to adolescents 13-20 years. Further research may be needed to create or refine instruments measuring the developmental impact in AYAs, particularly emerging adults undergoing active cancer treatment.

Understanding the disaster experience of older adults by gender: the experience of survivors of the 2007 earthquake in Peru.

PubMed

Shenk, Dena; Mahon, Joan; Kalaw, Karel J; Ramos, Blanca; Tufan, Ismail

2010-11-01

We examine the experiences of older adult survivors of the August 2007 "Southern earthquake" in Peru within the cultural context of gender roles and family relationships. The data include 24 semistructured videotaped interviews conducted in Pisco in December 2007 with survivors of the earthquake aged 60-90. The responses, experiences, and adjustments of the older adult disaster survivors will be discussed in terms of their family and social support systems and gender roles. These older adults sustain their personal identities and deal with their health concerns in the aftermath of the earthquake in the context of these cultural systems of support.

Postsecondary Employment Experiences Among Young Adults With an Autism Spectrum Disorder RH: Employment in Young Adults With Autism

PubMed Central

Roux, Anne M.; Shattuck, Paul T.; Cooper, Benjamin P.; Anderson, Kristy A.; Wagner, Mary; Narendorf, Sarah C.

2013-01-01

Objective We examined postsecondary employment experiences of young adults with an autism spectrum disorder (ASD) and compared these outcomes with those of young adults with different disabilities. Method Data were from Wave 5 of the National Longitudinal Transition Study 2 (NLTS2), a nationally representative survey of young adults who had received special education services during high school. We examined the prevalence of ever having had—and currently having—a paid job at 21–25 years of age. We analyzed rates of full employment, wages earned, number of jobs held since high school, and job types. Results About half (53.4%) of young adults with an ASD had ever worked for pay outside the home since leaving high school, the lowest rate among disability groups. Young adults with an ASD earned an average of $8.10 per hour, significantly lower than average wages for young adults in the comparison groups, and held jobs that clustered within fewer occupational types. Odds of ever having had a paid job were higher for those who were older, from higher-income households, and with better conversational abilities or functional skills. Conclusions Findings of worse employment outcomes for young adults with an ASD suggest this population is experiencing particular difficulty in successfully transitioning into employment. Research is needed to determine strategies for improving outcomes as these young adults transition into adulthood. PMID:23972695

Experiencing reproductive concerns as a female cancer survivor is associated with depression.

PubMed

Gorman, Jessica R; Su, H Irene; Roberts, Samantha C; Dominick, Sally A; Malcarne, Vanessa L

2015-03-15

Young adult female cancer survivors have unmet reproductive concerns and informational needs that are associated with poorer quality of life. The purpose of this study was to examine the association between current reproductive concerns and moderate to severe depression among young survivors. This cross-sectional study included 200 female cancer survivors between the ages of 18 and 35 years who completed a Web-based survey measuring reproductive history, parenthood desires, reproductive concerns after cancer, and quality-of-life indicators. The mean age of the participants was 28 years (standard deviation, 4.4 years), and almost two-thirds were diagnosed within 5 years of survey completion. A multivariate logistic regression analysis controlling for education, duration of survivorship, and social support revealed an association between experiencing reproductive concerns and moderate to severe depression (odds ratio for each 5-unit increase in the Reproductive Concerns After Cancer [RCAC] score, 1.30; 95% confidence interval, 1.06-1.60). Among those with moderate to severe depression, 23% had high RCAC scores, whereas 6% of those with minimal to mild depression did (P < .001). A higher level of reproductive concerns was associated with greater odds of experiencing moderate to severe depression. Almost a quarter of survivors in this sample reported moderate to severe depression, and addressing reproductive concerns represents one potential area of intervention for improving the psychosocial health of young survivors. © 2014 American Cancer Society.

Follow-up care of young childhood cancer survivors: attendance and parental involvement.

PubMed

Vetsch, Janine; Rueegg, Corina S; Mader, Luzius; Bergstraesser, Eva; Rischewski, Johannes; Kuehni, Claudia E; Michel, Gisela

2016-07-01

Despite recommendations, only a proportion of long-term childhood cancer survivors attend follow-up care. We aimed to (1) describe the follow-up attendance of young survivors aged 11-17 years; (2) describe the parental involvement in follow-up, and (3) investigate predictors of follow-up attendance and parental involvement. As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of childhood cancer survivors aged 11-17 years. We assessed follow-up attendance of the child, parents' involvement in follow-up, illness perception (Brief IPQ), and sociodemographic data. Clinical data was available from the Swiss Childhood Cancer Registry. Of 309 eligible parents, 189 responded (67 %; mean time since diagnosis 11.3 years, range 6.8-17.2) and 75 % (n = 141) reported that their child still attended follow-up. Of these, 83 % (n = 117) reported ≥1 visit per year and 17 % (n = 23) reported <1 visit every year. Most survivors saw pediatric oncologists (n = 111; 79 % of 141), followed by endocrinologists (n = 24, 17 %) and general practitioners (n = 22, 16 %). Most parents (92 %) reported being involved in follow-up (n = 130). In multivariable and Cox regression analyses, longer time since diagnosis (p = 0.025) and lower perceived treatment control (assessed by IPQ4: how much parents thought follow-up can help with late effects; p = 0.009) were associated with non-attendance. Parents' overall information needs was significantly associated with parental involvement in the multivariable model (p = 0.041). Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.

Educational, vocational, psychosocial, and quality-of-life outcomes for adult survivors of childhood traumatic brain injury.

PubMed

Anderson, Vicki; Brown, Sandra; Newitt, Heidi; Hoile, Hannah

2009-01-01

To examine long-term outcomes from child traumatic brain injury (TBI) and relevance of injury severity. A retrospective cross-sectional design. One hundred and twenty-four young adult survivors of childhood TBI (81 men), aged 18 to 30 years at evaluation (mean = 23.5, SD = 2.9), with injury on average 13.7 years prior to evaluation divided according to injury severity: mild (n = 60), moderate (n = 27), and severe (n = 37). Questionnaires assessed educational and employment status, psychosocial function, and quality-of-life issues. Functional difficulties persisted into adulthood. Injury severity was a particularly strong predictor of long-term outcomes, with environmental factors playing a less consistent role. Survivors of severe TBI were particularly vulnerable, demonstrating global impairment: poorer school performance, employment difficulties, poor quality of life, and increased risk of mental health problems. Mild and moderate TBI were more benign, although lower educational attainment and employment status were identified, and moderate TBI was associated with late developing mental health issues. Traumatic brain injury is a lifelong problem, compromising the individual's capacity to meet developmental expectations across a wide range of functional domains.

Adult Survivors of Childhood Cancer Have Poor Adherence to Dietary Guidelines.

PubMed

Zhang, Fang Fang; Ojha, Rohit P; Krull, Kevin R; Gibson, Todd M; Lu, Lu; Lanctot, Jennifer; Chemaitilly, Wassim; Robison, Leslie L; Hudson, Melissa M

2016-12-01

Poor nutritional intake can exacerbate the chronic disease burden in childhood cancer survivors, whereas a healthful diet serves a protective function. Few studies have provided detailed evaluations of the diet of childhood cancer survivors. This study aimed to evaluate diet quality and dietary intakes of key food groups and nutrients in a large cohort of childhood cancer survivors and whether cancer and treatment characteristics have an impact on survivors' long-term intake. Diet was assessed in 2570 adult survivors of childhood cancer enrolled in the St. Jude Lifetime cohort (mean age = 32.3 y) by using the Block food-frequency questionnaire. The Healthy Eating Index-2010 (HEI-2010) was calculated to quantify diet quality. Cancer diagnosis and treatment exposure were abstracted from medical records. Differences in HEI-2010 by patient characteristics and treatment exposure were examined by using ANCOVA. The mean ± SD HEI-2010 in childhood cancer survivors was 57.9 ± 12.4 of a maximum score of 100. Referenced to Dietary Reference Intakes, survivors consumed inadequate amounts of vitamin D, vitamin E, potassium, fiber, magnesium, and calcium (27%, 54%, 58%, 59%, 84%, and 90% of the recommended intakes) but excessive amounts of sodium and saturated fat (155% and 115% of the recommended intakes) from foods. Survivors diagnosed when <5 y of age had a lower diet quality than did those diagnosed when ≥5 y of age (mean HEI-2010 score: 56.9 compared with 58.2; P = 0.046). Survivors who received higher radiation doses to the abdomen had a lower diet quality than those who received lower doses (mean HEI-2010 scores = 58.9, 57.2, 56.7, and 56.1 for doses of 0, 1-19.9, 20-29.9, and ≥30 Gy, respectively; P = 0.02). Long-term childhood cancer survivors have poor adherence to the 2010 Dietary Guidelines for Americans. Findings reinforce the need to incorporate nutrition into cancer care to improve diet quality and to reduce morbidities. © 2016 American Society for

Effects of dual task on turning ability in stroke survivors and older adults.

PubMed

Hollands, K L; Agnihotri, D; Tyson, S F

2014-09-01

Turning is an integral component of independent mobility in which stroke survivors frequently fall. This study sought to measure the effects of competing cognitive demands on the stepping patterns of stroke survivors, compared to healthy age-match adults, during turning as a putative mechanism for falls. Walking and turning (90°) was assessed under single (walking and turning alone) and dual task (subtracting serial 3s while walking and turning) conditions using an electronic, pressure-sensitive walkway. Dependent measures were time to turn, variability in time to turn, step length, step width and single support time during three steps of the turn. Turning ability in single and dual task conditions was compared between stroke survivors (n=17, mean ± SD: 59 ± 113 months post-stroke, 64 ± 10 years of age) and age-matched healthy counterparts (n=15). Both groups took longer, were more variable, tended to widen the second step and, crucially, increased single support time on the inside leg of the turn while turning and distracted. Increased single support time during turning may represent biomechanical mechanism, within stepping patterns of turning under distraction, for increased risk of falls for both stroke survivors and older adults. Crown Copyright © 2014. Published by Elsevier B.V. All rights reserved.

XRAYS (eXamining Relevance of Articles to Young Survivors) Program Survey of Information Needs and Media Use by Young Breast Cancer Survivors and Young Women at High-Risk for Breast Cancer.

PubMed

Yi, Robin H Pugh; Rezende, Lisa F; Huynh, Julie; Kramer, Karen; Cranmer, Melissa; Schlager, Lisa; Dearfield, Craig T; Friedman, Susan J

2017-09-28

Women age 45 years or younger with breast cancer, or who are at high-risk for breast cancer due to previously having the disease or to genetic risk, have distinct health risks and needs from their older counterparts. Young women frequently seek health information through the Internet and mainstream media, but often find it does not address their particular concerns, that it is difficult to evaluate or interpret, or even misleading. To help women better understand media coverage about new research, Facing Our Risk of Cancer Empowered (FORCE) developed the CDC-funded XRAYS (eXamining Relevance of Articles to Young Survivors) program. To assure that the XRAYS program is responsive to the community's needs, FORCE launched a web-based survey to assess where young women seek information about breast cancer, and to learn their unmet information needs. A total of 1,178 eligible women responded to the survey. In general, the breast cancer survivors and high-risk women between ages 18-45 years who responded to this survey, are using multiple media sources to seek information about breast cancer risk, prevention, screening, and treatment. They place trust in several media sources and use them to inform their medical decisions. Only about one-third of respondents to this survey report discussing media sources with their health care providers. Current survey results indicate that, by providing credible information on the quality of evidence and reporting in media reports on cancer, XRAYS is addressing a key need for health information. Results suggest that it will be useful for XRAYS to offer reviews of articles on a broad range of topics that can inform decisions at each stage of risk assessment and treatment.

Validation of a Health Literacy Measure for Adolescents and Young Adults Diagnosed with Cancer.

PubMed

McDonald, Fiona E J; Patterson, Pandora; Costa, Daniel S J; Shepherd, Heather L

2016-03-01

Health literacy can influence long-term health outcomes. This study aimed to validate an adapted version of the Functional, Communicative and Critical Health Literacy measure for adolescent and young adult (AYA) cancer patients and survivors (N = 105; age 12-24 years). Exploratory factor analysis was used to validate the measure, and indicated that a slightly modified item structure better fit the results. Furthermore, item response theory analysis highlighted location and discrimination parameter differences among items. Acceptability of the measure was high. This is the first validation of a health literacy measure among AYAs with an illness such as cancer.

Exploring Coping Strategies Among Young Asian American Women Breast Cancer Survivors.

PubMed

Yoo, Grace J; Sudhakar, Anantha; Le, Mai Nhung; Levine, Ellen G

2017-03-01

In recent years, breast cancer rates among young Asian American women have been increasing. Despite increases in breast cancer among young Asian American women, little is known about how this population copes throughout diagnosis, treatment, and survivorship. This study was a qualitative exploration of how young Asian American women cope with breast cancer diagnosis, treatment, and survivorship. In-depth interviews with 22 young (under the age of 50) Asian American women diagnosed with early stage breast cancer were conducted. Through qualitative data analysis, three major themes emerged including moving from managing the emotions of others to expressing emotional vulnerability, moving from work and productivity to work-life balance, and moving beyond the family and reaching out to breast cancer survivors. At diagnosis, participants worked to maintain normalcy including caring for others and working during treatment. Once treatment was over, women worked to find ways to use their experience as a transformative one and also to develop more positive coping skills including expressing emotional vulnerability and reaching out to others. Further studies are needed to create and test culturally tailored supportive interventions that enhance positive coping tools among young Asian American women diagnosed by breast cancer.

Young Adults' Implicit and Explicit Attitudes towards the Sexuality of Older Adults.

PubMed

Thompson, Ashley E; O'Sullivan, Lucia F; Byers, E Sandra; Shaughnessy, Krystelle

2014-09-01

Sexual interest and capacity can extend far into later life and result in many positive health outcomes. Yet there is little support for sexual expression in later life, particularly among young adults. This study assessed and compared young adults' explicit and implicit attitudes towards older adult sexuality. A sample of 120 participants (18-24 years; 58% female) completed a self-report (explicit) measure and a series of Implicit Association Tests capturing attitudes towards sexuality among older adults. Despite reporting positive explicit attitudes, young people revealed an implicit bias against the sexual lives of older adults. In particular, young adults demonstrated implicit biases favouring general, as compared to sexual, activities and young adults as compared to older adults. Moreover, the bias favouring general activities was amplified with regard to older adults as compared to younger adults. Our findings challenge the validity of research relying on self-reports of attitudes about older adult sexuality.

Long-term neurologic health and psychosocial function of adult survivors of childhood medulloblastoma/PNET: a report from the Childhood Cancer Survivor Study.

PubMed

King, Allison A; Seidel, Kristy; Di, Chongzhi; Leisenring, Wendy M; Perkins, Stephanie Mabry; Krull, Kevin R; Sklar, Charles A; Green, Daniel M; Armstrong, Gregory T; Zeltzer, Lonnie K; Wells, Elizabeth; Stovall, Marilyn; Ullrich, Nicole J; Oeffinger, Kevin C; Robison, Leslie L; Packer, Roger J

2017-05-01

Medulloblastoma is the most common malignant childhood brain tumor, although long-term risks for chronic neurologic health and psychosocial functioning in aging adult survivors are incompletely characterized. The Childhood Cancer Survivor Study (CCSS) includes 380 five-year survivors of medulloblastoma/primitive neuroectodermal tumor (PNET; median age at follow-up: 30 y, interquartile range 24-36) and sibling comparison (n = 4031). Cumulative incidence of neurologic health conditions was reported. Cox regression models provided hazard ratios (HRs) and 95% CIs. Cross-sectional outcomes were assessed using generalized linear models. Compared with siblings, survivors were at increased risk of late-onset hearing loss (HR: 36.0, 95% CI: 23.6-54.9), stroke (HR: 33.9, 95% CI: 17.8-64.7), seizure (HR: 12.8, 95% CI: 9.0-18.1), poor balance (HR: 10.4, 95% CI: 6.7-15.9), tinnitus (HR: 4.8, 95% CI: 3.5-6.8), and cataracts (HR: 31.8, 95% CI: 16.7-60.5). Temporal/frontal lobe radiotherapy of 50 Gy or more increased risk for hearing loss (HR: 1.9, 95% CI: 1.1-1.3), seizure (HR: 2.1, 95% CI: 1.1-3.9), stroke (HR: 3.5, 95% CI: 1.3-9.1), and tinnitus (HR: 2.0, 95% CI: 1.0-3.9). Survivors were less likely than siblings to earn a college degree (relative risk [RR]: 0.49, 95% CI: 0.39-0.60), marry (RR: 0.35, 95% CI: 0.29-0.42), and live independently (RR: 0.58, 95% CI: 0.52-0.66). Adult survivors of childhood medulloblastoma/PNET demonstrate pronounced risk for hearing impairment, stroke, lower educational attainment, and social independence. Interventions to support survivors should be a high priority. © The Author(s) 2016. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Focus on Young Adult Programming.

