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.

A Randomized Trial of a Facebook-based Physical Activity Intervention for Young Adult Cancer Survivors

PubMed Central

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

2013-01-01

Purpose Over half of young adult cancer survivors do not meet physical activity (PA) guidelines. PA interventions can enhance health and quality of life among young adult cancer survivors. However, few exercise interventions have been designed and tested in this population. This study evaluated the feasibility and preliminary efficacy of a 12-week, Facebook-based intervention (FITNET) aimed at increasing moderate-to-vigorous intensity PA compared to a Facebook-based self-help comparison (SC) condition. Methods Young adult cancer survivors (n=86) were randomly assigned to the FITNET or SC group. All participants were asked to complete self-administered online questionnaires at baseline and after 12 weeks. Results Seventy-seven percent of participants completed post-intervention assessments, and most participants reported using intervention components as intended. Participants in both groups would recommend the program to other young adult cancer survivors (FITNET: 46.9% vs. SC: 61.8%; p=0.225). Over 12 weeks, both groups increased self-reported weekly minutes of moderate-to-vigorous PA (FITNET: 67 minutes/week, p=0.009 vs. SC: 46 minutes/week, p=0.045), with no significant difference between groups. Increases in light PA were 135 minutes/week greater in the FITNET group relative to the SC group (p=0.032), and the FITNET group reported significant weight loss over time (−2.1 kg, p=0.004; p=0.083 between groups). Conclusions Facebook-based intervention approaches demonstrated potential for increasing PA in young adult cancer survivors. Implications for Cancer Survivors Social networking sites may be a feasible way for young adult cancer survivors to receive health information and support to promote PA and healthy behaviors. PMID:23532799

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.

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

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.

A randomized trial of a Facebook-based physical activity intervention for young adult cancer survivors.

PubMed

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

2013-09-01

Over half of young adult cancer survivors do not meet physical activity (PA) guidelines. PA interventions can enhance health and quality of life among young adult cancer survivors. However, few exercise interventions have been designed and tested in this population. This study evaluated the feasibility and preliminary efficacy of a 12-week, Facebook-based intervention (FITNET) aimed at increasing moderate-to-vigorous intensity PA compared with a Facebook-based self-help comparison (SC) condition. Young adult cancer survivors (n = 86) were randomly assigned to the FITNET or SC group. All participants were asked to complete self-administered online questionnaires at baseline and after 12 weeks. Seventy-seven percent of participants completed postintervention assessments, and most participants reported using intervention components as intended. Participants in both groups would recommend the program to other young adult cancer survivors (FITNET, 46.9 vs. SC, 61.8 %; p = 0.225). Over 12 weeks, both groups increased self-reported weekly minutes of moderate-to-vigorous PA (FITNET, 67 min/week (p = 0.009) vs. SC, 46 min/week (p = 0.045)), with no significant difference between groups. Increases in light PA were 135 min/week greater in the FITNET group relative to the SC group (p = 0.032), and the FITNET group reported significant weight loss over time (-2.1 kg, p = 0.004; p = 0.083 between groups). Facebook-based intervention approaches demonstrated potential for increasing PA in young adult cancer survivors. Social networking sites may be a feasible way for young adult cancer survivors to receive health information and support to promote PA and healthy behaviors.

The lived experience of visual creative expression for young adult cancer survivors.

PubMed

Green, A R; Young, R A

2015-09-01

Engaging in visual creative expression individually and in a therapeutic setting can be a beneficial experience for cancer survivors; however, most research in this field has been conducted with older adults. The current study aimed to address this gap by utilising van Manen's hermeneutic phenomenology to answer the following question: 'What is the lived experience and meaning of visual creative expression for young adult cancer survivors?' Seven young adults, diagnosed with cancer between the ages of 18 and 35, were interviewed about creative expression experiences, which they engaged in individually and/or in a therapeutic setting. Data analysis included a thematic reflection, guided existential reflection, and a process of writing and rewriting. Two superordinate themes were identified: increased self-understanding and a healing experience. Seven subthemes were also identified and included the following: being in the flow, allowing the body to express itself, renegotiating control, changing one's environment, being seen, respect for art as a separate entity and giving back. Findings suggest that visual creative expression can be a meaningful experience for young adult cancer survivors, and that this experience espouses both similarities and differences from experiences of older adult survivors. Recommendations are made for future research, in addition to implications for practitioners. © 2014 John Wiley & Sons Ltd.

Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors.

PubMed

Casillas, Jacqueline; Kahn, Katherine L; Doose, Michelle; Landier, Wendy; Bhatia, Smita; Hernandez, Joanna; Zeltzer, Lonnie K

2010-09-01

To determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult-centered survivorship care and to also assess the parents' perspective of care. Partnering with a community-based organization that serves Latino survivors, we conducted a qualitative, constant comparative analytic approach exploring in-depth themes that have salience for Latino pediatric cancer survivors seeking care in the adult healthcare setting. Twenty-seven Latino AYA survivors (>or=15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. Barriers to survivorship care include cancer stigma for both patient and nuclear family, which can impact on seeking survivorship care due to constraints placed on discussions because it remains difficult to discuss 'cancer' years later. Future research can evaluate if these findings are unique to Latino childhood cancer survivors or are found in other populations of AYA cancer survivors transitioning to adult-centered healthcare. This community-based participatory research collaboration also highlights the opportunity to learn about the needs of childhood cancer survivors from the lens of community leaders serving culturally diverse populations. (c) 2010 John Wiley & Sons, Ltd.

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.

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

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.

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).

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.

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

Educational and career goal attainments in young adult childhood cancer survivors.

PubMed

Bashore, Lisa; Breyer, Emma

2017-04-01

Examine the educational and career outcomes of young adult childhood cancer survivors. Descriptive study design using a survey sent to 336 survivors. Quantitative and qualitative data were analyzed separately. Only 50 completed surveys were returned. Having a central nervous system tumor and radiation were associated with physical impairments. Four themes also emerged: future as medical professionals, dreams fallen short, peer relationships, and positive outlook on life. Pediatric nurses caring for survivors should partner with oncology professionals to support survivors to enrich their educational and career opportunities. © 2017 Wiley Periodicals, Inc.

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.

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.

Randomized Trial of a Physical Activity and Meditation Intervention for Young Adult Cancer Survivors.

PubMed

Rabin, Carolyn; Pinto, Bernardine; Fava, Joseph

2016-03-01

Young adult cancer survivors have a number of increased health and psychosocial risks. To minimize these risks, they must address any modifiable risk factors, for example increase their physical activity (PA) and reduce stress. Unfortunately, more than half of young survivors remain sedentary, and few participate in a structured form of relaxation. This study evaluated the feasibility, acceptability, and effects of a theory-based PA and meditation intervention for young survivors. Young adult cancer survivors (age 18-39 years) were randomized to receive the 12-week "RElaxation aNd Exercise for Wellness" (RENEW) intervention right away (intervention group) or after a 12-week wait (control group). Participants were assessed at baseline, 12 weeks, and 24 weeks. Thirty-five survivors were enrolled and randomized. Results indicate that 89% of intervention calls were delivered, and most participants felt that intervention goals and the number and duration of intervention calls were appropriate. Satisfaction ratings indicate that the intervention was acceptable, and 100% of participants would recommend it to others. Comparison of the intervention and control groups at the 12-week assessment (i.e., before controls received the intervention) revealed that the intervention group was performing more minutes of at least moderate intensity PA/week (p = 0.002; M = 113.8, SE = 23.5 vs. M = -8.7, SE = 27.1) and outperformed controls on a test of cardiovascular fitness (p = 0.008; M = -1.76, SE = 0.41 vs. M = -0.03, SE = 0.45). When data from the intervention and control groups were pooled, pre- to post-intervention analyses indicated a trend toward improved mood. This theory-based intervention for young adult cancer survivors was feasible and acceptable, and may have helped survivors increase PA, improve fitness, and enhance mood.

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.

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.

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.

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.

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

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…

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.

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.

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.

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.

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.

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.

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.

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

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.

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

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

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.

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.

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.

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.

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.

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.

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

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.

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

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

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.

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.

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.

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.

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

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.

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

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

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

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.

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.

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

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

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

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.

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

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.

Long-term health effects among testicular cancer survivors

PubMed Central

Hashibe, Mia; Abdelaziz, Sarah; Al-Temimi, Mohammed; Fraser, Alison; Boucher, Kenneth M.; Smith, Ken; Lee, Yuan-chin Amy; Rowe, Kerry; Rowley, Braden; Daurelle, Micky; Holton, Avery E.; VanDerslice, James; Richiardi, Lorenzo; Bishoff, Jay; Lowrance, Will; Stroup, Antoinette

2016-01-01

Purpose Testicular cancer is diagnosed at a young age and survival rates are high, thus the long term effects of cancer treatment need to be assessed. Our objectives are to estimate the incidence rates and determinants of late effects in testicular cancer survivors. Methods We conducted a population-based cohort study of testicular cancer survivors, diagnosed 1991 – 2007, followed up for a median of 10 years. We identified 785 testicular cancer patients who survived ≥5 years and 3,323 men free of cancer for the comparison group. Multivariate Cox regression analysis was used to compare the hazard ratio between the cases and the comparison group and for internal analysis among case patients. Results Testicular cancer survivors experienced a 24% increase in risk of long-term health effects >5 years after diagnosis. The overall incidence rate of late effects among testicular cancer survivors was 66.3 per 1,000 person years. Higher risks were observed among testicular cancer survivors for hypercholesterolemia, infertility and orchitis. Chemotherapy and retroperitoneal lymph node dissection appeared to increase the risk of late effects. Being obese prior to cancer diagnosis appeared to be the strongest factor associated with late effects. Conclusions Testicular cancer survivors were more likely to develop chronic health conditions when compared to cancer-free men. Implications for Cancer Survivors While the late effects risk was increased among testicular cancer survivors, the incidence rates of late effects after cancer diagnosis was fairly low. PMID:27169992

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

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.

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.

“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

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.

Preparing childhood cancer survivors for transition to adult care: The young adult perspective.

PubMed

Frederick, Natasha N; Bober, Sharon L; Berwick, Lexie; Tower, Mary; Kenney, Lisa B

2017-10-01

Childhood cancer survivors (CCSs) remain at risk for developing treatment-associated health conditions as they age; however, many do not obtain recommended follow-up, putting them at unnecessary risk for morbidity. Educational interventions targeted at providing survivors with the knowledge and skills necessary for healthcare independence might improve adherence and outcomes as they transition care to the adult medical system. To identify informational needs, educational preferences, and support that young adult CCSs perceive as beneficial for transition from pediatric to adult medical care. Sixteen young adult CCSs (ages 22-39 years) who have transitioned to adult care participated in focus groups led by a trained moderator and analyzed using a thematic analysis approach. Four major themes emerged: (1) education preferences-pediatric oncology provider as the primary source of information and guidance, enhanced by other formats, and early and ongoing engagement in education; (2) family role in transition-desire for independence and acknowledgement of need for ongoing parental support; (3) expectations for adult providers, such as close relationships, open communication, and care coordination; and (4) knowledge deficits regarding disease/treatment history, risk for long-term complications, and navigation of the adult medical system. Transition education as described by young adult CCSs should be a developmentally appropriate process beginning in early adolescents, primarily administered by pediatric oncology providers, and delivered in multiple formats. While healthcare independence is a goal for young adult CCSs, all stakeholders must recognize that families and providers continue to have an important role supporting survivors with transition logistics and medical decision-making. © 2017 Wiley Periodicals, Inc.

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

Long-term health effects among testicular cancer survivors.

PubMed

Hashibe, Mia; Abdelaziz, Sarah; Al-Temimi, Mohammed; Fraser, Alison; Boucher, Kenneth M; Smith, Ken; Lee, Yuan-Chin Amy; Rowe, Kerry; Rowley, Braden; Daurelle, Micky; Holton, Avery E; VanDerslice, James; Richiardi, Lorenzo; Bishoff, Jay; Lowrance, Will; Stroup, Antoinette

2016-12-01

Testicular cancer is diagnosed at a young age and survival rates are high; thus, the long-term effects of cancer treatment need to be assessed. Our objectives are to estimate the incidence rates and determinants of late effects in testicular cancer survivors. We conducted a population-based cohort study of testicular cancer survivors, diagnosed 1991-2007, followed up for a median of 10 years. We identified 785 testicular cancer patients who survived ≥5 years and 3323 men free of cancer for the comparison group. Multivariate Cox regression analysis was used to compare the hazard ratio between the cases and the comparison group and for internal analysis among case patients. Testicular cancer survivors experienced a 24 % increase in risk of long-term health effects >5 years after diagnosis. The overall incidence rate of late effects among testicular cancer survivors was 66.3 per 1000 person years. Higher risks were observed among testicular cancer survivors for hypercholesterolemia, infertility, and orchitis. Chemotherapy and retroperitoneal lymph node dissection appeared to increase the risk of late effects. Being obese prior to cancer diagnosis appeared to be the strongest factor associated with late effects. Testicular cancer survivors were more likely to develop chronic health conditions when compared to cancer-free men. While the late effects risk was increased among testicular cancer survivors, the incidence rates of late effects after cancer diagnosis was fairly low.

Career readiness, developmental work personality and age of onset in young adult central nervous system survivors.

PubMed

Strauser, David; Wagner, Stacia; Wong, Alex W K; O'Sullivan, Deidre

2013-04-01

The primary purpose of this paper is to undertake foundational research in the area of career readiness, work personality and age of onset with young adult central nervous system (CNS) survivors. Participants for this study consisted of 43 individuals whose age range from 18 to 30 (M = 21.64, SD = 3.46), an average age of brain tumor onset of 9.50 years (SD = 4.73) and average years off of treatment of 7.25 years (SD = 5.80). Packets were distributed to survivors who were participating in a psychosocial cancer treatment program. Participants completed multiple career instruments and a demographic form. Differences between groups and among the variables were examined and size effect sizes were analyzed. Young adult CNS survivors had significantly lower levels of work personality and career readiness when compared to young adult non-cancer survivors with CNS cancer with those between the ages of 6 and 12 reported significantly lower levels when compared to individuals diagnosed before age 6 and after the age of 13. Young adult CNS survivors at an increased risk for having lower levels of work personality and career readiness then a norm group comparison. Age of onset (between 6 and 12) may be at significant risk factor for developing poor or dysfunctional work and career behaviors. • Young adults with central nervous system (CNS) cancer are at particular risk for experiencing difficulties related to career and employment. • Work personality and career readiness are two constructs that have been found to be related to one's ability to meet the demands of work. • Young adult CNS cancer survivors have lower levels of work personality and career readiness. • Individuals diagnosed between the ages of 6 and 12 may be at particular risk and may need specific vocational rehabilitation interventions. • The results of this study point to the need for comprehensive career and vocational services for young adult CNS cancer survivors.

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.

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.

"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.

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

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.

Breast Cancer Risk in Childhood Cancer Survivors Without a History of Chest Radiotherapy: A Report From the Childhood Cancer Survivor Study

PubMed Central

Moskowitz, Chaya S.; Chou, Joanne F.; Bradbury, Angela R.; Neglia, Joseph Phillip; Dang, Chau T.; Onel, Kenan; Novetsky Friedman, Danielle; Bhatia, Smita; Strong, Louise C.; Stovall, Marilyn; Kenney, Lisa B.; Barnea, Dana; Lorenzi, Elena; Hammond, Sue; Leisenring, Wendy M.; Robison, Leslie L.; Armstrong, Gregory T.; Diller, Lisa R.; Oeffinger, Kevin C.

2016-01-01

Purpose Little is known about the breast cancer risk among childhood cancer survivors who did not receive chest radiotherapy. We sought to determine the magnitude of risk and associated risk factors for breast cancer among these women. Patients and Methods We evaluated cumulative breast cancer risk in 3,768 female childhood cancer survivors without a history of chest radiotherapy who were participants in the Childhood Cancer Survivor Study. Results With median follow up of 25.5 years (range, 8 to 39 years), 47 women developed breast cancer at a median age of 38.0 years (range, 22 to 47 years) and median of 24.0 years (range, 10 to 34 years) from primary cancer to breast cancer. A four-fold increased breast cancer risk (standardized incidence ratio [SIR] = 4.0; 95% CI, 3.0 to 5.3) was observed when compared with the general population. Risk was highest among sarcoma and leukemia survivors (SIR = 5.3; 95% CI, 3.6 to 7.8 and SIR = 4.1; 95% CI, 2.4 to 6.9, respectively). By the age of 45 years, the cumulative incidence of breast cancer in sarcoma and leukemia survivors was 5.8% (95% CI, 3.7 to 8.4) and 6.3% (95% CI, 3.0 to 11.3), respectively. No other primary cancer diagnosis was associated with an elevated risk. Alkylators and anthracyclines were associated with an increased breast cancer risk in a dose-dependent manner (P values from test for trend were both < .01). Conclusions Women not exposed to chest radiotherapy who survive childhood sarcoma or leukemia have an increased risk of breast cancer at a young age. The data suggest high-dose alkylator and anthracycline chemotherapy increase the risk of breast cancer. This may suggest a possible underlying gene-environment interaction that warrants further study. PMID:26700127

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.

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.

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

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/.

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

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.

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.

Carotid intima-media thickness in young survivors of childhood cancer.

PubMed

Krawczuk-Rybak, Maryna; Tomczuk-Ostapczuk, Monika; Panasiuk, Anna; Goscik, Elzbieta

2017-02-01

Radiotherapy (RT) and some chemotherapy regimens are known risk factors predisposing to the development of premature arterial disease. Vascular ultrasound measurement of carotid intima-media thickness (IMT) is a non-invasive technique, useful to detect early subclinical symptoms of atherosclerosis that can appear in the paediatric population. We analysed the influence of chemotherapy and moderate doses of head or neck irradiation in childhood cancer survivors on the possibility of premature carotid artery disease. Ultrasound measurements of the intima-media thickness (IMT) in the common carotid artery (CCA), bulb and internal carotid artery (ICA) were performed in 74 young cancer survivors and in 48 age- and sex-matched controls. In the whole study group, we observed higher IMT in all positions as compared with the control, except for comparable thickness in the CCA (bilaterally). We failed to find any differences in IMT between irradiated and non-irradiated females. In irradiated males, all IMT measurements on the right side were higher than in non-irradiated patients. There was no effect of body mass index, blood pressure, serum cholesterol, triglycerides, fibrinogen and thyroid hormones on IMT. In the irradiated group, a positive correlation was observed between IMT in the right bulb and the post-radiation time. Anticancer treatment during childhood, especially including irradiation to the mediastinum, head or neck, affects the IMT, particularly in males. This suggests a possible role of irradiation in the premature development of carotid artery disease. © 2016 The Royal Australian and New Zealand College of Radiologists.

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.

Fear of cancer recurrence in young early-stage breast cancer survivors: the role of metacognitive style and disease-related factors.

PubMed

Thewes, B; Bell, M L; Butow, P

2013-09-01

Fear of cancer recurrence (FCR) is a common challenge of cancer survivorship, particularly in younger survivors. Maladaptive metacognitions have been shown to be important to the development of a range of emotional disorders but have not previously been explored in the context of FCR. This study aimed to explore the relationship between FCR and a maladaptive metacognitions. This cross-sectional study included young women diagnosed with early-stage breast cancer at least 1 year prior to study entry. Participants completed a web-based questionnaire, which included the Fear of Cancer Recurrence Inventory (FCRI) and the brief Metacognitions Questionnaire-30 (MCQ-30). Linear regression was used to calculate unadjusted and adjusted slope estimates of the association of FCR with six metacognition variables, the total score of the MCQ-30 and the five subscales. Two-hundred and eighteen women with a mean age of 39 years at diagnosis participated. All measures of metacognitive style were moderately correlated with FCRI scores (r=0.31-0.49) and significantly associated with FCRI in both unadjusted and adjusted models. Overall metacognitive style explained 36% of the variance in FCR scores in combination with disease and demographic factors. Negative metacognitions (R(2) =0.32) and need for control over cognition (R(2)=0.26) were the MCQ-30 subscales most associated with higher FCR. Unhelpful metacognitions appear to play an important role in FCR in young women with early-stage breast cancer. Treatments that focus on changing unhelpful metacognitions may prove a useful approach for treating clinical FCR in cancer survivors in the future. Copyright © 2013 John Wiley & Sons, Ltd.

Increased uptake of social security benefits among long-term survivors of cancer in childhood, adolescence and young adulthood: a Norwegian population-based cohort study.

PubMed

Ghaderi, S; Engeland, A; Moster, D; Ruud, E; Syse, A; Wesenberg, F; Bjørge, T

2013-04-16

As the number of cancer survivors increases, their health and welfare have come into focus. Thus, long-term medical consequences of cancer at a young age (<25 years), obtained from social security benefit records, were studied. Standardised incidence ratios (SIRs) of long-term medical consequences for 5-year cancer survivors, born during 1965-1985, were explored by linking population-based registries in Norway. Among the 5-year cancer survivors (4031 individuals), 29.7% received social security benefits. The survivors had an overall 4.4 times (95% confidence interval (95% CI): 4.1-4.6) higher risk of social security benefit uptake than the cancer-free population. Survivors of malignancies of bone and connective tissues (SIR: 10.8; 95% CI: 9.1-12.9), CNS tumours (SIR: 7.7; 95% CI: 6.9-8.6) and malignancies of the haematopoietic system (SIR: 6.1; 95% CI: 5.3-7.0) had the highest risks of social security benefits uptake. The most notified causes of social security benefit uptake were diseases of the nervous system, and injury and poisoning. The uptake of social security benefits among 5-year cancer survivors increased substantially and it may represent a solid outcome measure for the burden of the most severe late effects, especially in countries with comparable social welfare systems.

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.

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

Design and Rationale for a Parent-Led Intervention to Increase Fruit and Vegetable Intake in Young Childhood Cancer Survivors (Reboot): Protocol for a Pilot Study

PubMed Central

Cohen, Jennifer; Wakefield, Claire; Grech, Allison; Garnett, Sarah; Gohil, Paayal; Cohn, Richard

2018-01-01

Background Poor dietary habits are common among childhood cancer survivors, despite increasing their risk of cardio metabolic complications after cancer treatment. Here, we describe the design and rationale for a pilot telephone-based, parent-led intervention aimed at increasing fruit and vegetable intake in young cancer survivors (Reboot). Objective This pilot study aims to assess the feasibility and acceptability of delivering evidence-based telephone support to parents of childhood cancer survivors. A secondary aim includes assessing the effect of Reboot on improving childhood cancer survivors’ dietary quality by increasing child fruit and vegetable intake and variety and its contribution to overall nutrient intake. Methods We aim to recruit parents of 15 young cancer survivors aged 2 to 12 years who have completed cancer treatment less than five years ago. The intervention comprises of 4 weekly 45-minute telephone sessions led by a health professional and one booster session 6 weeks later. Sessions address the effects of cancer treatment on children’s diets, recommended fruit and vegetable intake for children, and evidence-based strategies to promote the consumption of fruit and vegetables as well as to manage fussy eating. Results Reboot is based on an existing, evidence-based parent nutrition intervention and modified for childhood cancer survivors following extensive collaboration with experts in the field. Primary outcomes of feasibility and acceptability will be measured by the number of participants who complete all five sessions, average session length (minutes), length between sessions (days) and parent Likert ratings of the usefulness and impact of the intervention collected after the booster session. Of the 15 participants we aim to recruit, 3 have completed the intervention, 1 declined to participate, 11 are actively completing the intervention and 2 participants are providing written consent. The remaining 3 participants will be recruited via

Design and Rationale for a Parent-Led Intervention to Increase Fruit and Vegetable Intake in Young Childhood Cancer Survivors (Reboot): Protocol for a Pilot Study.

