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

Recall of Fertility Discussion by Adolescent Female Cancer Patients: A Survey-Based Pilot Study.

PubMed

Zarnegar, Sara; Gosiengfiao, Yasmin; Rademaker, Alfred; Casey, Robert; Albritton, Karen H

2018-04-01

Many adolescent female cancer patients will survive into their reproductive years. Pediatric oncologists are advised to discuss oncofertility during treatment planning. In this pilot study, 19 adolescent females completed a retrospective survey assessing recall of a fertility discussion, satisfaction with fertility knowledge, and multiple factors that may influence recall, including parental involvement in decision-making. Eleven respondents (58%) remembered a discussion about infertility risk and 9 (47%) about fertility preservation. Most who recalled a discussion were satisfied with their fertility knowledge (10/11, 90.9%). In this study, we validated the feasibility of survey administration and identified trends in oncofertility counseling at our center.

Health-Related Quality of Life of Adolescent and Young Adult Patients With Cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience Study

PubMed Central

Smith, Ashley Wilder; Bellizzi, Keith M.; Keegan, Theresa H.M.; Zebrack, Brad; Chen, Vivien W.; Neale, Anne Victoria; Hamilton, Ann S.; Shnorhavorian, Margarett; Lynch, Charles F.

2013-01-01

Purpose Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Patients and Methods Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Results Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Conclusion Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location.

PubMed

Warner, Echo L; Fowler, Brynn; Pannier, Samantha T; Salmon, Sara K; Fair, Douglas; Spraker-Perlman, Holly; Yancey, Jeffrey; Randall, R Lor; Kirchhoff, Anne C

2018-05-03

To describe how distance to treatment location influences patient navigation preferences for adolescent and young adult (AYA) cancer patients and survivors. This study is part of a statewide needs assessment to inform the development of an AYA cancer patient and survivor navigation program. Participants were recruited from outpatient oncology clinics in Utah. Eligible participants had been diagnosed with cancer between ages 15-39 and had completed at least 1 month of treatment. Participants completed a semi-structured interview on preferences for patient navigation. Summary statistics of demographic and cancer characteristics were generated. Thematic content analysis was used to describe navigation preferences among participants classified as distance (≥20 miles) and local (<20 miles), to explain differences in their needs based on distance from their treatment center. The top three patient navigation needs were general information, financial, and emotional support. More local patients were interested in patient navigation services (95.2%) compared to distance participants (77.8%). Fewer local (38.1%) than distance participants (61.1%) reported challenges getting to appointments, and distance patients needed specific financial support to support their travel (e.g., fuel, lodging). Both local and distance patients desired to connect with a navigator in person before using another form of communication and wanted to connect with a patient navigator at the time of initial diagnosis. Distance from treatment center is an important patient navigation consideration for AYA cancer patients and survivors. After initially connecting with AYAs in person, patient navigators can provide resources remotely to help reduce travel burden.

Cumulative effective dose associated with computed tomography examinations in adolescent trauma patients.

PubMed

Choi, Seung Joon; Kim, Eun Young; Kim, Hyung Sik; Choi, Hye-Young; Cho, Jinseong; Yang, Hyuk Jun; Chung, Yong Eun

2014-07-01

The aims of this study were to analyze cumulative effective dose (cED) and to assess lifetime attributable risk (LAR) of cancer due to radiation exposure during computed tomography (CT) examinations in adolescent trauma patients. Between January 2010 and May 2011, the adolescent patients with trauma were enrolled in this study. Numbers of CT examinations and body regions examined were collated, and cEDs were calculated using dose-length product values and conversion factors. Lifetime attributable risk for cancer incidence and cancer-associated mortality were quantified based on the studies of survivors of the atomic bombs on Japan. Data were stratified according to severity of trauma: minor trauma, injury severity score of less than 16; and major trauma, injury severity score of 16 or greater. A total of 698 CT scans were obtained on the following regions of 484 adolescent patients: head CT, n = 647; rest of the body, n = 41; and thorax, n = 10. Mean cED per patient was 3.4 mSv, and mean LARs for cancer incidence and mortality were 0.05% and 0.02%, respectively. The majority of patients (98.4%) experienced minor trauma, and their mean cED and LARs for cancer incidence and mortality (3.0 mSv and 0.04% and 0.02%, respectively) were significantly lower than those of patients with major trauma (24.3 mSv and 0.31% and 0.15%, respectively, all P values < 0.001). The overall radiation-induced cancer risk due to CT examinations performed for the initial assessment of minor trauma was found to be relatively low in adolescent patients. However, adolescent patients with major trauma were exposed to a substantial amount of radiation during multiple CT examinations.

Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study.

PubMed

Smith, Ashley Wilder; Bellizzi, Keith M; Keegan, Theresa H M; Zebrack, Brad; Chen, Vivien W; Neale, Anne Victoria; Hamilton, Ann S; Shnorhavorian, Margarett; Lynch, Charles F

2013-06-10

Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.

Medical and psychosocial associates of nonadherence in adolescents with cancer.

PubMed

Hullmann, Stephanie E; Brumley, Lauren D; Schwartz, Lisa A

2015-01-01

The current study examined adherence to medication regimens among adolescents with cancer by applying the Pediatric Self-Management Model. Adolescents and their parents reported on adherence to medication, reasons for nonadherence, and patient-, family-, and community-level psychosocial variables. Adolescent- and parent-reported adherence were significantly correlated, with about half of the sample reporting perfect adherence. The majority reported "just forgot" as the most common reason for missed medication. Patient-, family-, and community-level variables were examined as predictors of adherence. With regard to individual factors, adolescents who endorsed perfect adherence reported a greater proportion of future-orientated goals and spent fewer days in outpatient clinic visits. For family factors, adolescents who endorsed perfect adherence reported greater social support from their family and were more likely to have a second caregiver who they perceived as overprotective. The community-level variable (social support from friends) tested did not emerge as a predictor of adherence. The results of this study provide direction for intervention efforts to target adolescent goals and family support in order to increase adolescent adherence to cancer treatment regimens. © 2014 by Association of Pediatric Hematology/Oncology Nurses.

Empowering Preadolescent and Adolescent Leukemia Patients.

ERIC Educational Resources Information Center

Price, Kathy

1988-01-01

Describes effects of leukemia diagnosis and treatment for preadolescents and adolescents. Discusses strategies for social workers to assist these cancer patients in participating actively in the day-to-day management of their own care. (ABL)

Problem-solving skills, parent-adolescent communication, dyadic functioning, and distress among adolescents with cancer.

PubMed

Viola, Adrienne; Taggi-Pinto, Alison; Sahler, Olle Jane Z; Alderfer, Melissa A; Devine, Katie A

2018-05-01

Some adolescents with cancer report distress and unmet needs. Guided by the disability-stress-coping model, we evaluated associations among problem-solving skills, parent-adolescent cancer-related communication, parent-adolescent dyadic functioning, and distress in adolescents with cancer. Thirty-nine adolescent-parent dyads completed measures of these constructs. Adolescents were 14-20 years old on treatment or within 1 year of completing treatment. Better problem-solving skills were correlated with lower adolescent distress (r = -0.70, P < 0.001). Adolescent-reported cancer-related communication problems and dyadic functioning were not significantly related to adolescent distress (rs < 0.18). Future work should examine use of problem-solving interventions to decrease distress for adolescents with cancer. © 2018 Wiley Periodicals, Inc.

[Adolescents with cancer: the "Youth Project" at the Istituto Nazionale Tumori in Milan].