ERIC Educational Resources Information Center

Union, Bunni; Williams, Sheila

1996-01-01

Presents three library youth service programs which focus on "Pizza and Politicians," a public library pizza party which gave high school students and college-aged young adults a chance to meet and question politicians; a young adult "Reading to Seniors" program; "Making Books," a public library journal-making project…

Effects of social support on physical activity, self-efficacy, and quality of life in adult cancer survivors and their caregivers.

PubMed

Barber, Fedricker Diane

2013-09-01

To explore the relationships between adult cancer survivor and caregiver social support, self-efficacy for physical activity (SEPA), physical activity (PA) behavior, and quality of life (QOL); and to understand cancer survivors' and their caregivers' perceptions of social support in PA participation. Quasi-experimental. Five community-based exercise sites located in East Texas. 101 adult cancer survivors and caregivers. Participants completed questionnaires, the 8-Foot Up-and-Go test, and open-ended questions. Data analysis included descriptive statistics and frequencies, Spearman's rho, Mann-Whitney U, and Wilcoxon signed-rank test. Qualitative data were analyzed using thematic analysis. Social support, SEPA, PA, and QOL. Physical QOL was significantly higher in caregivers than cancer survivors. Spearman's rho identified a negative relationship between physical QOL and PA in cancer survivors; and a significant relationship between PA and PA participation in caregivers with social support from friend. Three themes emerged from the qualitative data regarding the perception of social support: companionship, motivation, and health promotion. Caregivers have higher QOL despite being the major social support provider to cancer survivors. Social support is essential to PA participation. Interventions to increase PA in adult cancer survivors may consider encouraging their caregivers to actively participate. Caregivers play an important role in the PA of cancer survivors. Perceived social support in the form of companionship and motivation may increase PA in cancer survivors and caregivers. Therefore, nurses may consider educating cancer survivors and caregivers on the importance of adopting and maintaining PA throughout the cancer care continuum.

Raising "Hot Topics" through Young Adult Literature

ERIC Educational Resources Information Center

Groenke, Susan; Maples, Joellen; Henderson, Jill

2010-01-01

While young adult literature increases adolescents' motivation to read, and adolescents choose to read young adult novels over more canonical works when given opportunities to choose, the authors present yet another reason for teaching young adult literature in the middle school classroom: it provides a medium through which adolescents and their…

Parents' and Young Adults' Perspectives on Transition Outcomes for Young Adults with Autism

ERIC Educational Resources Information Center

Sosnowy, Collette; Silverman, Chloe; Shattuck, Paul

2018-01-01

Existing research shows that young adults with autism spectrum disorder have poorer outcomes than their peers with other developmental disabilities in the key areas of independent living, postsecondary education, and employment. However, we understand little about how young adults with autism and their families understand and value outcomes and…

Art messaging to engage homeless young adults.

PubMed

Nyamathi, Adeline; Slagle, Alexandra; Thomas, Alexandra; Hudson, Angela; Kahilifard, Farinaz; Avila, Glenna; Orser, Julie; Cuchilla, Manuel

2011-01-01

Art has been shown to be an empowering and engaging entity with numerous benefits to vulnerable populations, including the homeless persons and young adults. However, little is known how homeless young adults perceive the use of art as messages that can communicate the danger of initiating or continuing drug and alcohol use. The purpose of this study was to solicit perspectives of homeless, drug-using young adults as to how art can be used to design messages for their peers about the danger of initiating or continuing drug and alcohol use. Qualitative methodology via focus group discussions was utilized to engage 24 homeless young adults enrolled from a drop-in site in Santa Monica, California. The findings revealed support for a myriad of delivery styles, including in-person communication, flyers, music, documentary film, and creative writing. The young adults also provided insight into the importance of the thematic framework of messages. Such themes ranged from empowering and hopeful messages to those designed to scare young homeless adults into not experimenting with drugs. The findings indicate that in addition to messages communicating the need to prevent or reduce drug and alcohol use, homeless young adults respond to messages that remind them of goals and dreams they once had for their future, and to content that is personal, real, and truthful. Our research indicates that messages that reinforce protective factors such as hope for the future and self-esteem may be as important to homeless young adults as information about the risks and consequences of drug use.

Young adult smoking behavior: a national survey.

PubMed

Ling, Pamela M; Neilands, Torsten B; Glantz, Stanton A

2009-05-01

Young adults have the highest smoking rate of any age group in the U.S., and new strategies to decrease young adult smoking are needed. The objective of the current study was to identify psychographic and demographic factors associated with current smoking and quitting behaviors among young adults. Attitudes, social groups, and self-descriptors, including supporting action against the tobacco industry, advertising receptivity, depression, alcohol use, and other factors associated with smoking were tested for associations with smoking behaviors in a 2005 cross-sectional survey of 1528 young adults (aged 18-25 years) from a web-enabled panel. Analyses were conducted in 2007. Being older was associated with current smoking, whereas having some higher education and being African American or Hispanic were negatively associated with smoking. Supporting action against the tobacco industry was negatively associated with smoking (AOR=0.34 [95% CI=0.22, 0.52]). Perceived usefulness of smoking, exposure to smokers, increased perceived smoking prevalence, receptivity to tobacco advertising, binge drinking, and exposure to tobacco advertising in bars and clubs were associated with smoking. Supporting action against the tobacco industry was associated with intentions to quit smoking (AOR=4.43 [95% CI=2.18, 8.60]). Young adults are vulnerable to tobacco-industry advertising. Media campaigns that denormalize the tobacco industry and appeal to young adults appear to be a powerful intervention to decrease young adult smoking.

Flavored e-cigarette use: Characterizing youth, young adult, and adult users.

PubMed

Harrell, M B; Weaver, S R; Loukas, A; Creamer, M; Marti, C N; Jackson, C D; Heath, J W; Nayak, P; Perry, C L; Pechacek, T F; Eriksen, M P

2017-03-01

The purpose of this study is to investigate how the use of flavored e-cigarettes varies between youth (12-17 years old), young adults (18-29 years old), and older adults (30 + years old). Cross-sectional surveys of school-going youth ( n  = 3907) and young adult college students ( n  = 5482) in Texas, and young adults and older adults ( n  = 6051) nationwide were administered in 2014-2015. Proportions and 95% confidence intervals were used to describe the percentage of e-cigarette use at initiation and in the past 30 days that was flavored, among current e-cigarette users. Chi-square tests were applied to examine differences by combustible tobacco product use and demographic factors. Most e-cigarette users said their first and "usual" e-cigarettes were flavored. At initiation, the majority of Texas school-going youth (98%), Texas young adult college students (95%), and young adults (71.2%) nationwide said their first e-cigarettes were flavored to taste like something other than tobacco, compared to 44.1% of older adults nationwide. Fruit and candy flavors predominated for all groups; and, for youth, flavors were an especially salient reason to use e-cigarettes. Among adults, the use of tobacco flavor at initiation was common among dual users (e-cigarettes + combustible tobacco), while other flavors were more common among former cigarette smokers (P = 0.03). Restricting the range of e-cigarette flavors (e.g., eliminating sweet flavors, like fruit and candy) may benefit youth and young adult prevention efforts. However, it is unclear what impact this change would have on adult smoking cessation.

Income in Adult Survivors of Childhood Cancer

PubMed Central

Wengenroth, Laura; Sommer, Grit; Schindler, Matthias; Spycher, Ben D.; von der Weid, Nicolas X.; Stutz-Grunder, Eveline; Michel, Gisela; Kuehni, Claudia E.

2016-01-01

Introduction Little is known about the impact of childhood cancer on the personal income of survivors. We compared income between survivors and siblings, and determined factors associated with income. Methods As part of the Swiss Childhood Cancer Survivor Study (SCCSS), a questionnaire was sent to survivors, aged ≥18 years, registered in the Swiss Childhood Cancer Registry (SCCR), diagnosed at age <21 years, who had survived ≥5 years after diagnosis of the primary tumor. Siblings were used as a comparison group. We asked questions about education, profession and income and retrieved clinical data from the SCCR. We used multivariable logistic regression to identify characteristics associated with income. Results We analyzed data from 1’506 survivors and 598 siblings. Survivors were less likely than siblings to have a high monthly income (>4’500 CHF), even after we adjusted for socio-demographic and educational factors (OR = 0.46, p<0.001). Older age, male sex, personal and parental education, and number of working hours were associated with high income. Survivors of leukemia (OR = 0.40, p<0.001), lymphoma (OR = 0.63, p = 0.040), CNS tumors (OR = 0.22, p<0.001), bone tumors (OR = 0.24, p = 0.003) had a lower income than siblings. Survivors who had cranial irradiation, had a lower income than survivors who had no cranial irradiation (OR = 0.48, p = 0.006). Discussion Even after adjusting for socio-demographic characteristics, education and working hours, survivors of various diagnostic groups have lower incomes than siblings. Further research needs to identify the underlying causes. PMID:27213682

Working with Young Adults. NIACE Lifelines in Adult Learning.

ERIC Educational Resources Information Center

Jackson, Carol

This document explains how adult educators and others in the United Kingdom can increase levels of participation and achievement in learning for young adults by providing informal learning opportunities for those young people who are least inclined to participate in formal education and training programs. The guide outlines a step-by-step approach…

Youth and young adult physical activity and body composition of young adult women: findings from the dietary intervention study in children.

PubMed

Hodge, Melissa G; Hovinga, Mary; Shepherd, John A; Egleston, Brian; Gabriel, Kelley; Van Horn, Linda; Robson, Alan; Snetselaar, Linda; Stevens, Victor K; Jung, Seungyoun; Dorgan, Joanne

2015-02-01

This study prospectively investigates associations between youth moderate-to-vigorous-intensity physical activity (MVPA) and body composition in young adult women using data from the Dietary Intervention Study in Children (DISC) and the DISC06 Follow-Up Study. MVPA was assessed by questionnaire on 5 occasions between the ages 8 and 18 years and at age 25-29 years in 215 DISC female participants. Using whole body dual-energy x-ray absorptiometry (DXA), overall adiposity and body fat distribution were assessed at age 25-29 years by percent body fat (%fat) and android-to-gynoid (A:G) fat ratio, respectively. Linear mixed effects models and generalized linear latent and mixed models were used to assess associations of youth MVPA with both outcomes. Young adult MVPA, adjusted for other young adult characteristics, was significantly inversely associated with young adult %fat (%fat decreased from 37.4% in the lowest MVPA quartile to 32.8% in the highest (p-trend = 0.02)). Adjusted for youth and young adult characteristics including young adult MVPA, youth MVPA also was significantly inversely associated with young adult %fat (β=-0.40 per 10 MET-hrs/wk, p = .02) . No significant associations between MVPA and A:G fat ratio were observed. Results suggest that youth and young adult MVPA are important independent predictors of adiposity in young women.

Design and recruitment of the Chicago Healthy Living Study: a study of health behaviors in a diverse cohort of adult childhood cancer survivors.

PubMed

Stolley, Melinda R; Sharp, Lisa K; Arroyo, Claudia; Ruffin, Cherese; Restrepo, Jacqueline; Campbell, Richard

2009-09-15

Adult childhood cancer survivors are at higher risk for developing late medical effects related to their cancer treatments. Health-promoting behaviors may reduce the risk of some late effects and the severity of others. This article describes the design and recruitment of the Chicago Healthy Living Study (CHLS), an on-going study designed to examine the health behaviors and body mass index of minority adult childhood cancer survivors compared with nonminority survivors and noncancer controls. Survivors are identified by the hospital cancer registries at 5 treating institutions in the Chicago area; then, a multilevel recruitment plan will be implemented with the objective of enrolling 450 adult survivors of childhood cancer (150 in each racial/ethnic group). Simultaneously, 375 adult African-American, Hispanic, and non-Hispanic white noncancer controls (125 in each racial/ethnic group) living in the Chicago area will be recruited by using listed, targeted digit dialing. All participants will complete a 2-hour interview of questionnaires related to diet, physical activity, smoking, and associated mediators. Height and weight also will be measured. The CHLS will provide important information on the health behaviors of adult minority childhood cancer survivors that can be used to inform the development of interventions to improve modifiable risks. Copyright (c) 2009 American Cancer Society.

Factors associated with recruiting adult survivors of childhood cancer into clinic-based research.

PubMed

Mertens, Ann C; Liu, Wei; Ness, Kirsten K; McDonald, Aaron; Hudson, Melissa M; Wasilewski-Masker, Karen; Bhatia, Smita; Nathan, Paul C; Leonard, Marcia; Srivastava, Kumar; Robison, Leslie L; Green, Daniel M

2014-10-01

A high proportion of pediatric cancer patients are now surviving into adulthood, but are at increased risk for late morbidity and premature mortality related to their diagnosis and therapeutic exposures. Little is known about the potential success of recruiting adult survivors of childhood cancer into research projects that would require a risk-based health evaluation within a clinical setting. Pediatric cancer survivors and siblings eligible for the current study were Childhood Cancer Survivor Study participants who lived within 100 miles of one of five Consortium for Pediatric Intervention Research institutions, regardless of where they were initially diagnosed and treated. A short survey was mailed to 829 survivors and 373 siblings to identify factors that predict interest, potential barriers, and motivators, to participation in research including a risk-based clinical evaluation. Overall, 92% of survivors responding to the survey were very interested/interested in participating in a research study requiring a visit to a local hospital clinic. Siblings of survivors were less interested than survivors in participating in such a study, with only 78% indicating that they were very interested/interested. Potential motivators to participation included visiting their treating hospital and receiving health information. The primary barrier to participation was related to taking time off from work. This study demonstrates that a subgroup of survivors would be willing to return to a long-term follow-up center to participate in intervention-based research. Identified motivating factors and perceived barriers need to be considered in determining the feasibility, design and execution of future research. © 2014 Wiley Periodicals, Inc.

The potential role of benefit and burden finding in school engagement of young leukaemia survivors: an exploratory study.

PubMed

Tougas, A-M; Jutras, S; Bigras, M; Tourigny, M

2016-01-01

Childhood cancer may radically change the daily lives of young survivors, particularly in school. Depending on the sense they derive from the experience of illness, survivors may go through profound transformations in the way they approach life. This exploratory study reports on school engagement of cancer survivors by examining their perceptions of benefits and burdens in relation to their illness. Forty-nine young Quebecers, previously diagnosed and treated for leukaemia, completed a questionnaire measuring their school engagement and participated in an interview focusing on the impact of cancer on their lives. Perceptions with regard to the presence and types of benefits and burdens were described and examined in light of participants' characteristics. An analysis of variance explored whether the presence/absence of benefits and burdens were associated with participants' scores regarding school engagement. Most participants mentioned benefits from having had cancer, and in particular benefits at an interpersonal level. Half of the participants mentioned burdens, mainly of a physical and psychological nature. Significant correlations indicated that (i) the older the survivors were, the more likely they were to report benefits in terms of qualities and strengths of character; (ii) the more time had elapsed since their diagnosis, the more survivors were likely to report psychological types of burdens; and (iii) children from single-parent families reported more frequently having appreciated social or recreational activities compared with children from two-parent families. One main effect indicated that school engagement was greater for survivors who perceived the presence of benefits. An interaction effect revealed that the perception of both benefits and burdens predicts the highest scores of school engagement. While the results reveal the promising potential that an optimistic yet realistic disposition has in regard to school engagement, more research is

Clustering of health behaviours in adult survivors of childhood cancer and the general population.