PubMed

Touyz, Lauren; Cohen, Jennifer; Wakefield, Claire; Grech, Allison; Garnett, Sarah; Gohil, Paayal; Cohn, Richard

2018-05-16

Poor dietary habits are common among childhood cancer survivors, despite increasing their risk of cardio metabolic complications after cancer treatment. Here, we describe the design and rationale for a pilot telephone-based, parent-led intervention aimed at increasing fruit and vegetable intake in young cancer survivors (Reboot). This pilot study aims to assess the feasibility and acceptability of delivering evidence-based telephone support to parents of childhood cancer survivors. A secondary aim includes assessing the effect of Reboot on improving childhood cancer survivors' dietary quality by increasing child fruit and vegetable intake and variety and its contribution to overall nutrient intake. We aim to recruit parents of 15 young cancer survivors aged 2 to 12 years who have completed cancer treatment less than five years ago. The intervention comprises of 4 weekly 45-minute telephone sessions led by a health professional and one booster session 6 weeks later. Sessions address the effects of cancer treatment on children's diets, recommended fruit and vegetable intake for children, and evidence-based strategies to promote the consumption of fruit and vegetables as well as to manage fussy eating. Reboot is based on an existing, evidence-based parent nutrition intervention and modified for childhood cancer survivors following extensive collaboration with experts in the field. Primary outcomes of feasibility and acceptability will be measured by the number of participants who complete all five sessions, average session length (minutes), length between sessions (days) and parent Likert ratings of the usefulness and impact of the intervention collected after the booster session. Of the 15 participants we aim to recruit, 3 have completed the intervention, 1 declined to participate, 11 are actively completing the intervention and 2 participants are providing written consent. The remaining 3 participants will be recruited via telephone follow-up calls. The intervention

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

Survivors on Cancer: the portrayal of survivors in print news.

PubMed

Kromm, Elizabeth Edsall; Smith, Katherine Clegg; Singer, Rachel Friedman

2007-12-01

This study examines the types of news stories that include comments by everyday cancer survivors and the messages or information these individuals provide. Even though these non-celebrity survivors increasingly serve on the front lines of cancer prevention and advocacy efforts and often engage with media, the role they play in the media discourse on cancer has not been a focus of research. We conducted a thematic content analysis of print news articles of non-celebrity cancer survivors in 15 leading national daily newspapers for four consecutive months starting in June 2005 to identify the issues or events that included a survivor perspective and the messages or information conveyed by the everyday survivors. Journalists included survivor commentary primarily when covering cancer fundraising events and when focusing on individual survivorship stories. In overall news coverage involving survivors, breast and prostate cancers received the greatest attention, followed by blood and lung cancers. Survivors spoke mainly about the diagnosis experience and life post-cancer. Our analysis of survivors' comments revealed that discussions of the diagnosis experience often convey fear and a lack of confidence in cancer screening practices, while cancer is portrayed as a positive life event. While evidence of a positive and hopeful portrayal of survivorship is an encouraging finding for continued efforts to decrease stigma associated with a cancer diagnosis and for the public understanding of the disease, it is important to consider potential negative implications of an idealized and restricted media discourse on survivorship. The increasing size and capacity of the survivor community offers opportunities for the cancer advocacy community to consider how news media portrayal of cancer and survivorship may contribute in both positive and potentially detrimental ways to public understanding of this disease, its survivors and life after cancer.

Increased uptake of social security benefits among long-term survivors of cancer in childhood, adolescence and young adulthood: a Norwegian population-based cohort study

PubMed Central

Ghaderi, S; Engeland, A; Moster, D; Ruud, E; Syse, A; Wesenberg, F; Bjørge, T

2013-01-01

Background: As the number of cancer survivors increases, their health and welfare have come into focus. Thus, long-term medical consequences of cancer at a young age (<25 years), obtained from social security benefit records, were studied. Methods: Standardised incidence ratios (SIRs) of long-term medical consequences for 5-year cancer survivors, born during 1965–1985, were explored by linking population-based registries in Norway. Results: Among the 5-year cancer survivors (4031 individuals), 29.7% received social security benefits. The survivors had an overall 4.4 times (95% confidence interval (95% CI): 4.1–4.6) higher risk of social security benefit uptake than the cancer-free population. Survivors of malignancies of bone and connective tissues (SIR: 10.8; 95% CI: 9.1–12.9), CNS tumours (SIR: 7.7; 95% CI: 6.9–8.6) and malignancies of the haematopoietic system (SIR: 6.1; 95% CI: 5.3–7.0) had the highest risks of social security benefits uptake. The most notified causes of social security benefit uptake were diseases of the nervous system, and injury and poisoning. Conclusion: The uptake of social security benefits among 5-year cancer survivors increased substantially and it may represent a solid outcome measure for the burden of the most severe late effects, especially in countries with comparable social welfare systems. PMID:23481179

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.

Discursive constructions of youth cancer: findings from creative methods research with healthy young people.

PubMed

Mooney-Somers, Julie; Lewis, Peter; Kerridge, Ian

2016-06-01

As part of work to understand the experiences of young people who had cancer, we were keen to examine the perspectives of peers who share their social worlds. Our study aimed to examine how cancer in young people, young people with cancer and young cancer survivors are represented through language, metaphor and performance. We generated data using creative activities and focus group discussions with three high school drama classes and used Foucauldian discourse analysis to identify the discursive constructions of youth cancer. Our analysis identified two prevailing discursive constructions: youth cancer as an inevitable decline towards death and as overwhelming personhood by reducing the young person with cancer to 'cancer victim'. If we are to understand life after cancer treatment and how to support young people who have been treated for cancer, we need a sophisticated understanding of the social contexts they return to. Discourses shape the way young people talk and think about youth cancer; cancer as an inevitable decline towards death and as overwhelming personhood is a key discursive construction that young people draw on when a friend discloses cancer. The way cancer is constructed shapes how friends react to and relate to a young person with cancer. These constructions are likely to shape challenging social dynamics, such as bullying, that many young cancer survivors experience. Awareness of these discursive constructions can better equip young cancer survivors, their family and health professionals negotiate life after cancer.

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.

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.

Exploration of psychological distress experienced by survivors of adolescent cancer reporting a need for psychological support

PubMed Central

Thorsell Cederberg, Jenny; von Essen, Louise; Hovén, Emma

2018-01-01

Objective In this qualitative study, we aimed to provide an in-depth exploration of cancer-related psychological distress experienced by young survivors of cancer during adolescence reporting a need for psychological support. Methods Two individual interviews were held with ten young survivors of cancer diagnosed in adolescence. The interviews were audio-recorded and transcribed verbatim. Analysis followed the guidelines for inductive qualitative manifest content analysis. Results The survivors described distress experienced during and after the end of treatment. Five categories comprising 14 subcategories were generated. The categories included: A tough treatment, Marked and hindered, Not feeling good enough, Struggling with the fragility of life, and finally, An ongoing battle with emotions. Conclusion Young survivors of adolescent cancer reporting a need for psychological support described feeling physically, socially, and mentally marked by the cancer experience. They struggled with powerlessness, insecurity, social disconnection, loneliness, and feelings of being unimportant and a failure, and had difficulties understanding and managing their experiences. These concerns should be addressed in psychological treatments for the population irrespective of which approach or model is used to understand survivors’ difficulties. A trans-diagnostic approach targeting processes that underpin different manifestations of distress may be effective. PMID:29664926

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.

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. �

Health-related quality of life of African-American female breast cancer survivors, survivors of other cancers, and those without cancer.

PubMed

Claridy, Mechelle D; Ansa, Benjamin; Damus, Francesca; Alema-Mensah, Ernest; Smith, Selina A

2018-04-27

The purpose of this study was to compare differences in health-related quality of life (HRQOL) between African-American female breast cancer survivors, African-American female survivors of other cancers, and African-American women with no history of cancer. Using data from the 2010 National Health Interview Survey (NHIS), the HRQOL of African-American women aged 35 years or older was compared by cancer status. Physical and mental health items from the Patient-Reported Outcomes Measurement Information System (PROMIS) global health scale were used to assess differences in HRQOL. For summary physical and mental health measures, no significant differences were found between breast cancer survivors and women with no history of cancer; survivors of other cancers reported poorer physical and mental health than did women with no history of cancer. Similar differences were found at the item level. When we examined the two African-American female cancer survivor groups, we found that cancer survivors whose cancer was being treated reported substantially poorer physical health and mental health than did those whose cancer was not being treated. Survivors who had private insurance and were cancer free reported better physical and mental health than did those who did not have private insurance and those who were not cancer free. Breast cancer survivors reported slightly better physical and mental health than did survivors of other cancers. Our findings highlight the need for public health agencies to adopt practices to improve the mental and physical health of African-American female survivors of cancer.

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

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.

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

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

Lessons Learned from the Young Breast Cancer Survivorship Network.

PubMed

Gisiger-Camata, Silvia; Nolan, Timiya S; Vo, Jacqueline B; Bail, Jennifer R; Lewis, Kayla A; Meneses, Karen

2017-11-30

The Young Breast Cancer Survivors Network (Network) is an academic and community-based partnership dedicated to education, support, and networking. The Network used a multi-pronged approach via monthly support and networking, annual education seminars, website networking, and individual survivor consultation. Formative and summative evaluations were conducted using group survey and individual survivor interviews for monthly gatherings, annual education meetings, and individual consultation. Google Analytics was applied to evaluate website use. The Network began with 4 initial partnerships and grew to 38 in the period from 2011 to 2017. During this 5-year period, 5 annual meetings (598 attendees), 23 support and networking meetings (373), and 115 individual survivor consultations were conducted. The Network website had nearly 12,000 individual users and more than 25,000 page views. Lessons learned include active community engagement, survivor empowerment, capacity building, social media outreach, and network sustainability. The 5-year experiences with the Network demonstrated that a regional program dedicated to the education, support, networking, and needs of young breast cancer survivors and their families can become a vital part of cancer survivorship services in a community. Strong community support, engagement, and encouragement were vital components to sustain the program.

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.

"When I Needed It": Evaluation of the Use and Timing of Sharsheret's Thriving Again Program for Young Breast Cancer Survivors.

PubMed

Rohan, Elizabeth A; Townsend, Julie S; Fleischmann, Adina; Stahl, Sharon; Shoretz, Rochelle

2017-02-08

Approximately 11% of all new breast cancer cases in the USA occur in women aged 45 years or younger. In 2011, CDC funded seven organizations to develop or enhance programs for young breast cancer survivors (YBCS). This paper analyzed program evaluation data collected by one of these organizations to gain a more nuanced understanding of how recipients used the newly developed program and resources for YBCS. Sharsheret's Thriving Again program was evaluated through a web-based survey of survivorship program participants. The evaluation asked questions about participant demographics, use of the kit's survivorship care plan (SCP), satisfaction with the timing of survivorship kit receipt, and factors related to survivors' use of additional Sharsheret programs. We conducted bivariate analyses of survey responses and calculated chi-square statistics for significance testing. Of the 163 women who responded to the survey, 43% were diagnosed with breast cancer at or before age 45 and 69% were of Jewish descent. The majority of women who used the SCP found it helpful to facilitate cancer treatment (94%), follow-up (85%), or discussions with providers (91%). A total of 75% of women who received the SCP kit while either recently diagnosed or undergoing treatment were satisfied with the timing of receipt. Survey respondents found the Thriving Again program and survivorship kit beneficial and indicated timing preferences for when to receive resources and support. Supporting the self-efficacy of cancer survivors may improve survivors' quality of life and is an important aspect of survivorship programs.

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.

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).

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.

Social Outcomes in the Childhood Cancer Survivor Study Cohort

PubMed Central

Gurney, James G.; Krull, Kevin R.; Kadan-Lottick, Nina; Nicholson, H. Stacy; Nathan, Paul C.; Zebrack, Brad; Tersak, Jean M.; Ness, Kirsten K.

2009-01-01

Difficulties with negotiating and achieving desired social outcomes in life may be exacerbated by the experience of childhood cancer, including adverse effects from therapies used to achieve a cure. This review of previous publications from the Childhood Cancer Survivor Study (CCSS) and other relevant literature provides insight into the prevalence of, and risk factors for, poor educational attainment, less than optimal employment status, and interpersonal relationship issues among long-term survivors of childhood cancer. The impacts of emotional health and physical disability on social outcomes are also examined. Study results suggest that childhood cancer survivors generally have similar high school graduation rates, but are more likely to require special education services than sibling comparison groups. Survivors are slightly less likely than expected to attend college, and are more likely to be unemployed and not married as young adults. Cancers and treatments that result in impairment to the CNS, particularly brain tumors, or that impact sensory functioning, such as hearing loss, are associated with greater risk for undesirable social outcomes, as are emotional health problems and physical disability. This review of relevant data from CCSS and other studies provides information on risk factors for social problems into adulthood. A greater understanding of the long-term social impacts from the diagnosis and treatment of childhood cancer is critically important for developing targeted interventions to prevent or ameliorate adverse psychosocial effects. PMID:19224833

Social outcomes in the Childhood Cancer Survivor Study cohort.

PubMed

Gurney, James G; Krull, Kevin R; Kadan-Lottick, Nina; Nicholson, H Stacy; Nathan, Paul C; Zebrack, Brad; Tersak, Jean M; Ness, Kirsten K

2009-05-10

Difficulties with negotiating and achieving desired social outcomes in life may be exacerbated by the experience of childhood cancer, including adverse effects from therapies used to achieve a cure. This review of previous publications from the Childhood Cancer Survivor Study (CCSS) and other relevant literature provides insight into the prevalence of, and risk factors for, poor educational attainment, less than optimal employment status, and interpersonal relationship issues among long-term survivors of childhood cancer. The impacts of emotional health and physical disability on social outcomes are also examined. Study results suggest that childhood cancer survivors generally have similar high school graduation rates, but are more likely to require special education services than sibling comparison groups. Survivors are slightly less likely than expected to attend college, and are more likely to be unemployed and not married as young adults. Cancers and treatments that result in impairment to the CNS, particularly brain tumors, or that impact sensory functioning, such as hearing loss, are associated with greater risk for undesirable social outcomes, as are emotional health problems and physical disability. This review of relevant data from CCSS and other studies provides information on risk factors for social problems into adulthood. A greater understanding of the long-term social impacts from the diagnosis and treatment of childhood cancer is critically important for developing targeted interventions to prevent or ameliorate adverse psychosocial effects.

Life after cancer: how does public stigma increase psychological distress of childhood cancer survivors?

PubMed

Kim, Min Ah; Yi, Jaehee

2014-12-01

Public stigma is a major source of stress for cancer survivors. However, factors that buffer or exacerbate the negative effects of public stigma on psychological distress have not been elucidated. This study examined how perceived public stigma affects psychological distress as mediated by cancer disclosure, internalized reactions to stigma, and social support availability. Cross-sectional study. The study was conducted in South Korea. The study sample was 223 adolescent and young adult survivors of childhood cancer diagnosed before the age of 19 and currently between 15 and 39 years old. Psychological distress was assessed using the Brief Symptom Inventory-18. Structural equation modeling was used with 1000 bootstrap samples. The goodness of model fit was acceptable. Public stigma perceived by cancer survivors influenced psychological distress via cancer disclosure, internalized shame, and social support availability. Higher levels of perceived public stigma predicted higher levels of internalized shame and self-blame and lower levels of social support availability, which subsequently increased psychological distress. Higher levels of perceived public stigma predicted lower levels of disclosure about cancer history and experiences. Cancer disclosure indirectly ameliorated psychological distress by reducing internalized shame. This study offers evidence that cognitive and social factors play important roles in mediating the effects of perceived public stigma on psychological distress in Korean cancer survivors. A greater understanding of factors that influence psychological distress may help psychosocial oncology service providers to identify childhood cancer survivors in need of psychosocial services and provide them with appropriate resources and interventions. Copyright © 2014 Elsevier Ltd. All rights reserved.

Radiation and cancer risk in atomic-bomb survivors.

PubMed

Kodama, K; Ozasa, K; Okubo, T

2012-03-01

With the aim of accurately assessing the effects of radiation exposure in the Japanese atomic-bomb survivors, the Radiation Effects Research Foundation has, over several decades, conducted studies of the Life Span Study (LSS) cohort, comprising 93 000 atomic-bomb survivors and 27 000 controls. Solid cancer: the recent report on solid cancer incidence found that at age 70 years following exposure at age 30 years, solid cancer rates increase by about 35%  Gy(-1) for men and 58% Gy(-1) for women. Age-at-exposure is an important risk modifier. In the case of lung cancer, cigarette smoking has been found to be an important risk modifier. Radiation has similar effects on first-primary and second-primary cancer risks. Finally, radiation-associated increases in cancer rates appear to persist throughout life. Leukaemia: the recent report on leukaemia mortality suggests that radiation effects on leukaemia mortality persisted for more than 50 years. Moreover, significant dose-response for myelodysplastic syndrome was observed in Nagasaki LSS members even 40-60 years after radiation exposure. Future perspective: given the continuing solid cancer increase in the survivor population, the LSS will likely continue to provide important new information on radiation exposure and solid cancer risks for another 15-20 years, especially for those exposed at a young age.

Cancer survivors. Work related issues.

PubMed

Schultz, Pamela N; Beck, Martha L; Stava, Charles; Sellin, Rena V

2002-05-01

New and more effective treatments for cancer have resulted in individuals living longer with a better quality of life. Many more survivors are employed in the workplace. Cancer is no longer only an issue for survivors and their families; it has become an issue for the employer and the workplace. This article describes survey results of 4,364 long term cancer survivors in which they were asked to respond to items describing their ability to work, job discrimination, and quality of life. Thirty-five percent of survivors were working at the time they completed the survey, and 8.5% considered themselves unable to work. This research has shown that age, gender, ethnic group, and cancer type affected the working status of the survivors. Of survivors continuing to work, 7.3% indicated they had experienced job discrimination. The results indicate most cancer survivors do not perceive employment related problems, and are readily assimilated into the work force. Job discrimination and the ability to work is a quality of life issue.

Perceptions of Young Adult Central Nervous System Cancer Survivors and Their Parents Regarding Career Development and Employment

ERIC Educational Resources Information Center

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

2014-01-01

Purpose: Identify barriers to career development and employment from both the survivor and parent perspective. Method: Young adult survivors (N = 43) and their parents participated in focus groups to elicit information regarding perceptions regarding career development and employment. Results: Perceptions of both the young adults and parents…

Hospital contact for mental disorders in survivors of childhood cancer and their siblings in Denmark: a population-based cohort study.

PubMed

Lund, Lasse Wegener; Winther, Jeanette F; Dalton, Susanne O; Cederkvist, Luise; Jeppesen, Pia; Deltour, Isabelle; Hargreave, Marie; Kjær, Susanne K; Jensen, Allan; Rechnitzer, Catherine; Andersen, Klaus K; Schmiegelow, Kjeld; Johansen, Christoffer

2013-09-01

Survivors of childhood cancer are known to be at risk for long-term physical and mental effects. However, little is known about how cancers can affect mental health in the siblings of these patients. We aimed to assess the long-term risks of mental disorders in survivors of childhood cancer and their siblings. Hospital contact for mental disorders was assessed in a population-based cohort of 7085 Danish children treated for cancer by contemporary protocols between 1975 and 2010 and in their 13 105 siblings by use of data from the Danish Psychiatric Central Research Registry. Hazard ratios (HRs) for first hospital contact were calculated using a Cox proportional hazards model. We compared these sibling and survivor cohorts with two population-based cohorts who were not childhood cancer survivors or siblings of survivors. Survivors of childhood cancer were at increased risk of hospital contact for mental disorders, with HRs of 1·50 (95% CI 1·32-1·69) for males and 1·26 (1·10-1·44) for females. Children younger than 10 years at diagnosis had the highest risk, and increased risks were seen in survivors of CNS tumours, haematological malignancies, and solid tumours. Survivors had higher risk of neurodevelopmental, emotional, and behavioural disorders than population-based comparisons and siblings, and male survivors had higher risk for unipolar depression. Overall, siblings had no excess risk for mental disorders. However, our data suggest that siblings who were young at the time of cancer diagnosis of the survivor were at increased risk for mental disorders, whereas those older than 15 years at diagnosis were at a lower risk than the general population. Childhood cancer survivors should be followed up for mental late effects, especially those diagnosed in young age. Further, clinicians should also be aware that siblings who were young at the time of cancer diagnosis might be at increased risk for mental health disorders. Copyright © 2013 Elsevier Ltd. All

Japanese Cancer Survivors' Awareness of and Participation in Support Groups.

PubMed

Hatano, Yutaka; Mitsuki, Sachiko; Hosokawa, Toyoshi; Fukui, Kenji

2018-02-01

Cancer survivors face many challenges, and cancer support groups provide a range of support. Several reports have shown the benefits of support groups. However, it is not clear how Japanese cancer survivors use them. This study aimed to examine cancer survivors' awareness of and reasons for participation or non-participation in cancer support groups. We conducted a cross-sectional questionnaire survey with ambulatory patients with cancer across eight designated cancer hospitals. The questionnaire covered patients' demographics, disease characteristics, participation/non-participation in cancer support groups, and reasons for participation/non-participation. In total, 569 questionnaires were distributed, and responses were received from 275 patients with cancer. Of these, 135 patients were aware of support groups and 23 had participated in a group. Patients who were aware of support groups were more likely to be young, female patients. Many patients learned about support groups from hospital notices. Most support group participants expected to receive information about the disease and treatment (91%). They also wanted to hear about other patients' experiences (73%). The most common reasons for non-participation were "no particular reason" (38%) and "family or friends support me" (27%). About half of participating patients were unaware of support groups. Even among patients who were aware, many did not attend a support group. Developing a better understanding of support group use in cancer survivors may enhance provision of adequate care based on individual needs.

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.

The effects of individual- and network-level factors on discussion of cancer experiences: Survivors of childhood cancer in Korea.

PubMed

Kim, Min Ah; Yi, Jaehee; Prince, Kort C; Nagelhout, Elizabeth; Wu, Yelena P

2018-01-01

This study aimed to identify young adult Korean cancer survivors' individual- (psychological distress, stigma, sociodemographic variables, and cancer-related variables) and network-level factors (relationship type, social support type) that influence discussion of their cancer experiences. Sixty-eight survivors of childhood cancer who were recruited using snowball sampling nominated 245 individuals from their networks, including family and intimate partners (40%) and friends and acquaintances (60%), as people with whom they most frequently interacted. Results of multilevel modeling analysis indicated that higher levels of internalized shame were a prominent individual-level factor associated with a lack of discussion of cancer experiences. Relationship type and support type at the network-level were also significant correlates of discussion of cancer experiences. Programs for reducing the survivors' shame, improving illness identity, and providing professional training for building social relationships that are intimate and in which they could exchange reciprocal support may help Korean childhood cancer survivors to openly share their cancer experiences with others in their social network and to be successful in the journey of cancer survivorship.