PubMed

Ferrari, Andrea; Veneroni, Laura; Clerici, Carlo Alfredo; Spreafico, Filippo; Terenziani, Monica; Massimino, Maura; Luksch, Roberto; Casanova, Michela; Meazza, Cristina; Polastri, Daniela; Gandola, Lorenza

2013-01-01

Adolescents with cancer are a particular group of patients who are less likely to gain access to optimal cancer services at comprehensive cancer Centers: many studies suggest adolescents fare less well than children with the same disease. The paper describes the key issues of the "Youth Project" of the Pediatric Oncology Unit IRCCS Fondazione Istituto Nazionale Tumori in Milan, dedicated to adolescents (over 15 years old) and young adults (up to 25 years old) with solid tumors. This project is a possible clinical and organizational model to address the unique needs of patients in this age group and for bridge the gap in access to care and in recruitment in clinical trials, in clinical and psycho-social management and in curves of healing. The paper also describes the activity of the Adolescent Commission established by the Italian Pediatric Hematology Oncology (AIEOP).

Physical Symptoms, Perceived Social Support, and Affect in Adolescents with Cancer

PubMed Central

WESLEY, KIMBERLY M.; ZELIKOVSKY, NATALIYA; SCHWARTZ, LISA A.

2015-01-01

Treatment for cancer among adolescents is often more intense and lasts longer than treatment for older or younger patients. It typically causes pain, fatigue, and nausea and affects social and emotional well-being. This study examined the relationships among demographics, physical symptoms, perceived social support from friends and family, and affect (positive and negative) in 102 adolescents (age 13–19) with cancer using correlational analyses. Additionally, perceived social support was explored as a mediator and moderator of the relationship between physical symptoms and affect using regression. Females reported significantly lower friend support and higher negative affect compared to males. Minority participants were more likely to endorse physical symptoms and less negative affect compared to White respondents. Higher report of physical symptoms was significantly related to greater negative affect, whereas higher perceived social support from friends was related to higher positive affect. Adolescents consistently reported high levels of social support from family and friends. Additionally, adolescents tended to report average levels of positive affect and low levels of negative affect compared to healthy populations. No significant mediation or moderation effects were found. This research highlights that females and minorities, and those with greater physical symptoms, may be more vulnerable to poor adjustment to cancer during adolescence. However, overall this study lends support to the notion that adolescents with cancer are an especially resilient population, as these patients endorsed generally high levels of social support and positive affect, with low levels of negative affect. PMID:23844924

Adolescent Cancer Education (ACE) to increase adolescent and parent cancer awareness and communication: study protocol for a cluster randomised controlled trial.

PubMed

Kyle, Richard G; Macmillan, Iona; Rauchhaus, Petra; O'Carroll, Ronan; Neal, Richard D; Forbat, Liz; Haw, Sally; Hubbard, Gill

2013-09-08

Raising cancer awareness among adolescents has potential to increase their knowledge and confidence in identifying cancer symptoms and seeking timely medical help in adolescence and adulthood. Detecting cancer at an early stage is important because it reduces the risk of dying of some cancers and thereby contributes to improved cancer survival. Adolescents may also play an important role in increasing cancer communication within families. However, there are no randomised controlled trials (RCT) of the effectiveness of school-based educational interventions to increase adolescents' cancer awareness, and little is known about the role of adolescents in the upward diffusion of cancer knowledge to parents/carers. The aim of this study is to determine the effectiveness of a school-based educational intervention to raise adolescent and parent cancer awareness and adolescent-parent cancer communication. The Adolescent Cancer Education (ACE) study is a school-based, cluster RCT. Twenty secondary schools in the area covered by Glasgow City Council will be recruited. Special schools for adolescents whose additional needs cannot be met in mainstream education are excluded. Schools are randomised to receive a presentation delivered by a Teenage Cancer Trust educator in Autumn 2013 (intervention group) or Spring 2014 following completion of six-month follow-up measures (control group). Participants will be students recruited at the end of their first year of secondary education (S1) (age 12 to 13 years) and one parent/carer for each student, of the student's choice. The primary outcome is recognition of cancer symptoms two weeks post-intervention. Secondary outcomes are parents' cancer awareness and adolescent-parent cancer communication. Outcomes will be assessed at baseline (when adolescents are in the final term of S1), two-week, and six-month follow-up (when adolescents are in S2, age 13 to 14 years). Differences in outcomes between trial arms will be tested using

Pilot Study of Massage to Improve Sleep and Fatigue in Hospitalized Adolescents With Cancer.

PubMed

Jacobs, Shana; Mowbray, Catriona; Cates, Lauren Muser; Baylor, Allison; Gable, Christopher; Skora, Elizabeth; Estrada, Monica; Cheng, Yao; Wang, Jichuan; Lewin, Daniel; Hinds, Pamela

2016-05-01

Adolescents with cancer experience many troubling symptoms, including sleep disruptions that can affect mood and quality of life. Massage is a safe and popular intervention that has demonstrated efficacy in pediatric and adult patients with cancer. This study aimed to assess the feasibility of conducting a massage intervention to help with sleep in hospitalized adolescent oncology patients. Adolescents ages 12-21 with cancer who were expected to be hospitalized for at least four consecutive nights were recruited from the inpatient unit at Children's National Health System and randomized to either massage intervention or a waitlist control. Patients in the intervention group received one massage per night, for two or three nights. Sleep was measured with actigraphy and patient and proxy reported instruments were used to measure fatigue, mood, and anxiety. The majority (78%) of patients approached for the study consented, and almost all patients in the intervention group (94%) received at least one massage, 69% received two, and rates of completion of instruments among adolescents were high demonstrating feasibility. There were trends toward increased night time and overall sleep in the intervention group compared with standard of care, but no differences between groups in the patient reported outcome measures. Participant and parent feedback on the intervention was positive and was the impetus for starting a clinical massage service at the hospital. Massage for hospitalized adolescents with cancer is feasible, well received, and can potentially improve patients' sleep. A randomized multicenter efficacy study is warranted. © 2016 Wiley Periodicals, Inc.

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

Adolescents' Experiences When Living With a Parent With Cancer: A Qualitative Study.

PubMed

Azarbarzin, Mehrdad; Malekian, Azadeh; Taleghani, Fariba

2016-01-01

Cancer affects not only the patient but also their entire family, especially adolescents. Adolescents whose parents are ill may manifest their distress through changes in school performance, physical complaints of pain and discomfort, as well as changes in social and interpersonal relations. There has been very little research about the effects of cancer on adolescents in Iran. The purpose of this qualitative study was to explore the Iranian adolescents' experiences when living with a parent with cancer. In this research, the descriptive-explorative approach was used. There were a total of 27 participants. Purposeful sampling was used and data collection methods were semi-structured deep interviews. Constant comparative analysis was used to study the data. The findings of this study showed that the main experiences of these adolescents were categorized into seven themes: 1- psychological problems of adolescents; 2- supportive-educative needs; 3- cancer as a two edged sword in family relationships; 4- stages of confrontation with the parent's cancer; 5- effect of cancer on social dimensions; 6- affective and helpful supportive agents; 7- Need of support for education under special conditions. This research showed that Iranian adolescents had the same experiences as other adolescents in other countries in many aspects yet in some issues, such as religious strategy, they had strong religious beliefs that would help them cope with their parents' cancer. Also it was shown that we must plan a program in which education and support should be provided to enable adolescents to cope with this detrimental situation with minimal disruption.