PubMed

Rebholz, C E; Rueegg, C S; Michel, G; Ammann, R A; von der Weid, N X; Kuehni, C E; Spycher, B D

2012-07-10

Little is known about engagement in multiple health behaviours in childhood cancer survivors. Using latent class analysis, we identified health behaviour patterns in 835 adult survivors of childhood cancer (age 20-35 years) and 1670 age- and sex-matched controls from the general population. Behaviour groups were determined from replies to questions on smoking, drinking, cannabis use, sporting activities, diet, sun protection and skin examination. The model identified four health behaviour patterns: 'risk-avoidance', with a generally healthy behaviour; 'moderate drinking', with higher levels of sporting activities, but moderate alcohol-consumption; 'risk-taking', engaging in several risk behaviours; and 'smoking', smoking but not drinking. Similar proportions of survivors and controls fell into the 'risk-avoiding' (42% vs 44%) and the 'risk-taking' cluster (14% vs 12%), but more survivors were in the 'moderate drinking' (39% vs 28%) and fewer in the 'smoking' cluster (5% vs 16%). Determinants of health behaviour clusters were gender, migration background, income and therapy. A comparable proportion of childhood cancer survivors as in the general population engage in multiple health-compromising behaviours. Because of increased vulnerability of survivors, multiple risk behaviours should be addressed in targeted health interventions.

A cross-sectional study on experiences of young adult carers compared to young adult noncarers: parentification, coping and resilience.

PubMed

Boumans, Nicolle P G; Dorant, Elisabeth

2018-05-15

Most young carer studies on parentification, resilience and coping concentrated on child carers up to age 18 years, whereas the group of young adult caregivers (18-24 years) has been neglected. In our study, we focused on these young adult caregivers, who are in a life phase in which young people usually are distancing themselves from their families and are striving for autonomy and freedom. To explore young adult carers' perceptions of parentification, resilience and coping compared to young adult noncarers. Cross-sectional. In 2014/2015, data were collected on 297 healthcare students from a school for vocational education and a university in the Netherlands. A fully structured questionnaire was used. Young adult carers were compared with young adult noncarers on parentification, resilience and coping. Fifty-six students identified themselves as a carer: 40 vocational education students and 16 university students. Carers scored significantly higher than noncarers on three out of six parentification dimensions. No differences were found for resilience and problem-focused coping behaviour, whereas results for emotion-focused coping demonstrated a higher score for the carers compared to the noncarers. Although it is important to take care of the needs of all young carers, special attention should be given to those who are at the start of their adult lives, undergoing extensive changes and taking major decisions on study and career issues. Home-care professionals and school counsellors should be able to recognise this group and their needs and activate support from specialised services and significant others. © 2018 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.

Active Transportation in Adult Survivors of Childhood Cancer and Neighborhood Controls

PubMed Central

Slater, Megan E.; Kelly, Aaron S.; Sadak, Karim T.; Ross, Julie A.

2015-01-01

Purpose Childhood cancer survivors (CCS) are at high risk of treatment-related late effects, including cardiovascular disease and diabetes, which can be exacerbated by inadequate physical activity (PA). Previous PA interventions targeting CCS have focused on the domain of leisure-time/recreational PA. Active transportation, another domain of PA, has not been described in CCS. Therefore, this study aimed to identify active transportation behaviors, barriers, and correlates in adult CCS. Methods We recruited 158 adult CCS and 153 controls matched on age, sex, and neighborhood for a survey regarding active transportation behaviors and perceptions. Linear and logistic regression models accounting for correlation among matched participants were used. Results Adult CCS engaged in similar levels of active transportation as controls (2.72 vs. 2.32 hours/week, P=0.40) despite perceiving greater health-related barriers (1.88 vs. 1.65 (measured on four-point Likert scale), P=0.01). Marital/relationship status (odds ratio (OR)=0.30, 95% confidence interval (CI)=0.11–0.81), planning/psychosocial barriers (OR=0.15, 95% CI=0.04–0.53), and perceived neighborhood walkability (OR=2.55, 95% CI=1.14–5.66) were correlates of active transportation among adult CCS, while objective neighborhood walkability (OR=1.03, 95% CI=1.01–1.05) was a correlate among controls. Conclusions Results suggest adult CCS and controls utilize active transportation at approximately equal levels. Factors other than health, including perceived neighborhood walkability, appear to influence active transportation behaviors to a greater degree in adult CCS. Implications for Cancer Survivors Interventions might consider promoting active transportation as a way to incorporate more PA into the daily lives of adult CCS. Such interventions will not be widely successful, however, without existing or improved neighborhood walkability/bikeability. PMID:25809159

"I don't want to take chances.": A qualitative exploration of surgical decision making in young breast cancer survivors.

PubMed

Rosenberg, Shoshana M; Greaney, Mary L; Patenaude, Andrea F; Sepucha, Karen R; Meyer, Meghan E; Partridge, Ann H

2018-06-01

Young women with unilateral breast cancer are increasingly choosing contralateral prophylactic mastectomy (CPM), despite its limited medical benefit for most women. The purpose of this study was to better understand this choice through a qualitative exploration of surgical decision-making in young survivors, including how issues particular to younger women affected their decision and the post-surgical experience. Women age ≤ 40 years with stage 0 to III breast cancer, 1 to 3 years from diagnosis who had undergone breast cancer surgery were recruited to participate. Four focus groups were conducted: 2 with women who had bilateral mastectomy and 2 with women who kept their contralateral breast. Focus groups were recorded and transcribed with identifiers removed. Emergent themes were identified by thematic content analysis using NVivo 11. Of the 20 participants, median age at diagnosis was 37 years. Emergent themes were categorized into the following domains: (1) emotions/feelings surrounding surgery/decision about surgery; (2) factors affecting the decision; (3) communication and interaction with the healthcare team; (4) impact on post-surgical life and recovery; and (5) support needs. Young women who chose CPM often were concerned about a future breast event, despite this low risk, suggesting some gain peace of mind by choosing CPM. Young survivors also had many physical and emotional concerns after surgery for which they did not always feel prepared. Informational resources and decision aids may enhance patient-doctor communication and help young survivors better understand risk and manage expectations surrounding short and longer-term physical and emotional effects after surgery. Copyright © 2018 John Wiley & Sons, Ltd.

Hippocampal volume and auditory attention on a verbal memory task with adult survivors of pediatric brain tumor.

PubMed

Jayakar, Reema; King, Tricia Z; Morris, Robin; Na, Sabrina

2015-03-01

We examined the nature of verbal memory deficits and the possible hippocampal underpinnings in long-term adult survivors of childhood brain tumor. 35 survivors (M = 24.10 ± 4.93 years at testing; 54% female), on average 15 years post-diagnosis, and 59 typically developing adults (M = 22.40 ± 4.35 years, 54% female) participated. Automated FMRIB Software Library (FSL) tools were used to measure hippocampal, putamen, and whole brain volumes. The California Verbal Learning Test-Second Edition (CVLT-II) was used to assess verbal memory. Hippocampal, F(1, 91) = 4.06, ηp² = .04; putamen, F(1, 91) = 11.18, ηp² = .11; and whole brain, F(1, 92) = 18.51, ηp² = .17, volumes were significantly lower for survivors than controls (p < .05). Hippocampus and putamen volumes were significantly correlated (r = .62, p < .001) with each other, but not with total brain volume (r = .09; r = .08), for survivors and controls. Verbal memory indices of auditory attention list span (Trial 1: F(1, 92) = 12.70, η² = .12) and final list learning (Trial 5: F(1, 92) = 6.01, η² = .06) were significantly lower for survivors (p < .05). Total hippocampal volume in survivors was significantly correlated (r = .43, p = .01) with auditory attention, but none of the other CVLT-II indices. Secondary analyses for the effect of treatment factors are presented. Volumetric differences between survivors and controls exist for the whole brain and for subcortical structures on average 15 years post-diagnosis. Treatment factors seem to have a unique effect on subcortical structures. Memory differences between survivors and controls are largely contingent upon auditory attention list span. Only hippocampal volume is associated with the auditory attention list span component of verbal memory. These findings are particularly robust for survivors treated with radiation. PsycINFO Database Record (c) 2015 APA, all rights reserved.

The psychosocial impact of natural disasters among adult survivors: an integrative review.

PubMed

Warsini, Sri; West, Caryn; Ed Tt, Grad Dip; Res Meth, Grad Cert; Mills, Jane; Usher, Kim

2014-06-01

The aim of this review was to identify the psychosocial impact of natural disasters on adult (over the age of 18 years) survivors. Databases searched included PsycInfo, CINAHL, Proquest, Ovid SP, Scopus, and Science Direct. The search was limited to articles written in English and published between 2002 and 2012. A total of 1,642 abstracts and articles were obtained during the first search; 39 articles were retained. The results indicate that PTSD is the most-studied psychosocial impact after a disaster. Mental health nurses have a significant role to play in supporting survivors and can assist with the development of resilience in community members.

Defining Success in Young Adults with Emotional Disabilities

ERIC Educational Resources Information Center

Carrescia, Susanne G.

2012-01-01

The purpose of this study is to develop a definition of success by constructing a portrait of successful young adults with emotional disabilities. Nine young adults with emotional disabilities were interviewed individually after graduating from high school. The research questions that guided the study centered on the young adults'…

Treatment of Young Adults with Acute Lymphoblastic Leukemia.

PubMed

Kansagra, Ankit; Litzow, Mark

2017-06-01

Young adults with acute lymphoblastic leukemia are a distinctive category of patients, with substantial difference in disease biology and response to therapy; hence, they pose unique challenges and issues beyond those faced by children and older adults. Despite inferior survival compared to children, there is growing evidence to suggest that young adults have improved outcomes when treated with pediatric-based approaches. With better supportive care and toxicity management and multidisciplinary team and approach, we have made great improvement in outcomes of young adults with ALL. However, despite significant progress, patients with persistence of minimal residual disease have a poor prognosis. This review discusses current controversies in the management of young adults with ALL, outcomes following pediatric and adult protocols, and the role of allogeneic stem cell transplantation. We also explore recent advances in disease monitoring and highlight our approach to incorporation of novel therapies in the management of young adults with ALL.

Intergenerational Transmission of Resilience? Sense of Coherence Is Associated between Lithuanian Survivors of Political Violence and Their Adult Offspring.

PubMed

Kazlauskas, Evaldas; Gailiene, Danute; Vaskeliene, Ieva; Skeryte-Kazlauskiene, Monika

2017-01-01

Little is known about intergeneration effects on mental health in the families of survivors of political oppression of communist regime in Central and Eastern Europe. We aimed to explore post-traumatic stress in the second generation of the Lithuanian survivors of political violence, and analyze links between parental and adult offsprings' sense of coherence in the families exposed to political violence during the oppressive communist regime in Lithuania. A total of 110 matched pairs of communist regime political violence survivors (mean age = 73.22 years) and their adult offspring (mean age = 44.65 years) participated in this study. Life-time traumatic experiences and sense of coherence were measured in both parents and their offspring. Post-traumatic stress symptoms were assessed in the second generation of survivors. We found a high vulnerability in the second generation of the Lithuanian families of political violence survivors, with a 29% of probable PTSD in the second generation based on self-report measures. A significant positive correlation between parental and adult offsprings' sense of coherence was found. Post-traumatic stress symptoms were associated negatively with a sense of coherence in the second generation. Our study indicates the links between parental and the second generation's sense of coherence in the families of survivors of political violence. The study raises broader questions about the intergenerational aspects of resilience. Further studies are needed to explore the links between parental and child sense of coherence in other samples.

Film and the Young Adult Novel.

ERIC Educational Resources Information Center

Foster, Harold M.

1994-01-01

Discusses films based on young adult novels and why they are often considered failures. Describes various films about young adults and their problems that have proven to be artistic successes. Gives close attention to film versions of S. E. Hinton's novels and of Robert Cormier's "The Chocolate War." (HB)

Connecting the Canon to Current Young Adult Literature

ERIC Educational Resources Information Center

Rybakova, Katie; Roccanti, Rikki

2016-01-01

In this article we discuss the respective roles of young adult literature and literary texts in the secondary level English Language Arts classroom and explore the connections that can be made between popular young adult books and the traditional canon. We provide examples showing how young adult literature bestsellers such as "The Book…

Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic.

PubMed

Cherven, Brooke; Mertens, Ann; Meacham, Lillian R; Williamson, Rebecca; Boring, Cathy; Wasilewski-Masker, Karen

2014-01-01

Survivors of childhood cancer are at risk for a variety of treatment-related late effects and require lifelong individualized surveillance for early detection of late effects. This study assessed knowledge and perceptions of late effects risk before and after a survivor clinic visit. Young adult survivors (≥ 16 years) and parents of child survivors (< 16 years) were recruited prior to initial visit to a cancer survivor program. Sixty-five participants completed a baseline survey and 50 completed both a baseline and follow-up survey. Participants were found to have a low perceived likelihood of developing a late effect of cancer therapy and many incorrect perceptions of risk for individual late effects. Low knowledge before clinic (odds ratio = 9.6; 95% confidence interval, 1.7-92.8; P = .02) and low perceived likelihood of developing a late effect (odds ratio = 18.7; 95% confidence interval, 2.7-242.3; P = .01) were found to predict low knowledge of late effect risk at follow-up. This suggests that perceived likelihood of developing a late effect is an important factor in the individuals' ability to learn about their risk and should be addressed before initiation of education. © 2014 by Association of Pediatric Hematology/Oncology Nurses.

Young female survivors of sexual abuse in Malaysia and depression: what factors are associated with better outcome?

PubMed

Wahab, Suzaily; Tan, Susan Mooi Koon; Marimuthu, Sheila; Razali, Rosdinom; Muhamad, Nor Asiah

2013-04-01

Research in the field of child sexual abuse is lacking in Malaysia. The aims of this study are to identify the association between sociodemographic factors and depression among sexually abused females. A cross-sectional study was conducted among 51 young sexually abused female attendees at the Suspected Child Abuse and Neglect (SCAN) clinic of Hospital Kuala Lumpur, a tertiary referral centre. Upon obtaining informed consent from participant and guardian, participants were screened for depression using the Strength and Difficulty Questionnaire (SDQ) and interviewed using the Schedule for Affective Disorders and Schizophrenia for School Aged Children (K-SADS) for depressive disorders and K-SADS-PL (Present and Lifetime version) to diagnose depression. Sociodemographic data and details of the abuse were also obtained. Of the survivors, 33.3% were depressed. Univariate analysis showed significant association between legal guardianship, living environment and duration of abuse with depression, however, multivariate analyses later showed that the sole predictor for depression was living environment. Respondents who lived with others were 23-times more likely to be depressed as compared to those who lived with their parents. Depression is common among young survivors of sexual abuse. Those who lived with parents appeared to have a better outcome. Thus, further research to explore possible protective factors associated with living with parents is vital. This will help clinicians develop strategies to empower parents and families help these young survivors get back on track with their lives despite the abuse. Copyright © 2013 Wiley Publishing Asia Pty Ltd.

Life history strategy and young adult substance use.

PubMed

Richardson, George B; Chen, Ching-Chen; Dai, Chia-Liang; Swoboda, Christopher M

2014-11-03

This study tested whether life history strategy (LHS) and its intergenerational transmission could explain young adult use of common psychoactive substances. We tested a sequential structural equation model using data from the National Longitudinal Survey of Youth. During young adulthood, fast LHS explained 61% of the variance in overall liability for substance use. Faster parent LHS predicted poorer health and lesser alcohol use, greater neuroticism and cigarette smoking, but did not predict fast LHS or overall liability for substance use among young adults. Young adult neuroticism was independent of substance use controlling for fast LHS. The surprising finding of independence between parent and child LHS casts some uncertainty upon the identity of the parent and child LHS variables. Fast LHS may be the primary driver of young adult use of common psychoactive substances. However, it is possible that the young adult fast LHS variable is better defined as young adult mating competition. We discuss our findings in depth, chart out some intriguing new directions for life history research that may clarify the dimensionality of LHS and its mediation of the intergenerational transmission of substance use, and discuss implications for substance abuse prevention and treatment.