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

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.

Deficits in Physical Function Among Young Childhood Cancer Survivors

PubMed Central

Hoffman, Megan C.; Mulrooney, Daniel A.; Steinberger, Julia; Lee, Jill; Baker, K. Scott; Ness, Kirsten K.

2013-01-01

Purpose Childhood cancer survivors (CCSs) are at risk for physical disability. The aim of this investigation was to characterize and compare physical performance among CCSs and a group of siblings age < 18 years and determine if diagnosis, treatment, and physical activity levels were associated with lower performance scores. Methods CCSs ≥ 5 years from diagnosis and a sibling comparison group were recruited and evaluated for strength, mobility, and fitness. Physical performance measures were compared in regression models between survivors and siblings by diagnosis and among survivors by treatment exposures and physical activity levels. Results CCSs (n = 183; mean age ± standard deviation [SD], 13.5 ± 2.5 years; 53% male) scored lower than siblings (n = 147; mean age ± SD, 13.4 ± 2.4 years; 50% male) on lower-extremity strength testing, the timed up-and-go (TUG) test, and the 6-minute walk (6MW) test, despite reporting similar levels and types of habitual physical activity. The lowest scores were prevalent among survivors of CNS tumors and bone and soft tissue sarcomas on strength testing (score ± SD: CNS tumors, 76.5 ± 4.7; sarcoma 67.1 ± 7.2 v siblings, 87.3 ± 2.4 Newton-meters quadricep strength at 90° per second; P = .04 and .01, respectively) and among CNS tumor survivors on the TUG (score ± SD: 5.1 ± 0.1 v siblings, 4.4 ± 0.1 seconds; P < .001) and 6MW tests (score ± SD: 533.3 ± 15.6 v siblings, 594.1 ± 8.3 m; P < .001). Conclusion CCSs may have underlying physiologic deficits that interfere with function that cannot be completely overcome by participation in regular physical activity. These survivors may need referral for specialized exercise interventions in addition to usual counseling to remain physically active. PMID:23796992

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.

Promoting Breast Cancer Screening through Storytelling by Chamorro Cancer Survivors

PubMed Central

Manglona, Rosa Duenas; Robert, Suzanne; Isaacson, Lucy San Nicolas; Garrido, Marie; Henrich, Faye Babauta; Santos, Lola Sablan; Le, Daisy; Peters, Ruth

2017-01-01

The largest Chamorro population outside of Guam and the Mariana Islands reside in California. Cancer health disparities disproportionally affect Pacific Islander communities, including the Chamorro, and breast cancer is the most common cancer affecting women. To address health concerns such as cancer, Pacific Islander women frequently utilize storytelling to initiate conversations about health and to address sensitive topics such as breast health and cancer. One form of storytelling used in San Diego is a play that conveys the message of breast cancer screening to the community in a culturally and linguistically appropriate way. This play, Nan Nena’s Mammogram, tells the story of an older woman in the community who learns about breast cancer screening from her young niece. The story builds upon the underpinnings of Chamorro culture - family, community, support, and humor - to portray discussing breast health, getting support for breast screening, and visiting the doctor. The story of Nan Nena’s Mammogram reflects the willingness of a few pioneering Chamorro women to use their personal experiences of cancer survivorship to promote screening for others. Through the support of a Chamorro community-based organization, these Chamorro breast cancer survivors have used the success of Nan Nena’s Mammogram to expand their education activities and to form a new cancer survivor organization for Chamorro women in San Diego. PMID:29805328

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.

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.

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.

Risk Factors for Cardiovascular Disease among Thyroid Cancer Survivors: Findings from the Utah Cancer Survivors Study.

PubMed

Park, Jihye; Blackburn, Brenna E; Ganz, Patricia A; Rowe, Kerry; Snyder, John; Wan, Yuan; Deshmukh, Vikrant; Newman, Michael; Fraser, Alison; Smith, Ken; Herget, Kim; Kirchhoff, Anne C; Abraham, Dev; Kim, Jaewhan; Monroe, Marcus; Hashibe, Mia

2018-05-29

Thyroid cancer survivors are at high risk to develop multiple cardiac and vascular conditions as consequence of cancer diagnosis and treatment; however, it is still unclear how baseline and prognostic factors, as well as cancer treatments, play a role in increasing cardiac and vascular disease risk among thyroid cancer survivors. To investigate the association between potential risk factors, treatment effects, and cardiovascular disease (CVD) outcomes in thyroid cancer survivors. Primary thyroid cancer survivors, diagnosed between 1997-2012, (n=3,822) were identified using the statewide Utah Population Database. Medical records were utilized to ascertain information on risk factors and CVD outcomes. Cox proportional hazards models were used to assess the risk of CVD with baseline demographics and clinical factors. Among thyroid cancer survivors, age and year at cancer diagnosis, cancer stage, sex, baseline BMI, baseline comorbidities, and thyroid-stimulating hormone (TSH) suppression therapy were significantly associated with CVD risk 1-5 years after cancer diagnosis. Patients who were male, overweight or obese, older at cancer diagnosis and diagnosed with cancer since 2005 had an increased risk of CVD compared to patients who were female, normal BMI, younger at cancer diagnosis and diagnosed with cancer between 1997-1999. Administration of TSH suppression therapy, distant metastases at cancer diagnosis, and higher Charlson Comorbidity Index (CCI) score were associated with an increased CVD risk among thyroid cancer survivors. Our findings suggest that examining the impact of thyroid cancer diagnosis, cancer treatment, and demographic characteristics on the risk of CVD is critical.

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.

Fertility concerns among child and adolescent cancer survivors and their parents: A qualitative analysis.

PubMed

Ellis, Sarah J; Wakefield, Claire E; McLoone, Jordana K; Robertson, Eden G; Cohn, Richard J

2016-01-01

Cancer diagnoses and treatment may have long-term effects on fertility. Semistructured interviews were administered to young cancer survivors (<20 years) and their parents (n = 97). Fertility related concerns were reported by 45 participants (46.4%). Themes included: distress regarding potential infertility; the effect of infertility on future relationships, self-esteem, and miscommunications/confusion about fertility status; access to fertility testing; and preservation options. Parents also reported challenges regarding how and when it was developmentally appropriate to talk to their children about fertility. The development of comprehensive consumer-driven approaches to managing the fertility concerns of young survivors and their families is essential.

Utah Cancer Survivors: A Comprehensive Comparison of Health-Related Outcomes Between Survivors and Individuals Without a History of Cancer.

PubMed

Fowler, Brynn; Ding, Qian; Pappas, Lisa; Wu, Yelena P; Linder, Lauri; Yancey, Jeff; Wright, Jennifer; Clayton, Margaret; Kepka, Deanna; Kirchhoff, Anne C

2018-02-01

Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs. 47 % of controls). Survivors reported the majority of their cancer survivorship care was managed by primary care physicians or non-cancer specialists (93.5 %, 95 % CI = 87.9-99.1). Furthermore, 71.1 % (95 % CI = 59.2-82.9) of survivors reported that they did not receive a cancer treatment summary. In multivariable estimates, fair/poor general health was more common among survivors compared to controls (17.8 %, 95 % CI = 12.5-23.1 vs. 14.2 %, 95 % CI = 12.4-16.0). Few survivors in Utah receive follow-up care from a cancer specialist. Provider educational efforts are needed to promote knowledge of cancer survivor issues. Efforts should be made to improve continuity in follow-up care that addresses the known issues of long-term survivors that preclude optimal quality of life, resulting in a patient-centered approach to survivorship.

Wide-ranging impacts reported by NZ cancer survivors: is supporting cancer survivor resilience a health sector role?

PubMed

O'Brien, Inga; Signal, Louise; Sarfati, Diana

2018-04-01

Cancer survivor numbers are on the rise but little is known about New Zealand (NZ) survivors' experiences with management of cancer-related impacts and vulnerability. This study explored the experiences and resilience of NZ cancer survivors and the experiences of healthcare practitioners who work with cancer survivors. There is a focus on indigenous Māori survivors. This study used qualitative methods to explore survivors and healthcare practitioners' views on cancer-related impact and management strategies. Two focus groups were conducted with mainly colorectal cancer survivors residing in the central regions of NZ. There was one Māori-only group (n = 6 participants) and one multicultural group (n = 18 participants). The Māori-only focus group was purposefully organised to provide a culturally safe setting for the research. In addition, 12 in-depth interviews were conducted with healthcare practitioners between October 2011 and March 2012. Wide-ranging survivorship impacts were described by survivors across physical, emotional, spiritual and social domains. Shame resilience and relationships, particularly with healthcare practitioners, were indicated as useful supports. Healthcare practitioners' time constraints and role priorities were identified as barriers to their ability to provide survivorship support. This study generated qualitative data on survivorship impacts and components of survivor resilience in NZ. It also provided insights into the need for better strategies and pathways to help the NZ health system be more responsive to both Māori and non-Māori survivors. Survivor impacts create vulnerabilities that are experienced and described differently by individuals and groups in NZ. Tailored survivor support that can enhance resilience and support relationships is needed in NZ.

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

Internet Use and Breast Cancer Survivors

ERIC Educational Resources Information Center

Muhamad, Mazanah; Afshari, Mojgan; Mohamed, Nor Aini

2011-01-01

A survey was administered to 400 breast cancer survivors at hospitals and support group meetings in Peninsular Malaysia to explore their level of Internet use and factors related to the Internet use by breast cancer survivors. Findings of this study indicated that about 22.5% of breast cancer survivors used Internet to get information about breast…

Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer: a report from the childhood cancer survivor study.

PubMed

Nathan, Paul Craig; Ness, Kirsten Kimberlie; Mahoney, Martin Christopher; Li, Zhenghong; Hudson, Melissa Maria; Ford, Jennifer Sylene; Landier, Wendy; Stovall, Marilyn; Armstrong, Gregory Thomas; Henderson, Tara Olive; Robison, Leslie L; Oeffinger, Kevin Charles

2010-10-05

Survivors of childhood cancer may develop a second malignant neoplasm during adulthood and therefore require regular surveillance. To examine adherence to population cancer screening guidelines by survivors at average risk for a second malignant neoplasm and adherence to cancer surveillance guidelines by survivors at high risk for a second malignant neoplasm. Retrospective cohort study. The Childhood Cancer Survivor Study (CCSS), a 26-center study of long-term survivors of childhood cancer that was diagnosed between 1970 and 1986. 4329 male and 4018 female survivors of childhood cancer who completed a CCSS questionnaire assessing screening and surveillance for new cases of cancer. Patient-reported receipt and timing of mammography, Papanicolaou smear, colonoscopy, or skin examination was categorized as adherent to the U.S. Preventive Services Task Force guidelines for survivors at average risk for breast or cervical cancer or the Children's Oncology Group guidelines for survivors at high risk for breast, colorectal, or skin cancer as a result of cancer therapy. In average-risk female survivors, 2743 of 3392 (80.9%) reported having a Papanicolaou smear within the recommended period, and 140 of 209 (67.0%) reported mammography within the recommended period. In high-risk survivors, rates of recommended mammography among women were only 241 of 522 (46.2%) and the rates of colonoscopy and complete skin examinations among both sexes were 91 of 794 (11.5%) and 1290 of 4850 (26.6%), respectively. Data were self-reported. Participants in the CCSS are a selected group of survivors, and their adherence may not be representative of all survivors of childhood cancer. Female survivors at average risk for a second malignant neoplasm show reasonable rates of screening for cervical and breast cancer. However, surveillance for new cases of cancer is very low in survivors at the highest risk for colon, breast, or skin cancer, suggesting that survivors and their physicians need

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.

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

Rectal Cancer Survivors' Participation in Productive Activities.

PubMed

Hornbrook, Mark C; Grant, Marcia; Wendel, Christopher; Bulkley, Joanna E; Mcmullen, Carmit K; Altschuler, Andrea; Temple, Larissa Kf; Herrinton, Lisa J; Krouse, Robert S

2017-01-01

Rectal cancer and its treatment impair survivors' productivity. To assess determinants of market and nonmarket employment, job search, volunteering, and homemaking among survivors five years or longer after diagnosis. We mailed questionnaires to 1063 survivors who were members of Kaiser Permanente (Northern California, Northwest) during 2010 and 2011. Productive activities, functional health status, and bowel management at the time of the survey. Response rate was 60.5% (577/953). Higher comorbidity burdens were associated with lower productivity for men and women rectal cancer survivors. Productive survivors were younger and had lower disease stage and age at diagnosis, higher household income and educational attainment, and fewer comorbidity burdens and workplace adjustments than did nonproductive survivors (p < 0.05 each; 2-sided). Productive rectal cancer survivors were evenly split by sex. Staying productive is associated with better mental health for rectal cancer survivors. Rectal cancer survivors with multiple chronic conditions, higher disease stage, lower productive activities, and older age need better access to medical care and closer monitoring of the quality of their care, including self-care. To capture the full extent of the involvement of survivors in all types of productive activities, research should routinely include measures of employment, searching for employment, homemaking, and volunteering. Counting market and nonmarket productive activities is innovative and recognizes the continuum of contributions survivors make to families and society. Health care systems should routinely monitor rectal cancer survivors' medical care access, comorbidities, health-related quality of life, and productive activities.

Childhood Cancer Survivors Are Living Longer

Cancer.gov

New data from the Childhood Cancer Survivor Study suggest that refinements in pediatric cancer treatment over the last few decades have helped to extend the lifespans of many survivors of childhood cancer.

Pregnancy and Labor Complications in Female Survivors of Childhood Cancer: The British Childhood Cancer Survivor Study

PubMed Central

Bright, Chloe J.; Winter, David L.; Fidler, Miranda M.; Wong, Kwok; Guha, Joyeeta; Kelly, Julie S.; Frobisher, Clare; Edgar, Angela B.; Skinner, Roderick; Wallace, W. Hamish B.; Hawkins, Mike M.

2017-01-01

Abstract Background: Female survivors of childhood cancer treated with abdominal radiotherapy who manage to conceive are at risk of delivering premature and low-birthweight offspring, but little is known about whether abdominal radiotherapy may also be associated with additional complications during pregnancy and labor. We investigated the risk of developing pregnancy and labor complications among female survivors of childhood cancer in the British Childhood Cancer Survivor Study (BCCSS). Methods: Pregnancy and labor complications were identified by linking the BCCSS cohort (n = 17 980) to the Hospital Episode Statistics (HES) for England. Relative risks (RRs) of pregnancy and labor complications were calculated by site of radiotherapy treatment (none/abdominal/cranial/other) and other cancer-related factors using log-binomial regression. All statistical tests were two-sided. Results: A total of 2783 singleton pregnancies among 1712 female survivors of childhood cancer were identified in HES. Wilms tumor survivors treated with abdominal radiotherapy were at threefold risk of hypertension complicating pregnancy (relative risk = 3.29, 95% confidence interval [CI] = 2.29 to 4.71), while all survivors treated with abdominal radiotherapy were at risk of gestational diabetes mellitus (RR = 3.35, 95% CI = 1.41 to 7.93) and anemia complicating pregnancy (RR = 2.10, 95% CI = 1.27 to 3.46) compared with survivors treated without radiotherapy. Survivors treated without radiotherapy had similar risks of pregnancy and labor complications as the general population, except survivors were more likely to opt for an elective cesarean section (RR = 1.39, 95% CI = 1.16 to 1.70). Conclusions: Treatment with abdominal radiotherapy increases the risk of developing hypertension complicating pregnancy in Wilms tumor survivors, and diabetes mellitus and anemia complicating pregnancy in all survivors. These patients may require extra vigilance during pregnancy

Siblings of Childhood Cancer Survivors.

ERIC Educational Resources Information Center

Gogan, Janis L.

This paper reports on a long term follow up study of siblings of childhood cancer survivors. Seventy siblings of childhood cancer survivors in 37 families were interviewed using a semi-structured format which included both forced choice and open ended questions. The children discussed their memories of the sibling's cancer diagnosis and treatment…

Morbidity and Mortality Differences Between Hematopoietic Cell Transplantation Survivors and Other Cancer Survivors.

PubMed

Chow, Eric J; Cushing-Haugen, Kara L; Cheng, Guang-Shing; Boeckh, Michael; Khera, Nandita; Lee, Stephanie J; Leisenring, Wendy M; Martin, Paul J; Mueller, Beth A; Schwartz, Stephen M; Baker, K Scott

2017-01-20

Purpose To compare the risks of serious health outcomes among hematopoietic cell transplantation (HCT) survivors versus a matched population of patients with cancer who did not undergo HCT, where the primary difference may be exposure to HCT. Methods Two-year HCT survivors treated at a comprehensive cancer center from 1992 through 2009 who were Washington State residents (n = 1,792; 52% allogeneic and 90% hematologic malignancies) were frequency matched by demographic characteristics and underlying cancer diagnosis (as applicable) to non-HCT 2-year cancer survivors, using the state cancer registry (n = 5,455) and the general population (n = 16,340) using driver's license files. Late outcomes for all three cohorts were ascertained from the state hospital discharge and death registries; subsequent cancers were ascertained from the state cancer registry. Results After median follow-up of 7.1 years, HCT survivors experienced significantly greater rates of hospitalization compared with matched non-HCT cancer survivors (280 v 173 episodes per 1,000 person-years, P < .001) and greater all-cause mortality (hazard ratio [HR], 1.1; 95% CI, 1.01 to 1.3). HCT survivors had more hospitalizations or death with infections (10-year cumulative incidence, 31% v 22%; HR, 1.4; 95% CI, 1.3 to 1.6) and respiratory complications (cumulative incidence, 27% v 20%; HR, 1.4; 95% CI, 1.2 to 1.5). Risks of digestive, skin, and musculoskeletal complications also were greater among HCT versus non-HCT cancer survivors. The two groups had similar risks of circulatory complications and second cancers. Both HCT and non-HCT cancer survivors had significantly greater 10-year cumulative incidences of all major organ-system outcomes versus the general population. Conclusion History of HCT was associated with late morbidity and mortality among cancer survivors. In particular, clinicians who care for HCT survivors should be aware of their high rates of late respiratory and infectious complications.

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. 
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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.

Detroit Research on Cancer Survivors Study

Cancer.gov

An NCI press release about the launch of the Detroit Research on Cancer Survivors (ROCS) study, which will look at factors affecting cancer progression, recurrence, mortality, and quality of life among African-American cancer survivors.

Financial Burden in Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study.

PubMed

Nipp, Ryan D; Kirchhoff, Anne C; Fair, Douglas; Rabin, Julia; Hyland, Kelly A; Kuhlthau, Karen; Perez, Giselle K; Robison, Leslie L; Armstrong, Gregory T; Nathan, Paul C; Oeffinger, Kevin C; Leisenring, Wendy M; Park, Elyse R

2017-10-20

Purpose Survivors of childhood cancer may experience financial burden as a result of health care costs, particularly because these patients often require long-term medical care. We sought to evaluate the prevalence of financial burden and identify associations between a higher percentage of income spent on out-of-pocket medical costs (≥ 10% of annual income) and issues related to financial burden (jeopardizing care or changing lifestyle) among survivors of childhood cancer and a sibling comparison group. Methods Between May 2011 and April 2012, we surveyed an age-stratified, random sample of survivors of childhood cancer and a sibling comparison group who were enrolled in the Childhood Cancer Survivor Study. Participants reported their household income, out-of-pocket medical costs, and issues related to financial burden (questions were adapted from national surveys on financial burden). Logistic regression identified associations between participant characteristics, a higher percentage of income spent on out-of-pocket medical costs, and financial burden, adjusting for potential confounders. Results Among 580 survivors of childhood cancer and 173 siblings, survivors of childhood cancer were more likely to have out-of-pocket medical costs ≥ 10% of annual income (10.0% v 2.9%; P < .001). Characteristics of the survivors of childhood cancer that were associated with a higher percentage of income spent on out-of-pocket costs included hospitalization in the past year (odds ratio [OR], 2.3; 95% CI, 1.1 to 4.9) and household income < $50,000 (OR, 5.5; 95% CI, 2.4 to 12.8). Among survivors of childhood cancer, a higher percentage of income spent on out-of-pocket medical costs was significantly associated with problems paying medical bills (OR, 8.9; 95% CI, 4.4 to 18.0); deferring care for a medical problem (OR, 3.0; 95% CI, 1.6 to 5.9); skipping a test, treatment, or follow-up (OR, 2.1; 95% CI, 1.1 to 4.0); and thoughts of filing for bankruptcy (OR, 6.6; 95% CI, 3.0 to

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

Educational attainment among long-term survivors of cancer in childhood and adolescence: a Norwegian population-based cohort study.

PubMed

Ghaderi, Sara; Engeland, Anders; Gunnes, Maria Winther; Moster, Dag; Ruud, Ellen; Syse, Astri; Wesenberg, Finn; Bjørge, Tone

2016-02-01

The number of young cancer survivors has increased over the past few decades due to improvement in treatment regimens, and understanding of long-term effects among the survivors has become even more important. Educational achievements and choice of educational fields were explored here. Five-year cancer survivors born in Norway during 1965-1985 (diagnosed <19 years) were included in our analysis by linking Norwegian population-based registries. Cox regression was applied to study the educational attainment among survivors of central nervous system (CNS) tumours, those assumed to have received CNS-directed therapy, and other cancer survivors relative to the cancer-free population. Logistic regression was used to compare the choice of educational fields between the cancer survivors at undergraduate and graduate level and the cancer-free population. Overall, a lower proportion of the cancer survivors completed intermediate (67 vs. 70 %), undergraduate (31 vs. 35 %) and graduate education (7 vs. 9 %) compared with the cancer-free population. Deficits in completion of an educational level were mainly observed among survivors of CNS-tumours and those assumed to have received CNS-directed therapy. Choices of educational fields among cancer survivors were in general similar with the cancer-free population at both undergraduate and graduate levels. Survivors of CNS-tumours and those assumed to have received CNS-directed therapy were at increased risk for educational impairments compared with the cancer-free population. Choices of educational fields were in general similar. Careful follow-up of the survivors of CNS-tumours and those assumed to have received CNS-directed therapy is important at each level of education.

Health care access and smoking cessation among cancer survivors: implications for the Affordable Care Act and survivorship care

PubMed Central

Steinberger, Eileen K.; Sorkin, John D.