Adolescent meat intake and breast cancer risk

PubMed Central

Farvid, Maryam S; Cho, Eunyoung; Chen, Wendy Y; Eliassen, A. Heather; Willett, Walter C

2015-01-01

The breast is particularly vulnerable to carcinogenic influences during adolescence due to rapid proliferation of mammary cells and lack of terminal differentiation. We investigated consumption of adolescent red meat and other protein sources in relation to breast cancer risk in the Nurses' Health Study II cohort. We followed prospectively 44,231 women aged 33-52 years who, in 1998, completed a detailed questionnaire about diet during adolescence. Relative risks (RR) and 95% confidence intervals (95%CI) were estimated using Cox proportional hazard regression. We documented 1132 breast cancer cases during 13-year follow-up. In multivariable Cox regression models with major breast cancer risk factors adjustment, greater consumption of adolescent total red meat was significantly associated with higher premenopausal breast cancer risk (highest vs lowest quintiles, RR, 1.42; 95%CI, 1.05-1.94; Ptrend=0.007), but not postmenopausal breast cancer. Adolescent poultry intake was associated with lower risk of breast cancer overall (RR, 0.75; 95%CI, 0.59-0.96; for each serving/day). Adolescent intakes of iron, heme iron, fish, eggs, legumes and nuts were not associated with breast cancer. Replacement of one serving/day of total red meat with one serving of combination of poultry, fish, legumes, and nuts was associated with a 16% lower risk of breast cancer overall (RR, 0.84; 95%CI, 0.74-0.96) and a 24% lower risk of premenopausal breast cancer (RR, 0.76; 95%CI, 0.64-0.92). Higher consumption of red meat during adolescence was associated with premenopausal breast cancer. Substituting other dietary protein sources for red meat in adolescent diet may decrease premenopausal breast cancer risk. PMID:25220168

Who cares for adolescents and young adults with cancer in Brazil?

PubMed

Martins, Helena T G; Balmant, Nathalie V; de Paula Silva, Neimar; Santos, Marceli de O; Reis, Rejane de S; de Camargo, Beatriz

2017-09-06

Approximately 6% of all cancers arise in adolescents and young adults. Currently, the ward type best placed to treat this patient group remains controversial. The aim of this study was to evaluate exactly where adolescents and young adults with cancer are treated in Brazil. Data were extracted from 271 Brazilian hospital-based cancer registries (2007-2011), including all five national regions (North, Northeast, Midwest, South, and Southeast). Variables included gender, age, ethnicity, National Code of Health Establishment, hospital unit state, and region. Tumors were classified according to the World Health Organization classification for adolescents and young adults with cancer. Odds ratios with 95% confidence intervals were computed by unconditional logistic regression. Most patients were managed on medical oncology wards, followed by pediatric oncology and then by non-specialist wards. Of patients aged 15-19 years, 49% were managed on pediatric wards; most of the older patients (96%; aged 20-24) were managed on adult wards. Patients were more likely to be seen in medical oncology wards as their age increased (OR=2.03 [1.98-2.09]), or if they were based in the South (OR=1.50 [1.29-1.73]). Conversely, bone tumors were less likely to be treated (decreased OR) on medical oncology wards, regardless of age, gender, and region. An elevated risk of treatment on medical oncology wards was observed for older patients and those treated in the South. Bone tumors were generally treated in pediatric oncology wards, while skin cancers were treated in medical oncology wards, regardless of age, gender, and region. Published by Elsevier Editora Ltda.

Adolescent Cancer Education (ACE) to increase adolescent and parent cancer awareness and communication: study protocol for a cluster randomised controlled trial

PubMed Central

2013-01-01

Background Raising cancer awareness among adolescents has potential to increase their knowledge and confidence in identifying cancer symptoms and seeking timely medical help in adolescence and adulthood. Detecting cancer at an early stage is important because it reduces the risk of dying of some cancers and thereby contributes to improved cancer survival. Adolescents may also play an important role in increasing cancer communication within families. However, there are no randomised controlled trials (RCT) of the effectiveness of school-based educational interventions to increase adolescents’ cancer awareness, and little is known about the role of adolescents in the upward diffusion of cancer knowledge to parents/carers. The aim of this study is to determine the effectiveness of a school-based educational intervention to raise adolescent and parent cancer awareness and adolescent-parent cancer communication. Methods The Adolescent Cancer Education (ACE) study is a school-based, cluster RCT. Twenty secondary schools in the area covered by Glasgow City Council will be recruited. Special schools for adolescents whose additional needs cannot be met in mainstream education are excluded. Schools are randomised to receive a presentation delivered by a Teenage Cancer Trust educator in Autumn 2013 (intervention group) or Spring 2014 following completion of six-month follow-up measures (control group). Participants will be students recruited at the end of their first year of secondary education (S1) (age 12 to 13 years) and one parent/carer for each student, of the student’s choice. The primary outcome is recognition of cancer symptoms two weeks post-intervention. Secondary outcomes are parents’ cancer awareness and adolescent-parent cancer communication. Outcomes will be assessed at baseline (when adolescents are in the final term of S1), two-week, and six-month follow-up (when adolescents are in S2, age 13 to 14 years). Differences in outcomes between trial arms

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

PubMed

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

2018-06-01

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

Differentiated thyroid cancer in children and adolescents.

PubMed

Farahati, J; Parlowsky, T; Mäder, U; Reiners, C; Bucsky, P

1998-08-01

There have been only a few studies on differentiated childhood thyroid cancer (DTC) in children and adolescents. We analyzed the characteristics of DTC with respect to age, gender and histology in 114 patients under 18 years of age. In a questionnaire-based survey, data of 114 patients, aged between 3 years and 18 years, was collected from 65 clinical institutions in Germany. Characteristics of 80 females and 34 males were evaluated, and the prognostic effect of age, gender, histology, multicentric growth, tumor stage and N-status on distant metastases was tested using multivariate discriminant analysis. Between-group comparison was performed using student t-test and chi-squared test. The incidence of DTC in females was higher than in males with a peak of female:male ratio at puberty, which was more pronounced in children with papillary thyroid cancer, but not with follicular thyroid cancer. Papillary thyroid cancer was associated with more advanced disease (P=0.009), more lymph-node involvement (P=0.007) and more distant metastases (P=0.02) compared with follicular thyroid cancer. Multivariate analysis showed advanced tumor stage as the only significant factor (P=0.02) associating with distant metastasis. It can be concluded that in children and adolescents: 1. The incidence of papillary thyroid cancer is higher in females than males, with a peak at puberty. 2. The only significant factor associated with distant metastases is the advanced tumor stage. 3. Childhood thyroid cancer is frequently associated with lymph-node involvement, distant metastases and advanced tumor stage. 4. Papillary childhood thyroid cancer is more aggressive than follicular type.

Adolescent meat intake and breast cancer risk.

PubMed

Farvid, Maryam S; Cho, Eunyoung; Chen, Wendy Y; Eliassen, A Heather; Willett, Walter C

2015-04-15

The breast is particularly vulnerable to carcinogenic influences during adolescence due to rapid proliferation of mammary cells and lack of terminal differentiation. We investigated consumption of adolescent red meat and other protein sources in relation to breast cancer risk in the Nurses' Health Study II cohort. We followed prospectively 44,231 women aged 33-52 years who, in 1998, completed a detailed questionnaire about diet during adolescence. Relative risks (RR) and 95% confidence intervals (95%CI) were estimated using Cox proportional hazard regression. We documented 1132 breast cancer cases during 13-year follow-up. In multivariable Cox regression models with major breast cancer risk factors adjustment, greater consumption of total red meat in adolescence was significantly associated with higher premenopausal breast cancer risk (highest vs. lowest quintiles, RR, 1.43; 95%CI, 1.05-1.94; Ptrend  = 0.007), but not postmenopausal breast cancer. Adolescent intake of poultry was associated with lower risk of breast cancer overall (RR, 0.76; 95%CI, 0.60-0.97; for each serving/day). Adolescent intakes of iron, heme iron, fish, eggs, legumes and nuts were not associated with breast cancer. Replacement of one serving/day of total red meat with one serving of combination of poultry, fish, legumes, and nuts was associated with a 15% lower risk of breast cancer overall (RR, 0.85; 95%CI, 0.74-0.96) and a 23% lower risk of premenopausal breast cancer (RR, 0.77; 95%CI, 0.64-0.92). In conclusion, higher consumption of red meat during adolescence was associated with premenopausal breast cancer. Substituting other dietary protein sources for red meat in adolescent diet may decrease premenopausal breast cancer risk. © 2014 UICC.