MARRIAGE AND MENTAL HEALTH AMONG YOUNG ADULTS

PubMed Central

Uecker, Jeremy E.

2012-01-01

Marriage is widely thought to confer mental health benefits, but little is known about how this relationship may vary across the life course. Early marriage—which is non-normative—could have no, or even negative, mental health consequences for young adults. Using survey data from Waves 1 and 3 of the National Longitudinal Study of Adolescent Health (N = 11,743), I find that married young adults exhibit similar levels of psychological distress as young adults who are in any kind of romantic relationship. Married and engaged young adults report lower rates of drunkenness than others. Married young adults—especially those who first married at age 22–26—report higher life satisfaction than those in other types of relationships or no relationship at all, as well as those who married at younger ages. Explanations for these findings are examined, and their implications are discussed. PMID:22328171

Low depressive symptom and mental distress scores in adult long-term survivors of childhood acute lymphoblastic leukemia.

PubMed

Harila, Marika J; Niinivirta, Tomi I T; Winqvist, Satu; Harila-Saari, Arja H

2011-04-01

Childhood cancer survivors are thought to be at risk of psychological difficulties. We examined the prevalence of depressive symptoms and mental well-being in adult long-term survivors of childhood acute lymphoblastic leukemia (ALL) at a mean age of 20 years after the cessation of therapy. Depressive symptoms were assessed with Beck Depression Inventory (BDI-21) and mental distress with General Health Questionnaire (GHQ-12) among 73 ALL survivors and 146 healthy controls. The ALL survivors obtained significantly lower BDI scores (P=0.046) compared with the controls, indicating less depressive symptoms among the ALL survivors. BDI scores indicated a significantly less frequent moderate or severe depression in the ALL survivors compared with the controls (P=0.039). BDI scores indicated no depression in 80.8% of the ALL survivors and 73.3% of the control group. The female ALL survivors obtained lower BDI scores than did the female controls (P=0.005). No difference was found in GHQ-12 scores between the survivors and the controls. Survivors of ALL reported fewer depressive symptoms and equal mental well-being compared with healthy controls. Our findings support the idea that childhood leukemia survivors' subjective experience of well-being is possibly affected by repressive adaptive style.

Pituitary disorders as a predictor of apathy and executive dysfunction in adult survivors of childhood brain tumors.

PubMed

Fox, Michelle E; King, Tricia Z

2016-11-01

The relationship between apathy and endocrine dysfunction, both frequent outcomes of neurological insult, has not yet been investigated in brain tumor survivors. The present study aimed to assess the relationship between pituitary disorders and apathy and other facets of executive function in long-term adult survivors of childhood brain tumors and to differentiate between apathy and depression in this population. Seventy-six adult survivors of childhood brain tumors at least 5 years past diagnosis participated. An informant completed the Frontal Systems Behavior Scale (FrSBe), and 75 of the 76 participants completed a Structured Clinical Interview for the DSM-IV-TR (SCID). Information on neuroendocrine dysfunction was obtained through medical chart review. Clinically significant levels of apathy on the FrSBe were identified in 41% of survivors. Pituitary dysfunction significantly explained 9% of the variance in apathy scores and affected whether an individual presented with clinical levels of apathy. Pituitary dysfunction predicted higher levels of executive dysfunction but did not impact whether a participant reached clinical levels of executive dysfunction. A past major depressive episode (MDE) significantly predicted current apathy but showed no relationship with pituitary disorders. Radiation treatment predicted pituitary dysfunction but not the differences in apathy or executive functions. Apathy and executive dysfunction in survivors of childhood brain tumors are strongly predicted by pituitary dysfunction, and individuals with pituitary dysfunction are more likely to present with clinical levels of apathy as adults. Clinical levels of apathy may present absent of current depression, and pituitary dysfunction impacts apathy uniquely. © 2016 Wiley Periodicals, Inc.

Clustering of health behaviours in adult survivors of childhood cancer and the general population

PubMed Central

Rebholz, C E; Rueegg, C S; Michel, G; Ammann, R A; von der Weid, N X; Kuehni, C E; Spycher, B D

2012-01-01

Background: Little is known about engagement in multiple health behaviours in childhood cancer survivors. Methods: Using latent class analysis, we identified health behaviour patterns in 835 adult survivors of childhood cancer (age 20–35 years) and 1670 age- and sex-matched controls from the general population. Behaviour groups were determined from replies to questions on smoking, drinking, cannabis use, sporting activities, diet, sun protection and skin examination. Results: The model identified four health behaviour patterns: ‘risk-avoidance', with a generally healthy behaviour; ‘moderate drinking', with higher levels of sporting activities, but moderate alcohol-consumption; ‘risk-taking', engaging in several risk behaviours; and ‘smoking', smoking but not drinking. Similar proportions of survivors and controls fell into the ‘risk-avoiding' (42% vs 44%) and the ‘risk-taking' cluster (14% vs 12%), but more survivors were in the ‘moderate drinking' (39% vs 28%) and fewer in the ‘smoking' cluster (5% vs 16%). Determinants of health behaviour clusters were gender, migration background, income and therapy. Conclusion: A comparable proportion of childhood cancer survivors as in the general population engage in multiple health-compromising behaviours. Because of increased vulnerability of survivors, multiple risk behaviours should be addressed in targeted health interventions. PMID:22722311

Career readiness in adult survivors of childhood cancer: a report from the St. Jude Lifetime Cohort study

PubMed Central

Strauser, David; Klosky, James L.; Brinkman, Tara M.; Wong, Alex W.K.; Chan, Fong; Lanctot, Jennifer Q.; Ojha, Rohit P.; Robison, Leslie L.; Hudson, Melissa M.; Ness, Kirsten K.

2014-01-01

Purpose Adult survivors of childhood cancer experience difficulties in obtaining and maintaining employment. Employment-related challenges are associated with treatment-related health conditions, and may also be related to vocational factors such as career readiness, skill acquisition, and work experience. Unfortunately, little is known about how treatment, health and vocational related factors interact to impact career development among childhood cancer survivors. Methods 385 adult survivors of childhood cancer (42.1% male, median age 38 (21-62) years), participating in the St. Jude Lifetime Cohort study, completed a work experiences survey that included measures of career readiness and vocational identity. Logistic regression was used to compare characteristics of survivors in the low career readiness category to those in the medium or high career readiness category, and structural equation modeling (SEM) was utilized to evaluate associations between career readiness, vocational identity, treatment intensity and physical/emotional health. Results Low career readiness was prevalent in 17.4% of survivors. Univariate analysis did not identify any significant associations between cancer treatment-related factors and career readiness. Unemployed survivors (Odds ratio (OR) 2.3, 95% Confidence Interval (CI) 1.2-4.5), those who were not college graduates (OR 3.0, 95% CI 1.6-5.6), and those who had no personal income (OR 5.9, 95% CI 1.7-30.9) were at increased risk of low career readiness. SEM indicated that associations between treatment intensity, physical health, age at diagnosis and career readiness were mediated by emotional health and vocational identity. 63%, 35%, and 10% of the variance in career readiness, vocational identity, and emotional health, respectively, were explained by this theoretical model. Conclusions The results of this study indicate that individuals who reported low levels of career readiness were more likely to be unemployed, earn less than $40

Psychosocial Care for Adult and Child Survivors of the 2004 Tsunami Disaster in India

PubMed Central

Becker, Susan M.

2006-01-01

The tsunami disaster in South Asia affected the mental health of thousands of survivors, but psychological aspects of rehabilitation are frequently overlooked in public health initiatives. From January to March 2005, teams from the National Institute of Mental Health and Neurosciences in Bangalore, India, traveled to south India and implemented a “train the trainer” community-based mental health program of psychosocial care to facilitate the recovery of child and adult survivors. Psychosocial care has applications to natural and man-made disasters in developing countries. PMID:16809599

"From Snail Mode to Rocket Ship Mode": Adolescents and Young Adults' Experiences of Returning to Work and School After Hematopoietic Cell Transplantation.

PubMed

Brauer, Eden R; Pieters, Huibrie C; Ganz, Patricia A; Landier, Wendy; Pavlish, Carol; Heilemann, MarySue V

2017-12-01

Resuming normal activities, such as work and school, is an important dimension of psychosocial recovery in cancer survivorship. Minimal data exist regarding adolescents or young adults' experiences of returning to school or work after cancer. The purpose of this study was to explore the processes of resuming work and school among adolescents and young adults after hematopoietic cell transplantation (HCT). In-depth interviews were conducted with 18 adolescents and young adults, who were 15-29 years when they underwent HCT and 6-60 months post-transplant at study enrollment. Interview transcripts were systematically analyzed using Grounded Theory methodology. Participants described the context in which they attempted to return to work or school, specific challenges they faced, and strategies they developed in these environments. Feeling left behind from their peers and their pre-diagnosis selves, participants described "rushing" back to school and work impulsively, taking on too much too quickly while facing overwhelming physical and cognitive demands. Factors motivating this sense of urgency as well as barriers to successful and sustainable reentry in these settings are also addressed. Findings are discussed in the context of important opportunities for clinical management, age-appropriate interventions, and implications for future research. A better understanding of psychosocial late effects, specifically related to school and work trajectories after cancer, is critical to survivorship care for adolescent and young adult cancer survivors.

Young adult female cancer survivors' unmet information needs and reproductive concerns contribute to decisional conflict regarding posttreatment fertility preservation.

PubMed

Benedict, Catherine; Thom, Bridgette; N Friedman, Danielle; Diotallevi, Debbie; M Pottenger, Elaine; J Raghunathan, Nirupa; Kelvin, Joanne F

2016-07-01

Many young adult female cancer survivors (YAFCS) are at risk of experiencing premature menopause. The current study characterized the posttreatment fertility information needs, reproductive concerns, and decisional conflict regarding future options for posttreatment fertility preservation (FP) among YAFCS. Participants completed a Web-based, anonymous survey between February and March 2015. The survey included investigator-designed questions of perceived information needs, the Reproductive Concerns After Cancer Scale, and the Decisional Conflict Scale. Analyses included Pearson correlation coefficients, independent-sample Student t tests, and multiple regression. There was a total of 346 participants with an average age of 29.9 years (SD = 4.1 years) who were 4.9 years from treatment (SD = 5.4 years [range, 0-27 years]). The main analyses focused on a subgroup of YAFCS with uncertain fertility status who had not previously undergone/attempted FP and either wanted future children or were unsure (179 women). Across fertility information topics, 43% to 62% of participants reported unmet information needs. The greatest reproductive concerns were related to fertility potential and the health of future offspring. The regression model controlled for a priori covariates including current age, age at treatment completion, income, relationship status, nulliparity, and prior fertility evaluation. Greater unmet information needs were found to be related to greater decisional conflict (β = .43; p<.001); greater reproductive concerns were associated at the trend level (β = .14, p = .08; F[8,118] = 6.42, p<.001). YAFCS with limited awareness or knowledge of their risk of experiencing premature menopause and FP options reported higher levels of decisional conflict regarding future FP. Posttreatment survivorship care should include comprehensive reproductive health counseling, including posttreatment FP options and family-building alternatives. Cancer 2016

Does Vocational Training Matter for Young Adults in the Labour Market?

ERIC Educational Resources Information Center

Murray, Asa; Skarlind, Anders

2005-01-01

The impact of vocational training on employment and income is investigated for young adults. Young adults without further education and training are compared to young adults with two-years and young adults with three-years of vocational training. The sample consists of 41 000 Swedish young adults born in 1974. The employment of these young adults…

Quality of Life, Self-Esteem, and Future Expectations of Adolescent and Young Adult Cancer Survivors.

PubMed

Tonsing, Kareen N; Ow, Rosaleen

2018-02-01

Significant advancements in treatment modalities over the past few decades have significantly improved the survival rates of many types of childhood cancer, directing attention to the psychosocial consequences of successful treatment and subsequent survival. This study assesses quality of life (QoL) among survivors of childhood cancer. Data were collected by means of a survey questionnaire. Participants were assured of confidentiality and of the voluntary nature of participation. Participants ranged in age from 12 to 24 years (mean age = 17.2); 62 percent were male; 45.6 percent were in secondary grades (middle school or high school). Results showed that among the QoL domains, spiritual subscale ranked highest, and physical domain showed the lowest mean score. Self-esteem emerged as an important predictor for social domain of QoL. Cancer-specific worry emerged as a significant predictor for overall QoL. The findings suggest that survivors rated high on positive life changes and sense of purpose, which are associated with positive QoL. However, this was tempered by worries and uncertainty. This study provides seminal information on the psychosocial needs of childhood cancer survivors in an Asian context that can be used by health care professionals and providers to further promote support and health care following treatment. © 2017 National Association of Social Workers.

The Relevance of Young Adult Literature

ERIC Educational Resources Information Center

Stallworth, B. Joyce

2006-01-01

Although young adult literature is often recommended as a reading bridge to the classics, Stallworth insists that the genre deserves a prominent place in the middle school canon in its own right. She describes several examples from middle school classrooms of how young adult novels can enhance tweens' "life literacy" by both helping them develop…

Timing of Reflexive Visuospatial Orienting in Young, Young-Old, and Old-Old Adults

PubMed Central

Langley, Linda K.; Friesen, Chris Kelland; Saville, Alyson L.; Ciernia, Annie T.

2012-01-01

This study examined adult age differences in reflexive orienting to two types of uninformative spatial cues: central arrows and peripheral onsets. In two experiments using a Posner cuing task, young adults (ages 18 – 28 yrs), young-old adults (ages 60 – 74 yrs), and old-old adults (ages 75 – 92 yrs) responded to targets that were preceded 100–1,000 ms earlier by a central arrow or a peripheral abrupt onset. In Experiment 1, the cue remained present upon target onset. Facilitation effects at early cue-target stimulus onset asynchronies (SOAs) were prolonged in duration for the two older groups relative to the young adults. At later cue-target SOAs, inhibition of return (IOR) that was initiated by peripheral onset cues was observed in the performance of young adults but not in that of the two older groups. In Experiment 2, the cue was presented briefly and removed prior to target onset. The change in cue duration minimized age differences (particularly for young-old adults) in facilitation effects and led to IOR for all three age groups. The findings are consistent with the idea that attentional control settings change with age, with higher settings for older adults leading to delayed disengagement from spatial cues. PMID:21394555

No Limits--READ! Young Adult Reading Club and Programming Manual.

ERIC Educational Resources Information Center

Youngblood, Lisa

This manual provides strategies for developing young adult collections, outlines a reading club designed specifically for young adults, suggests promotional ideas for the young adult reading club and young adult programming in general, and provides age-appropriate ideas for both formal and passive programming. Specific topics covered in the…

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP).

PubMed

Clinton-McHarg, Tara; Carey, Mariko; Sanson-Fisher, Rob; D'Este, Catherine; Shakeshaft, Anthony

2012-01-30

Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

PubMed Central

2012-01-01

Background Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. Results The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. Conclusions The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory

School: The Normalizing Factor for Children with Childhood Leukemia. Perspectives of Young Survivors and Their Parents.