2015-01-01

Purpose The study objectives are to examine prevalence of current smoking, and to assess the association of both health insurance (HI) and access to care with smoking cessation among cancer survivors. Methods We performed an analysis from a cross-sectional study of cancer survivors aged 18–64 years using nationally representative data from the 2009 Behavioral Risk Factor Surveillance System survey. We assessed the prevalence of current smoking among cancer survivors. Also, in a subset excluding never smokers, we assessed cessation status of cancer survivors operationalized as comparing current to former smokers. Results The study population (N=18,896) was predominantly 45–64 years of age, female, and white. The prevalence of current smoking was substantially greater among cancer survivors without HI (40.9 %) than for those with HI (19.5 %). Cancer survivors with no HI had 2-fold greater adjusted odds of not quitting cigarette smoking compared to those with HI. Among those with insurance, cancer survivors who did not have regular health care provider or could not see doctor due to cost or had their last routine checkup ≥1 year ago had 60–80 % fold greater adjusted odds of not quitting cigarette smoking compared to cancer survivors who had better access to health care. Conclusions Cancer survivors without HI have substantially greater current smoking rates compared with those with HI. Among cancer survivors with HI, those who experienced health care access-related problems had lower cessation rates than their counterparts. Implications for Cancer Survivors Smoking cessation needs to be recognized as a crucial component of preventive care for cancer survivors. Continuous patient engagement and cancer-patient-centered strategies are urgently needed to achieve optimal results for quit rates particularly for young cancer survivors who are most susceptible to current smoking. PMID:25862543

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.

Health and well-being in adolescent survivors of early childhood cancer: a report from the Childhood Cancer Survivor Study.

PubMed

Mertens, Ann C; Brand, Sarah; Ness, Kirsten K; Li, Zhenghong; Mitby, Pauline A; Riley, Anne; Patenaude, Andrea Farkas; Zeltzer, Lonnie

2014-03-01

With the growing number of childhood cancer survivors in the US, it is important to assess the well-being of these individuals, particularly during the transitional phase of adolescence. Data about adolescent survivors' overall health and quality of life will help identify survivor subgroups most in need of targeted attention to successfully transition to adulthood. This ancillary study to the Childhood Cancer Survivor Study focused on children 15-19 years of age who had been diagnosed with cancer before the age of 4 years. A cohort of siblings of pediatric cancer survivors of the same ages served as a comparison sample. Adolescent health was assessed using the Child Health and Illness Profile-Adolescent Edition (CHIP-AE) survey. The teen survey was sent to 444 survivor teens and 189 siblings. Of these, 307(69%) survivors and 97 (51%) siblings completed and returned the survey. The overall health profiles of siblings and survivors were similar. Among survivors, females scored significantly below males on satisfaction, discomfort, and disorders domains. Survivors diagnosed with central nervous system tumors scored less favorably than leukemia survivors in the global domains of satisfaction and disorders. In general, adolescent survivors fare favorably compared to healthy siblings. However, identification of the subset of pediatric cancer survivors who are more vulnerable to medical and psychosocial disorders in adolescence provides the opportunity for design and implementation of intervention strategies that may improve quality of life. Copyright © 2013 John Wiley & Sons, Ltd.

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

Risk and impact of pulmonary complications in survivors of childhood cancer: A report from the Childhood Cancer Survivor Study.

PubMed

Dietz, Andrew C; Chen, Yan; Yasui, Yutaka; Ness, Kirsten K; Hagood, James S; Chow, Eric J; Stovall, Marilyn; Neglia, Joseph P; Oeffinger, Kevin C; Mertens, Ann C; Robison, Leslie L; Armstrong, Gregory T; Mulrooney, Daniel A

2016-12-01

Pulmonary complications after cancer therapy are varied. This study describes pulmonary outcomes among childhood cancer survivors and evaluates their impact on daily activities. The incidence of pulmonary outcomes (asthma, chronic cough, emphysema, lung fibrosis, oxygen need, and recurrent pneumonia) reported among 5-year cancer survivors (n = 14,316) and the incidence of death due to pulmonary causes among all eligible survivors (n = 20,690) in the Childhood Cancer Survivor Study were compared with those for sibling controls (n = 4027) with cumulative incidence, standardized mortality ratio (SMR), and piecewise exponential models. Logistic regression with random effects was used to estimate odds ratios (ORs) and 95% confidence intervals (CIs) for activity limitations with pulmonary complications. By the age of 45 years, the cumulative incidence of any pulmonary condition was 29.6% (95% CI, 29.1%-30.0%) for cancer survivors and 26.5% (95% CI, 24.9%-28.0%) for siblings. Fewer survivors reported ever smoking (23.6% vs 36.4%, P < .001), but survivors were more likely to report chronic cough (rate ratio [RR], 1.6; 95% CI, 1.4-1.9), oxygen need (RR, 1.8; 95% CI, 1.5-2.2), lung fibrosis (RR, 3.5; 95% CI, 2.3-5.4), and recurrent pneumonia (RR, 2.0; 95% CI, 1.4-3.0). The SMR for death due to pulmonary causes was 5.9 (95% CI, 4.2-8.1), and it was associated with platinum exposure and lung radiation (P < .01). The impact of chronic cough on daily activities for survivors (OR vs survivors without chronic cough, 2.7) was greater than that for siblings (OR, 2.0; P = .04). Pulmonary complications are substantial among adult survivors of childhood cancer and can affect daily activities. Cancer 2016;122:3687-96. © 2016 American Cancer Society. © 2016 American Cancer Society.

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.

The influence of family management style on psychosocial problems of childhood cancer survivors in Korea.

PubMed

Kim, Dong Hee; Im, Yeo Jin

2015-04-01

To examine the psychosocial problems of childhood cancer survivors in Korea and investigate whether such problems are influenced by family management style. Family members of 158 childhood cancer survivors answered a questionnaire on demographic and illness characteristics, described psychosocial problems in their children using the Pediatric Symptom Checklist (PSC), and completed the Family Management Measure (FaMM). Perceived economic status and all six subscales of the FaMM were significantly correlated with children's psychosocial problems. In a multiple regression model, the Family Life Difficulty and Parental Mutuality scales of the FaMM were each independent predictors of psychosocial problems in young cancer survivors. A detailed care plan designed to (1) promote balance between the management of a child's condition and normal family life and (2) encourage parents to share their feelings with one another and provide mutual support should be required to improve psychosocial outcomes for childhood cancer survivors. Copyright © 2014 Elsevier Ltd. All rights reserved.

Cancer Support Needs for African American Breast Cancer Survivors and Caregivers.

PubMed

Haynes-Maslow, Lindsey; Allicock, Marlyn; Johnson, La-Shell

2016-03-01

Improved cancer screening and treatment advances have led to higher cancer survival rates in the United States. However, racial disparities in breast cancer survival persist for African American women who experience lower survival rates than white women. These disparities suggest that unmet needs related to survivorship still exist. This study focuses on the challenges that both African American cancer survivors and caregivers face across the cancer continuum. Five African American focus groups examined cancer survivor and caregiver support needs. Focus groups were recorded, transcribed, and uploaded into Atlas.ti. Thematic content analysis was applied to the text during the coding process. Themes were identified and emphasized based on the research team's integrated and unified final codes. Forty-one African Americans participated in five focus groups: 22 cancer survivors and 19 caregivers. Participants discussed five themes: (1) a culture that discourages the discussion of cancer; (2) lack of support services for African American cancer survivors; (3) lack of support services for cancer caregivers; (4) need for culturally appropriate cancer resources, including resources targeted at African American women; and (5) aspects that were helpful to cancer survivors and caregivers, including connecting with other survivors and caregivers, and having strong social support networks. We gained new insight into the unmet support needs for survivors and caregivers, especially when coping with the cancer experience continuum. While some cancer and caregiver support services exist, our study reveals a great need for services that incorporate the cultural differences that exist across races.

Working with cancer: health and employment among cancer survivors.

PubMed

Clarke, Tainya C; Christ, Sharon L; Soler-Vila, Hosanna; Lee, David J; Arheart, Kristopher L; Prado, Guillermo; Martinez, Alberto Caban; Fleming, Lora E

2015-11-01

Cancer affects a growing proportion of US workers. Factors contributing to whether they continue or return to work after cancer diagnosis include: age, physical and mental health, health insurance, education, and cancer site. The purpose of this study was to assess the complex relationships between health indicators and employment status for adult cancer survivors. We analyzed pooled data from the 1997-2012 US National Health Interview Survey (NHIS). Our sample included adults with a self-reported physician diagnosis of cancer (n = 24,810) and adults with no cancer history (n = 382,837). Using structural equation modeling (SEM), we evaluated the relationship between sociodemographic factors, cancer site, and physical and mental health indicators on the overall health and employment status among adults with a cancer history. The overall model for cancer survivors fit the data well (χ(2) (374) = 3654.7, P < .001; comparative fit index = 0.98; root mean square error of approximation = 0.04). Although black cancer survivors were less likely to report good-to-excellent health, along with Hispanic survivors, they were more likely to continue to work after diagnosis compared with their white counterparts. Health insurance status and educational level were strongly and positively associated with health status and current employment. Age and time since diagnosis were not significantly associated with health status or employment, but there were significant differences by cancer site. A proportion of cancer survivors may continue to work because of employment-based health insurance despite reporting poor health and significant physical and mental health limitations. Acute and long-term health and social support are essential for the continued productive employment and quality of life of all cancer survivors. Copyright © 2015 Elsevier Inc. All rights reserved.

Surveillance for cancer recurrence in long-term young breast cancer survivors randomly selected from a statewide cancer registry.

PubMed

Jones, Tarsha; Duquette, Debra; Underhill, Meghan; Ming, Chang; Mendelsohn-Victor, Kari E; Anderson, Beth; Milliron, Kara J; Copeland, Glenn; Janz, Nancy K; Northouse, Laurel L; Duffy, Sonia M; Merajver, Sofia D; Katapodi, Maria C

2018-05-01

This study examined clinical breast exam (CBE) and mammography surveillance in long-term young breast cancer survivors (YBCS) and identified barriers and facilitators to cancer surveillance practices. Data collected with a self-administered survey from a statewide, randomly selected sample of YBCS diagnosed with invasive breast cancer or ductal carcinoma in situ younger than 45 years old, stratified by race (Black vs. White/Other). Multivariate logistic regression models identified predictors of annual CBEs and mammograms. Among 859 YBCS (n = 340 Black; n = 519 White/Other; mean age = 51.0 ± 5.9; diagnosed 11.0 ± 4.0 years ago), the majority (> 85%) reported an annual CBE and a mammogram. Black YBCS in the study were more likely to report lower rates of annual mammography and more barriers accessing care compared to White/Other YBCS. Having a routine source of care, confidence to use healthcare services, perceived expectations from family members and healthcare providers to engage in cancer surveillance, and motivation to comply with these expectations were significant predictors of having annual CBEs and annual mammograms. Cost-related lack of access to care was a significant barrier to annual mammograms. Routine source of post-treatment care facilitated breast cancer surveillance above national average rates. Persistent disparities regarding access to mammography surveillance were identified for Black YBCS, primarily due to lack of access to routine source of care and high out-of-pocket costs. Public health action targeting cancer surveillance in YBCS should ensure routine source of post-treatment care and address cost-related barriers. Clinical Trials Registration Number: NCT01612338.

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.

Health Behaviors and Quality of Life Among Colorectal Cancer Survivors

PubMed Central

Rohan, Elizabeth A.; Townsend, Julie S.; Fairley, Temeika L.; Stewart, Sherri L.

2015-01-01

Purpose To examine, at the population level, health behaviors, comorbidities, and health-related quality of life among colorectal cancer (CRC) survivors compared with other cancer survivors and persons without cancer. Methods We used data from the 2009 and 2010 Behavioral Risk Factor Surveillance System cancer survivor modules. We calculated descriptive statistics, conducted chi-square tests for comparisons, and used multivariable logistic regression analysis to compare CRC survivors with other cancer survivors and persons without cancer. Results Of the 52,788 cancer survivors included in this analysis, 4001 reported being CRC survivors. When compared with other cancer survivors, CRC survivors reported higher percentages of obesity and lack of physical activity; however, they had lower levels of current smoking. Adjusted results show that CRC survivors were significantly more likely to report lack of physical activity, fair/poor health, and other chronic health conditions compared with persons without a cancer diagnosis. Conversely, CRC survivors reported lower levels of current smoking than persons without cancer. Conclusions CRC survivors have a higher proportion of heath conditions and behaviors that may significantly increase their risks for recurrence or development of a second cancer. Targeted interventions to address these health issues should be considered. PMID:25736006

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

Health behaviors and quality of life among colorectal cancer survivors.

PubMed

Rohan, Elizabeth A; Townsend, Julie S; Fairley, Temeika L; Stewart, Sherri L

2015-03-01

To examine, at the population level, health behaviors, comorbidities, and health-related quality of life among colorectal cancer (CRC) survivors compared with other cancer survivors and persons without cancer. We used data from the 2009 and 2010 Behavioral Risk Factor Surveillance System cancer survivor modules. We calculated descriptive statistics, conducted chi-square tests for comparisons, and used multivariable logistic regression analysis to compare CRC survivors with other cancer survivors and persons without cancer. Of the 52,788 cancer survivors included in this analysis, 4001 reported being CRC survivors. When compared with other cancer survivors, CRC survivors reported higher percentages of obesity and lack of physical activity; however, they had lower levels of current smoking. Adjusted results show that CRC survivors were significantly more likely to report lack of physical activity, fair/poor health, and other chronic health conditions compared with persons without a cancer diagnosis. Conversely, CRC survivors reported lower levels of current smoking than persons without cancer. CRC survivors have a higher proportion of heath conditions and behaviors that may significantly increase their risks for recurrence or development of a second cancer. Targeted interventions to address these health issues should be considered. Copyright © 2015 by the National Comprehensive Cancer Network.

Cardiac Mortality Among 200 000 Five-Year Survivors of Cancer Diagnosed at 15 to 39 Years of Age

PubMed Central

Henson, Katherine E.; Reulen, Raoul C.; Winter, David L.; Bright, Chloe J.; Fidler, Miranda M.; Frobisher, Clare; Guha, Joyeeta; Wong, Kwok F.; Kelly, Julie; Edgar, Angela B.; McCabe, Martin G.; Whelan, Jeremy; Cutter, David J.; Darby, Sarah C.

2016-01-01

Background: Survivors of teenage and young adult cancer are acknowledged as understudied. Little is known about their long-term adverse health risks, particularly of cardiac disease that is increased in other cancer populations where cardiotoxic treatments have been used. Methods: The Teenage and Young Adult Cancer Survivor Study cohort comprises 200 945 5-year survivors of cancer diagnosed at 15 to 39 years of age in England and Wales from 1971 to 2006, and followed to 2014. Standardized mortality ratios, absolute excess risks, and cumulative risks were calculated. Results: Two thousand sixteen survivors died of cardiac disease. For all cancers combined, the standardized mortality ratios for all cardiac diseases combined was greatest for individuals diagnosed at 15 to 19 years of age (4.2; 95% confidence interval, 3.4–5.2) decreasing to 1.2 (95% confidence interval, 1.1–1.3) for individuals aged 35 to 39 years (2P for trend <0.0001). Similar patterns were observed for both standardized mortality ratios and absolute excess risks for ischemic heart disease, valvular heart disease, and cardiomyopathy. Survivors of Hodgkin lymphoma, acute myeloid leukaemia, genitourinary cancers other than bladder cancer, non-Hodgkin lymphoma, lung cancer, leukaemia other than acute myeloid, central nervous system tumour, cervical cancer, and breast cancer experienced 3.8, 2.7, 2.0, 1.7, 1.7, 1.6, 1.4, 1.3 and 1.2 times the number of cardiac deaths expected from the general population, respectively. Among survivors of Hodgkin lymphoma aged over 60 years, almost 30% of the total excess number of deaths observed were due to heart disease. Conclusions: This study of over 200 000 cancer survivors shows that age at cancer diagnosis was critical in determining subsequent cardiac mortality risk. For the first time, risk estimates of cardiac death after each cancer diagnosed between the ages of 15 and 39 years have been derived from a large population-based cohort with prolonged

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.

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

Access to Preventive Health Care for Cancer Survivors

PubMed Central

Yabroff, K. Robin; Short, Pamela Farley; Machlin, Steven; Dowling, Emily; Rozjabek, Heather; Li, Chunyu; McNeel, Timothy; Ekwueme, Donatus U.; Virgo, Katherine S.

2013-01-01

Background Access to healthcare, particularly effective primary and secondary preventive care, is critical for cancer survivors, in order to minimize the adverse sequelae of cancer and its treatment. Purpose The goal of the study was to evaluate the association between cancer survivorship and access to primary and preventive health care. Methods Cancer survivors (n=4960) and individuals without a cancer history (n=64,431) aged ≥18 years, from the 2008–2010 Medical Expenditure Panel Survey (MEPS), were evaluated. Multiple measures of access and preventive services use were compared. The association between cancer survivorship and access and preventive services was evaluated with multivariate logistic regression models, stratified by age group (18–64 years and ≥65 years), controlling for the effects of age, gender, race/ethnicity, education, marital status, and comorbidities. Data were analyzed in 2013. Results Cancer survivors aged ≥65 years had equivalent or greater access and preventive services use than individuals without a cancer history, in adjusted analyses. However, among those aged 18–64 years with private health insurance, cancer survivors were more likely than other individuals to have a usual source of care and to use preventive services, whereas uninsured or publicly insured cancer survivors were generally less likely to have a usual source of care and to use preventive services than were uninsured or publicly insured adults without a cancer history. Conclusions Although access and preventive care use in cancer survivors is generally equivalent or greater compared to that of other individuals, disparities for uninsured and publicly insured cancer survivors aged 18–64 years suggest that improvements in survivor care are needed. PMID:23953357

Survivor identity after colorectal cancer: antecedents, prevalence and outcomes.

PubMed

Chambers, Suzanne K; Baade, Peter; Meng, Xingqiong; Youl, Pip; Aitken, Joanne; Dunn, Jeff

2012-09-01

Cancer survivor identity has become a dominant paradigm in describing people with cancer and in driving the focus of programmes and research in supportive care. This study investigated antecedents of survivor identity adoption and population-based prevalence. A prospective survey of a population-based sample of 1966 (57% response) patients with colorectal cancer assessed socio-demographic variables, health behaviours, optimism, benefit finding, cancer threat appraisal, psychological distress and satisfaction with life at 5 months post-diagnosis as predictors of survivor identity 5 years subsequently. Prevalence of survivor identity at 5 years post-diagnosis and psychological and lifestyle outcomes (n = 786) were later assessed. Fifty-five per cent of people identified as a cancer survivor, 39.4% as a person who had had (or has) cancer, 1.4% as a cancer patient and 1.2% as a cancer victim. People who were older and who reported higher personal growth after diagnosis were more likely to assume a survivor identity at 5 years. At 5 years, survivors had higher benefit finding and better satisfaction with life. Cancer survivors uniquely reported a significant decrease in somatization and acceptance, and increases in satisfaction with life and physical activity over time. For patients with colorectal cancer, the cancer survivor identity is common but not universal 5 years after diagnosis; and may evolve from looking for benefit after cancer through personal growth. People who adopt a cancer survivor identity report more positive adjustment outcomes after cancer and this has implications for the design of clinical and community support interventions. Copyright © 2011 John Wiley & Sons, Ltd. Copyright © 2011 John Wiley & Sons, Ltd.

Erectile Dysfunction in Male Survivors of Childhood Cancer-A Report From the Childhood Cancer Survivor Study.

PubMed

Ritenour, Chad W M; Seidel, Kristy D; Leisenring, Wendy; Mertens, Ann C; Wasilewski-Masker, Karen; Shnorhavorian, Margarett; Sklar, Charles A; Whitton, John A; Stovall, Marilyn; Constine, Louis S; Armstrong, Gregory T; Robison, Leslie L; Meacham, Lillian R

2016-06-01

With survival rates higher than 80%, the number of survivors from pediatric cancer continues to increase. Late effects resulting from cancer and cancer therapy are being characterized, but little information exists on sexual health for men who have survived childhood cancer. To assess erectile dysfunction (ED) in men who survived childhood and adolescent cancers and to identify potential risk factors for ED. In total, 1,622 men and 271 eligible brothers in the Childhood Cancer Survivor Study cohort completed the Male Health Questionnaire, which provided information on sexual practices and sexual function. Combined with demographic, cancer, and treatment information from medical record abstraction, results of the Male Health Questionnaire were analyzed using multivariable modeling. The International Index of Erectile Function was used to identify ED in subjects. International Index of Erectile Function. Survivors (mean age = 37.4 years, SD = 7.3 years) reported significantly lower sexual activity in the year before the survey than the brothers (mean age = 38.8 years, SD = 8.5 years) without cancer. ED was reported by 12.3% (95% CI = 10.4-14.3) of survivors and 4.2% (95% CI = 2.0-7.9) of brothers. Survivors showed significantly higher relative risk (RR) for ED (RR = 2.63, 95% CI = 1.40-4.97). In addition to older age, survivors who were exposed to higher-dose (≥10 Gy) testicular radiation (RR = 3.55, 95% CI = 1.53-8.24), had surgery on the spinal cord or nerves (RR = 2.87, 95% CI = 1.36-6.05), prostate surgery (RR = 6.56, 95% CI = 3.84-11.20), or pelvic surgery (RR = 2.28, 95% CI = 1.04-4.98) were at higher risk for ED. Men who have survived childhood cancer have a greater than 2.6-fold increased risk for ED and certain cancer-specific treatments are associated with increased risk. Attention to sexual health, with its physical and emotional implications, and opportunities for early detection and intervention in these individuals could be important

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.

[Psychosocial issues of long-term cancer survivors].

PubMed

Weis, J; Faller, H

2012-04-01

Although cancer incidence rates are increasing, recent statistical studies suggest that cancer patients are showing higher cure rates as well as improved overall survival rates for most cancer locations. These advances are explained by improved strategies in early diagnoses as well as improved cancer therapies. Therefore, the number of long-term cancer survivors has also increased, but only few studies, especially within the last years, have focused on psychosocial issues of this subgroup. Some studies show that overall quality of life of long-term cancer survivors is quite high and comparable to that of the normal population. Nevertheless, a substantial percentage of former patients shows reduced quality of life and suffers from various sequelae of cancer and its treatment. This review focuses on the most common psychosocial issue of long-term survivors such as reduced psychological wellbeing, neuropsychological deficits and cancer-related fatigue syndrome. Finally, recommendations for problem-oriented interventions as well as improvement of psychosocial care of long-term survivors are given.

Transition from patient to survivor in African American breast cancer survivors.

PubMed

Mollica, Michelle; Nemeth, Lynne

2015-01-01

Breast cancer is the most common cancer among African American (AA) women, with a survival rate of 79%, lower than for other ethnic and racial groups in the United States. Minorities experience disparities in timeliness of care, delivery of culturally sensitive care, and outcomes. Transition from active treatment to survivorship presents an opportunity for exploration. This qualitative, grounded theory study examined the experiences and coping of AA women as they transition from being a breast cancer patient to being a breast cancer survivor. This study included 15 community-based AA women aged 35 to 75 years in Charleston, South Carolina, and Buffalo, New York, who had completed treatment for primary breast cancer between 6 and 18 months prior. A semistructured interview explored experiences as they finished treatment, support from family, role of spirituality, physical and emotional concerns, needs of the survivor, as well as suggestions for possible interventions for other survivors. Two investigators reviewed transcripts and coding to confirm and refine the findings. Four main themes were identified: perseverance through struggles supported by reliance on faith, persistent physical issues, anticipatory guidance needed after treatment, and emotional needs as important as physical. The transition from cancer patient to survivor is a pervasive time filled with stress, loss of safety net, and significant coping measures. Participants expressed the need to have support from another AA breast cancer survivor as they complete treatment. Nurses and providers can assess and address stressors in transition. Nurses should design patient-centered interventions using peers as direct support to promote effective coping strategies.