The Role of Parent-Adolescent Concordance in Compliance with Cancer Chemotherapy.

ERIC Educational Resources Information Center

Tebbi, Cameron K.; And Others

1988-01-01

Studied 16 parent/adolescent cancer patient pairs on their knowledge and understanding of illness, medications and treatments, and their medication compliance. Found that adolescent responses closely matched those of their parents on all topics. Age was positively correlated with agreement for medication instructions. Findings have implications…

What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients.

PubMed

Cheung, Christabel K; Zebrack, Brad

2017-01-01

Cancer treatment programs and community-based support organizations are increasingly producing information and support resources geared to adolescent and young adult patients (AYAs); however, systematically-derived knowledge about user preferences for these resources is lacking. The primary purpose of this study was to generate findings from informed AYA cancer patients that resource developers can use to create products consistent with AYAs' expressed preferences for information and support. Utilizing a modified Delphi technique, AYA cancer patients identified barriers to optimal AYA cancer care, cancer resources that address their needs, and specific characteristics of cancer resources they find helpful. The Delphi panel consisted of a convenience sample of 21 patients aged 18-39 years, who were diagnosed with cancer between ages 15-39 and were no more than 8 years out from cancer treatment at the time of the study. Survey data were collected in three consecutive and iterative rounds over the course of 6 months in 2015. Findings indicated that AYA patients prefer resources that reduce feelings of loneliness, create a sense of community or belonging, and provide opportunities to meet other AYA patients. Among the top barriers to optimal cancer care, AYAs identified a lack of cancer care providers specializing in AYA care, a lack of connection to an AYA patient community, and their own lack of ability to navigate the health system. Participants also described aspects of cancer information and supportive care resources that they believe address AYAs' concerns. Information derived from this study will help developers of cancer information and support resources to better reach their intended audience. From the point of view of AYA cancer patients, optimal cancer care and utilization of information and support resources requires that cancer support programs foster meaningful connections among AYA patients. Results also suggest that patient resources should equip

Emerging issues among adolescent and young adult cancer survivors.

PubMed

Patterson, Pandora; McDonald, Fiona E J; Zebrack, Brad; Medlow, Sharon

2015-02-01

To review the characteristics of cancer in the adolescence and young adult age group; the medical, psychosocial and behavioral late effects; survivorship care planning and transition; current research priorities; and practice implications. Published articles, research studies and position statements. Survivors of cancers that occurred during adolescence and young adulthood (AYA) are confronted with the dual demands of managing their transition to independent adulthood, concurrently with their transition from cancer patient to cancer survivors, with an associated reduction in support from medical services. AYA survivors also face complex medical, psychosocial and behavioral late effects, including fertility and mental health issues. An understanding of the impact of cancer diagnoses among this age group, including survivors' abilities to reintegrate into 'normal' life and potential long term consequences, is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer. Copyright © 2015 Elsevier Inc. All rights reserved.

"There's no reason why": a campaign to raise cancer awareness among adolescents.

PubMed

Magni, Chiara; Maggioni, Francesca; Ricci, Angelo; Barisone, Elena; Jankovic, Momcilo; Postiglione, Emma Sarlo; Cargnel, Enrica; Barricelli, Barbara Rita; Valtolina, Stefano; Veneroni, Laura; Chiaravalli, Stefano; Lapidari, Pietro; Capelletti, Mirko; Clerici, Carlo A; Biondi, Andrea; Ferrari, Andrea

2016-06-02

Adolescents with cancer often experience a longer diagnostic delay than children, mainly because they take longer to go to a doctor. The Italian Society for Adolescents with Oncohematological Diseases (SIAMO) has launched an information campaign focusing on raising adolescents' awareness of the importance of diagnosing cancer early. The concepts of the campaign were developed by a scientific committee of clinicians, cancer patients and their parents, and marketing experts. The title of the campaign is "There's no reason why". A video has been launched on TV channels and the Internet, and the final frame refers viewers to the SIAMO website, which provides advice to help adolescents interpret any symptoms they experience. The video has had 12,181 views. In the 6 months following the launch of the campaign, the SIAMO website page dedicated to the campaign was opened by 9,767 viewers for a total of 13,632 views. Though it remains very difficult to judge the efficacy of this initiative, the value of a campaign focusing on improving the adolescent population's cancer awareness is supported by the large number of studies published on the diagnostic delay in this age group. Our campaign goes to show the importance of ensuring cooperation between the different stakeholders involved in the global care of adolescents with cancer.

Recent developments in supporting adolescent and young adult siblings of cancer patients.

PubMed

Patterson, Pandora; Medlow, Sharon; McDonald, Fiona E J

2015-07-01

The psychosocial needs of adolescent and young adult (AYA) siblings of cancer patients are easily overlooked. Accordingly, the evidence base informing short and long-term outcomes for these young people is sparse. This review provides an overview of recent research highlighting the experiences, unmet needs and psychosocial issues of AYA siblings, together with recent interventions. The reviewed studies bring focus to the range of informational and supportive care needs that typically remain unmet in AYA siblings. The limited number of interventions designed specifically for this group not only appear to have positive results but also underscore the need for effective risk stratification preintervention and tailoring of interventions to the specific needs of participants. AYA siblings of cancer patients display a range of psychosocial symptoms that can be ameliorated with age-appropriate information and targeted intervention programs. Limited research suggests that the majority of unmet needs for AYA siblings seem to occur during the acute phases of the brother or sister's initial diagnosis, treatment and relapse. Further research is required on siblings' long-term psychosocial assessment and management, bereavement, family systems, the impact of the cancer experience on siblings' personality and identity, and the development and evaluation of tailored psychosocial interventions. Policy research is also required to identify opportunities for expanding established healthcare systems to include sibling support.

Information needs of adolescent and young adult cancer patients and their parent-carers.

PubMed

McCarthy, Maria C; McNeil, Robyn; Drew, Sarah; Orme, Lisa; Sawyer, Susan M

2018-05-01

This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

Post-Traumatic Growth and Resilience in Adolescent and Young Adult Cancer Patients: An Overview.

PubMed

Greup, Suzanne R; Kaal, Suzanne E J; Jansen, Rosemarie; Manten-Horst, Eveliene; Thong, Melissa S Y; van der Graaf, Winette T A; Prins, Judith B; Husson, Olga

2018-02-01

The aim of this study was to provide an overview of the literature on post-traumatic growth (PTG) and resilience among adolescent and young adult (AYA) cancer patients. A literature search in Embase, PsychInfo, PubMed, Web of Science, Cochrane Library, and Cinahl was carried out. Thirteen articles met the pre-defined inclusion criteria. Qualitative interview studies showed that AYA cancer patients report PTG and resilience: PTG is described by AYA cancer patients in terms of benefit finding, including changing view of life and feeling stronger and more confident, whereas resilience is described as a balance of several factors, including stress and coping, goals, optimism, finding meaning, connection, and belonging. Quantitative studies showed that sociodemographic and clinical characteristics were not associated with PTG. Enduring stress was negatively, and social support positively, associated with PTG. Symptom distress and defensive coping were negatively and adaptive cognitive coping was positively associated with resilience. Both PTG and resilience were positively associated with satisfaction with life and health-related quality of life (HRQoL). Resilience was found to be a mediator in the relationship between symptom distress and HRQoL. Two interventions aiming to promote resilience, a stress management and a therapeutic music video-intervention, were not successful in significantly increasing overall resilience. Most AYA cancer patients report at least some PTG or resilience. Correlates of PTG and resilience, including symptom distress, stress, coping, social support, and physical activity, provide further insight to improve the effectiveness of interventions aimed at promoting these positive outcomes and potentially buffer negative outcomes.

Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls.