ERIC Educational Resources Information Center

Sullivan, Nanci A.; Fulmer, Deborah L.; Zigmond, Naomi

2001-01-01

A study of 8 children (ages 5-7) with Acute Lymphoblastic Leukemia found returning to school was a major milestone and that school serves as the mechanism by which young survivors approach the process of living each day. Attendance obstacles are discussed, along with guidelines for maintaining school as a priority. (Contains references.) (CR)

Talking Therapy Services for Adult Survivors of Childhood Sexual Abuse (CSA) in Scotland: Perspectives of Service Users and Professionals

ERIC Educational Resources Information Center

Chouliara, Zoe; Karatzias, Thanos; Scott-Brien, Georgia; Macdonald, Anne; MacArthur, Juliet; Frazer, Norman

2011-01-01

This study aimed to elicit perceptions and experiences of talking therapy services for CSA survivors and professionals utilizing qualitative interviews and analyzing transcripts using Interpretative Phenomenological Analysis. Participants included 13 adult survivors and 31 professionals in statutory and voluntary services in Scotland. Main themes…

The Affordable Care Act and Expanded Insurance Eligibility Among Nonelderly Adult Cancer Survivors

PubMed Central

Hill, Steven C.; Bernard, Didem; Yabroff, K. Robin

2015-01-01

Background: Cancer survivors may face barriers to accessing health insurance and experience financial hardship because of medical expenditures. We examined potential improvements in access to insurance for cancer survivors through adult Medicaid expansions and premium tax credits in the new insurance marketplaces under the Affordable Care Act (ACA). Methods: Eligibility for Medicaid and premium tax credits was simulated for cancer survivors age 18 to 64 years in the 2008 to 2010 Medical Expenditure Panel Survey using a detailed deterministic model. Financial hardship was determined as: 1) delays or unmet need for medical, prescription, or dental care because of cost or insurance issues and/or 2) family out-of-pocket medical spending that was 20% or more of gross income. Descriptive analyses were stratified by whether the state of residence chose to expand Medicaid by January 2015. All statistical tests were two-sided. Results: Overall, 14.7% of 9.44 million cancer survivors were uninsured, with 18% reporting financial hardship. Under the ACA, 19% overall, 30% of the uninsured, and 39% of those reporting financial hardship would be Medicaid eligible. An additional 10% would be eligible for premium tax credits, with the remainder able to participate in the Marketplace without tax credits. However, 21% of uninsured cancer survivors in states not expanding Medicaid would be ineligible for assistance with coverage. Conclusions: Under the ACA, many of the uninsured and a larger proportion of survivors facing financial hardship will be eligible for Medicaid or premium tax credits in the Marketplaces. ACA implementation will dramatically enhance insurance availability and is likely to reduce financial hardship for vulnerable cancer survivors. PMID:26134034

Impact of chronic disease on emotional distress in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

PubMed

Vuotto, Stefanie C; Krull, Kevin R; Li, Chenghong; Oeffinger, Kevin C; Green, Daniel M; Patel, Sunita K; Srivastava, Deokumar; Stovall, Marilyn; Ness, Kirsten K; Armstrong, Gregory T; Robison, Leslie L; Brinkman, Tara M

2017-02-01

The current study was performed to examine associations between childhood cancer therapies, chronic health conditions, and symptoms of emotional distress in adult survivors of childhood cancer. Participants included 5021 adult survivors of childhood cancer (mean age, 32.0 years [standard deviation, 7.6 years] with a time since diagnosis of 23.2 years [standard deviation, 4.5 years]) who completed measures assessing symptoms of anxiety, depression, and posttraumatic stress. Cardiac, pulmonary, and endocrine conditions were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events (version 4.03; grades 1-4). Structural equation modeling was used to examine hypothesized pathways between cancer treatment exposures, chronic health conditions, and symptoms of emotional distress. Multivariable models were used to estimate relative risks (RRs) for associations between chronic health conditions and distress. Survivors with cardiovascular, endocrine, or pulmonary conditions were found to have a significantly higher prevalence of emotional distress symptoms. In path analyses and multivariable models, significant effects were observed between endocrine (β = .12 [P = .002] and RR, 1.3 [95% confidence interval (95% CI), 1.1-1.6]) and pulmonary (β = .13 [P<.001] and RR, 1.4 [95% CI, 1.1-1.7]) conditions and depression, and between cardiac (β = .13 [P = .001] and RR, 1.5 [95% CI, 1.2-1.8]) and pulmonary (β = .15 [P<.001] and RR, 1.6 [95% CI, 1.3-2.0]) conditions and anxiety. All treatment-related chronic health conditions were found to be associated with posttraumatic stress symptoms (cardiac: β = .09 [P = .004] and RR, 1.3 [95% CI, 1.2-1.5]; endocrine: β = .12 [P<.001] and RR, 1.3 [95% CI, 1.2-1.5]; and pulmonary: β = .13 [P<.001] and RR, 1.4 [95% CI, 1.2-1.6]). Chronic health conditions resulting from childhood cancer therapies contribute to emotional distress in adult survivors. Targeted mental

Psychosexual development and satisfaction with timing of developmental milestones among adult survivors of childhood cancer.

PubMed

Lehmann, Vicky; Keim, Madelaine C; Ferrante, Amanda C; Olshefski, Randal S; Gerhardt, Cynthia A

2018-04-27

To extend the limited research on psychosexual development among childhood cancer survivors, by not only focusing on the prevalence and age of milestone attainment, but also survivors' attitudes toward the timing of reaching such milestones. Adult survivors of childhood cancer (N = 90; M age  = 29.8, SD = 5.2), recruited from a US pediatric institution, completed online surveys indicating whether they had reached 5 milestones of psychosexual development (ie, first kiss, first boy-/girlfriend, first physical intimacy, sexual debut, first time in love), age at attainment, and perceptions about the timing (ie, right time, wished it had happened earlier, wished they had waited). Almost all survivors had reached each milestone (≥90%), except for sexual debut (83.3%). Survivors reported their first kiss as the earliest milestone at age 14.6 (N = 82, 92%) and falling in love as the latest milestone at age 18.8 (N = 80; 90%). This timing did not differ by sex/cancer-specific factors. Most survivors (~60%) felt they reached each milestone at the right time. Compared with US normative data, both male and female survivors were less likely to have experienced their sexual debut and were approximately 1.5 years older at sexual debut. Nevertheless, 59% of survivors felt that this timing was right and 31% wished they had waited longer. This is the first study to demonstrate that although childhood cancer survivors may delay some aspects of psychosexual development, most are satisfied with this timing. Research and clinical practice should emphasize survivors' perceptions/satisfaction toward psychosexual development rather than focusing only on normative milestone attainment. Copyright © 2018 John Wiley & Sons, Ltd.

Childhood Origins of Young Adult Environmental Behavior.

PubMed

Evans, Gary W; Otto, Siegmar; Kaiser, Florian G

2018-05-01

Prospective, longitudinal analyses revealed that over a 12-year period from ages 6 to 18, individuals who grew up with mothers with more proenvironmental attitudes engaged in more proenvironmental behavior as young adults. A similar marginal association was uncovered between mothers' proenvironmental behaviors and the proenvironmental behavior of their young adult offspring. Maternal educational attainment, but not political ideology, was also associated with more proenvironmental behavior as children matured. Moreover, childhood time spent outdoors was positively associated with increased environmentally responsible behavior in young adulthood. Interestingly, one's own childhood proenvironmental behavior and attitude, at least as assessed at age 6, bear little on one's eventual proenvironmental behavior as a young adult. Finally, among this set of childhood factors, maternal education and childhood time spent outdoors were independent predictors of positive changes in environmental behavior from early childhood to young adulthood.

What Do Young Adult Novels Say about HIV/AIDS?

ERIC Educational Resources Information Center

Gross, Melissa

1998-01-01

Using a content analysis approach, this investigation systematically studies messages about HIV/AIDS contained in young adult novels and considers the effects of these messages as an information source for the reader. Young adults and young adult fiction are defined, and coding sheets and bibliographies are appended. (Author/LRW)

Prayer practices among young adults.

PubMed

Nance, Jennifer G; Quinn Griffin, Mary T; McNulty, Sister Rita; Fitzpatrick, Joyce J

2010-01-01

Prayer is the most common complementary and alternative intervention used by most Americans. Yet, little is known about the prayer practices of young adults. In this exploratory study, 4 types of prayer practices of 62 young adults (21-30 years old) are described. The 4 different categories of prayer were: contemplative-meditative, ritualistic, petitionary, and colloquial. Participants most often used colloquial prayer practice, that is, asking God to provide guidance or talking to God in their own words. Recommendations for future research are included.

High prevalence of adenomatous colorectal polyps in young cancer survivors treated with abdominal radiation therapy: results of a prospective trial.

PubMed

Daly, Patricia E; Samiee, Sara; Cino, Maria; Gryfe, Robert; Pollett, Aaron; Ng, Andrea; Constine, Louis S; Hodgson, David C

2017-10-01

Cancer survivors treated with abdominal/pelvic radiation therapy (ART) have increased the risks of colorectal cancer (CRC), although evidence supporting early CRC screening for these patients is lacking. We sought to determine whether there is an elevated prevalence of adenomatous colorectal polyps in young survivors prior to the age when screening would be routinely recommended. We conducted a prospective study of early colonoscopic screening in cancer survivors aged 35-49 who had received ART ≥10 years previously. The planned sample size was based on prior studies reporting a prevalence of adenomatous polyps of approximately 20% among the average-risk population ≥50 years of age, in contrast to ≤10% among those average-risk people aged 40-50 years, for whom screening is not routinely recommended. Colonoscopy was performed in 54 survivors, at a median age of 45 years (range 36-49) and after median interval from radiation treatment of 19 years (10.6-43.5). Forty-nine polyps were detected in 24 patients, with 15 patients (27.8%; 95% CI 17.6% to 40.9%) having potentially precancerous polyps. Fifty-three per cent of polyps were within or at the edge of the prior ART fields. Young survivors treated with ART have a polyp prevalence comparable with the average-risk population aged ≥50 years and substantially higher than previously reported for the average-risk population aged 40-50 years. These findings lend support to the early initiation of screening in these survivors. NCT00982059; results. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Young patients', parents', and survivors' communication preferences in paediatric oncology: results of online focus groups.

PubMed

Zwaanswijk, Marieke; Tates, Kiek; van Dulmen, Sandra; Hoogerbrugge, Peter M; Kamps, Willem A; Bensing, Jozien M

2007-11-09

Guidelines in paediatric oncology encourage health care providers to share relevant information with young patients and parents to enable their active participation in decision making. It is not clear to what extent this mirrors patients' and parents' preferences. This study investigated communication preferences of childhood cancer patients, parents, and survivors of childhood cancer. Communication preferences were examined by means of online focus groups. Seven patients (aged 8-17), 11 parents, and 18 survivors (aged 8-17 at diagnosis) participated. Recruitment took place by consecutive inclusion in two Dutch university oncological wards. Questions concerned preferences regarding interpersonal relationships, information exchange and participation in decision making. Participants expressed detailed and multi-faceted views regarding their needs and preferences in communication in paediatric oncology. They agreed on the importance of several interpersonal and informational aspects of communication, such as honesty, support, and the need to be fully informed. Participants generally preferred a collaborative role in medical decision making. Differences in views were found regarding the desirability of the patient's presence during consultations. Patients differed in their satisfaction with their parents' role as managers of the communication. Young patients' preferences mainly concur with current guidelines of providing them with medical information and enabling their participation in medical decision making. Still, some variation in preferences was found, which faces health care providers with the task of balancing between the sometimes conflicting preferences of young cancer patients and their parents.

Young Adults Deserve the Best: YALSA's Competencies in Action

ERIC Educational Resources Information Center

Flowers, Sarah

2010-01-01

As high school enrollment continues to rise, the need for effective librarianship serving young adults is greater than ever before. "Young Adults Deserve the Best: Competencies for Librarians Serving Youth," developed by Young Adult Library Services Association (YALSA), is a document outlining areas of focus for providing quality library service…

Habitual attention in older and young adults.

PubMed

Jiang, Yuhong V; Koutstaal, Wilma; Twedell, Emily L

2016-12-01

Age-related decline is pervasive in tasks that require explicit learning and memory, but such reduced function is not universally observed in tasks involving incidental learning. It is unknown if habitual attention, involving incidental probabilistic learning, is preserved in older adults. Previous research on habitual attention investigated contextual cuing in young and older adults, yet contextual cuing relies not only on spatial attention but also on context processing. Here we isolated habitual attention from context processing in young and older adults. Using a challenging visual search task in which the probability of finding targets was greater in 1 of 4 visual quadrants in all contexts, we examined the acquisition, persistence, and spatial-reference frame of habitual attention. Although older adults showed slower visual search times and steeper search slopes (more time per additional item in the search display), like young adults they rapidly acquired a strong, persistent search habit toward the high-probability quadrant. In addition, habitual attention was strongly viewer-centered in both young and older adults. The demonstration of preserved viewer-centered habitual attention in older adults suggests that it may be used to counter declines in controlled attention. This, in turn, suggests the importance, for older adults, of maintaining habit-related spatial arrangements. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Young adults, technology, and weight loss: a focus group study.

PubMed

Stephens, Janna; Moscou-Jackson, Gyasi; Allen, Jerilyn K

2015-01-01

Overweight and obesity are a major concern in young adults. Technology has been integrated into many weight loss interventions; however little is known about the use of this technology in young adults. The purpose of this study was to explore through focus group sessions the opinions of young adults on the use of technology for weight loss. A total of 17 young adults, between 18 and 25 years of age, participated in three focus group sessions. Major results indicated that young adults have very little knowledge on the use of Smartphone technology for weight loss but would like to use this type of technology to help them lose weight. Results also indicated that young adults struggle to make healthy food choices and have priorities that outweigh exercise and they need support and guidance to make better decisions. In conclusion, young adults would be open to using Smartphone technology for weight loss but also need feedback and guidance to help make healthy decisions.

Young Adults, Technology, and Weight Loss: A Focus Group Study

PubMed Central

Moscou-Jackson, Gyasi; Allen, Jerilyn K.

2015-01-01

Overweight and obesity are a major concern in young adults. Technology has been integrated into many weight loss interventions; however little is known about the use of this technology in young adults. The purpose of this study was to explore through focus group sessions the opinions of young adults on the use of technology for weight loss. A total of 17 young adults, between 18 and 25 years of age, participated in three focus group sessions. Major results indicated that young adults have very little knowledge on the use of Smartphone technology for weight loss but would like to use this type of technology to help them lose weight. Results also indicated that young adults struggle to make healthy food choices and have priorities that outweigh exercise and they need support and guidance to make better decisions. In conclusion, young adults would be open to using Smartphone technology for weight loss but also need feedback and guidance to help make healthy decisions. PMID:25789170

The situation for female survivors of non-partner sexual violence: A focused enquiry of Somali young women's views, knowledge and opinions.

PubMed

Byrskog, Ulrika; Hussein, Ifrah Hashi; Yusuf, Farah Mohamed; Egal, Jama Ali; Erlandsson, Kerstin

2018-06-01

The aim of the study is to elucidate young women's perceptions of the situation for female survivors of non-partner sexual violence in Somaliland. Young Somali women with diverse backgrounds (n = 25) shared views, knowledge and opinions about non partner sexual violence in focus group discussions held in urban settings. Data was analysed using content analysis. A main category "Bound by culture and community perceptions" with four subcategories comprises the informants' perceptions of non-partner sexual violence among young women in Somaliland. Illuminated is the importance of protecting oneself and the family dignity, a fear of being rejected and mistrusted, how the juridical system exists in the shadow of tradition and potential keys to healthcare support. The study raises awareness of the dilemmas which may be faced by young women subjected to non-partner sexual violence and healthcare providers in the intersection between state and traditional norms. Education is a key when it comes to a young woman considering the use of the services available in a society where traditional problem-solving is relied on parallel to state-based support. State-based functions, communities and families need to work together to provide comprehensive support to young female survivors of non-partner sexual violence in Somaliland. Copyright © 2018 Elsevier B.V. All rights reserved.

The Affordable Care Act and Expanded Insurance Eligibility Among Nonelderly Adult Cancer Survivors.

PubMed

Davidoff, Amy J; Hill, Steven C; Bernard, Didem; Yabroff, K Robin

2015-09-01

Cancer survivors may face barriers to accessing health insurance and experience financial hardship because of medical expenditures. We examined potential improvements in access to insurance for cancer survivors through adult Medicaid expansions and premium tax credits in the new insurance marketplaces under the Affordable Care Act (ACA). Eligibility for Medicaid and premium tax credits was simulated for cancer survivors age 18 to 64 years in the 2008 to 2010 Medical Expenditure Panel Survey using a detailed deterministic model. Financial hardship was determined as: 1) delays or unmet need for medical, prescription, or dental care because of cost or insurance issues and/or 2) family out-of-pocket medical spending that was 20% or more of gross income. Descriptive analyses were stratified by whether the state of residence chose to expand Medicaid by January 2015. All statistical tests were two-sided. Overall, 14.7% of 9.44 million cancer survivors were uninsured, with 18% reporting financial hardship. Under the ACA, 19% overall, 30% of the uninsured, and 39% of those reporting financial hardship would be Medicaid eligible. An additional 10% would be eligible for premium tax credits, with the remainder able to participate in the Marketplace without tax credits. However, 21% of uninsured cancer survivors in states not expanding Medicaid would be ineligible for assistance with coverage. Under the ACA, many of the uninsured and a larger proportion of survivors facing financial hardship will be eligible for Medicaid or premium tax credits in the Marketplaces. ACA implementation will dramatically enhance insurance availability and is likely to reduce financial hardship for vulnerable cancer survivors. © The Author 2015. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

Marriage Matters But How Much? Marital Centrality Among Young Adults.