Mental health insurance access and utilization among childhood cancer survivors: a report from the childhood cancer survivor study.

PubMed

Perez, Giselle K; Kirchhoff, Anne C; Recklitis, Christopher; Krull, Kevin R; Kuhlthau, Karen A; Nathan, Paul C; Rabin, Julia; Armstrong, Gregory T; Leisenring, Wendy; Robison, Leslie L; Park, Elyse R

2018-04-15

To describe and compare the prevalence of mental health access, preference, and use among pediatric cancer survivors and their siblings. To identify factors associated with mental health access and use among survivors. Six hundred ninety-eight survivors in the Childhood Cancer Survivor Study (median age = 39.4; median years from diagnosis = 30.8) and 210 siblings (median age = 40.4) were surveyed. Outcomes included having mental health insurance coverage, delaying care due to cost, perceived value of mental health benefits, and visiting a mental health provider in the past year. There were no differences in mental health access, preferences, and use between survivors and siblings (p > 0.05). Among respondents with a history of distress, most reported not having seen a mental health provider in the past year (80.9% survivors vs. 77.1% siblings; p = 0.60). Uninsured survivors were more likely to defer mental health services due to cost (24.6 vs. 8.4%; p < 0.001). In multivariable models, males (OR = 2.96) and survivors with public (OR = 6.61) or employer-sponsored insurance (ESI; OR = 14.37) were more likely to have mental health coverage. Most childhood cancer survivors value having mental healthcare benefits; however, coverage and use of mental health services remain suboptimal. The most vulnerable of survivors, specifically the uninsured and those with a history of distress, are at risk of experiencing challenges accessing mental health care. Childhood cancer survivors are at risk for experiencing high levels of daily life stress that is compounded by treatment-related sequelae. Integrative, system-based approaches that incorporate financial programs with patient education about insurance benefits can help reduce some of the financial barriers survivors face.

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

Prevalence and correlates of health information-seeking among Hispanic and non-Hispanic childhood cancer survivors.

PubMed

Miller, Kimberly A; Ramirez, Cynthia N; Wojcik, Katherine Y; Ritt-Olson, Anamara; Baezconde-Garbanati, Lourdes; Thomas, Stefanie M; Freyer, David R; Hamilton, Ann S; Milam, Joel E

2018-04-01

Childhood cancer survivors (CCS) report high unmet information needs. This study examined the prevalence of cancer-related information-seeking among CCS and investigated associations between information-seeking behavior and positive health outcomes such as follow-up care. Participants (n = 193) were young adult CCS diagnosed with cancer in Los Angeles County, 54% of Hispanic ethnicity, with a mean age of 19.87, in remission, and at least 2 years from completion of treatment. CCS were asked where they accessed health information related to their cancer with response options categorized into four information domains: hospital resources, social media, other survivors, and family members. Multivariable logistic regression was used to assess variables associated with each information domain, including sociodemographics, post-traumatic growth (i.e., reporting positive changes since cancer diagnosis), health care engagement, level of education, and health insurance status. Hospital resources were the most commonly accessed information domain (65.3%), and CCS of Hispanic ethnicity (vs. non-Hispanic) were more likely to access this source. Seeking information from other cancer survivors was positively associated with follow-up care and post-traumatic growth. Hispanic CCS were marginally less likely to seek information from other survivors and family than non-Hispanics. While CCS obtain information from a variety of sources, hospital resources are an important site for access, particularly for individuals of Hispanic ethnicity. Information sharing between survivors may promote positive health care engagement; however, Hispanic CCS may be less likely to utilize this resource and may face barriers in information sharing with other cancer survivors.

Exercise, inflammation, and fatigue in cancer survivors

PubMed Central

LaVoy, Emily C.P.; Fagundes, Christopher P.; Dantzer, Robert

2016-01-01

Cancer-related fatigue significantly disrupts normal functioning and quality of life for a substantial portion of cancer survivors, and may persist for years following cancer treatment. While the causes of persistent fatigue among cancer survivors are not yet fully understood, accumulating evidence suggests that several pathways, including chronic inflammation, autonomic imbalance, HPA-axis dysfunction, and/or mitochondrial damage, could contribute towards the disruption of normal neuronal function and result in the symptom of cancer-related fatigue. Exercise training interventions have been shown to be some of the more successful treatment options to address cancer-related fatigue. In this review, we discuss the literature regarding the causes of persistent fatigue in cancer survivors and the mechanisms by which exercise may relieve this symptom. There is still much work to be done until the prescription of exercise becomes standard practice for cancer survivors. With improvements in the quality of studies, evidenced-based exercise interventions will allow exercise scientists and oncologists to work together to treat cancer-related fatigue. PMID:26853557

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

Association Between Sarcopenia and Metabolic Syndrome in Cancer Survivors.

PubMed

Lee, Su Jung; Kim, Nam Cho

Advanced cancer treatments have improved survival from cancer, but the incidence of cardiovascular disease in survivors has recently increased. Sarcopenia and metabolic syndrome (MetS) are related to cancer survival, and sarcopenia is an emerging risk factor for cardiovascular disease. However, evidence of a relationship between sarcopenia and MetS in cancer survivors is lacking. The aims of this study were to determine the prevalence of sarcopenia and MetS in cancer survivors and to investigate independent predictors of MetS in cancer survivors. From the fourth and fifth Korea National Health and Nutritional Exam Survey (2008-2011), 798 consecutive cancer survivors were analyzed. Sarcopenia was defined as the appendicular skeletal muscle mass divided by weight less than 1 SD below the sex-specific healthy population aged 20 to 39 years. Metabolic syndrome was defined using the National Cholesterol Education Program definition. Among 798 cancer survivors, the prevalence rates of sarcopenia and MetS were 23.1% and 30.0%, respectively. Survivors with sarcopenia were more likely to have a higher waist circumference, body mass index, triglyceride level, and blood pressure and to have a lower high-density lipoprotein cholesterol level compared with those without sarcopenia. In multivariable analysis, sarcopenia was an independent predictor of MetS (odds ratio, 2.76; 95% confidence interval, 1.92-3.97). In addition, age and type of cancer were independent predictors of MetS. Sarcopenia was associated with an increased prevalence of MetS in cancer survivors. Interventions to prevent sarcopenia may be necessary to improve cardiovascular outcome in cancer survivors.

Nature-based experiences and health of cancer survivors.

PubMed

Ray, Heather; Jakubec, Sonya L

2014-11-01

Although exposure to, and interaction with, natural environments are recognized as health-promoting, little is understood about the use of nature contact in treatment and rehabilitation for cancer survivors. This narrative review summarizes the literature exploring the influence of nature-based experiences on survivor health. Key databases included CINAHL, EMBASE, Medline, Web of Science, PubMed, PsycArticles, ProQuest, and Cancerlit databases. Sixteen articles met inclusion criteria and were reviewed. Four major categories emerged: 1) Dragon boat racing may enhance breast cancer survivor quality of life, 2) Natural environment may counteract attentional fatigue in newly diagnosed breast cancer survivors, 3) Adventure programs provide a positive experience for children and adolescent survivors, fostering a sense of belonging and self-esteem, and 4) Therapeutic landscapes may decrease state-anxiety, improving survivor health. This review contributes to a better understanding of the therapeutic effects of nature-based experiences on cancer survivor health, providing a point of entry for future study. Copyright © 2014 Elsevier Ltd. All rights reserved.

Cancer-related identity and positive affect in survivors of prostate cancer.

PubMed

Bellizzi, Keith M; Blank, Thomas O

2007-03-01

Despite a shift in the cancer culture and language used to describe individuals diagnosed with this disease, the extent to which individuals with cancer adopt a particular cancer-related identity and the impact of these identities in relation to their well-being is virtually unknown. Using a cross-sectional study design and a metropolitan tumor registry, a mail questionnaire to examine post-treatment quality of life was sent to prostate cancer (PCa) survivors. The sample consisted of 490 PCa survivors, ranging in age from 49-88 (M = 69.7; SD = 7.8), one to eight years after diagnosis. The outcome measure used in these analyses was the PANAS to assess positive and negative affect. The most frequently reported cancer-related identity was "someone who has had PCa" (57%). The least reported self view was "victim" (1%). Twenty-six percent of men self-identified as "survivors" while 6% thought of themselves as "cancer conquerors." Only 9% self-identified as a "patient." Multivariate analyses, adjusted for potential confounders, show respondents who identified themselves as "survivors" or "cancer conquerors" reported significantly higher scores on positive affect than men who self-identified as "patients" (p < .001). Although the majority of respondents identified themselves as "someone who has had cancer," identifying as a "survivor" or "someone who has conquered cancer" appears to have adaptive value for positive mood. Those who perceive themselves as survivors of prostate cancer may derive some benefit in well-being associated with this self assessment.

Long-term psychological and educational outcomes for survivors of neuroblastoma: A report from the Childhood Cancer Survivor Study.

PubMed

Zheng, Daniel J; Krull, Kevin R; Chen, Yan; Diller, Lisa; Yasui, Yutaka; Leisenring, Wendy; Brouwers, Pim; Howell, Rebecca; Lai, Jin-Shei; Balsamo, Lyn; Oeffinger, Kevin C; Robison, Leslie L; Armstrong, Gregory T; Kadan-Lottick, Nina S

2018-06-11

Neuroblastoma survivors may be at elevated risk for psychological impairments because of their young age at diagnosis and neurotoxic treatment, but this is not well described. A total of 859 ≥5-year survivors of neuroblastoma younger than 18 years (diagnosed in 1970-1999), who had a median age at diagnosis of 0.8 years (range: 0.0-7.3 years) and a median follow-up of 13.3 years (range: 8.0-17.9 years), were compared with 872 siblings of childhood cancer survivors who were younger than 18 years with the parent-reported Behavior Problem Index (BPI) for psychological functioning. Age- and sex-adjusted multivariate log-binomial models were used to identify factors associated with impairment in BPI domains (scores worse than the sibling 10th percentile). The impact of psychological impairment on educational outcomes was examined among survivors. Compared with siblings, neuroblastoma survivors had an increased prevalence of impairment in the domains of anxiety/depression (19% vs 14%; P = .003), headstrong behavior (19% vs 13%; P < .001), attention deficits (21% vs 13%; P < .001), peer conflict/social withdrawal (26% vs 17%; P < .001), and antisocial behavior (16% vs 12%; P = .01). Common treatment exposures (vincristine, cisplatin, and retinoic acid) were not associated with impairment. Having 2 or more chronic health conditions predicted impairment in 4 domains (P < .001). Specifically, pulmonary disease predicted impairment in all 5 domains (P ≤ .004). Endocrine disease (P ≤ .004) and peripheral neuropathy (P ≤ .02) each predicted impairment in 3 domains. Psychological impairment was associated with special education service usage and educational attainment less than college. Neuroblastoma survivors are at elevated risk for psychological impairment, which is associated with special education service usage and lower adult educational attainment. Those with chronic health conditions may represent a high-risk group for targeted

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.

American Indian Women Cancer Survivor's Needs and Preferences: Community Support for Cancer Experiences.

PubMed

Burnette, Catherine E; Roh, Soonhee; Liddell, Jessica; Lee, Yeon-Shim

2018-03-15

Cancer (the focus of this inquiry) is the leading cause of death among American Indian and Alaska Native women. The purpose of this study was to identify American Indian women cancer survivors' needs and preferences related to community supports for their cancer experience. This qualitative study examined female American Indian cancer survivors' needs and preferences about community support. The sample included 43 American Indian women cancer survivors (the types of cancer survivors included cervical cancer: n = 14; breast cancer: n = 14; and colon and other types: n = 15) residing in the Northern Plains region, in the state of South Dakota. Data were analyzed using qualitative content analysis and were collected between June of 2014 and February of 2015. When asked about their needs and preferences, 82% of participants (n = 35) of female American Indian cancer survivors reported at least one of the following most commonly reported themes: cancer support groups (n = 31, 72%), infrastructure for community support (n = 17, 40%), and cancer education (n = 11, 26%). In addition to the aforementioned themes, 33% of participants (n = 14) indicated the need for an improved healthcare system, with 11% (n = 5) of participants expressly desiring the integration of spirituality and holistic healing options. The majority of American Indian women cancer survivor participants of this study identified a need for more community-based support systems and infrastructures to aid with the cancer survivor experience. Results warrant a community approach to raise awareness, education, and support for American Indian cancer survivors.

POST-TREATMENT REGRET AMONG YOUNG BREAST CANCER SURVIVORS

PubMed Central

Bloom, Joan R.

2010-01-01

Objective The study addresses: (1) what women regret about their breast cancer treatment five years later, and (2) what characteristics of disease and treatment predict post-treatment regret. Method Interviews were conducted with breast cancer survivors in the San Francisco Bay Area. Participants were interviewed following diagnosis. Five years later, women were asked whether they had any regrets about their cancer treatment (N=449). Qualitative analysis was used to identify regret content, and logistic regression was used to determine what characteristics of treatment predicted regret. Results 42.5% of women in the sample regretted some aspect of treatment. The most common regrets were primary surgery (24.1%), chemotherapy and/or radiation (21.5%), reconstruction (17.8%), and problems with providers (13.1%). In addition, women regretted inactions (59.2%) (actions that they did not take) more than actions that they did take (30.4%). This represents a novel finding in the study of post-treatment regret, which has largely focused on regrets over actions. Quantitative analysis revealed that women who were anxious about the future (OR=1.32; p=.03) or had problems communicating with physicians (OR=1.26; p=.02) during treatment were more likely to express regret 5 years later. In addition, women with new or recurrent cancers 5 years later were significantly more likely to regret some aspect of their primary treatment (OR=5.81; p<.001). Conclusion This research supports addressing the psychosocial aspects of cancer care and improving physician-patient communication. Evidence is also provided for addressing the unique emotional needs of women with recurrent cancers, who may experience an undue burden of regret. PMID:20878843

Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society's Study of Cancer Survivors-I.

PubMed

Playdon, Mary; Ferrucci, Leah M; McCorkle, Ruth; Stein, Kevin D; Cannady, Rachel; Sanft, Tara; Cartmel, Brenda

2016-08-01

Survivorship care plans (SCPs) provide cancer patients and health care providers with a treatment summary and outline of recommended medical follow-up. Few studies have investigated the information needs and preferred sources among long-term cancer survivors. Cancer survivors of the ten most common cancers enrolled in the longitudinal Study of Cancer Survivors-I (SCS-I) completed a survey 9 years post-diagnosis (n = 3138); at time of diagnosis of the SCS-I cohort, SCPs were not considered usual care. We assessed participants' current desire and preferred sources for information across ten SCP items and evaluated factors associated with information need 9 years after diagnosis. The proportion of long-term cancer survivors endorsing a need for cancer and health information 9 years post-diagnosis ranged from 43 % (cancer screening) to 9 % (consequences of cancer on ability to work). Print media and personalized reading materials were the most preferred information sources. Younger age, higher education, race other than non-Hispanic white, later cancer stage, having breast cancer, having ≥2 comorbidities, and self-reporting poor health were associated with greater informational need (p < 0.05). Long-term cancer survivors continue to report health information needs for most SCP items and would prefer a print format; however, level of need differs by socio-demographic and cancer characteristics. Cancer survivors who did not previously receive a SCP may still benefit from receiving SCP content, and strategies for enabling dissemination to long-term survivors warrant further investigation.

Cancer Prevention and Screening Practices of Siblings of Childhood Cancer Survivors: A Report from the Childhood Cancer Survivor Study

PubMed Central

Buchbinder, David; Mertens, Ann C.; Zeltzer, Lonnie K.; Leisenring, Wendy; Goodman, Pam; Lown, E. Anne; Alderfer, Melissa A.; Recklitis, Christopher; Oeffinger, Kevin; Armstrong, Gregory T.; Hudson, Melissa; Robison, Leslie L.; Casillas, Jacqueline

2012-01-01

Objective To compare the skin and breast/cervical cancer prevention/screening practices of adult siblings of childhood cancer survivors with controls and to identify modifying factors for these practices. Methods Cross-sectional, self-report data from 2,588 adult siblings of 5+ year survivors of childhood cancer were analyzed to assess cancer prevention/screening practices. Two age, sex and race/ethnicity-matched samples (n=5,915 and n=37,789) of the Behavioral Risk Factor Surveillance System participants served as the comparison populations. Sociodemographic and cancer-related data were explored as modifying factors for sibling cancer prevention/screening practices through multivariable logistic regression. Results Compared to controls, siblings were more likely to practice skin cancer prevention behaviors: use of protective clothing (OR 2.85, 95% 2.39-3.39), use of shade (OR 2. 11, 95% 1.88-2.36), use of sunscreen (OR 1.27, 95% 1.14-1.40), and wearing a hat (OR 1.77, 95% 1.58-1.98). No differences were noted for breast/cervical cancer screening including mammography and Pap testing. Having less than a high school education and lack of health insurance were associated with diminished cancer prevention/screening behaviors. Survivor diagnosis, treatment intensity, adverse health, chronic health conditions, and second cancers were not associated with sibling cancer prevention/screening behaviors. Conclusions Siblings of cancer survivors report greater skin cancer prevention practices when compared with controls; however, no differences were noted for breast/cervical cancer screening practices. Access to care and lack of education may be associated with decreased cancer prevention/screening behaviors. Interventions are needed to address these barriers. Impact Research should be directed at understanding the impact of the cancer experience on sibling health behaviors. PMID:22576363

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.

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.

Breast and colorectal cancer survivors' knowledge about their diagnosis and treatment.

PubMed

Nissen, Mary Jo; Tsai, Michaela L; Blaes, Anne H; Swenson, Karen K

2012-03-01

Aspects of a personal cancer history can have implications for future decisions regarding screening, diagnosis, and treatment. Clinicians must sometimes rely on patients' self-report of their medical history. This study assessed knowledge of details of cancer diagnosis and treatment among breast and colorectal cancer survivors. Written surveys were completed by 480 breast cancer survivors and 366 colorectal cancer survivors diagnosed between 1999 and 2008 at a large cancer center in the Minneapolis, MN, area (81% response rate). Responses were compared with cancer registry and medical records. Forty percent of breast cancer survivors and 65% of colorectal cancer survivors were unable to identify their stage of disease. Seven percent of breast cancer survivors and 21% of colorectal cancer survivors in whom regional nodes were examined did not know whether they had positive nodes. Accuracy of knowledge of estrogen and progesterone status among breast cancer survivors was 58% and 39%, respectively. Of breast cancer survivors treated with doxorubicin, 43% correctly identified it as a drug they had received. Their accuracy of identification of receipt of tamoxifen or specific aromatase inhibitors was >90%. Of colorectal cancer survivors treated with oxaliplatin, 52% correctly identified it as a drug they had received. Accuracy on many items decreased with patient age. This study identifies several gaps in adult cancer survivors' knowledge of details of their diagnosis and treatment that have implications for follow-up care. Provision of written treatment summaries to cancer survivors could help them obtain appropriate patient-centered long-term follow-up care.

Psychosocial Health of Disease-Free Breast Cancer Survivors Compared with Matched Non-cancer Controls.

PubMed

Park, Boyoung; Lee, Moo Hyun; Kong, Sun-Young; Lee, Eun Sook

2018-04-05

The present study investigated the psychosocial health of disease-free breast cancer survivors who receive health examinations compared to matched non-cancer controls in a community setting. We used baseline data from the Health Examinee cohort, which is composed of subjects participating in health. The disease-free breast cancer survivors were defined as those who were ≥2 years from initial diagnosis of breast cancer who had completed treatment. Females without a history of cancer were randomly selected at 1:4 ratio by 5-year age groups, education, and household income as a comparison group. We analyzed results from the Psychosocial Well-being Index-Short Form (PWI-SF) as a psychosocial health measurement. A total of 347 survivors of breast cancer and 1,388 matched controls were included. Total scores on the PWI-SF were lower in breast cancer survivors than matched non-cancer controls (p=0.006), suggesting a lower level of psychosocial stress in breast cancer survivors. In comparison to the control group, prevalence of drinking, smoking and obesity were lower, while exercising for ≥150 min/wk was higher in breast cancer survivors (p < 0.05). These findings suggest that breast cancer survivors have better health behaviors than their non-cancer controls. After adjusting for other sociodemographic variables, breast cancer survivors were 36% less likely to be included in the stress group (odds ratio, 0.64; 95% confidence interval, 0.42 to 0.98). The disease-free breast cancer survivors resuming daily life demonstrated better psychosocial health status compared to matched non-cancer controls.

Working situation of cancer survivors versus the general population.

PubMed

Lee, Myung Kyung; Yun, Young Ho

2015-06-01

The purposes of this study were to compare the working situation of cancer survivors and the general (cancer-free) population and investigate characteristics associated with the increased likelihood of unemployment between the two groups. We selected 1927 cancer survivors from the 2008 Korean Community Health Survey data less than 65 years of age and used propensity score matching to randomly select 1924 individuals from the general population who closely resembled the cancer survivors. Compared to the general population, cancer survivors were less likely to be engaged in paid work, particularly as permanent workers, and were more likely to work regular hours. Additionally, they tended to do less work that involved lifting or moving heavy objects and uncomfortable postures and were more willing to express their emotions. An increased probability of unemployment among cancer survivors was associated with being over 50 years old, being female, having a lower monthly income, having multiple comorbidities, belonging to a nuclear family, being a National Basic Livelihood Act beneficiary, and having a recent diagnosis. Cancer survivors may want to pursue flexible occupations and improve their working situation. Further, they perceive their workplace more positively compared to the general population. Respecting the cancer survivor's choice to find flexible working conditions that suit their health needs and status, health-care providers involved in managing work-related issues among cancer survivors should be aware of the interaction between work-related concerns and post-cancer disease management.

Change in employment status of 5-year cancer survivors.

PubMed

Torp, Steffen; Nielsen, Roy A; Fosså, Sophie D; Gudbergsson, Saevar B; Dahl, Alv A

2013-02-01

To follow the employment status of 5-year cancer survivors for 5 years after diagnosis with their first lifetime invasive cancer and to identify socio-demographic, work-related and cancer-related predictors of employment status after 5 years. This prospective registry study concerned all 3278 people in Norway (18-61 years old) diagnosed with their first lifetime invasive cancer in 1999 and alive in 2004 and a cancer-free control group (n = 6368) matched by sex, age, educational level and employment status in 1998. The employment rate among male cancer survivors declined steadily every year, from 94% the year before diagnosis (1998) to 77% 5 years after diagnosis (2004). This change did not differ significantly from that of male controls. The employment rate of female survivors also declined steadily, from 87% (1998) to 69% (2004). This decline was greater than that among female controls, and in 2004 survivors had a significantly lower employment rate. For both men and women, the significant pre-diagnosis predictors of being employed in 2004 concerned higher socio-economic position. For both sexes, lung cancer survivors had the highest decline in employment rate, and male skin cancer survivors had a lower decline in employment rate than controls. Socio-demographic and work-related factors explained more of the variance in employment status than did cancer diagnosis. The employment rate among 5-year cancer survivors did not change significantly except for female survivors. Low socio-economic position is a risk factor for decline in employment rate and should be focused on to prevent cancer-related inequity.