PubMed

Poort, Hanneke; Kaal, Suzanne E J; Knoop, Hans; Jansen, Rosemarie; Prins, Judith B; Manten-Horst, Eveliene; Servaes, Petra; Husson, Olga; van der Graaf, Winette T A

2017-09-01

The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team in comparison with gender- and age-matched population-based controls. In addition, impact of severe fatigue on quality of life and correlates of fatigue severity were examined. AYAs with cancer (n = 83) completed questionnaires including the Checklist Individual Strength (CIS-fatigue), Quality of Life (QoL)-Cancer Survivor, Hospital Anxiety and Depression Scale (reflecting psychological distress), and the Cancer Worry Scale (reflecting fear of cancer recurrence or progression). The vast majority of participants had been treated with chemotherapy (87%) and had no active treatment at the time of participation (73.5%). Prevalence of severe fatigue (CIS-fatigue score ≥35) in AYAs with cancer (48%, n = 40/83) was significantly higher in comparison with matched population-based controls (20%, n = 49/249; p < .001). Severely fatigued AYAs with cancer reported lower QoL compared to non-severely fatigued AYAs with cancer (p < .05). Female gender, being unemployed, higher disease stage (III-IV) at diagnosis, receiving active treatment at the time of study participation, being treated with palliative intent, having had radiotherapy, higher fear of recurrence or progression, and higher psychological distress were significantly correlated with fatigue severity (p < .05). Severe fatigue based on a validated cut-off score was highly prevalent in this group of AYAs with cancer. QoL is significantly affected by severe fatigue, stressing the importance of detection and management of this symptom in those patients affected by a life-changing diagnosis of cancer in late adolescence or young adulthood.

Depression in adolescents and young adults with cancer

PubMed Central

Park, Eliza M.; Rosenstein, Donald L.

2015-01-01

Adolescents and young adults (AYAs) with cancer are at risk for depression due to disruptions in their developmental trajectory, greater physical symptom burden, and increased likelihood of developing aggressive disease. Rates of depression and other psychological disorders are substantially higher in AYAs with cancer when compared with older adults. Psychiatrists caring for these patients must consider the age-appropriate developmental context of these patients along with familial and medical factors that may influence the presentation and treatment of depression. Previous research suggests that psychosocial interventions specifically designed for AYA patients are promising, but studies of psychopharmacology treatments for depression are lacking. There is a pressing need for prospective studies and controlled clinical trials that evaluate the optimal strategies for treating depression in this patient group. PMID:26246791

A review of mobile applications to help adolescent and young adult cancer patients

PubMed Central

Wesley, Kimberly M; Fizur, Philip J

2015-01-01

Objective To review research articles utilizing mobile applications with adolescent and young adult (AYA) cancer patients. Materials and methods We identified articles via online searches and reference lists (eg, PsycInfo, PubMed). Articles were reviewed by two study team members for target population, stated purpose, technological utilization, sample size, demographic characteristics, and outcome data. Strengths and weaknesses of each study were described. Results Of 19 identified manuscripts, six met full inclusion criteria for this review (four smartphone applications and two tablet applications). One additional article that included an application not specific to oncology but included AYA patients with cancer within the target sample was also reviewed. Uses of these applications included symptom tracking, pain management, monitoring of eating habits following bone marrow transplant, monitoring of mucositis, and improving medication management. Utility results from pilot studies are presented. Conclusion Mobile applications are growing in number and increasingly available to AYAs with and without chronic illness. These applications may prove useful in helping to support AYAs throughout their cancer treatment and beyond. However, few applications provide empirical data supporting their utility. Numerous strengths and benefits of these applications include increased accessibility to educational resources and self-management strategies, more frequent physical and emotional symptom tracking, and increased access to peer support. Despite these strengths, numerous limitations are identified, highlighting the need for future research in this area. PMID:26316835

Evidence-Based Recommendations for Fertility Preservation Options for Inclusion in Treatment Protocols for Pediatric and Adolescent Patients Diagnosed With Cancer.

PubMed

Fernbach, Alison; Lockart, Barbara; Armus, Cheryl L; Bashore, Lisa M; Levine, Jennifer; Kroon, Leah; Sylvain, Genevieve; Rodgers, Cheryl

2014-07-01

As survival rates improve for pediatric cancers, increased attention has been paid to late effects of cancer therapy, in particular, infertility. Fertility preservation options are available for pre- and postpubertal cancer patients; however, many providers lack knowledge regarding options. The aim of this article is to provide a comprehensive synthesis of current evidence and recommendations regarding fertility preservation options for children, adolescents, and young adults undergoing cancer treatment. A systematic search was performed to identify fertility preservation evidence. Fifty-three studies and 4 clinical guidelines were used for the review. Final recommendations consisted of 2 strong and 1 weak recommendation for both female and male fertility preservation options. The treatment team should be knowledgeable about fertility preservation so that they can educate patients and families about available fertility preservation options. It is important to consider and discuss all available fertility options with patients at the time of diagnosis. © 2014 by Association of Pediatric Hematology/Oncology Nurses.

Unique Characteristics of Adolescent and Young Adult Acute Lymphoblastic Leukemia, Breast Cancer, and Colon Cancer

PubMed Central

Seibel, Nita L.; Blair, Donald G.; Albritton, Karen; Hayes-Lattin, Brandon

2011-01-01

Each year in the United States, nearly 70 000 individuals between the ages of 15 and 40 years are diagnosed with cancer. Although overall cancer survival rates among pediatric and older adult patients have increased in recent decades, there has been little improvement in survival of adolescent and young adult (AYA) cancer patients since 1975 when collected data became adequate to evaluate this issue. In 2006, the AYA Oncology Progress Review Group made recommendations for addressing the needs of this population that were later implemented by the LIVESTRONG Young Adult Alliance. One of their overriding questions was whether the cancers seen in AYA patients were biologically different than the same cancers in adult and/or pediatric patients. On June 9–10, 2009, the National Cancer Institute (NCI) and the Lance Armstrong Foundation (LAF) convened a workshop in Bethesda, MD, entitled “Unique Characteristics of AYA Cancers: Focus on Acute Lymphocytic Leukemia (ALL), Breast Cancer and Colon Cancer” that aimed to examine the current state of basic and translational research on these cancers and to discuss the next steps to improve their prognosis and treatment. PMID:21436065

Costs for Childhood and Adolescent Cancer, 90 Days Prediagnosis and 1 Year Postdiagnosis: A Population-Based Study in Ontario, Canada.

PubMed

de Oliveira, Claire; Bremner, Karen E; Liu, Ning; Greenberg, Mark L; Nathan, Paul C; McBride, Mary L; Krahn, Murray D

2017-03-01

Childhood and adolescent cancers are uncommon, but they have important economic and health impacts on patients, families, and health care systems. Few studies have measured the economic burden of care for childhood and adolescent cancers. To estimate costs of cancer care in population-based cohorts of children and adolescents from the public payer perspective. We identified patients with cancer, aged 91 days to 19 years, diagnosed from 1995 to 2009 using cancer registry data, and matched each to three noncancer controls. Using linked administrative health care records, we estimated total and net resource-specific costs (in 2012 Canadian dollars) during 90 days prediagnosis and 1 year postdiagnosis. Children (≤14 years old) numbered 4,396: 36% had leukemia, 21% central nervous system tumors, 10% lymphoma, and 33% other cancers. Adolescents (15-19 years old) numbered 2,329: 28.9% had lymphoma. Bone and soft tissue sarcoma, germ cell tumor, and thyroid carcinoma each comprised 12% to 13%. Mean net prediagnosis costs were $5,810 and $1,127 and mean net postdiagnosis costs were $136,413 and $62,326 for children and adolescents, respectively; the highest were for leukemia ($157,764 for children and $172,034 for adolescents). In both cohorts, costs were much higher for patients who died within 1 year of diagnosis. Inpatient hospitalization represented 69% to 74% of postdiagnosis costs. Treating children with cancer is costly, more costly than treating adolescents or adults. Substantial survival gains in children mean that treatment may still be very cost-effective. Comprehensive age-specific population-based cost estimates are essential to reliably assess the cost-effectiveness of cancer care for children and adolescents, and measure health system performance. Copyright © 2017 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

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

PubMed

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

2014-01-01

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

Assessment of quality of life of children and adolescents with cancer during their treatment.