PubMed

Willoughby, Brian J; Hall, Scott S; Goff, Saige

2015-01-01

Marriage, once a gateway to adulthood, is no longer as widely considered a requirement for achieving adult status. With declining marriage rates and delayed marital transitions, some have wondered whether current young adults have rejected the traditional notion of marriage. Utilizing a sample of 571 young adults, the present study explored how marital centrality (the expected importance to be placed on the marital role relative to other adult roles) functioned as a unique and previously unexplored marital belief among young adults. Results suggested that marriage remains an important role for many young adults. On average, young adults expected that marriage would be more important to their life than parenting, careers, or leisure activities. Marital centrality profiles were found to significantly differ based on both gender and religiosity. Marital centrality was also associated with various outcomes including binge-drinking and sexual activity. Specifically, the more central marriage was expected to be, the less young adults engaged in risk-taking or sexual behaviors.

Exploring Childhood Memories with Adult Survivors of Sexual Abuse: Concrete Reconstruction and Visualization Techniques.

ERIC Educational Resources Information Center

Roland, Catherine B.

1993-01-01

Describes two memory-enhancing techniques, visualization and concrete reconstruction, that have been successful in counseling adult survivors of sexual abuse. Includes suggested implementations, case examples, and implications for incorporating memory techniques into counseling process. Describes various risk factors involved in using these…

Dental care among young adults with intellectual disability

PubMed Central

Kancherla, Vijaya; Van Naarden Braun, Kim; Yeargin-Allsopp, Marshalyn

2015-01-01

Dental care among young adults with intellectual disability (ID) is poorly documented and largely unmet. By using population-based data from the Metropolitan Atlanta Developmental Disabilities Follow-Up Study, we assessed factors associated with at least one or two dental visits per year among young adults with and without ID. Significantly fewer young adults with ID (45%) visited a dentist at least once per year, compared with those without ID (58%). ID severity and the presence of co-occurring developmental disabilities predicted dental care use. Sociodemographics, daily functioning, societal participation, dental services, and dental health factors were examined as predictors of dental care frequency. Our findings can help focus efforts toward improving the frequency of dental care visits among young adults with ID. PMID:23501584

2009 YALSA Fabulous Films & Amazing Audiobooks for Young Adults

ERIC Educational Resources Information Center

School Library Journal, 2009

2009-01-01

The Young Adult Library Services Association (YALSA), a division of the American Library Association (ALA), announced its 2009 annual lists of Fabulous Films for Young Adults and Amazing Audiobooks for Young Adults ages 12 to 18. This article presents the titles that were released in January 2009 during the ALA Midwinter Meeting in Denver,…

Factors Affecting Sentence Severity for Young Adult Offenders.

ERIC Educational Resources Information Center

Greenwood, Peter W.; And Others

This document analyzes the sentencing of young adult defendants in comparison with older adult and younger juvenile offenders, and disputes prior research which held that young adults received more lenient sentencing, perhaps because of the restrictions on disclosing juvenile delinquency histories. The document presents data from samples of young…

Factors Associated with Resilience of Adult Survivors Five Years after the 2008 Sichuan Earthquake in China

PubMed Central

Ni, Cuiping; Chow, Meyrick Chum Ming; Jiang, Xiaolian; Li, Sijian; Pang, Samantha Mei Che

2015-01-01

Given the paucity of quantitative empirical research on survivors’ resilience and its predictors in the context of long-term recovery after disasters, we examined how resilience predictors differed by gender among adult survivors five years after the Sichuan earthquake. This was a cross-sectional survey study of adult survivors (N = 495; aged 18–60) living in reconstructed communities five years into the recovery process after the Wenchuan earthquake. The instruments we used included assessments of sociodemographic characteristics and earthquake exposure level, the Connor-Davidson Resilience Scale, and the Social Support Rating Scale. Support-seeking behaviors emerged as a significant predictor of male survivors’ resilience, while subjective support and marital status were found to be predictors of female survivors’ resilience. Annual household income and chronic disease were predictors for both male and female groups. The findings of this study can be used in devising methods to boost survivors’ resilience by promoting their satisfaction with social support and their ability to obtain effective support. Additionally, the results suggest how to assist survivors who may have relatively poor resilience. PMID:25811775

32 CFR 199.26 - TRICARE Young Adult.

Code of Federal Regulations, 2014 CFR

2014-07-01

...) MISCELLANEOUS CIVILIAN HEALTH AND MEDICAL PROGRAM OF THE UNIFORMED SERVICES (CHAMPUS) § 199.26 TRICARE Young Adult. (a) Establishment. The TRICARE Young Adult (TYA) program offers the medical benefits provided... sponsors who do not otherwise have eligibility for medical coverage under a TRICARE Program at age 21 (23...

32 CFR 199.26 - TRICARE Young Adult.

Code of Federal Regulations, 2013 CFR

2013-07-01

...) MISCELLANEOUS CIVILIAN HEALTH AND MEDICAL PROGRAM OF THE UNIFORMED SERVICES (CHAMPUS) § 199.26 TRICARE Young Adult. (a) Establishment. The TRICARE Young Adult (TYA) program offers the medical benefits provided... sponsors who do not otherwise have eligibility for medical coverage under a TRICARE Program at age 21 (23...

Re-engaging with places: Understanding bio-geo-graphical disruption and flow in adult brain injury survivors.

PubMed

Meijering, Louise; Theunissen, Nicky; Lettinga, Ant T

2018-05-05

Acquired Brain Injury (ABI) is one of the most common causes of disability and death in adults worldwide. After a period of rehabilitation, many ABI survivors still face complex mind/body conditions when they try to take up their former life again. Besides lasting visible impairments such as weakness and loss of body balance, there are often less obvious disabilities such as extreme fatigue, hypersensitivity for stimuli, memory, concentration and attention problems or personality changes. The aim of this paper is to understand how ABI survivors and their significant others renegotiate their engagements with everyday places, using the concepts of bio-geo-graphical disruption and flow. We conducted in-depth interviews and did a place-mapping exercise with 18 adult ABI survivors and their significant others. The data were analysed according to the principles of thematic analysis, with use of Atlas.ti. In the struggles of ABI survivors' relations with place, our findings show diversity in personal experiences and strategies, as well as commonalities at a more general level. First, having access to meaningful places, old and new, and coming to terms with the fact that some places may not be accessible anymore, appeared to be vital in the participants' process of healing. Second, the interplay or, as we call it, reciprocity, between different places can contribute to wellbeing: for instance, the security and continuity found at home may enable ABI survivors to handle a trip to a crowded city centre. Thus, by framing mind/body problems of ABI survivors in terms of a network of meaningful places rather than as a body with lost functions, our study shows how the reciprocity between multiple places has a potentially positive effect on life post-ABI. Copyright © 2018 Elsevier Ltd. All rights reserved.

Value Preferences Predicting Narcissistic Personality Traits in Young Adults

ERIC Educational Resources Information Center

Gungor, Ibrahim Halil; Eksi, Halil; Aricak, Osman Tolga

2012-01-01

This study aimed at showing how the value preferences of young adults could predict the narcissistic characteristics of young adults according to structural equation modeling. 133 female (59.6%) and 90 male (40.4%), total 223 young adults participated the study (average age: 25.66, ranging from 20 to 38). Ratio group sampling method was used while…

Executive Function and Internalizing Symptoms in Adolescents and Young Adults With Congenital Heart Disease: The Role of Coping.

PubMed

Jackson, Jamie L; Gerardo, Gina M; Monti, Jennifer D; Schofield, Kyle A; Vannatta, Kathryn

2018-01-10

Executive functioning deficits have been documented among congenital heart disease (CHD) survivors and may contribute to emotional distress. Little research has investigated the role of coping in this association. This study examined the role of coping in accounting for the association between self-reported executive function problems and internalizing symptoms among adolescents and emerging adults (AEAs), as well as young adults (YAs) with CHD. Participants included 74 AEA ( M age  = 19.32  ±  3.47 years, range 15-25 years) and 98 YA CHD survivors ( M age  = 32.00  ±  3.69 years, range 26-39 years), recruited from pediatric and adult outpatient cardiology clinics. Participants completed self-report measures of executive function problems, coping (primary control, secondary control, and disengagement coping), and internalizing symptoms. Lesion severity classification and functional impairment due to symptoms of heart failure were determined from medical chart review. Significant problems in executive function were reported by 5% of AEA and 13% of YA. Coping was not associated with executive function problems or internalizing symptoms for AEA. However, among YA, less use of adaptive coping strategies and more maladaptive coping responses was associated with both more executive function problems and internalizing symptoms. An indirect effect of executive function problems on internalizing symptoms via secondary control coping emerged for YA. Executive function problems may disrupt the ability to use important adaptive coping skills, such as cognitive reappraisal, positive thinking, and acceptance, thereby resulting in greater emotional distress among YA CHD survivors. © The Author(s) 2018. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Systematic Review and Meta-Analysis of Objective and Subjective Quality of Life among Pediatric, Adolescent, and Young Adult Bone Tumor Survivors

PubMed Central

Stokke, Jamie; Sung, Lillian; Gupta, Abha; Lindberg, Antoinette; Rosenberg, Abby R.

2015-01-01

Background Pediatric, adolescent and young adult (AYA) survivors of bone sarcomas are at risk for poor quality of life (QOL). We conducted a systematic review and meta-analysis to summarize the literature describing QOL in this population and differences in QOL based on local control procedures. Procedure Included studies described ≥5 patients <25 years-old who had completed local control treatment for bone sarcoma, defined QOL as a main outcome, and measured it with a validated instrument. Data extraction and quality assessments were conducted with standardized tools. Meta-analyses compared QOL based on surgical procedure (limb-sparing versus amputation) and were stratified by assessment type (objective physical function, clinician-assessed disability, patient-reported disability and patient-reported QOL). Effect sizes were reported as the Standard Mean Difference when multiple instruments were used within a comparison and Weighted Mean Difference otherwise. All were weighted by inverse variance and modeled with random effects. Results Twenty-two of 452 unique manuscripts were included in qualitative syntheses, 8 of which were included in meta-analyses. Manuscripts were heterogeneous with respect to included patient populations (age, tumor type, time since treatment) and QOL instruments. Prospective studies suggested that QOL improves over time, and that female sex and older age at diagnosis are associated with poor QOL. Meta-analyses showed no differences in outcomes between patients who underwent limb-sparing versus amputation for local control. Conclusion QOL studies among children and AYAs with bone sarcoma are remarkably diverse, making it difficult to detect trends in patient outcomes. Future research should focus on standardized QOL instruments and interpretations. PMID:25820683

Multicultural Literature for Children and Young Adults

ERIC Educational Resources Information Center

Bista, Krishna

2012-01-01

In the selection of multicultural literature for children and young adults, educators and researchers focus on two main controversial issues--authority and authenticity--that the authors portray in their writing. What type of author can accurately portray realistic pictures of minority cultures in multicultural literature for young adults? Must it…

Towards an Ontology-driven Framework to Enable Development of Personalized mHealth Solutions for Cancer Survivors' Engagement in Healthy Living.

PubMed

Myneni, Sahiti; Amith, Muhammad; Geng, Yimin; Tao, Cui

2015-01-01

Adolescent and Young Adult (AYA) cancer survivors manage an array of health-related issues. Survivorship Care Plans (SCPs) have the potential to empower these young survivors by providing information regarding treatment summary, late-effects of cancer therapies, healthy lifestyle guidance, coping with work-life-health balance, and follow-up care. However, current mHealth infrastructure used to deliver SCPs has been limited in terms of flexibility, engagement, and reusability. The objective of this study is to develop an ontology-driven survivor engagement framework to facilitate rapid development of mobile apps that are targeted, extensible, and engaging. The major components include ontology models, patient engagement features, and behavioral intervention technologies. We apply the proposed framework to characterize individual building blocks ("survivor digilegos"), which form the basis for mHealth tools that address user needs across the cancer care continuum. Results indicate that the framework (a) allows identification of AYA survivorship components, (b) facilitates infusion of engagement elements, and (c) integrates behavior change constructs into the design architecture of survivorship applications. Implications for design of patient-engaging chronic disease management solutions are discussed.

Quality of life in adolescent and young adult cancer patients: a systematic review of the literature

PubMed Central

Quinn, Gwendolyn P; Gonçalves, Vânia; Sehovic, Ivana; Bowman, Meghan L; Reed, Damon R

2015-01-01

Introduction Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment. Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations. Methods A systematic review of the literature was conducted using combinations of these phrases or keywords: “adolescent and young adult or AYA” AND “health outcomes OR quality of life OR psychology” AND “neoplasm OR cancer OR oncology”. A total of 35 articles were included in this review. Studies were classified into two categories: AYA perceptions and stakeholder perceptions. Results AYA cancer survivors were more likely to have “worse” or impaired QoL compared with the general population, regardless of other demographic factors. AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services. Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience. Conclusion The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs. PMID

Psychological resilience in young and older adults.

PubMed

Gooding, P A; Hurst, A; Johnson, J; Tarrier, N

2012-03-01

The goal of the current study was to investigate psychological resilience in the older adults (>64 years) compared with that of the young ones (<26 years). Questionnaire measures of depression, hopelessness, general health and resilience were administered to the participants. The resilience measure comprised three sub-scales of social support, emotional regulation and problem solving. The older adults were the more resilient group especially with respect to emotional regulation ability and problem solving. The young ones had more resilience related to social support. Poor perceptions of general health and low energy levels predicted low levels of resilience regardless of age. Low hopelessness scores also predicted greater resilience in both groups. Experiencing higher levels of mental illness and physical dysfunction predicted high resilience scores especially for the social support resilience scale in the older adults. The negative effects of depression on resilience related to emotional regulation were countered by low hopelessness but only in the young adults. These results highlight the importance of maintaining resilience-related coping skills in both young and older adults but indicate that different psychological processes underlie resilience across the lifespan. Copyright © 2011 John Wiley & Sons, Ltd.

Reproductive Health-Care Utilization of Young Adults Insured as Dependents.

PubMed

Andrasfay, Theresa

2018-05-01

The common practice of sending an explanation of benefits to policyholders may inadvertently disclose sensitive services to the parents of dependents, making confidentiality a potential barrier to reproductive health care. This study compares the reproductive health-care utilization of young adult dependents and young adult policyholders using nationally representative data collected after full implementation of the Affordable Care Act. Data from 2,108 young adults aged 18-25 years in the 2015 National Health Interview Survey were analyzed. Logistic regressions predicted utilization of two preventive services (general doctor visit and flu vaccination) and four reproductive health services (HIV testing, obstetrician/gynecologist visit, hormonal contraceptive use, and Pap testing) from the insurance type of the young adult (dependent, privately insured policyholder, or Medicaid). In unadjusted analyses, young adult dependents had lower utilization of HIV tests than their peers who were privately insured or Medicaid policyholders. Young women dependents had lower utilization of Pap tests than young women on Medicaid. Once controls were included, young adult dependents did not have significantly lower odds of obtaining reproductive health care than privately insured policyholders. Dependent young men still had marginally lower odds of ever having an HIV test (adjusted odds ratio = .65, p = .08) and dependent young women still had marginally lower odds of ever having a Pap test (adjusted odds ratio = .58, p = .06) than comparable Medicaid policyholders. Despite confidentiality concerns, young adults insured as dependents have utilization of several reproductive health services similar to that of comparable young adult policyholders. Copyright © 2017 The Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Perceived Stress, Parent-Adolescent/Young Adult Communication, and Family Resilience Among Adolescents/Young Adults Who Have a Parent With Cancer in Taiwan: A Longitudinal Study.