Second Neoplasms in Survivors of Childhood Cancer: Findings From the Childhood Cancer Survivor Study Cohort

PubMed Central

Meadows, Anna T.; Friedman, Debra L.; Neglia, Joseph P.; Mertens, Ann C.; Donaldson, Sarah S.; Stovall, Marilyn; Hammond, Sue; Yasui, Yutaka; Inskip, Peter D.

2009-01-01

Purpose To review the reports of subsequent neoplasms (SNs) in the Childhood Cancer Survivor Study (CCSS) cohort that were made through January 1, 2006, and published before July 31, 2008, and to discuss the host-, disease-, and therapy-related risk factors associated with SNs. Patients and Methods SNs were ascertained by survivor self-reports and subsequently confirmed by pathology findings or medical record review. Cumulative incidence of SNs and standardized incidence ratios for second malignant neoplasms (SMNs) were calculated. The impact of host-, disease-, and therapy-related risk factors was evaluated by Poisson regression. Results Among 14,358 cohort members, 730 reported 802 SMNs (excluding nonmelanoma skin cancers). This represents a 2.3-fold increase in the number of SMNs over that reported in the first comprehensive analysis of SMNs in the CCSS cohort, which was done 7 years ago. In addition, 66 cases of meningioma and 1,007 cases of nonmelanoma skin cancer were diagnosed. The 30-year cumulative incidence of SMNs was 9.3% and that of nonmelanoma skin cancer was 6.9%. Risk of SNs remains elevated for more than 20 years of follow-up for all primary childhood cancer diagnoses. In multivariate analyses, risks differ by SN subtype, but include radiotherapy, age at diagnosis, sex, family history of cancer, and primary childhood cancer diagnosis. Female survivors whose primary childhood cancer diagnosis was Hodgkin's lymphoma or sarcoma and who received radiotherapy are at particularly increased risk. Analyses of risk associated with radiotherapy demonstrated different dose-response curves for specific SNs. Conclusion Childhood cancer survivors are at a substantial and increasing risk for SNs, including nonmelanoma skin cancer and meningiomas. Health care professionals should understand the magnitude of these risks to provide individuals with appropriate counseling and follow-up. PMID:19255307

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.

Symptom Burden in Cancer Survivors One Year after Diagnosis: A Report from the American Cancer Society’s Studies of Cancer Survivors

PubMed Central

Shi, Qiuling; Smith, Tenbroeck G.; Michonski, Jared D.; Stein, Kevin D.; Kaw, Chiew Kwei; Cleeland, Charles S.

2011-01-01

Background Few studies have examined risk for severe symptoms during early cancer survivorship. Using baseline data from the American Cancer Society’s Study of Cancer Survivors-I, we examined cancer survivors with high symptom burden, identified risk factors associated with high symptom burden, and evaluated the impact of high symptom burden on health-related quality of life (HRQoL) 1 year post-diagnosis. Methods Participants were enrolled from 11 state cancer registries approximately 1 year after diagnosis and surveyed by telephone or mail. Outcomes measures were the Modified Rotterdam Symptom Checklist and Profile of Mood States-37 (to assess symptom burden) and the Satisfaction with Life Domains Scale-Cancer (to assess HRQoL). Results Of 4903 survivors, 4512 (92%) reported symptoms related to their cancer and/or its treatment. Two-step clustering yielded 2 sub-groups, one with low symptom burden (n=3113) and one with high symptom burden (n=1399). Variables associated with high symptom burden included metastatic cancer (odds ratio [OR], 2.05), number of comorbid conditions (OR, 1.76), remaining on active chemotherapy (OR, 1.93), younger age (OR, 2.31), lacking insurance/being underinsured (OR, 1.57), having lower income (OR, 1.61), being unemployed (OR, 1.27), or being less educated (OR, 1.29). Depression, fatigue, and pain had the greatest impact on HRQoL in survivors with high symptom burden, who also had lower HRQoL (P < .0001). Conclusions More than 1 in 4 cancer survivors had high symptom burden 1 year post-diagnosis, even after treatment termination. These results indicate a need for continued symptom monitoring and management in early posttreatment survivorship, especially for the underserved. PMID:21495026

Anxiety Among Adolescent Survivors of Pediatric Cancer.

PubMed

McDonnell, Glynnis A; Salley, Christina G; Barnett, Marie; DeRosa, Antonio P; Werk, Rachel S; Hourani, Allison; Hoekstra, Alyssa B; Ford, Jennifer S

2017-10-01

The purpose of this review was to synthesize current knowledge about anxiety among adolescent survivors of pediatric cancer and highlights areas for future research. Systematic literature searches were conducted in five databases for articles published anytime before December 28, 2015. Manuscripts were reviewed by a team of six coders. Included manuscripts reported outcomes relevant to anxiety, worry, and post-traumatic stress in survivors of pediatric cancer (age at the time of study: 10-22 years) who were off treatment. Twenty-four articles met inclusion criteria. Included results were categorized into the following domains: post-traumatic stress, anxiety, cancer-related worry, and interventions. With the exception of post-traumatic stress, there was little research about anxiety in this population; however, studies generally indicated that adolescent survivors of pediatric cancer are at elevated risk for anxiety, post-traumatic stress symptoms, and cancer-related worry. This review provides preliminary evidence that anxiety is a relevant, but understudied, psychosocial outcome for adolescent survivors of pediatric cancer. More research is needed to better understand the presentation of anxiety in this population, its effect on survivors' quality of life, and possible areas for intervention. Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Employment status and occupational level of adult survivors of childhood cancer in Great Britain: The British childhood cancer survivor study.

PubMed

Frobisher, Clare; Lancashire, Emma R; Jenkinson, Helen; Winter, David L; Kelly, Julie; Reulen, Raoul C; Hawkins, Michael M

2017-06-15

The British Childhood Cancer Survivor Study (BCCSS) provides the first detailed investigation of employment and occupation to be undertaken in a large population-based cohort. Previous studies have been limited by design issues such as using small numbers of survivors with specific diagnoses, and involved limited assessment of employment status and occupational level. The BCCSS includes 17,981 5-year survivors of childhood cancer. Employment status and occupational level were ascertained by questionnaire from eligible survivors (n = 14,836). Multivariate logistic regression was used to explore factors associated with employment and occupation, and to compare survivors to their demographic peers in the general population. Employment status was available for 10,257 survivors. Gender, current age, cancer type, radiotherapy, age at diagnosis and epilepsy were consistently associated with being: employed; unable to work; in managerial or non-manual occupations. Overall, survivors were less likely to be working than expected (OR (99% CI): 0.89 (0.81-0.98)), and this deficit was greatest for irradiated CNS neoplasm survivors (0.34 (0.28-0.41)). Compared to the general population, survivors were fivefold more likely to be unable to work due to illness/disability; the excess was 15-fold among CNS neoplasm survivors treated with radiotherapy. Overall survivors were less likely to be in managerial occupations than expected (0.85 (0.77-0.94)). However, bone sarcoma survivors were more likely to be in these occupations than expected (1.37 (1.01-1.85)) and also similarly for non-manual occupations (1.90 (1.37-2.62)). Survivors of retinoblastoma (1.55 (1.20-2.01)) and 'other' neoplasm group (1.62 (1.30-2.03)) were also more likely to be in non-manual occupations than expected. © 2017 The Authors International Journal of Cancer published by John Wiley & Sons Ltd on behalf of UICC.

A comparison of heterosexual and LGBTQ cancer survivors' outlooks on relationships, family building, possible infertility, and patient-doctor fertility risk communication.

PubMed

M Russell, Andrea; Galvin, Kathleen M; Harper, Maya M; Clayman, Marla L

2016-10-01

Little research about cancer-related infertility has examined the experiences and needs of lesbian, gay, bisexual, transgender, or queer (LGBTQ) cancer survivors. This research seeks to understand how LGBTQ survivors are similar to or different from heterosexual survivors with respect to cancer treatments' effects on relationships, plans for parenthood, and fertility preservation decision making. Semi-structured telephone interviews conducted with adolescent or young adult (AYA) cancer survivors (n = 56) were coded for themes. Interviews consisted of questions about pre- and post-diagnosis thoughts about relationships, parenthood, possible infertility, and how information about fertility risks was received. While LGBTQ (n = 22) and heterosexual (n = 34) survivors reported similar challenges when dating post-diagnosis, heterosexual survivors were more likely to report fertility concerns as affecting romantic relationships (p < .05). LGBTQ survivors seemed more open to raising non-biological children or not becoming a parent than heterosexual survivors. LGBTQ survivors generally reported being satisfied with or indifferent to the information that they were given regarding fertility loss, despite reporting receiving similar amounts of information as compared to heterosexual patients (p < .10). LGBTQ patients' views on relationships, parenthood, and family building seemed to result in less distress when faced with infertility. However, interventions facilitating information exchange about dating, fertility risks, and family building options may be valuable to LGBTQ and heterosexual cancer survivors. LGBTQ cancer survivors may display more adaptive coping with respect to relationships and fertility loss. Oncology professionals may want to proactively introduce positive coping strategies to reduce distress among AYA cancer survivors at risk for infertility.

Quality of life, self-esteem, fatigue, and sexual function in young men after cancer: a controlled cross-sectional study.

PubMed

Greenfield, Diana M; Walters, Stephen J; Coleman, Robert E; Hancock, Barry W; Snowden, John A; Shalet, Stephen M; DeRogatis, Leonard R; Ross, Richard J M

2010-03-15

Androgen deficiency is increasingly recognized in young male cancer survivors; however, its impact on quality of life (QOL) is not established. The authors investigated the relationship between androgen levels, QOL, self-esteem, fatigue, and sexual function in young male cancer survivors compared with control subjects. A cross-sectional, observational study of 176 male cancer survivors and 213 male controls aged 25 to 45 years was performed. Subjects completed 3 QOL scales (Medical Outcomes Study 36-Item Short-Form Health Survey version 2, the 12-item General Health Questionnaire [GHQ-12], and Aging Male Scale), and measures of self-esteem (Rosenberg Self-Esteem Scale), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), and sexual function (Derogatis Interview for Sexual Functioning-II Self-Report-Male). Cancer survivors had lower scores for all components of the Short-Form Health Survey, Aging Male Scale, and Functional Assessment of Chronic Illness Therapy-Fatigue, and for 4 of 5 subsections of the Derogatis Interview for Sexual Functioning than controls. The majority of these differences remained after adjusting by linear regression analysis. Levels of psychiatric disorder or self-esteem did not differ between the 2 groups. In cancer survivors, those with androgen deficiency (serum testosterone < or = 10 nmol/L) had lower scores than those without for all components of the Short-Form Health Survey, the General Health Questionnaire, Functional Assessment of Chronic Illness Therapy-Fatigue, and the Derogatis Interview for Sexual Functioning. Serum testosterone only weakly correlated with health measures. Young male cancer survivors self-report a marked impairment in QOL, energy levels, and quality of sexual functioning, and this was exacerbated in those with androgen deficiency. However, psychological distress was not elevated, self-esteem was normal, and sexual relationships were not impaired. The relationship with testosterone is complex, and

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.

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.

The role of acculturation in life satisfaction among Hispanic cancer survivors: results of the American Cancer Society's study of cancer survivors.

PubMed

Stephens, Cristina; Stein, Kevin; Landrine, Hope

2010-04-01

We sought to identify the role of acculturation in the life satisfaction of Hispanic cancer survivors. We compared life satisfaction among the high- vs low-acculturated Hispanics who participated in a national, cross-sectional study of quality of life among cancer survivors. Despite fewer socio-economic resources, low-acculturated Hispanic survivors had higher life satisfaction (Beta=5.08, p<0.05). This relationship was mediated by higher levels of social support and spirituality found among low-acculturated survivors, with spirituality being the strongest predictor (Beta=0.379, p<0.001). Acculturation may provide opportunities for improved socio-economic status often necessary for adequate functioning in the host culture. However, it may also result in a departure from traditional cultural values, which in turn may negatively impact life satisfaction during cancer survivorship. Copyright 2009 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.

Male infertility in long-term survivors of pediatric cancer: A report from the Childhood Cancer Survivor Study

PubMed Central

Wasilewski-Masker, K; Seidel, K D; Leisenring, W; Mertens, A C; Shnorhavorian, M; Ritenour, C W; Stovall, M; Green, D M; Sklar, C A; Armstrong, G T; Robison, L L; Meacham, L R

2014-01-01

Purpose The purpose of this study was to assess the prevalence of male infertility and treatment-related risk factors in childhood cancer survivors. Methods Within the Childhood Cancer Survivor Study, 1622 survivors and 274 siblings completed the Male Health Questionnaire. The analysis was restricted to survivors (938/1622; 57.8%) and siblings (174/274; 63.5%) who tried to become pregnant. Relative risks (RR) and 95% confidence intervals (CI) for the prevalence of self-reported infertility were calculated using generalized linear models for demographic variables and treatment-related factors to account for correlation among survivors and siblings of the same family. All statistical tests were two-sided. Results Among those who provided self-report data, the prevalence of infertility was 46.0% in survivors versus 17.5% in siblings (RR=2.64, 95% CI 1.88-3.70, p < 0.001). Of survivors who met the definition for infertility, 37% had reported at least one pregnancy with a female partner that resulted in a live birth. In a multivariable analysis, risk factors for infertility included an alkylating agent dose score (AAD) ≥ 3 (RR= 2.13, 95% CI 1.69-2.68 for AAD ≥ 3 versus AAD<3), surgical excision of any organ of the genital tract (RR=1.63, 95% CI 1.20-2.21), testicular radiation ≥ 4Gy (RR=1.99, 95% CI 1.52-2.61), and exposure to bleomycin (RR=1.55, 95% CI 1.20-2.01). Conclusion Many survivors who experience infertility father their own children suggesting episodes of both fertility and infertility. This and the novel association of infertility with bleomycin warrant further investigation. Implications for Cancer Survivors Though infertility is common, male survivors reporting infertility often father their own children. Bleomycin may pose some fertility risk. PMID:24711092

Cancer Survivors Day | Center for Cancer Research

Cancer.gov

CCR Celebrates Cancer Survivors #NCSD2016 At the Center for Cancer Research, we are home to an extraordinary group of practicing physicians and scientists who passionately explore the boundaries of research to unlock the mysteries of cancer, a disease that touches nearly every American.

Marital status and optimism score among breast cancer survivors.

PubMed

Croft, Lindsay; Sorkin, John; Gallicchio, Lisa

2014-11-01

There are an increasing number of breast cancer survivors, but their psychosocial and supportive care needs are not well-understood. Recent work has found marital status, social support, and optimism to be associated with quality of life, but little research has been conducted to understand how these factors relate to one another. Survey data from 722 breast cancer survivors were analyzed to estimate the association between marital status and optimism score, as measured using the Life Orientation Test-Revised. Linear regression was used to estimate the relationship of marital status and optimism, controlling for potential confounding variables and assessing effect modification. The results showed that the association between marital status and optimism was modified by time since breast cancer diagnosis. Specifically, in those most recently diagnosed (within 5 years), married breast cancer survivors had a 1.50 higher mean optimism score than unmarried survivors (95 % confidence interval (CI) 0.37, 2.62; p = 0.009). The difference in optimism score by marital status was not present more than 5 years from breast cancer diagnosis. Findings suggest that among breast cancer survivors within 5 years since diagnosis, those who are married have higher optimism scores than their unmarried counterparts; this association was not observed among longer-term breast cancer survivors. Future research should examine whether the difference in optimism score among this subgroup of breast cancer survivors is clinically relevant.

The Lifestyle Change Experiences of Cancer Survivors.

PubMed

Tsay, Shiow-Luan; Ko, Wang-Sheng; Lin, Kuan-Pin

2017-10-01

Leading a healthy lifestyle not only alleviates the physical problems but also improves the quality of life of cancer survivors. Healthcare professionals should understand the benefits of altering lifestyle behaviors to provide effective intervention programs to assist cancer survivors to improve their health. The aim of this study was to understand the experiences of cancer survivors in changing their lifestyle after a cancer diagnosis. A qualitative descriptive study was conducted on 13 cancer survivors who were sampled purposively from a regional teaching hospital in central Taiwan. Data were collected using in-depth interviews that were guided by semistructured, open-ended questions and analyzed using content analysis. The analysis of interview data revealed four main themes: motivation of lifestyle change, exploring ways toward a healthy lifestyle, making adjustments in lifestyle, and feeling the benefits of lifestyle changes. In striving for survival, an unwillingness to bear the suffering from treatment and their acceptance of responsibility and gratitude to family members prompted most of the participants to change their lifestyle proactively. They had received inadequate lifestyle guidance and sought health lifestyle information on their own. After a period of research and self-contemplation, most of the participants adopted a consistently healthy lifestyle, changed their dietary consumption habits, abstained from tobacco and alcohol, and managed emotional problems that were caused by the disease. Participants who changed to a healthy lifestyle realized benefits in the physical, emotional, and life domains. It is hoped that these findings help healthcare professionals to better appreciate that a cancer diagnosis is a critical opportunity to link the disease to lifestyle choices in the minds of cancer survivors. Healthcare professionals should ask cancer survivors about their lifestyle and then provide appropriate advice and education on healthy lifestyles

Developing Interventions for Cancer-Related Cognitive Dysfunction in Childhood Cancer Survivors

PubMed Central

Ullrich, Nicole J.; Whelen, Megan J.; Lange, Beverly J.

2014-01-01

Survivors of childhood cancer frequently experience cancer-related cognitive dysfunction, commonly months to years after treatment for pediatric brain tumors, acute lymphoblastic leukemia (ALL), or tumors involving the head and neck. Risk factors for cancer-related cognitive dysfunction include young age at diagnosis, treatment with cranial irradiation, use of parenteral or intrathecal methotrexate, female sex, and pre-existing comorbidities. Limiting use and reducing doses and volume of cranial irradiation while intensifying chemotherapy have improved survival and reduced the severity of cognitive dysfunction, especially in leukemia. Nonetheless, problems in core functional domains of attention, processing speed, working memory and visual-motor integration continue to compromise quality of life and performance. We review the epidemiology, pathophysiology and assessment of cancer-related cognitive dysfunction, the impact of treatment changes for prevention, and the broad strategies for educational and pharmacological interventions to remediate established cognitive dysfunction following childhood cancer. The increased years of life saved after childhood cancer warrants continued study toward the prevention and remediation of cancer-related cognitive dysfunction, using uniform assessments anchored in functional outcomes. PMID:25080574

Why did I get cancer? Perceptions of childhood cancer survivors in Korea.

PubMed

Yi, Jaehee; Kim, Min Ah; Parsons, Bridget G; Wu, Yelena P

2018-04-01

This study explored whether and how childhood cancer survivors in Korea ask and resolve the question of what may have caused their cancer. Thirty-one childhood cancer survivors participated in in-depth interviews about their self-questioning process in this regard. The findings indicate that Korean childhood cancer survivors pondered this question alone due to the stigma attached to cancer in the family and society. Their answers included internal factors (doing "bad things," having unhealthy eating habits, engaging in magical thinking, having a stress-prone personality, or having a biological susceptibility) or external factors (stressors, random events, the environment, or medical conditions). How they perceived the cause of cancer had an impact on aspects of their current lives. Psychosocial care standards or guidelines are needed in regard to the provision of a safe environment in which Korean cancer survivors and their parents can share their perceptions and process their thoughts.

Oral and dental late effects in survivors of childhood cancer: a Children’s Oncology Group report

PubMed Central

Migliorati, Cesar A.; Hudson, Melissa M.; McMullen, Kevin P.; Kaste, Sue C.; Ruble, Kathy; Guilcher, Gregory M. T.; Shah, Ami J.; Castellino, Sharon M.

2014-01-01

Purpose Multi-modality therapy has resulted in improved survival for childhood malignancies. The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers provide practitioners with exposure- and risk-based recommendations for the surveillance and management of asymptomatic survivors who are at least 2 years from completion of therapy. This review outlines the pathophysiology and risks for oral and dental late effects in pediatric cancer survivors and the rationale for oral and dental screening recommended by the Children’s Oncology Group. Methods An English literature search for oral and dental complications of childhood cancer treatment was undertaken via MEDLINE and encompassed January 1975 to January 2013. Proposed guideline content based on the literature review was approved by a multi-disciplinary panel of survivorship experts and scored according to a modified version of the National Comprehensive Cancer Network “Categories of Consensus” system. Results The Children’s Oncology Group oral-dental pan el selected 85 relevant citations. Childhood cancer therapy may impact tooth development, salivary function, craniofacial development, and temporomandibular joint function placing some childhood cancer survivors at an increased risk for poor oral and dental health. Addition ally, head and neck radiation and hematopoietic stem cell transplantation increase the risk of subsequent ma lignant neoplasms in the oral cavity. Survivors require routine dental care to evaluate for potential side effects and initiate early treatment. Conclusions Certain childhood cancer survivors are at an increased risk for poor oral and dental health. Early identification of oral and dental morbidity and early interventions can optimize health and quality of life. PMID:24781353

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

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.

Physical Activity in Cancer Survivors During "Re-Entry" Following Cancer Treatment.

PubMed

Troeschel, Alyssa N; Leach, Corinne R; Shuval, Kerem; Stein, Kevin D; Patel, Alpa V

2018-05-24

The transition from active cancer treatment into survivorship, known as re-entry, remains understudied. During re-entry, clinicians can educate survivors on the benefits of healthy behaviors, including physical activity, as survivors adjust to life after cancer. We examine the prevalence of adherence to established aerobic physical activity guidelines (≥150 minutes of moderate-intensity physical activity per week) in addition to related medico-demographic factors among cancer survivors during re-entry. Data from 1,160 breast, colorectal, and prostate cancer survivors participating in the American Cancer Society's National Cancer Survivor Transition Study were examined. Multinomial logistic regression was used to calculate adjusted odds ratios (AOR) for various medico-demographic variables in relation to 4 established levels of physical activity (inactive, insufficiently active, 1-<2 times the guideline level, and ≥2 times the guideline level [referent group]). Overall, 8.1% were inactive, 34.1% were insufficiently active, 24.3% were within 1 to less than 2 times the guidelines, and 33.4% exceeded guidelines by 2 or more times. Inactive people had significantly higher odds of being women (AOR, 1.88; 95% confidence interval [CI], 1.10-3.23) and having lower education levels (AOR, 2.02; 95% CI, 1.21-3.38) compared with those who exceeded guidelines by 2 or more times. Each additional comorbidity was associated with a 26% increase in odds of inactivity (AOR, 1.26; 95% CI, 1.08-1.47). Patient education on the benefits of regular physical activity is important for all cancer survivors and may be especially important to review after treatment completion to promote healthy habits during this transition period. Survivors who are women, are less educated, and have comorbid conditions may be less likely to be compliant with physical activity guidelines.