PubMed

Vlachioti, Efrosini; Matziou, Vasiliki; Perdikaris, Pantelis; Mitsiou, Maria; Stylianou, Christos; Tsoumakas, Konstantinos; Moschovi, Maria

2016-05-01

The purpose of this study was to evaluate the quality of life of children and adolescents with any type of cancer in all phases of their treatment. Fifty-six newly diagnosed patients diagnosed with malignancy and hospitalized in a Pediatric Hematology-Oncology Unit in Athens were included in the study. Minneapolis-Manchester Quality of Life Instrument was used for data collection from July 2010 to December 2012. The assessment of children and adolescents' quality of life who were under treatment was performed in three different stages of treatment. The results of the study showed that the quality of life of children and adolescents with cancer did not change notably during their treatment (F = 0.16, P = 0.86 and F = 0.03, P = 0.97). For the first measurement, at the beginning of the therapy, the score on the scale for quality of life for children and adolescents was 3.44 and 3.88, respectively, in the middle of the treatment 3.36 and 3.89, respectively, and 3.43 and 3.89, respectively, when therapy was completed. Children and adolescents diagnosed with hematologic cancer stated higher quality of life scores (z = -1.61, P = 0.05 and t = 2.64, P = 0.007). Moreover, teenage patients (F = 13.22, P = 0.001) and male patients (t = 2.31, P = 0.02 and t = 2.27, P = 0.02) expressed better quality-of-life scores. According to the results, children and adolescents with any kind of cancer have better quality-of-life scores at the end of their treatment, and when they are supported by their family. © The Author 2016. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Fertility preservation in pediatric and adolescent cancer patients in Switzerland: A qualitative cross-sectional survey.

PubMed

Diesch, Tamara; von der Weid, Nicolas Xavier; Szinnai, Gabor; Schaedelin, Sabine; De Geyter, Christian; Rovó, Alicia

2016-10-01

Fertility preservation (FP) is an important topic of discussion in the field of oncology, particularly in pediatric oncology. Despite the awareness of severe impact of infertility on quality of life and different guidelines available in this area, the options in FP are not routinely discussed with the pediatric cancer patients and their parents. To the best of our knowledge, this is the first survey report concerned to FP counseling and procedures in pediatric and adolescent cancer patients in Switzerland. This survey was conducted from June 2014 to October 2014 on the counseling and procedures performed between 2009 and 2013; the questionnaire was completed by one of the professional from hematology/oncology centers in Switzerland. Currently, only four out of nine centers have a program for FP. In 2013, 45/301 (15%) patients received FP counseling and 36/301 (12%) underwent an FP procedure. The most commonly performed procedures from 2009 to 2013 were administration of gonadotropin releasing hormone agonist (3%) and cryopreservation of ovarian tissue in females (3%) and cryopreservation of sperms in males (6%); the most frequently cited reason for the absence of FP counseling was lack of time (55%). Therefore, this survey should help to develop and harmonize practices with respect to FP counseling and procedures in Switzerland, and to establish FP as a standard of care during cancer treatment. Copyright © 2016. Published by Elsevier Ltd.

Personal Web home pages of adolescents with cancer: self-presentation, information dissemination, and interpersonal connection.

PubMed

Suzuki, Lalita K; Beale, Ivan L

2006-01-01

The content of personal Web home pages created by adolescents with cancer is a new source of information about this population of potential benefit to oncology nurses and psychologists. Individual Internet elements found on 21 home pages created by youths with cancer (14-22 years old) were rated for cancer-related self-presentation, information dissemination, and interpersonal connection. Examples of adolescents' online narratives were also recorded. Adolescents with cancer used various Internet elements on their home pages for cancer-related self-presentation (eg, welcome messages, essays, personal history and diary pages, news articles, and poetry), information dissemination (e.g., through personal interest pages, multimedia presentations, lists, charts, and hyperlinks), and interpersonal connection (eg, guestbook entries). Results suggest that various elements found on personal home pages are being used by a limited number of young patients with cancer for self-expression, information access, and contact with peers.

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.

Long-term survival and conditional survival of cancer patients in Japan using population-based cancer registry data

PubMed Central

Ito, Yuri; Miyashiro, Isao; Ito, Hidemi; Hosono, Satoyo; Chihara, Dai; Nakata-Yamada, Kayo; Nakayama, Masashi; Matsuzaka, Masashi; Hattori, Masakazu; Sugiyama, Hiromi; Oze, Isao; Tanaka, Rina; Nomura, Etsuko; Nishino, Yoshikazu; Matsuda, Tomohiro; Ioka, Akiko; Tsukuma, Hideaki; Nakayama, Tomio

2014-01-01

Although we usually report 5-year cancer survival using population-based cancer registry data, nowadays many cancer patients survive longer and need to be followed-up for more than 5 years. Long-term cancer survival figures are scarce in Japan. Here we report 10-year cancer survival and conditional survival using an established statistical approach. We received data on 1 387 489 cancer cases from six prefectural population-based cancer registries in Japan, diagnosed between 1993 and 2009 and followed-up for at least 5 years. We estimated the 10-year relative survival of patients who were followed-up between 2002 and 2006 using period analysis. Using this 10-year survival, we also calculated the conditional 5-year survival for cancer survivors who lived for some years after diagnosis. We reported 10-year survival and conditional survival of 23 types of cancer for 15–99-year-old patients and four types of cancer for children (0–14 years old) and adolescent and young adults (15–29 years old) patients by sex. Variation in 10-year cancer survival by site was wide, from 5% for pancreatic cancer to 95% for female thyroid cancer. Approximately 70–80% of children and adolescent and young adult cancer patients survived for more than 10 years. Conditional 5-year survival for most cancer sites increased according to years, whereas those for liver cancer and multiple myeloma did not increase. We reported 10-year cancer survival and conditional survival using population-based cancer registries in Japan. It is important for patients and clinicians to report these relevant figures using population-based data. PMID:25183551

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

[Adolescent confronting cancer and its place in the family].

PubMed

Chavand, Aurélie; Grandjean, Hélène; Vignes, Michel

2007-04-01

Adolescent medicine is expanding in Europe with particular attention being given to cancer of adolescents and its treatment. At a time where specialised units for adolescents are being born, it is essential to collect the current knowledge on the pathological impact of the illness in this age period whose limits themselves are often blurred (13-21 years or 15-25 years). Adolescence is a transition between childhood and adulthood, during which one seeks psychological and emotional development. Cancer, by its direct repercussion on the adolescent and also by the disorganisation of the family, can involve risks impending the process of maturation and can also be a purveyor of psychological after-affects. The occurrence of the illness can isolate the adolescent and leak to a restriction of the psychological investment. The reality of possible death can hinder the ill adolescent from developing his natural opposition to the adults who represent authority such as parents or nurses, thereby hindering access to autonomy, independence and identity construction. One can find oneself locked in a state of trouble, confusion, becoming a stranger to oneself, with an impression of distance waxing between the young patient and others. The parents find themselves weakening and must make calls on their supporters. The siblings see their daily life becoming more unsettled and find themselves confronted by parents less available and reassuring. The impact on the brothers and sisters vary depending on their age and the capacity of the parent's adaptation. From the onset, adolescents struck by cancer necessitate an adaptation of the medical staff. The medical information, the treatment and the aid-care contracts must be approved by the adolescent himself but the parent's involvement remains essential. It is necessary to create an alliance of three. Conflicts and rivalry occur frequently between parents and the medical staff. One must study the possibility of creating a place adapted to

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

PubMed

Rosenberg, Abby R; Bona, Kira; Wharton, Claire M; Bradford, Miranda; Shaffer, Michele L; Wolfe, Joanne; Baker, Kevin Scott

2016-04-01

Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success. © 2015 Wiley Periodicals, Inc.