PubMed

Chen, Chin-Mi; Du, Bao-Feng; Ho, Ching-Liang; Ou, Wei-Jen; Chang, Yue-Cune; Chen, Wei-Ching

Family resilience helps family members successfully overcome adversity, for example, chronic disease or unpleasant situations. However, few studies have identified correlates of family resilience among adolescents/young adults having a parent with cancer. This longitudinal study explored (1) relationships among family resilience, adolescents' perceived stress, and parent-adolescent/young adult communication; (2) trends in family resilience with data collection time; and (3) differences in parent-adolescent/young adult communication by parent gender (ie, father or mother). Participants were teenagers and young adults (12-25 years) with a parent who had cancer. Data were collected using structured questionnaires at 3 times for 4 to 5 months, with 2 months between each collection. Of 96 adolescent/young adult participants enrolled at T1, only 32 completed all measurements at T3. We found that (1) family resilience was negatively associated with adolescents' perceived stress (B = -0.35) and positively associated with adolescent/young adult communication with both the father (B = 0.58) and the mother (B = 0.36), (2) the degree of family resilience at T3 was significantly lower than at T1 (B = -4.79), and (3) at all 3 data collection times, the degree of adolescent/young adult communication was higher with mothers than with fathers, whether the mother had cancer or did not have cancer. Family resilience was positively associated with parent-adolescent/young adult communication and negatively related to perceived stress. Family resilience tended to decline with longer parental survival since cancer diagnosis. We suggest nursing interventions to reduce adolescent/young adult stress and develop optimal parent-adolescent/young adult communication to enhance family resilience.

Young and Older Adults' Reading of Distracters

ERIC Educational Resources Information Center

Kemper, Susan; Mcdowd, Joan; Metcalf, Kim; Liu, Chiung-Ju

2008-01-01

Eye-tracking technology was employed to examine young and older adults' performance in the reading with distraction paradigm. Distracters of 1, 2, and 4 words that formed meaningful phrases were used. There were marked age differences in fixation patterns. Young adults' fixations to the distracters and targets increased with distracter length.…

Counseling Preferences of Young Adults with Cancer

ERIC Educational Resources Information Center

Taylor, Jessica Z.; Kashubeck-West, Susan

2017-01-01

This study examined preferences for counseling topics to discuss in individual, group, and family counseling among young adults with cancer, as well as their ranked preferences for attending individual, group, and family counseling. A sample of 320 young adults with cancer (18-39 years old) completed an online survey containing items relevant to…

Spanish normative studies in young adults (NEURONORMA young adults project): norms for verbal fluency tests.

PubMed

Casals-Coll, M; Sánchez-Benavides, G; Quintana, M; Manero, R M; Rognoni, T; Calvo, L; Palomo, R; Aranciva, F; Tamayo, F; Peña-Casanova, J

2013-01-01

Lexical fluency tests are frequently used in clinical practice to assess language and executive function. As part of the Spanish normative studies project in young adults (NEURONORMA young adults project), we provide age- and education-adjusted normative data for 3 semantic fluency tasks (animals, fruits and vegetables, and kitchen tools), three formal lexical fluency tasks (words beginning with P, M and R), three excluded-letter fluency tasks (words excluding A, E and S) and a verb fluency task. The sample consisted of 179 participants who are cognitively normal and range in age from 18 to 49 years. Tables are provided to convert raw scores to scaled scores. Age- and education-adjusted scores are provided by applying linear regression techniques. The results show that education impacted most of the verbal fluency test scores, with no effects related to age and only minimal effects related to sex. The norms obtained will be extremely useful in the clinical evaluation of young Spanish adults. Copyright © 2011 Sociedad Española de Neurología. Published by Elsevier Espana. All rights reserved.

Quality of life in young adults with cerebral palsy.

PubMed

Jiang, Benran; Walstab, Janet; Reid, Susan M; Davis, Elise; Reddihough, Dinah

2016-10-01

Little is known about the quality of life (QOL) of young adults with cerebral palsy. This cross-sectional analysis compares the QOL of a cohort of young Australian adults with CP with a cohort of able-bodied peers to explore the relationship between QOL and impairments, functioning, and social participation. Young adults identified from the Victorian Cerebral Palsy Register were invited to complete a survey about QOL, gross motor function, independence in self-care, and social participation. QOL was assessed with the Quality of Life Instrument for Young Adults (YAQOL). A general population sample of young North American adults, who had completed the YAQOL was selected for comparison. Surveys and consent forms were completed by 335 young adults or their proxies, an overall participation rate of 63% of those located. The mean age of the study participants was 24.7 [s.d = 2.8] years; 51% were male and 49% female. Two hundred and seven (62%) of the 335 participants self-reported their QOL. When compared with the general population sample, self-reporting participants had similar QOL scores for the social relationship and environmental context domains (p > 0.05), while QOL scores were lower for the physical health, psychological well-being, and role function domains (p < 0.001). There was no association between psychological well-being and variables related to body structure and gross motor function in young adults with CP. Contrary to the assumption that young adults with severe CP have low psychosocial well-being, it is apparent that these individuals can have good psychosocial well-being regardless of their disability. Copyright © 2016 Elsevier Inc. All rights reserved.

Web-based cognitive rehabilitation for survivors of adult cancer: A randomised controlled trial.

PubMed

Mihuta, Mary E; Green, Heather J; Shum, David H K

2018-04-01

Cognitive dysfunction associated with cancer is frequently reported and can reduce quality of life. This study evaluated a Web-based cognitive rehabilitation therapy program (eReCog) in cancer survivors compared with a waitlist control group. Adult cancer survivors with self-reported cognitive symptoms who had completed primary treatment at least 6 months prior were recruited. Participants completed telephone screening and were randomly allocated to the 4-week online intervention or waitlist. Primary outcome was perceived cognitive impairment assessed with the Functional Assessment of Cancer Therapy-Cognitive Function version 3. Secondary outcomes were additional measures of subjective cognitive functioning, objective cognitive functioning, and psychosocial variables. Seventy-six women were allocated to the intervention (n = 40) or waitlist (n = 36). A significant interaction was found on the instrumental activities of daily living measure of self-reported prospective memory whereby the intervention group reported a greater reduction in prospective memory failures than the waitlist group. Interaction trends were noted on perceived cognitive impairments (P = .089) and executive functioning (P = .074). No significant interactions were observed on other measures of objective cognitive functioning or psychosocial variables. The Web-based intervention shows promise for improving self-reported cognitive functioning in adult cancer survivors. Further research is warranted to better understand the mechanisms by which the intervention might contribute to improved self-reported cognition. Copyright © 2017 John Wiley & Sons, Ltd.

Isolated Systolic Hypertension in Young and Middle-Aged Adults.

PubMed

Yano, Yuichiro; Lloyd-Jones, Donald M

2016-11-01

Young and middle-aged adults (ages ≤50 years) are increasingly prone to stroke, kidney disease, and worsening cardiovascular disease (CVD) mortality. An alarming increase in the prevalence of high blood pressure (BP) may underlie the adverse trend. However, there is often uncertainty in BP management for young and middle-aged adults. Isolated systolic hypertension (ISH) is one such example. Whether ISH in young and middle-aged adults represents "pseudo" or "spurious" hypertension is still being debated. ISH in young and middle-aged adults is a heterogeneous entity; some individuals appear to have increased stroke volume, whereas others have stiffened aortae, or both. One size does not seem to fit all in the clinical management of ISH in young and middle-aged adults. Rather than treating ISH as a monolithic condition, detailed phenotyping of ISH based on (patho)physiology and in the context of individual global cardiovascular risks would seem to be most useful to assess an individual expected net benefit from therapy. This review provides an overview of the current understanding of ISH in young and middle-aged adults, including the prevalence, pathophysiology, and treatment.

Psychological Symptoms, Social Outcomes, Socioeconomic Attainment, and Health Behaviors Among Survivors of Childhood Cancer: Current State of the Literature.

PubMed

Brinkman, Tara M; Recklitis, Christopher J; Michel, Gisela; Grootenhuis, Martha A; Klosky, James L

2018-06-06

The diagnosis, treatment, and medical late effects of childhood cancer may alter the psychosocial trajectory of survivors across their life course. This review of the literature focuses on mental health symptoms, achievement of social milestones, socioeconomic attainment, and risky health behaviors in survivors of childhood cancer. Results suggest that although most survivors are psychologically well adjusted, survivors are at risk for anxiety and depression compared with siblings. Although the absolute risk of suicide ideation and post-traumatic stress symptoms is low, adult survivors are at increased risk compared with controls. Moreover, young adult survivors are at risk for delayed psychosexual development, lower rates of marriage or cohabitation, and nonindependent living. Survivors' socioeconomic attainment also is reduced, with fewer survivors graduating college and gaining full-time employment. Despite risk for late health-related complications, survivors of childhood cancer generally engage in risky health behaviors at rates similar to or only slightly lower than siblings and peers. CNS tumors and CNS-directed therapies are salient risk factors for poor psychosocial outcomes. In addition, physical health morbidities resulting from cancer-directed therapies are associated with worse psychosocial functioning. Several studies support the effectiveness of cognitive and behavioral interventions to treat psychological symptoms as well as to modify health behaviors. Additional randomized controlled trials are needed to evaluate the efficacy and long-term outcomes of intervention efforts. Future research should focus on the identification of potential genetic predispositions related to psychosocial outcomes to provide opportunities for preventive interventions among survivors of childhood cancer.

Social Well-Being Among Adolescents and Young Adults With Cancer: A Systematic Review

PubMed Central

Warner, Echo L.; Kent, Erin E.; Trevino, Kelly M.; Parsons, Helen M.; Zebrack, Brad J.; Kirchhoff, Anne C.

2016-01-01

BACKGROUND A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. METHODS A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain. RESULTS AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. CONCLUSIONS Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks. PMID:26848713

Radiation, Atherosclerotic Risk Factors, and Stroke Risk in Survivors of Pediatric Cancer: A Report From the Childhood Cancer Survivor Study

DOE Office of Scientific and Technical Information (OSTI.GOV)

Mueller, Sabine, E-mail: muellers@neuropeds.ucsf.edu; Fullerton, Heather J.; Stratton, Kayla

Purpose: To test the hypotheses that (1) the increased risk of stroke conferred by childhood cranial radiation therapy (CRT) persists into adulthood; and (2) atherosclerotic risk factors further increase the stroke risk in cancer survivors. Methods and Materials: The Childhood Cancer Survivor Study is a multi-institutional retrospective cohort study of 14,358 5-year survivors of childhood cancer and 4023 randomly selected sibling controls with longitudinal follow-up. Age-adjusted incidence rates of self-reported late-occurring (≥5 years after diagnosis) first stroke were calculated. Multivariable Cox proportional hazards models were used to identify independent stroke predictors. Results: During a mean follow-up of 23.3 years, 292more » survivors reported a late-occurring stroke. The age-adjusted stroke rate per 100,000 person-years was 77 (95% confidence interval [CI] 62-96), compared with 9.3 (95% CI 4-23) for siblings. Treatment with CRT increased stroke risk in a dose-dependent manner: hazard ratio 5.9 (95% CI 3.5-9.9) for 30-49 Gy CRT and 11.0 (7.4-17.0) for 50+ Gy CRT. The cumulative stroke incidence in survivors treated with 50+ Gy CRT was 1.1% (95% CI 0.4-1.8%) at 10 years after diagnosis and 12% (95% CI 8.9-15.0%) at 30 years. Hypertension increased stroke hazard by 4-fold (95% CI 2.8-5.5) and in black survivors by 16-fold (95% CI 6.9-36.6). Conclusion: Young adult pediatric cancer survivors have an increased stroke risk that is associated with CRT in a dose-dependent manner. Atherosclerotic risk factors enhanced this risk and should be treated aggressively.« less

"Treating adult survivors of childhood emotional abuse and neglect: A new framework": Correction to Grossman et al. (2017).

PubMed

2017-01-01

Reports an error in "Treating adult survivors of childhood emotional abuse and neglect: A new framework" by Frances K. Grossman, Joseph Spinazzola, Marla Zucker and Elizabeth Hopper ( American Journal of Orthopsychiatry , 2017, Vol 87[1], 86-93). In the article, in the second sentence of the third paragraph of the "The Empirical Base for CBP" section, "construction of a life narrative" should have read "construction of a trauma narrative." The full corrected sentence follows: "Therefore, the trauma treatment component traditionally focused upon construction of a trauma narrative must be expanded to address the effects of trauma on our clients' entire life narratives, including their development of a sense of self and social identity." (The following abstract of the original article appeared in record 2017-01147-002.) This article provides the outline of a new framework for treating adult survivors of childhood emotional abuse and neglect. Component-based psychotherapy (CBP) is an evidence-informed model that bridges, synthesizes, and expands upon several existing schools, or theories, of treatment for adult survivors of traumatic stress. These include approaches to therapy that stem from more classic traditions in psychology, such as psychoanalysis, to more modern approaches including those informed by feminist thought. Moreover, CBP places particular emphasis on integration of key concepts from evidence-based treatment models developed in the past few decades predicated upon thinking and research on the effects of traumatic stress and processes of recovery for survivors. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Hanging by a thread: exploring the features of nonresponse in an online young adult cancer survivorship support community.

PubMed

Crook, Brittani; Glowacki, Elizabeth M; Love, Brad; Jones, Barbara L; Macpherson, Catherine Fiona; Johnson, Rebecca H

2016-02-01

Finding helpful information can be challenging for young adult (YA) cancer survivors; thus, it is critical to examine features of online posts that successfully solicit responses and assess how these differ from posts that do not solicit responses. Using posts from an online YA cancer support community, we analyzed initial posts that did and did not receive replies utilizing Linguistic Inquiry Word Count (LIWC). Independent t tests revealed significant differences between the sets of posts regarding content, emotions, cognitive processes, pronoun use, and linguistic complexity. More specifically, posts with replies contained fewer words per sentence, had more first-person pronouns, had more expressions of negative emotions, and contained more present tense and past tense verbs. The findings of this study can help improve peer-exchanged support in online communities so that YA cancer survivors can more effectively receive digital support. This research also provides communication researchers, health educators, and care providers a lens for understanding the YA cancer survivorship experience. This research helps survivors be strategic in how they use online forums to seek advice and support. More complete understanding of what kinds of prompts produce responses allows those in need to craft messages in ways that are most likely to elicit support from fellow cancer survivors. These implications for message design extend beyond blogging and can be applicable for text message and email exchanges between cancer patients and their care providers.

Young adult's attachment style as a partial mediator between maternal functioning and young adult offsprings' functioning.

PubMed

Ruiz, Sarah K; Harris, Susan J; Martinez, Pedro; Gold, Philip M; Klimes-Dougan, Bonnie

2018-05-01

The quality of our early attachment relationships with primary caregivers is carried forward to new developmental domains, including interpersonal contexts in adulthood. One of the factors that can disrupt early attachment is maternal depression, which may be associated with less responsive care and may impede the development of a secure attachment. Moreover, this disruption in secure attachment may act as a mechanism by which offspring of depressed mothers are more likely to experience their own psychopathology. In this study we predicted that attachment anxiety and avoidance would mediate the relationship between maternal depression diagnosis and functional impairment predicting young adult offspring's functional impairment. This study utilized longitudinal data from 98 families with clinically diagnosed depressed and well mothers, and two of their young adult children, an older and younger sibling (N = 123, Female = 75, Mage = 22.09, SD = 2.57). Mother's and young adult children's functioning was based on clinical ratings on the Global Assessment Scale. Attachment was based on the young adult's self-report on the Experiences in Close Relationships. Results indicate that maternal diagnosis and functional impairment predicted offspring's functional impairment. This relationship was partially mediated through offspring's attachment anxiety, but not attachment avoidance. The mediator and outcome variable were measured concurrently, thus causal implications are limited. Our study provides critical evidence that early experiences with depressed mothers may have influence into young adulthood in typical and atypical domains of development. This work extends our understanding of the impact of early experiences in long-term development, and may have treatment implications for intervening on both maternal and romantic relationships to improve attachment. Copyright © 2018 Elsevier B.V. All rights reserved.