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

Diet Quality of Cancer Survivors and Non-Cancer Individuals: Results from a National Survey

PubMed Central

Zhang, Fang Fang; Liu, Shanshan; John, Esther; Must, Aviva; Demark-Wahnefried, Wendy

2015-01-01

Background Patterns of poor nutritional intake may exacerbate elevated morbidity experienced by cancer survivors. It remains unclear whether cancer survivors adhere to existing dietary guidelines, and whether survivors’ diet differs from individuals without cancer long-term. Methods We evaluated dietary intake and quality in 1,533 adult cancer survivors in the National Health and Nutrition Examination Survey (NHANES) 1999–2010 and compared that to 3,075 individuals without a history of cancer who were matched to cancer survivors by age, gender, and race/ethnicity. Dietary intake was assessed using 24-hour dietary recalls. The Healthy Eating Index (HEI)-2010 was used to evaluate diet quality. Results The mean HEI-2010 total score was 47.2 (SD=0.5) in cancer survivors and 48.3 (SD=0.4) in non-cancer individuals (p=0.03). Compared to non-cancer individuals, cancer survivors had a significantly lower score of empty calories (13.6 vs. 14.4, p=0.001), which corresponds to worse adherence to dietary intake of calories from solid fats, alcohol and added sugars. Cancer survivors also had a significantly lower dietary intake of fiber than non-cancer individuals (15.0 vs. 15.9 grams/day, p=0.02). Survivors’ mean dietary intakes of vitamin D, vitamin E, potassium, fiber, and calcium were 31%, 47%, 55%, 60%, and 73% in relation to the recommended intake whereas the mean dietary intake of saturated fat and sodium was 112% and 133% of the recommended intake. Conclusions Cancer survivors had a poor adherence to the 2010 Dietary Guidelines for Americans, and their intake patterns were worse than those in the general population for empty calories and fiber. PMID:26624564

Objectively assessed physical activity levels in Spanish cancer survivors.

PubMed

Ruiz-Casado, Ana; Verdugo, Ana Soria; Solano, María J Ortega; Aldazabal, Itziar Pagola; Fiuza-Luces, Carmen; Alejo, Lidia Brea; del Hierro, Julio R Padilla; Palomo, Isabel; Aguado-Arroyo, Oscar; Garatachea, Nuria; Cebolla, Héctor; Lucia, Alejandro

2014-01-01

To objectively assess physical activity (PA) levels in a cohort of Spanish cancer survivors. Descriptive, cross-sectional. The Hospital Universitario de Fuenlabrada and two healthcare centers in Madrid, Spain. 204 cancer survivors and 115 adults with no history of cancer. Participants wore a triaxial accelerometer for seven or more consecutive days to assess PA levels. Body mass index (BMI), indirect indicators of adiposity (waist circumference, waist-to-hip ratio), and cardiorespiratory fitness also were determined. Light, moderate, vigorous, and total PA (sum of the former). Most (94%) of the cancer survivors met international recommendations for moderate PA, but very few (3%) fulfilled those (75 minutes or more per week) for vigorous PA. Except for lower total (minute per day, p=0.048) and vigorous PA levels (p<0.001 for both minute per day and minute per week) recorded in the cancer survivors group, no between-group differences were detected (p>0.05). A high percentage of the survivors (33%) were obese (BMI greater than 30 kg/m2), and many also showed poor cardiorespiratory fitness (45% were below the 8 metabolic equivalent threshold). Although cancer survivors overall met international PA recommendations for a healthy lifestyle, their BMI and cardiorespiratory profiles were not within the healthy range. Cancer survivors need to be informed about healthy lifestyle habits and should be regularly monitored.

The mediating roles of cancer-related rumination in the relationship between dispositional hope and psychological outcomes among childhood cancer survivors.

PubMed

Yuen, Ada N Y; Ho, Samuel M Y; Chan, Calais K Y

2014-04-01

This study aimed to examine the effects of dispositional hope on psychopathology as well as self-perceived positive change in childhood cancer survivors through the potential mediation of cancer-related ruminations. A cross-sectional design was used, and a group of childhood cancer survivors (N = 89; mean age = 23.2 years; age range = 17.2-31.3 years) were studied. Dispositional hope level was measured by the Hope Scale; positive and negative cancer-related ruminations were assessed by the Chinese Cancer-related Rumination Scale; depression symptoms were measured by Beck Depression Inventory; and anxiety symptoms were measured by Beck Anxiety Inventory. Positive adjustment outcome of posttraumatic growth (PTG) was assessed by the Chinese Post-traumatic Growth Inventory. Multiple regressions were used to analyze the relationship between dispositional hope and the outcome variables of PTG, anxiety and depression and the potential mediators of positive and negative cancer-related rumination. Dispositional hope was positively related to PTG, and the correlation was specifically mediated by positive cancer-related rumination. Dispositional hope also correlated with lower levels of depression and anxiety, specifically mediated by negative cancer-related rumination. The present finding supported hope as a significant positive factor for childhood cancer survivors, which was associated with PTG and better psychological adjustment. The findings may inform development of therapeutic intervention programs aimed at increasing childhood cancer patients' hope levels, which may be correlated with more positive cancer-related thoughts and better adjustment. The present study, which examined survivors diagnosed at young age, may enrich existing studies on the effect of onset age and adjustment outcomes. Copyright © 2013 John Wiley & Sons, Ltd.

Self-advocacy training for cancer survivors. The Cancer Survival Toolbox.

PubMed

Walsh-Burke, K; Marcusen, C

1999-01-01

With the advent of managed healthcare, self-advocacy has been identified as an essential skill for cancer survivors. This article describes a self-advocacy training program, the Cancer Survival Toolbox, developed through a unique collaborative effort by the National Coalition for Cancer Survivorship, the Association of Oncology Social Work, and the Oncology Nursing Society. Self-advocacy training is provided in audiotape format, as well as through the Internet and in interactive groups. The need for this training was established through surveys completed by 569 cancer survivors and 833 oncology professionals. Essential skills were identified through a literature review, and the content of the training was pilot tested with bicoastal groups of cancer survivors and with feedback from representatives of 15 national cancer organizations. While the majority of the 569 respondents to the survivor survey were highly educated and between the ages of 31 and 60 years, fewer than half reported that when they first received a diagnosis of cancer they were able to communicate their needs effectively, had the skills necessary to make decisions, or were able to negotiate with healthcare providers, insurers, and employers. Results of the survey of professional oncology nurses and social workers also supported the need for self-advocacy training. Fewer than one third of the 833 respondents to the professional survey reported that their patients who had received new diagnoses of cancer had essential self-advocacy skills. This self-advocacy training program is currently available on audiotape in English and Spanish. It is available in print in Chinese on the Internet. Data from the pilot groups indicate the program effectively addresses the self-advocacy skills of communication, information seeking, problem solving, decision making, and negotiating. Data are currently being collected to assess the efficacy of the audiotape format and the impact of the training on survivors and

School attendance in childhood cancer survivors and their siblings.

PubMed

French, Amy E; Tsangaris, Elena; Barrera, Maru; Guger, Sharon; Brown, Robert; Urbach, Stacey; Stephens, Derek; Nathan, Paul C

2013-01-01

To investigate school absenteeism among childhood cancer survivors and their siblings and examine factors related to absenteeism in survivors. A cross-sectional study was conducted among consecutive cancer survivors attending a large pediatric cancer survivor clinic. Absenteeism rates were obtained for survivors and their closest in age sibling from school report cards. Absenteeism was compared with a population control group of 167752 students using 1-sample t tests. The Child Vulnerability Scale, Pediatric Quality of Life Inventory, and Behavior Assessment System for Children were administered to survivors. Univariate and multiple regression analyses assessed variables associated with days absent. One hundred thirty-one survivors (median age at assessment: 13.4 years, range 8.0-19.2; median age at diagnosis: 9.4 years, range 4.3-17.3) and 77 siblings (median age at assessment: 13 years, age range 7-18) participated. Survivors and siblings missed significantly more school days than the population control group (mean ± SD: 9.6 ± 9.2 and 9.9 ± 9.8 vs 5.0 ± 5.6 days, respectively, P < .0001). Among matched survivor-sibling pairs (N = 77), there was no difference in absenteeism (9.6 ± 9.2 vs 9.9 ± 9.8 days, P = .85). Absenteeism in survivors was significantly associated with a low Pediatric Quality of Life Inventory Physical Health Summary Score (P = .01). Parents' perception of their child's vulnerability and emotional and social functioning were not associated with absenteeism. Childhood cancer survivors and siblings miss more school than the general population. The only predictor of absenteeism in survivors is poor physical quality of health. More research should be devoted to school attendance and other outcomes in siblings of childhood cancer survivors. Copyright © 2013 Mosby, Inc. All rights reserved.

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.

A qualitative exploration of supports and unmet needs of diverse young women with breast cancer.

PubMed

Ruddy, Kathryn J; Greaney, Mary L; Sprunck-Harrild, Kim; Meyer, Meghan E; Emmons, Karen M; Partridge, Ann H

2015-09-01

Young women with breast cancer face different challenges than those faced by older women because of their age and life stage, yet few studies have focused on the different challenges faced by women from diverse populations. To explore existing supports that are important during diagnosis and treatment and the unmet needs for information and support in young women with breast cancer. We conducted 20 semistructured interviews in English with women aged 42 or younger who had been diagnosed with stage I-III invasive breast cancer within the previous 4 years. We recorded and transcribed the interviews and used collaborative group immersion/ crystallization to analyze data, identify emergent themes, and determine if there were differences by race/ethnicity. 20 participants, recruited from 9 US states and Canada, were interviewed, of whom 25% were Hispanic, 15% were black, 50% were white and non-Hispanic, and 10% were another race/ethnicity. Faith and/or spirituality and family were reported as important sources of support by many of the participants. Most of them lamented the inadequacy of their connections with other young survivors and also of supports for their family. Some recommended that young patients be provided with more information about: treatment-related physical and emotional changes; fertility and menopause; relationships after cancer; navigating work challenges; and transitioning into survivorship. None of these supports or recommendations was limited to a specific race/ethnicity or geographic region. Small sample size, exclusion of non-English speakers. Conclusions Key informant interviews of young breast cancer survivors identified similar needs for education and support across various races/ethnicities and geographies. Key informant interviews of young breast cancer survivors identified similar needs for education and support across various races/ethnicities and geographies. ©2015 Frontline Medical Communications.

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

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.

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.

Young female cancer survivors' use of fertility care after completing cancer treatment

PubMed Central

Kim, Jayeon; Mersereau, Jennifer E.; Su, H. Irene; Whitcomb, Brian W.; Malcarne, Vanessa L.; Gorman, Jessica R.

2016-01-01

Purpose To investigate factors associated with female young adult cancer survivors’ (YCS) use of fertility care (FC), including consultation or fertility treatment, after completing their cancer treatment. Methods In this cross-sectional study, females between that ages of 18 and 35 years who had been diagnosed with childhood, adolescent, or young adult cancers completed a 20-min web-based survey that included demographics, reproductive history, use of FC, fertility-related informational needs, and reproductive concerns. Results A total of 204 participants completed the survey. Participants’ mean age was 28.3±4.5 years. Thirty (15%) participants reported using FC after cancer treatment. The majority of participants recalled not receiving enough information about FP options at the time of cancer diagnosis (73%). In multivariable analysis, those with higher concerns about having children because of perceived risk to their personal health (P=0.003) were less likely to report use of FC after cancer treatment. Those who had used FC before cancer treatment (P=0.003) and who felt less fertile than age-matched women (P=0.02) were more likely to use FC after their cancer treatment. Conclusions While most YCS in this cohort believed that they did not receive enough information about fertility and most wanted to have children, the vast majority did not seek FC. The findings of this study offer further evidence of the need for improved education and emotional support regarding reproductive options after cancer treatment is completed. Targeted discussions with YCS about appropriate post-treatment FC options may improve providers’ capacity to help YCS meet their parenthood goals. PMID:26939923

Receipt of Psychosocial Care Among Cancer Survivors in the United States

PubMed Central

Forsythe, Laura P.; Kent, Erin E.; Weaver, Kathryn E.; Buchanan, Natasha; Hawkins, Nikki A.; Rodriguez, Juan L.; Ryerson, A. Blythe; Rowland, Julia H.

2013-01-01

Purpose Given the importance of psychosocial care for cancer survivors, this study used population-based data to characterize survivors who reported a discussion with health care provider(s) about the psychosocial effects of cancer and who reported using professional counseling or support groups (PCSG) and tested associations between receipt of psychosocial care and satisfaction with care. Patients and Methods We examined survivors of adult cancers from the 2010 National Health Interview Survey (N = 1,777). Multivariable logistic regression models examined factors associated with receipt of and satisfaction with psychosocial care. Results Most survivors (55.1%) reported neither provider discussions nor use of PCSG; 31.4% reported provider discussion only, 4.4% reported use of PCSG only, and 8.9% reported both. Non-Hispanic blacks (v non-Hispanic whites), married survivors, survivors of breast cancer (v prostate or less prevalent cancers), those treated with chemotherapy, and survivors reporting past research study/clinical trial participation were more likely to report provider discussion(s) (P < .01). Hispanics (v non-Hispanic whites), survivors age 40 to 49 years (v ≤ 39 years), survivors of breast cancer (v melanoma or less prevalent cancers), those diagnosed ≤ 1 year ago (v > 5 years ago), survivors treated with radiation, and past research participants were more likely to report use of PCSG (P < .05). Survivors reporting any psychosocial care were more likely to be “very satisfied” with how their needs were met (P < .001). Conclusion Many survivors do not report a discussion with providers about the psychosocial effects of cancer, which reflects a missed opportunity to connect survivors to psychosocial services. These data can benchmark the success of efforts to improve access to cancer-related psychosocial care. PMID:23610114

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.

Genetic counseling of the cancer survivor

DOE Office of Scientific and Technical Information (OSTI.GOV)

Mulvihill, J.J.; Byrne, J.

Each year, tens of thousands of persons are diagnosed with cancer, are treated, and become survivors while still in their reproductive years. Their concerns about possible germ-cell damage as a result of life-saving radiation, chemotherapy, or both are plausible, based on evidence from animal models and from somatic cell mutations in human beings. A 40-year follow-up of survivors of the atomic bomb blasts in Japan showed no detectable genetic damage and suggested that the human gonad is more resistant to radiogenic mutation than the laboratory mouse. The pooled results of studying 12 series of offspring of cancer patients showed amore » 4% rate of major birth defects (similar to that of the general population) and an excess of fetal loss and low birth weight in offspring of women who received abdominal radiotherapy. According to preliminary evaluation of a new National Cancer Institute collaboration with five cancer registries, offspring of survivors of childhood cancers had no more birth defects than expected and, beyond an increase in probably familial cancers in children younger than 5, no overall increase in childhood cancer. Ideally, genetic and reproductive counseling should take place as soon as cancer is diagnosed (before therapy starts) and again when pregnancy is contemplated. 28 references.« less

Survivorship education for Latina breast cancer survivors: Empowering Survivors through education

PubMed Central

Juarez, Gloria; Mayorga, Lina; Hurria, Arti; Ferrell, Betty

2013-01-01

Objectives Nueva Luz is an English and Spanish quality of life (QOL) intervention developed to address the educational needs of Latina breast cancer survivors and provide strategies to assist in their transition into survivorship. Methods A qualitative approach was used to evaluate the English and Spanish educational intervention (Nueva Luz). A purposive sample of eight Latina breast cancer survivors was selected from the group who received the intervention to participate in a digitally recorded interview. Data was analyzed using thematic analysis. Results Findings provide evidence that the one-on-one tailored approach is a feasible and acceptable method of providing a bilingual psychosocial intervention. The provision of printed bilingual information along with the verbal instruction from a bilingual and culturally competent health care provider can be effective in helping Latina breast cancer survivor’s transition successfully into survivorship, improve QOL and contribute to better patient outcomes Conclusions The study informs our understanding of the cultural context in patient education content and delivery of psychosocial interventions. The findings may also have relevance for other ethnic minority cancer survivors. PMID:24416043

Long-term pulmonary disease among Swiss childhood cancer survivors.

PubMed

Kasteler, Rahel; Weiss, Annette; Schindler, Matthias; Sommer, Grit; Latzin, Philipp; von der Weid, Nicolas X; Ammann, Roland A; Kuehni, Claudia E

2018-01-01

Pulmonary diseases are potentially severe late complications of childhood cancer treatment that increase mortality risk among survivors. This nationwide study assesses the prevalence and incidence of pulmonary diseases in long-term childhood cancer survivors (CCS) and their siblings, and quantifies treatment-related risks. As part of the Swiss Childhood Cancer Survivor Study, we studied CCS who were diagnosed between 1976 and 2005 and alive at least 5 years after diagnosis. We compared prevalence of self-reported pulmonary diseases (pneumonia, chest wall abnormalities, lung fibrosis, emphysema) between CCS and their siblings, calculated cumulative incidence of pulmonary diseases using the Kaplan-Meier method, and determined risk factors using multivariable logistic regression. CCS reported more pneumonias (10% vs. 7%, P = 0.020) and chest wall abnormalities (2% vs. 0.4%, P = 0.003) than siblings. Treatment with busulfan was associated with prevalence of pneumonia (odds ratio [OR] 4.0, 95% confidence interval [CI] 1.1-14.9), and thoracic surgery was associated with chest wall abnormalities and lung fibrosis (OR 4.1, 95% CI 1.6-10.7 and OR 6.3, 95% CI 1.7-26.6). Cumulative incidence of any pulmonary disease after 35 years of follow-up was 21%. For pneumonia, the highest cumulative incidence was seen in CCS treated with both pulmotoxic chemotherapy and radiotherapy to the thorax (23%). This nationwide study in CCS found an increased risk for pulmonary diseases, especially pneumonia, while still young, which indicates that CCS need long-term pulmonary follow-up. © 2017 Wiley Periodicals, Inc.

Dealing with the financial burden of cancer: perspectives of older breast cancer survivors.

PubMed

Pisu, Maria; Martin, Michelle Y; Shewchuk, Richard; Meneses, Karen

2014-11-01

Financial burden among cancer survivors is often overlooked in survivorship care planning. Cancer survivors with limited incomes may be particularly affected. Yet, little data are available to address financial issues among them. Eliciting the survivors' perspectives on how to deal with this financial burden is a first crucial step to identifying the means to provide this supportive care. In this pilot study, three nominal group technique (NGT) sessions were conducted with a convenience sample of 23 older breast cancer survivors (age 52 to 83) recruited from a county safety net hospital and a Comprehensive Cancer Center. One single NGT question was posed in these sessions, namely "What could help women deal with the financial burden that cancer brings to them and their families?" Survivors responded in an iterative fashion and then ranked the most relevant responses. The most relevant responses addressed the (1) need for affordable insurance; (2) need to have prompt information on treatment costs patients will face, insurance coverage, and agencies or programs that provide needed products and services; and (3) need to access social workers, navigators, support groups, or others knowledgeable about available resources. Survivors also suggested that physicians become aware of cancer costs and financial issues faced by patients and consider costs in their treatment plans. Older survivors face financial challenges for which there are few available resources. They suggested several avenues to address cancer-related financial issues that may be considered in developing supportive interventions.

Healthcare experience among older cancer survivors: Analysis of the SEER-CAHPS dataset.

PubMed

Halpern, Michael T; Urato, Matthew P; Lines, Lisa M; Cohen, Julia B; Arora, Neeraj K; Kent, Erin E

2018-05-01

Little is known about factors affecting medical care experiences of cancer survivors. This study examined experience of care among cancer survivors and assessed associations of survivors' characteristics with their experience. We used a newly-developed, unique data resource, SEER-CAHPS (NCI's Surveillance Epidemiology and End Results [SEER] data linked to Medicare Consumer Assessment of Healthcare Providers and Systems [CAHPS] survey responses), to examine experiences of care among breast, colorectal, lung, and prostate cancer survivors age >66years who completed CAHPS >1year after cancer diagnosis and survived ≥1year after survey completion. Experience of care was assessed by survivor-provided scores for overall care, health plan, physicians, customer service, doctor communication, and aspects of care. Multivariable logistic regression models assessed associations of survivors' sociodemographic and clinical characteristics with care experience. Among 19,455 cancer survivors with SEER-CAHPS data, higher self-reported general-health status was significantly associated with better care experiences for breast, colorectal, and prostate cancer survivors. In contrast, better mental-health status was associated with better care experience for lung cancer survivors. College-educated and Asian survivors were less likely to indicate high scores for care experiences. Few differences in survivors' experiences were observed by sex or years since diagnosis. The SEER-CAHPS data resources allows assessment of factors influencing experience of cancer among U.S. cancer survivors. Higher self-reported health status was associated with better experiences of care; other survivors' characteristics also predicted care experience. Interventions to improve cancer survivors' health status, such as increased access to supportive care services, may improve experience of care. Copyright © 2017 Elsevier Ltd. All rights reserved.

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.

Employment status and occupational level of adult survivors of childhood cancer in Great Britain: The British childhood cancer survivor study

PubMed Central

Frobisher, Clare; Lancashire, Emma R; Jenkinson, Helen; Winter, David L; Kelly, Julie; Reulen, Raoul C

2017-01-01

The British Childhood Cancer Survivor Study (BCCSS) provides the first detailed investigation of employment and occupation to be undertaken in a large population‐based cohort. Previous studies have been limited by design issues such as using small numbers of survivors with specific diagnoses, and involved limited assessment of employment status and occupational level. The BCCSS includes 17,981 5‐year survivors of childhood cancer. Employment status and occupational level were ascertained by questionnaire from eligible survivors (n = 14,836). Multivariate logistic regression was used to explore factors associated with employment and occupation, and to compare survivors to their demographic peers in the general population. Employment status was available for 10,257 survivors. Gender, current age, cancer type, radiotherapy, age at diagnosis and epilepsy were consistently associated with being: employed; unable to work; in managerial or non‐manual occupations. Overall, survivors were less likely to be working than expected (OR (99% CI): 0.89 (0.81–0.98)), and this deficit was greatest for irradiated CNS neoplasm survivors (0.34 (0.28–0.41)). Compared to the general population, survivors were fivefold more likely to be unable to work due to illness/disability; the excess was 15‐fold among CNS neoplasm survivors treated with radiotherapy. Overall survivors were less likely to be in managerial occupations than expected (0.85 (0.77–0.94)). However, bone sarcoma survivors were more likely to be in these occupations than expected (1.37 (1.01–1.85)) and also similarly for non‐manual occupations (1.90 (1.37–2.62)). Survivors of retinoblastoma (1.55 (1.20–2.01)) and ‘other’ neoplasm group (1.62 (1.30–2.03)) were also more likely to be in non‐manual occupations than expected. PMID:28316069

"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.