Knowledge and beliefs of Malaysian adolescents regarding cancer.

PubMed

Al-Naggar, Redhwan Ahmed; Jillson, Irene Anne; Abu-Hamad, Samir; Mumford, William; Bobryshev, Yuri V

2015-01-01

Few studies have explored the knowledge and attitudes of adolescents toward cancer prevention and treatment. This lack of research and its potential utility in the development of new educational initiatives and screening methods, or the reconstruction of existing ones, provided the impetus for this study. The primary research aim was to assess secondary school student knowledge of cancer and determine whether or not they possessed basic knowledge of cancer symptoms, risk factors, and treatments and to determine the relationship between cancer knowledge and key demographic factors. The Management and Science University conducted a cross-sectional study analyzing responses through cross-tabulation with the socio-demographic data collected. The findings of our quantitative analysis suggest that Malaysian youth generally possess a moderate knowledge about cancer. Quantitative analyses found that socioeconomic inequalities and bias in education present as important factors contributing to cancer awareness, prevention, and treatment among Malaysian adolescents. The findings indicate that Malaysian youth generally possess a moderate knowledge about cancer but the current deficiencies in initiatives directed to cancer awareness continue to hinder the improvement in prevention of cancer among Malaysian adolescents.

Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers.

PubMed

Stinson, J N; Sung, L; Gupta, A; White, M E; Jibb, L A; Dettmer, E; Baker, N

2012-09-01

The ability for adolescents with cancer (AWC) to engage in disease self-management may result in improved cancer outcomes and quality-of-life ratings for this group. Despite this, a comprehensive self-management program for this group is yet to be developed. To ensure that self-management programming developed for AWC meets the needs of this group, discussion with key stakeholders (i.e., AWC, parents, and healthcare providers) is required. A descriptive qualitative design was used. Adolescents (n = 29) who varied in age (12 to 18 years) and type of cancer, their parents (n = 30) and their healthcare providers (n = 22) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focus-group interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes. Four major themes, which captured the self-management needs of AWC, emerged from the data. These themes were: (1) disease knowledge and cancer care skills, (2) knowledge and skills to support effective transition to adult healthcare, (3) delivery of AWC-accessible healthcare services, and (4) supports for the adolescent with cancer. In order to provide comprehensive, relevant, and acceptable self-management programs to AWC, the voices of this population, their parents, and healthcare providers should be considered. Findings from this study will be used to develop and evaluate cancer self-management programming for AWC. Self-management represents an important avenue for exploration into improving cancer outcomes and quality of life for survivors of cancers during adolescence.

Validity and Reliability of a New Instrument to Measure Cancer-Related Fatigue in Adolescents

PubMed Central

Hinds, Pamela S.; Hockenberry, Marilyn; Tong, Xin; Rai, Shesh N.; Gattuso, Jamie S.; McCarthy, Kathleen; Pui, Ching-Hon; Srivastava, Deo Kumar

2008-01-01

Adolescents undergoing treatment for cancer rate fatigue as their most prevalent and intense cancer- and treatment-related effect. Parents and staff rate it similarly. Despite its reported prevalence, intensity, and distressing effects, cancer-related fatigue in adolescents is not routinely assessed during or after cancer treatment. We contend that the insufficient clinical attention is primarily due to the lack of a reliable and valid self-report instrument with which adolescent cancer-related fatigue can be measured. Our aim was to determine the reliability and construct validity of a new instrument and its ability to measure change in fatigue over time. Initial testing involved 64 adolescents undergoing curative treatment of cancer who completed the Fatigue Scale-Adolescent (FS-A) at two to four key points in treatment in one of four studies. Internal consistency estimates ranged from 0.67 to 0.95. Validity estimates involving the FS-A with the parent version ranged from 0.13 to 0.76; estimates involving the staff version and the Reynolds Depression Scale were 0.27 and 0.87 respectively. Additional validity findings included significant fatigue differences between anemic and non-anemic patients (P = 0.042) and the emergence of four factors in an exploratory factor analysis. Findings further indicate that the FS-A can be used to measure change over time (t = 2.55, P <0.01). In summary, the FS-A has moderate to strong reliability and impressive validity coefficients for a new research instrument. PMID:17629669

Quality of life in children and adolescents surviving cancer.

PubMed

Bradley Eilertsen, Mary-Elizabeth; Jozefiak, Thomas; Rannestad, Toril; Indredavik, Marit S; Vik, Torstein

2012-04-01

To explore subjective and proxy reported QoL (Quality of Life) in children and adolescents surviving cancer three years after diagnosis compared with healthy controls. Case-control study including 50 children and adolescents diagnosed with cancer between January 1, 1993 and January 1, 2003 and treated at the Paediatric Department of St. Olav's University Hospital in Trondheim, Norway. Data were collected using The Inventory of Life Quality in Children and Adolescents (ILC) and the KINDL QoL questionnaires (parent and self-reports), as well as by collecting data for any somatic late effects and psychological problems from the medical records of children surviving cancer. Adolescents surviving cancer as a group assessed their QoL as similar to that of their peers. However, adolescents surviving brain tumours or those with late effects reported lower QoL and an increased number of QoL domains perceived as problematic, even many years after diagnosis and treatment. Parents generally report a poorer QoL for their children surviving cancer and a greater number of QoL domains experienced as problematic compared with parent controls. To improve the child's total functioning and well-being we conclude that when planning long-term follow-up care, rehabilitation of children and adolescents with cancer, especially for survivors with brain tumours, and with late effects should particularly take into account their subjectively perceived and proxy reported QoL, in addition to their psychological problems and psychosocial functioning. Copyright © 2011 Elsevier Ltd. All rights reserved.

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients.

PubMed

Zebrack, Brad J; Block, Rebecca; Hayes-Lattin, Brandon; Embry, Leanne; Aguilar, Christine; Meeske, Kathleen A; Li, Yun; Butler, Melissa; Cole, Steven

2013-01-01

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Copyright © 2012 American Cancer Society.

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.

Assessing the Quality, Feasibility, and Efficacy of Electronic Patient Platforms Designed to Support Adolescents and Young Adults With Cancer: A Systematic Review Protocol

PubMed Central

McCann, Lisa

2017-01-01

Background A range of innovative websites, mobile technologies, eHealth and mHealth platforms have emerged to support adolescents and young adults (AYAs) with cancer. Previous reviews have identified these various applications and solutions, but no review has summarized the quality, feasibility, and efficacy of existing patient platforms (inclusive of websites, mobile technologies, mHealth and eHealth platforms) developed specifically for young people with cancer. Objective This paper describes the design of a protocol to conduct a review of published studies or reports which describe or report on an existing platform designed specifically for AYAs who have had a cancer diagnosis. Methods A search string was developed using a variety of key words and Medical Subject Heading and applied to bibliographic databases. General data (sample characteristics, patient platform development, design and, if applicable, pilot testing outcomes) will be extracted from reports and studies. Drawing on a previously developed coding schematic, the identified patient platforms will be coded for mode of delivery into (1) automated functions, (2) communicative functions, and (3) use of supplementary modes. An adapted version of the Mobile App Rating Scale (MARS) will be used to assess the of quality of each identified patient platform. The methodological quality of included studies will be assessed using the Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (QualSyst). Both authors will independently screen eligible studies for final inclusion and will both be responsible for data extraction and appraisal. Data will be synthesized narratively to provide an overview of identified patient platforms. Results The review began in October 2016 and is currently in progress. The review paper will be submitted for peer-review and publication in the summer of 2017. Conclusions This review will be unique in its focus on assessing, where possible, the

When mom or dad has cancer: markers of psychological distress in cancer patients, spouses, and children.