Barriers and Facilitators of Transition from Pediatric to Adult Long-Term Follow-Up Care in Childhood Cancer Survivors.

PubMed

Rosenberg-Yunger, Zahava R S; Klassen, Anne F; Amin, Leila; Granek, Leeat; D'Agostino, Norma M; Boydell, Katherine M; Greenberg, Mark; Barr, Ronald D; Nathan, Paul C

2013-09-01

Despite the risk for late effects in adult survivors of cancer in childhood or adolescence, many survivors fail to transition from pediatric to adult long-term follow-up (LTFU) care. The purpose of this study was to identify the barriers and facilitators of transition from pediatric to adult LTFU care. In this qualitative study, 38 Canadian survivors of cancer in childhood or adolescence, currently aged 15-26 years, were interviewed using semi-structured, open-ended questions. Participants belonged to one of four groups: pre-transition (n=10), successful transition (n=11), failed to transition (n=7), and transitioned to an adult center but then dropped out of adult care (n=10). A constructivist grounded theory approach was used to analyze the interview data. This approach consisted of coding transcripts line by line to develop categories and using constant comparison to examine relationships within and across codes and categories. Interviewing continued until saturation was reached. Three interrelated themes were identified that affected the transition process: micro-level patient factors (e.g., due diligence, anxiety), meso-level support factors (e.g., family, friends), and macro-level system factors (e.g., appointments, communication, healthcare providers). Factors could act as facilitators to transition (e.g., family support), barriers to transition (e.g., difficulty booking appointments), or as both a barrier and a facilitator (e.g., anxiety). This study illustrates the interaction between multiple factors that facilitate and/or prevent transition from pediatric to adult LTFU cancer care. A number of recommendations are presented to address potential macro-level system barriers to successful transition.

Adult self-image and well-being after testicular cancer: The role of agency and meaning.

PubMed

Ryan, Sean J; Hoyt, Michael A

2018-08-01

Cancer during young adulthood can limit the extent to which one adopts an adult self-image. However, the relationship of adult self-image to cancer-related adjustment remains unexplored. The current study examines relationships of adult self-image and social/emotional well-being and job-related problems in young testicular cancer survivors. Factors thought to facilitate future-oriented goals (i.e. agency and meaning) are examined as intermediary processes. Testicular cancer survivors (N = 171) between the ages of 18 and 29 completed questionnaire measures of adult self-image, agency, sense of meaning and indicators of adjustment. Social and emotional well-being were measured by the Functional Assessment of Cancer Therapy-General. Job problems were assessed using the EORTC's testicular cancer supplement (EORTC QLQ-TC26). Path model results revealed direct associations of survivors' adult self-image with social (β = .20, p < .05), but not emotional well-being (β = .14, p < .01). Both agency and meaning mediated the relationship of adult self-image and well-being indicators. Finally, the relationship between adult self-image and job problems was only significant for those who were employed or in school (β = -.19, p < .05). Assessment of adult self-image might be useful in identifying risk for poor adjustment. Interventions that target agency and meaning might facilitate developmental goals.

The New Zealand 1986 very low birth weight cohort as young adults: mapping the road ahead.

PubMed

Darlow, Brian A; Horwood, L John; Woodward, Lianne J; Elliott, John M; Troughton, Richard W; Elder, Mark J; Epton, Michael J; Stanton, Josh D; Swanney, Maureen P; Keenan, Ross; Melzer, Tracy R; McKelvey, Victoria A; Levin, Karelia; Meeks, Margaret G; Espiner, Eric A; Cameron, Vicky A; Martin, Julia

2015-08-05

Very low birth weight (less than 1500 g) is associated with increased morbidity and costs of health care in childhood. Emerging evidence suggests these infants face a range of health and social problems as young adults. We studied all New Zealand very low birth weight infants born in 1986 (when 58% were exposed to antenatal corticosteroids) in infancy, with later follow-up at 7 to 8 years and 23 to 24 years. We now aim to assess the cohort at 26-28 years compared with controls. The case sample will comprise a minimum of 250 members of the 1986 New Zealand national very low birth weight cohort (77% of survivors). Outcomes will be compared with a control group of 100 young adults born at term in 1986. Following written informed consent, participants will travel to Christchurch for 2 days of assessments undertaken by experienced staff. Medical assessments include growth measures, vision, respiratory function, blood pressure and echocardiogram, renal function, dental examination and blood tests. Cognitive and neuropsychological functioning will be assessed with standard tests, and mental health and social functioning by participant interview. A telephone interview will be conducted with a parent or significant other person nominated by the respondent to gain a further perspective on the young person's health and functioning. All those born at less than 28 weeks' gestation, plus a random subset of the cohort to a total of 150 cases and 50 controls, will be offered cranial magnetic-resonance imaging. Statistical analysis will examine comparison with controls and long-term trajectories for the very low birth weight cohort. The research will provide crucial New Zealand data on the young adult outcomes for very low birth weight infants and address gaps in the international literature, particularly regarding cardiovascular, respiratory, visual and neurocognitive outcomes. These data will inform future neonatal care, provide evidence-based guidelines for care of preterm

Fertility information needs and concerns post-treatment contribute to lowered quality of life among young adult female cancer survivors.

PubMed

Benedict, Catherine; Thom, Bridgette; Friedman, Danielle N; Pottenger, Elaine; Raghunathan, Nirupa; Kelvin, Joanne F

2018-07-01

Cancer treatment may lead to premature menopause and infertility. Young adult female cancer survivors (YAFCS) are often concerned about their fertility and future family-building options, but research is limited on how concerns may affect more general quality of life (QOL) domains. This study examined how fertility factors relate to QOL among YAFCS who received gonadotoxic therapy. A national sample of YAFCS completed an online, anonymous survey. The survey included investigator-designed questions about perceived fertility information needs (five items; Cronbach's α = .83) and general QOL (four items; α = .89), the Reproductive Concerns after Cancer Scale (RCACS) and Decisional Conflict Scale (DCS). Analyses included Pearson's correlation, t tests, and stepwise regression. Participants (N = 314) were an average of 30 years old (SD = 4.1) and 5 years (SD = 5.4) post-treatment; 31% reported being infertile and 19% had undergone fertility preservation (FP). Overall, QOL was relatively high (M = 7.3, SD = 1.9, range 0-10) and did not vary by fertility status (t[272] = .743, p = .46), prior FP (t[273] = .53, p = .55) or sociodemographic/clinical factors (p's > .05) except socioeconomic indicators (p's < .05).In separate models, greater unmet fertility information needs (β = - .19, p = .004) and, among fertile women, greater reproductive concerns (β = - .26, p = .001) related to lower QOL. Among fertile women without prior FP, greater decisional distress about future FP related to lower QOL (β = - .19, p = .03). These preliminary findings suggest that unaddressed fertility information needs, concerns, and decision distress may affect general QOL among post-treatment YAFCS who hope to have children in the future. Future work should identify ways to optimally incorporate fertility counseling and support resources into survivorship care programs, including referrals to reproductive

Reducing Underage and Young Adult Drinking

PubMed Central

Windle, Michael; Zucker, Robert A.

2010-01-01

Forty years ago, when the National Institute on Alcohol Abuse and Alcoholism (NIAAA) was founded, alcoholism was considered an adult disease driven principally by physiological determinants. As NIAAA expanded its research portfolio, new data and insights were obtained that led to an increased focus on underage and young adult drinking. Fostered by interdisciplinary research, etiologic models were developed that recognized the multiplicity of relevant genetic and environmental influences. This shift in conceptualizing alcohol use disorders also was based on findings from large-scale, national studies indicating that late adolescence and early young adulthood were peak periods for the development of alcohol dependence and that early initiation of alcohol use (i.e., before age 15) was associated with a fourfold increase in the probability of subsequently developing alcohol dependence. In recent years, developmental studies and models of the initiation, escalation, and adverse consequences of underage and early young adult drinking have helped us to understand how alcohol use may influence, and be influenced by, developmental transitions or turning points. Major risk and protective factors are being identified and integrated into screening, prevention, and treatment programs to optimize interventions designed to reduce drinking problems among adolescents and young adults. In addition, regulatory policies, such as the minimum drinking age and zero-tolerance laws, are being implemented and evaluated for their impact on public health. PMID:23579934

A Mindfulness-Based Intervention for Adolescents and Young Adults After Cancer Treatment: Effects on Quality of Life, Emotional Distress, and Cognitive Vulnerability.

PubMed

Van der Gucht, Katleen; Takano, Keisuke; Labarque, Veerle; Vandenabeele, Karen; Nolf, Nathalie; Kuylen, Sanne; Cosyns, Veerle; Van Broeck, Nady; Kuppens, Peter; Raes, Filip

2017-06-01

Adolescent and young adult cancer (AYAC) survivors show an elevated risk of distress. Targeted psychosocial interventions for this distinct population are needed. This study examined the potential efficacy of a mindfulness-based intervention (MBI) to alleviate emotional distress and improve quality of life (QoL) in AYAC survivors. Participants were 16 AYAC survivors, aged 14-24, who had completed acute medical treatment. A two-baseline (8 and 1 week before the intervention), post- (1 week after the intervention) and 3 months follow-up within-subjects design was used. Each participant completed two baseline assessments, followed by an 8-week MBI. The primary outcome variables were emotional distress and QoL. Secondary outcomes were cognitive vulnerability factors and mindfulness skills. Multilevel modeling showed (1) a significant reduction in emotional distress and improvement in QoL at 3 months of follow-up, (2) a significant reduction in negative attitudes toward self (i.e., a cognitive vulnerability factor), and (3) a significant improvement in mindfulness skills. MBI is a promising approach that is used to treat emotional distress and to improve QoL in AYAC survivors. Further research using randomized controlled trials is needed to generalize these findings. Trial registration information: www.trialregister.nl ; NTR4358.

Financial Literacy of Young Adults: The Importance of Parental Socialization

ERIC Educational Resources Information Center

Jorgensen, Bryce L.; Savla, Jyoti

2010-01-01

This article tests a conceptual model of perceived parental influence on the financial literacy of young adults. Structural equation modeling was used to test whether (a) parents were perceived to influence young adults' financial knowledge, attitudes, and behaviors and (b) the degree to which young adults' financial attitudes mediated financial…

The health status of young adults in the United States.

PubMed

Park, M Jane; Paul Mulye, Tina; Adams, Sally H; Brindis, Claire D; Irwin, Charles E

2006-09-01

The health issues of young adulthood have received relatively little attention compared with those of adolescence, although the critical issues in young adulthood parallel those of adolescence. Young adults often fare worse than adolescents on health indicators, with many measures of negative outcomes--including rates of injury, homicide, and substance use--peaking during the young adult years. The contextual factors shaping health status and access to care in young adulthood differ significantly from the context of adolescence. This article synthesizes national data to present a health profile of young adults, reviewing social indicators that describe the context of young adulthood and presenting measures of health status. We examine mortality, morbidity, risky behaviors, and health care access and utilization, identifying the most significant gender and racial/ethnic disparities. The article also identifies limitations of existing data and offers suggestions for future research and health monitoring in this area. We conclude with a discussion of current efforts to address the health and well-being of young adults and argue for creating a national health agenda for young adults that includes research, programs and policies to address health issues during this period of the lifespan.

Health-related quality of life and psychosocial implications in testicular cancer survivors. A literature review.

PubMed

Cappuccio, F; Rossetti, S; Cavaliere, C; Iovane, G; Taibi, R; D'Aniello, C; Imbimbo, C; Facchini, S; Abate, V; Barberio, D; Facchini, G

2018-02-01

In this review, we focused our attention on Quality of Life (QoL) of testicular cancer survivors (TCSs), in general and in the most relevant areas. Several key findings have been highlighted in our review. PubMed, MEDLINE and PsycINFO databases were consulted to find published studies, from 1980 to May 2017, that met our inclusion criteria. The majority of studies investigated older adult TCSs, while few studies on adolescent and young adult patients were available. Many studies indicate that health-related QoL (HRQoL) is similar among the TCSs and the general population. Even if QoL deteriorates so clear at the time of diagnosis and throughout treatment, afterward returns to normal levels, as defined by the matched controls. However, there are numerous chronic conditions consequent to diagnosis and treatment of testicular cancer that plague survivors and affect QoL, like Raynaud-like phenomena, peripheral neuropathy, fatigue, anxiety, sexual, fertility and body image problems. Even if these problems can have no effects on the measures of global QoL, they have an impact on the quality of life. Differences between TCSs with and without a partner bring to different outcomes in the adjustments to cancer. It is necessary to identify TCSs with higher risks of poorer QoL outcomes, to focus interventions on the areas with the greatest impairments. Further researches should consider the effects of testicular cancer on the impaired areas, collecting more data to better identify survivor's needs and consequent interventions, with a special focus on adolescent and young adult TCSs. Other works are requested on therapies, preventive and ameliorative, to reduce chronic side effects of testicular cancer treatment.

Health Promotion for Young Adults With Serious Mental Illness

PubMed Central

Naslund, John A.; Aschbrenner, Kelly A.; Scherer, Emily A.; Pratt, Sarah I.; Bartels, Stephen J.

2017-01-01

Objective Young adulthood represents a critical time to address elevated obesity rates and the risk of early mortality, particularly among people with serious mental illness. Few studies have assessed the benefits of lifestyle interventions targeting weight loss among these young adults. This study examined the impact of the 12-month In SHAPE lifestyle intervention on weight loss and fitness among overweight and obese young adults with serious mental illness (ages 21–30) compared with participants over age 30. Methods Data were combined from three trials of the 12-month In SHAPE program delivered through community mental health centers. In SHAPE includes weekly fitness trainer meetings, a gym membership, and nutrition education. Primary outcomes were weight loss and change in fitness at 12 months. Results Participants (N=194) had a schizophrenia spectrum disorder (53%) or a mood disorder (47%). The overall sample achieved significant weight loss and improved fitness; differences between young adults (N=29) and participants over age 30 (N=165) were not significant. An important finding was that 42% of young adults achieved clinically significant reductions in cardiovascular risk, defined as ≥5% weight loss or improved fitness (>50-m increase on the 6-Minute Walk Test), compared with 54% of adults over age 30 (a non-significant difference between age groups). Conclusions Among persons enrolled in a lifestyle intervention, overweight and obese young adults experienced benefits comparable with those of adults over age 30. Young adults with serious mental illness face high risk of gaining weight, but a meaningful proportion of these individuals can achieve clinically significant cardiovascular risk reduction, thus highlighting the need to promote lifestyle intervention participation in this group. PMID:27799016

Health Promotion for Young Adults With Serious Mental Illness.

PubMed

Naslund, John A; Aschbrenner, Kelly A; Scherer, Emily A; Pratt, Sarah I; Bartels, Stephen J

2017-02-01

Young adulthood represents a critical time to address elevated obesity rates and the risk of early mortality, particularly among people with serious mental illness. Few studies have assessed the benefits of lifestyle interventions targeting weight loss among these young adults. This study examined the impact of the 12-month In SHAPE lifestyle intervention on weight loss and fitness among overweight and obese young adults with serious mental illness (ages 21-30) compared with participants over age 30. Data were combined from three trials of the 12-month In SHAPE program delivered through community mental health centers. In SHAPE includes weekly fitness trainer meetings, a gym membership, and nutrition education. Primary outcomes were weight loss and change in fitness at 12 months. Participants (N=194) had a schizophrenia spectrum disorder (53%) or a mood disorder (47%). The overall sample achieved significant weight loss and improved fitness; differences between young adults (N=29) and participants over age 30 (N=165) were not significant. An important finding was that 42% of young adults achieved clinically significant reductions in cardiovascular risk, defined as ≥5% weight loss or improved fitness (>50-m increase on the 6-Minute Walk Test), compared with 54% of adults over age 30 (a nonsignificant difference between age groups). Among persons enrolled in a lifestyle intervention, overweight and obese young adults experienced benefits comparable with those of adults over age 30. Young adults with serious mental illness face high risk of gaining weight, but a meaningful proportion of these individuals can achieve clinically significant cardiovascular risk reduction, thus highlighting the need to promote lifestyle intervention participation in this group.