Recurrent trauma: Holocaust survivors cope with aging and cancer.

PubMed

Hantman, Shira; Solomon, Zahava

2007-05-01

The current study aims to determine whether elderly Holocaust survivors are affected differently from non-survivors by the adversity of aging and cancer. Holocaust survivors and non-survivors suffering from cancer, were assessed tapping PTSD, psychiatric symptomatology, psychosocial adjustment to illness and coping with the aftermath of the Holocaust. Findings indicate a significant difference between survivors and non-survivors in post-traumatic symptoms and their intensity, survivors endorsing significantly more PTSD symptoms. Survivors were classified into 3 sub-groups, namely "Victims," "Fighters," and "Those who made it". "Victims" reported the highest percentage of persons who met PTSD, psychiatric symptomatology and difficulty coping with the problems of old age. The diversity of responses points to heterogeneity of long-term adaptation and adjustment among Holocaust survivors and similar response to subsequent adversity.

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

Health behaviors of minority childhood cancer survivors.

PubMed

Stolley, Melinda R; Sharp, Lisa K; Tangney, Christy C; Schiffer, Linda A; Arroyo, Claudia; Kim, Yoonsang; Campbell, Richard T; Schmidt, Mary Lou; Breen, Kathleen; Kinahan, Karen E; Dilley, Kim J; Henderson, Tara O; Korenblit, Allen D; Seligman, Katya

2015-05-15

Available data have suggested that childhood cancer survivors (CCSs) are comparable to the general population with regard to many lifestyle parameters. However, to the authors' knowledge, little is known regarding minority CCSs. This cross-sectional study describes and compares the body mass index and health behaviors of African American, Hispanic, and white survivors with each other and with noncancer controls. Participants included 452 adult CCSs (150 African American, 152 Hispanic, and 150 white individuals) recruited through 4 childhood cancer treating institutions and 375 ethnically matched noncancer controls (125 in each racial/ethnic group) recruited via targeted digit dial. All participants completed a 2-hour in-person interview. Survivors and noncancer controls reported similar health behaviors. Within survivors, smoking and physical activity were found to be similar across racial/ethnic groups. African American and Hispanic survivors reported lower daily alcohol use compared with white individuals, but consumed unhealthy diets and were more likely to be obese. This unique study highlights that many minority CCSs exhibit lifestyle profiles that contribute to an increased risk of chronic diseases and late effects. Recommendations for behavior changes must consider the social and cultural context in which minority survivors may live. © 2015 American Cancer Society.

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

Long-Term Effects of Radiation Exposure among Adult Survivors of Childhood Cancer: Results from the Childhood Cancer Survivor Study

PubMed Central

Armstrong, Gregory T.; Stovall, Marilyn; Robison, Leslie L.

2010-01-01

In the last four decades, advances in therapies for primary cancers have improved overall survival for childhood cancer. Currently, almost 80% of children will survive beyond 5 years from diagnosis of their primary malignancy. These improved outcomes have resulted in a growing population of childhood cancer survivors. Radiation therapy, while an essential component of primary treatment for many childhood malignancies, has been associated with risk of long-term adverse outcomes. The Childhood Cancer Survivor Study (CCSS), a retrospective cohort of over 14,000 survivors of childhood cancer diagnosed between 1970 and 1986, has been an important resource to quantify associations between radiation therapy and risk of long-term adverse health and quality of life outcomes. Radiation therapy has been associated with increased risk for late mortality, development of second neoplasms, obesity, and pulmonary, cardiac and thyroid dysfunction as well as an increased overall risk for chronic health conditions. Importantly, the CCSS has provided more precise estimates for a number of dose–response relationships, including those for radiation therapy and development of subsequent malignant neoplasms of the central nervous system, thyroid and breast. Ongoing study of childhood cancer survivors is needed to establish long-term risks and to evaluate the impact of newer techniques such as conformal radiation therapy or proton-beam therapy. PMID:21128808

Topic Modeling of Smoking- and Cessation-Related Posts to the American Cancer Society's Cancer Survivor Network (CSN): Implications for Cessation Treatment for Cancer Survivors Who Smoke.

PubMed

Westmaas, J Lee; McDonald, Bennett R; Portier, Kenneth M

2017-08-01

Smoking is a risk factor in at least 18 cancers, and approximately two-thirds of cancer survivors continue smoking following diagnosis. Text mining of survivors' online posts related to smoking and quitting could inform strategies to reduce smoking in this vulnerable population. We identified posts containing smoking/cessation-related keywords from the Cancer Survivors Network (CSN), an online cancer survivor community of 166 000 members and over 468 000 posts since inception. Unsupervised topic model analysis of posts since 2000 using Latent Dirichlet Allocation extracted 70 latent topics which two subject experts inspected for themes based on representative terms. Posterior analysis assessed the distribution of topics within posts, and the range of themes discussed across posts. Less than 1% of posts (n = 3998) contained smoking/cessation-related terms, and covered topics related to cancer diagnoses, treatments, and coping. The most frequent smoking-related topics were quit smoking methods (5.4% of posts), and the environment for quitters (2.9% of posts), such as the stigma associated with being a smoker diagnosed with cancer and lack of empathy experienced compared to nonsmokers. Smoking as a risk factor for one's diagnosis was a primary topic in only 1.7% of smoking/cessation-related posts. The low frequency of smoking/cessation-related posts may be due to expected criticism/stigma for smoking but may also suggests a need for health care providers to address smoking and assist with quitting in the diagnostic and treatment process. Topic model analysis revealed potential barriers that should be addressed in devising clinical or population-level interventions for cancer survivors who smoke. Although smoking is a major risk factor for cancer, little is known about cancer patients' or survivors' views or concerns about smoking and quitting. This study used text mining of posts to an online community of cancer patients and survivors to investigate contexts in which

Leininger's Ethnonursing Research Methodology and Studies of Cancer Survivors: A Review.

PubMed

Farren, Arlene T

2015-09-01

The purpose of this article is to present the findings of a literature review regarding the use of Leininger's ethnonursing research methodology (ENRM) in studies addressing adult cancer survivors. It is important to learn about differences and similarities among cancer survivors' experiences so that patient-centered, culturally congruent care can be provided. A review of the literature was conducted using databases such as CINAHL and MEDLINE. Search terms included variations on ENRM and cancer survivors. The results were a small number of published studies that used the ENRM examining breast cancer survivors' perceptions and experiences. A review instrument was developed to estimate study quality based on established criteria. The studies are critiqued in relation to the theory-based methodology, evaluation criteria for qualitative research, and study findings are summarized. The author concludes that although there is a paucity of research using ENRM with adult cancer survivors, the preliminary findings of the included studies contribute to what is known about breast cancer survivors. Implications for research include recommendations to increase the use of ENRM to discover the universal and diverse experiences of care practices in adult cancer survivors and use the evidence to develop patient-centered, culturally congruent, quality care for cancer survivors. © The Author(s) 2014.

The Risk of Cataract among Survivors of Childhood and Adolescent Cancer: A Report from the Childhood Cancer Survivor Study

PubMed Central

Chodick, Gabriel; Sigurdson, Alice J.; Kleinerman, Ruth A.; Sklar, Charles A.; Leisenring, Wendy; Mertens, Ann C.; Stovall, Marilyn; Smith, Susan A.; Weathers, Rita E.; Veiga, Lene H. S.; Robison, Leslie L.; Inskip, Peter D.

2016-01-01

With therapeutic successes and improved survival after a cancer diagnosis in childhood, increasing numbers of cancer survivors are at risk of subsequent treatment-related morbidities, including cataracts. While it is well known that the lens of the eye is one of the most radiosensitive tissues in the human body, the risks associated with radiation doses less than 2 Gy are less understood, as are the long- and short-term cataract risks from exposure to ionizing radiation at a young age. In this study, we followed 13,902 five-year survivors of childhood cancer in the Childhood Cancer Survivor Study cohort an average of 21.4 years from the date of first cancer diagnosis. For patients receiving radiotherapy, lens dose (mean: 2.2 Gy; range: 0–66 Gy) was estimated based on radiotherapy records. We used unconditional multivariable logistic regression models to evaluate prevalence of self-reported cataract in relationship to cumulative radiation dose both at five years after the initial cancer diagnosis and at the end of follow-up. We modeled the radiation effect in terms of the excess odds ratio (EOR) per Gy. We also analyzed cataract incidence starting from five years after initial cancer diagnosis to the end of follow-up using Cox regression. A total of 483 (3.5%) cataract cases were identified, including 200 (1.4%) diagnosed during the first five years of follow-up. In a multivariable logistic regression model, cataract prevalence at the end of follow-up was positively associated with lens dose in a manner consistent with a linear dose-response relationship (EOR per Gy = 0.92; 95% CI: 0.65–1.20). The odds ratio for doses between 0.5 and 1.5 Gy was elevated significantly relative to doses <0.5 Gy (OR = 2.2; 95% CI: 1.3–3.7). The results from this study indicate a strong association between ocular exposure to ionizing radiation and long-term risk of pre-senile cataract. The risk of cataract increased with increasing exposure, beginning at lens doses as low as 0

Cancer Survivors: The Success Story That's Straining Health Care.

PubMed

Allen, Summer E

2017-01-01

Since President Richard Nixon declared a "War on Cancer" in 1971, the number of cancer survivors in the United States has quadrupled [1] and is still rising. Thanks to advance in cancer detection and treatment, the almost 15 million cancer survivors in the United States today could grow to some 19 million by 2024 [2]. Increasing survival rates have resulted in a shift: cancer is often treated as a chronic illness rather than a death sentence. However, having so many cancer survivors to monitor, track, and treat has led to growing pains for healthcare providers-forcing them to develop new ways to treat this increasing yet still vulnerable population.

Exploration of Exercise Outcome Expectations among Breast Cancer Survivors

PubMed Central

Hirschey, Rachel; Docherty, Sharron L.; Pan, Wei; Lipkus, Isaac

2016-01-01

Background Exercise is associated with decreased recurrence risk, improved survival and quality of life for breast cancer survivors. However only an estimated 17% - 37% of survivors adhere to the American Cancer Society exercise guidelines. A critical first step to increase exercise among survivors is to understand how they believe exercise will effect them. Objective To explore common exercise outcome expectations among 20 female survivors of stage IA – IIB breast cancer who completed adjuvant treatment and an exercise intervention. Interventions/Methods A mixed-method descriptive study consisting of semi-structured telephone interviews assessed exercise outcome expectations and how the experience of cancer and its treatment influenced expected outcomes of exercise. The qualitative data were analyzed using a summative content analysis procedure; means were calculated for each item of the exercise outcome questionnaire. The qualitative and quantitative data were compared and contrasted. Results The sample was 70% Caucasian and 30% African American with a mean age was 62 years (± 8.5) and average time since treatment completion of 4.2 years (± 1.3). Three themes emerged from the interviews: 1) prevalence of common expectations, 2) pervasive impact of fatigue, and 3) a brighter future. Overall, findings revealed that breast cancer survivors have low levels of agreement that exercise may mitigate late and long-term cancer and treatment effects. Conclusions In general, breast cancer survivors (even those who are motivated to exercise) do not hold strong beliefs that exercise will decrease late and long-term treatment effects. Implications for Practice Clinicians can educate survivors about exercise benefits. PMID:26925999

Sexual Health Concerns Among Cancer Survivors: Testing a Novel Information-Need Measure Among Breast and Prostate Cancer Patients.

PubMed

Crowley, Sheila A; Foley, Sallie M; Wittmann, Daniela; Jagielski, Christina H; Dunn, Rodney L; Clark, Patricia M; Griggs, Jennifer J; Peterson, Catherine; Leonard, Marcia; An, Lawrence C; Wei, John T; Montie, James E; Janz, Nancy K

2016-09-01

While it is recognized that cancer treatment can contribute to problems in sexual function, much less is currently known about the specific sexual health concerns and information needs of cancer survivors. This study tested a new instrument to measure cancer survivors' sexual health concerns and needs for sexual information after cancer treatment. The Information on Sexual Health: Your Needs after Cancer (InSYNC), developed by a multidisciplinary team of experts, is a novel 12-item questionnaire to measure sexual health concerns and information needs of cancer survivors. We tested the measure with a sample of breast and prostate cancer survivors. A convenience sample of 114 cancer survivors (58 breast, 56 prostate) was enrolled. Results of the InSYNC questionnaire showed high levels of sexual concern among cancer survivors. Areas of concern differed by cancer type. Prostate cancer survivors were most concerned about being able to satisfy their partners (57 %) while breast cancer survivors were most concerned with changes in how their bodies worked sexually (46 %). Approximately 35 % of all cancer survivors wanted more information about sexual health. Sexual health concerns and unmet information needs are common among breast and prostate cancer survivors, varying in some aspects by type of cancer. Routine screening for sexual health concerns should be included in comprehensive cancer survivorship care to appropriately address health care needs. The InSYNC questionnaire is one tool that may help clinicians identify concerns facing their patients.

Cancer mortality among atomic bomb survivors exposed as children.

PubMed

Goto, Hitomi; Watanabe, Tomoyuki; Miyao, Masaru; Fukuda, Hiromi; Sato, Yuzo; Oshida, Yoshiharu

2012-05-01

To compare cancer mortality among A-bomb survivors exposed as children with cancer mortality among an unexposed control group (the entire population of Japan, JPCG). The subjects were the Hiroshima and Nagasaki A-bomb survivor groups (0-14 years of age in 1945) reported in life span study report 12 (follow-up years were from 1950 to 1990), and a control group consisting of the JPCG. We estimated the expected number of deaths due to all causes and cancers of various causes among the exposed survivors who died in the follow-up interval, if they had died with the same mortality as the JPCG (0-14 years of age in 1945). We calculated the standardized mortality ratio (SMR) of A-bomb survivors in comparison with the JPCG. SMRs were significantly higher in exposed boys overall for all deaths, all cancers, leukemia, and liver cancer, and for exposed girls overall for all cancers, solid cancers, liver cancer, and breast cancer. In boys, SMRs were significantly higher for all deaths and liver cancer even in those exposed to very low doses, and for all cancers, solid cancers, and liver cancer in those exposed to low doses. In girls, SMRs were significantly higher for liver cancer and uterine cancer in those exposed to low doses, and for leukemia, solid cancers, stomach cancer, and breast cancer in those exposed to high doses. We calculated the SMRs for the A-bomb survivors versus JPCG in childhood and compared them with a true non-exposed group. A notable result was that SMRs in boys exposed to low doses were significantly higher for solid cancer.

Anxiety and depression in working-age cancer survivors: a register-based study.

PubMed

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

2017-05-19

Anxiety and depression can be a long-term strain in cancer survivors. Little is known about the emotional situation of cancer survivors who have to deal with work- and family-related issues. The purpose of this study was to investigate anxiety and depression in working-age cancer survivors and associated factors. A register-based sample of 3370 cancer survivors (25 to 55 years at time of diagnosis) diagnosed up to six years prior to the survey was recruited from two German cancer registries. Demographic and medical characteristics as well as self-reported measures were used. Overall, approximately 40% of the survivors reported moderate to high anxiety scores and approximately 20% reported moderate to high depression scores. Compared to the general population, working-age cancer survivors were more anxious but less depressed (p < .001). Subgroups with regard to time since diagnosis did not differ in anxiety or depression. Anxiety and depression in cancer survivors were associated with various variables. Better social support, family functioning and physical health were associated with lower anxiety and depression. Overall, we found higher anxiety levels in cancer survivors of working-age than in the general population. A considerable portion of cancer survivors reported moderate to high levels of anxiety and depression. The results indicate the need for psychosocial screening and psycho-oncological support e.g. in survivorship programs for working-age cancer survivors. Assessing the physical health, social support and family background might help to identify survivors at risk for higher emotional distress.

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.

SECONDARY GASTROINTESTINAL MALIGNANCIES IN CHILDHOOD CANCER SURVIVORS: A COHORT STUDY

PubMed Central

Henderson, Tara O.; Oeffinger, Kevin C.; Whitton, John; Leisenring, Wendy; Neglia, Joseph; Meadows, Anna; Crotty, Catherine; Rubin, David T.; Diller, Lisa; Inskip, Peter; Smith, Susan A.; Stovall, Marilyn; Constine, Louis S.; Hammond, Sue; Armstrong, Greg T.; Robison, Leslie L.; Nathan, Paul C.

2012-01-01

Background Childhood cancer survivors develop gastrointestinal malignancies more frequently and at a younger age than the general population, but risk factors for their development have not been well characterized. Objective To determine the risk and associated risk factors for gastrointestinal subsequent malignant neoplasms (SMN) in childhood cancer survivors. Design Retrospective cohort study. Setting The Childhood Cancer Survivor Study, a multi-center study of childhood cancer survivors diagnosed between 1970 and 1986. Patients 14,358 survivors of a malignancy diagnosed at < 21 years who had survived for 5 or more years from initial diagnosis. Measurements Standardized incidence ratios (SIR) for gastrointestinal SMN were calculated using age-specific population data. Multivariate Cox regression models identified associations between risk factors and gastrointestinal SMN development. Results At median follow-up of 22.8 years (range: 5.5-30.2), 45 gastrointestinal malignancies were identified. Gastrointestinal SMN risk was 4.6-fold higher in childhood cancer survivors than the general population (95% confidence interval [CI]: 3.5-6.1). Colorectal cancer SIR was 4.2 (95% CI: 2.8-6.3). The highest gastrointestinal SMN risk was associated with abdominal radiation (SIR=11.2, 95% CI: 7.6-16.4). However, survivors not exposed to radiation had a significantly increased risk (SIR=2.4, 95% CI-1.4-3.9). In addition to abdominal radiation, high dose procarbazine (RR=3.2, 95% CI 1.1-9.4) and platinum drugs (RR 7.6, 95% CI: 2.3-25.5) independently increased the gastrointestinal SMN risk. Limitations This cohort has not yet attained an age at which gastrointestinal malignancy risk is greatest. Conclusions Childhood cancer survivors, particularly those exposed to abdominal radiation, are at increased risk for gastrointestinal SMN. These findings suggest that surveillance of at-risk childhood cancer survivors should commence at a younger age than recommended for the general

Dietary quality, caloric intake, and adiposity of childhood cancer survivors and their siblings: an analysis from the cardiac risk factors in childhood cancer survivors study.

PubMed

Landy, David C; Lipsitz, Stuart R; Kurtz, Joy M; Hinkle, Andrea S; Constine, Louis S; Adams, M Jacob; Lipshultz, Steven E; Miller, Tracie L

2013-01-01

Childhood cancer survivors are at increased risk of cardiovascular disease, in part because of adiposity. Whether survivors have healthy diets and whether dietary quality is associated with adiposity among survivors are not known. Survivors and siblings from the Cardiac Risk Factors in Childhood Cancer Survivors Study completed 3-day food records that were used to estimate daily caloric intake relative to recommended and dietary quality using the Healthy Eating Index-2005 (HEI). Medical records were reviewed for cancer therapies. Body composition was measured by dual-energy x-ray absorptiometry. Of 91 childhood cancer survivors and 30 sibling controls, there were no marked differences in mean daily caloric intakes (98% vs. 100% of recommended) or HEI total scores (55.5 vs. 53.3), respectively, with both groups scoring worst for the consumption of dark green vegetables and whole grains. Survivors exposed to cranial irradiation had lower total HEI scores (-6.4, P = 0.01). Among survivors, better dietary quality, as reflected by the total HEI score, was associated with decreasing percent body fat (β = -0.19, P = 0.04). Survivors consume diets similar to their siblings although these diets are only moderately adherent to current guidelines. Decreased dietary quality is associated with higher body fat and receipt of cranial irradiation in survivors.

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.

Employment participation and work experience of male cancer survivors: a NOCWO study.

PubMed

Gunnarsdottir, Holmfridur K; Vidarsdottir, Halldora; Rafnsdottir, Gudbjorg Linda; Tryggvadottir, Laufey; Olafsdottir, Elinborg J; Lindbohm, Marja-Liisa

2013-01-01

To investigate whether employment status and work experiences, assessed in terms of job resources (organizational culture and superiors' and co-workers' support), commitment to organization, work motives, and experiences of discrimination, differ between survivors of prostate or testicular cancer or lymphoma and cancer-free reference subjects. Questionnaires were sent to 1349 male cancer survivors and 2666 referents in Denmark, Finland, Iceland, and Norway. Valid responses were 59% and 45%, respectively. Odds ratios (OR) and 95% confidence intervals (CI) were estimated with logistic regression models. Compared to the referents, survivors of lymphoma and prostate cancer were less likely to be employed (OR=0.53; CI: 0.30-0.95 and OR=0.50; CI: 0.35-0.73, respectively), but decreased employment was not evident among testicular cancer survivors. Testicular cancer survivors experienced less discrimination at work than did the referents, for example, testicular cancer survivors were less likely to report that their colleagues doubted their ability to carry out their work tasks (OR=0.38; CI: 0.17-0.83). Lymphoma survivors were less likely than the referents to praise their workplace as an enjoyable place to work (OR=0.48; CI: 0.26-0.88). The prostate cancer survivors were more likely than the referents to find the organizational climate competitive, distrustful, and suspicious. Employment participation and work experiences of male cancer survivors varied substantially according to type of cancer. Occupational therapists and other health care personnel should keep this in mind when assisting cancer survivors in identifying their strengths and limitations at work.

Web-based survey of fertility issues in young women with breast cancer.

PubMed

Partridge, Ann H; Gelber, Shari; Peppercorn, Jeffrey; Sampson, Ebonie; Knudsen, Katherine; Laufer, Marc; Rosenberg, Randi; Przypyszny, Michele; Rein, Alison; Winer, Eric P

2004-10-15

Young women with breast cancer often seek advice about whether treatment will affect their fertility. We sought to gain a better understanding of women's attitudes about fertility and how these concerns affect decision making. We developed a survey about fertility issues for young women with a history of early-stage breast cancer. The survey was e-mailed to all registered Young Survival Coalition survivor members (N = 1,702). E-mail reminders were used. Six hundred fifty-seven eligible respondents completed the survey. Mean age at breast cancer diagnosis was 32.9 years; mean current age was 35.8 years. Ninety percent of women were white; 62% were married; 76% were college graduates. Stages at diagnosis were as follows: 0, 10%; I, 27%; II, 47%; III, 13%. Sixty-two percent of women were within 2 years of diagnosis. Fifty-seven percent recalled substantial concern at diagnosis about becoming infertile with treatment. In multivariate logistic regression, greater concern about infertility was associated with wish for children/more children (odds ratio [OR], 120; P < .0001), number of prior pregnancies (OR, 0.78; P = .01), and prior difficulty conceiving (OR, 1.86; P = .08). Twenty-nine percent of women reported that infertility concerns influenced treatment decisions. Seventy-two percent of women reported discussing fertility concerns with their doctors; 51% felt their concerns were addressed adequately. Women seemed to overestimate their risk of becoming postmenopausal with treatment. Fertility after treatment is a major concern for young women with breast cancer. There is a need to communicate with and educate young patients regarding fertility issues at diagnosis and a need for future research directed at preserving fertility for young breast cancer survivors.