PubMed

Compas, B E; Worsham, N L; Epping-Jordan, J E; Grant, K E; Mireault, G; Howell, D C; Malcarne, V L

1994-11-01

This study assessed anxiety/depression and stress response symptoms in adult cancer patients (n = 117), spouses (n = 76), and their children (n = 110, ages 6 to 30 years old) near the patients' diagnoses to identify family members at risk for psychological maladjustment. Patients' and family members' distress was related to appraisals of the seriousness and stressfulness of the cancer but not related to objective characteristics of the disease. Patients and spouses did not differ in anxiety/depression or in stress-response symptoms. Both stress-response and anxiety/depression symptoms differed in children as a function of age, sex of child, and sex of patient. Adolescent girls whose mothers had cancer were the most significantly distressed. Implications for understanding the impact of cancer on the family are highlighted.

Self-Identified Goals of Adolescents With Cancer and Healthy Peers: Content, Appraisals, and Correlates

PubMed Central

Schwartz, Lisa A.; Parisi, Michelle L.

2013-01-01

Objective Compare the content, future orientation, and appraisals of self-identified goals of adolescents with cancer and control subjects. Identify correlates of health-related and future-oriented goals of adolescents with cancer. Methods Adolescents with cancer (n = 102) and control subjects (n = 97) self-identified goals, rated appraisals of goals, and completed psychosocial measures. Results Adolescents with cancer identified fewer goals, were more likely to identify a health-related goal, less likely to identify an intrapersonal or leisure goal, and rated their goals as more achievable and supported compared with control subjects. For adolescents with cancer, female gender predicted having a health-related goal. Additionally, age and parent-reported adolescent quality of life predicted having a future-oriented goal. 63 percent of adolescents with cancer reported establishing at least one goal because of cancer. Conclusions Despite similarities between groups, evidence supports that adolescents with cancer made changes to their repertoire of goals, suggesting the need to balance various priorities. PMID:23065108

Streptococcus pneumoniae pharyngeal colonization in school-age children and adolescents with cancer.

PubMed

Principi, Nicola; Preti, Valentina; Gaspari, Stefania; Colombini, Antonella; Zecca, Marco; Terranova, Leonardo; Cefalo, Maria Giuseppina; Ierardi, Valentina; Pelucchi, Claudio; Esposito, Susanna

2016-01-01

Patients with cancer, particularly those with hematologic malignancies, are at an increased risk of invasive pneumococcal disease (IPD) and they are included in the list of subjects for whom pneumococcal vaccination is recommended. The main aim of this study was to evaluate Streptococcus pneumoniae colonization in school-aged children and adolescents with cancer to determine the potential protective efficacy of 13-valent pneumococcal conjugate vaccine (PCV13). An oropharyngeal swab was obtained from 277 patients (age range 6-17 years) with cancer during routine clinical visits and analyzed for S. pneumoniae using real-time polymerase chain reaction. S. pneumoniae was identified in 52 patients (18.8%), including 47/235 (20.0%) with hematologic malignancies and 5/42 (11.9%) with solid tumors. Colonization declined significantly with an increase in age (odds ratio [OR] 0.34, 95% confidence interval [CI] 0.16-0.71, and OR 0.30, 95% CI 0.11-0.82 in children aged 10-14 and ≥15 years, respectively, as compared to those <10 years). Carriage was more common among patients with leukemia or lymphoma than in children with solid tumors. Co-trimoxazole prophylaxis was significantly associated with reduced pneumococcal carriage (OR 0.41, 95% CI 0.19-0.89). A total of 15/58 (25.9%) and 26/216 (12.0%) children were colonized by PCV13 serotypes among cancer patients previously vaccinated and not vaccinated with 7-valent pneumococcal conjugate vaccine (PCV7), respectively. In conclusion, this study indicates that children and adolescents with cancer are frequently colonized by S. pneumoniae. Because most of the carried serotypes are included in PCV13, this vaccine is presently the best solution to reduce the risk of IPD in these patients.

[Coping and depression in underage children of cancer patients: Data on the course].

PubMed

Ernst, J; von Klitzing, K; Brähler, E; Romer, G; Götze, H

2015-05-01

There is increasing consideration of a family-focused perspective of the psychosocial consequences of cancer. This study examined the psychosocial situation of children and adolescents (11 to 17 years old) of cancer patients assessing their psychological distress and coping over time. A total of 110 children and adolescents were assessed post-treatment of parents with cancer (t1), 6 (t2) and 12 months (t3) after t1. Participants completed validated questionnaires assessing coping (KidCope) and depressive symptoms (CES). These data were compared with a matched sample from the general population. The children reported using a combination of coping measures. In particular, active coping was perceived as being helpful. In terms of coping, there were only small gender differences and 6 months after completion of treatment of the parents (t2), depressive symptoms of the children were still elevated. Depression diminished over time and was near the level of the comparison group at t3. Children and adolescents are particularly psychologically distressed after cancer treatment of parents. This distress was connected with not helpful coping strategies. The extended adjustment of children/adolescents of cancer patients has to be considered in the clinical and psychosocial care of the families.

Resilience in Adolescents with Cancer: Association of Coping with Positive and Negative Affect.

PubMed

Murphy, Lexa K; Bettis, Alexandra H; Gruhn, Meredith A; Gerhardt, Cynthia A; Vannatta, Kathryn; Compas, Bruce E

2017-10-01

To examine the prospective association between adolescents' coping with cancer-related stress and observed positive and negative affect during a mother-adolescent interaction task involving discussion of cancer-related stressors. Adolescents (age 10-15 years) self-reported about their coping and affect approximately 2 months after cancer diagnosis. Approximately 3 months later, adolescents and mothers were video recorded having a discussion about cancer, and adolescents were coded for expression of positive affect (positive mood) and negative affect (sadness and anxiety). Adolescents' use of secondary control coping (i.e., acceptance, cognitive reappraisal, and distraction) in response to cancer-related stress predicted higher levels of observed positive affect, but not negative affect, over time. Findings provide support for the importance of coping in the regulation of positive emotions. The potential role of coping in preventive interventions to enhance resilience in adolescents facing cancer-related stress is highlighted.

Back to School After Cancer Treatment: Making Sense of the Adolescent Experience.

PubMed

Choquette, Anne; Rennick, Janet E; Lee, Virginia

2016-01-01

Little is known about the influence of cancer on the adolescent's developing self-identity and social relationships as he/she transitions back to school following cancer treatment. The purpose of this study was to explore the meaning of returning to school for adolescents who have completed cancer treatment. In this qualitative study, in-depth interviews using an interpretive descriptive approach were conducted with 11 adolescents (aged 13-17 years) who had completed treatment for cancer. The transcripts of the audiotaped interviews were analyzed thematically and reviewed by the study team. Three main themes suggested that the return to school hallmarked the end of an illness episode and a welcome return to a sense of well-being: (a) being on the right track, (b) bridging two worlds, and (c) establishing a new life at school. Nearly all adolescents described being negatively impacted by the cancer experience. However, the ability to maintain friendships during the transition emerged as particularly salient to allow the adolescents to rise above the challenges and residual effects of cancer treatment. Returning to school following cancer treatment affects adolescents' beliefs about themselves, their self-identity, and their social relationships. Understanding the meaning that adolescents ascribed to returning to school facilitated the development of practice recommendations to improve adjustment to school. Our study findings illuminate an important gap in the existing resources for adolescents in the posttreatment phase of cancer. Recommendations to promote healthy psychosocial development are proposed to better support adolescents during the reintegration to school.

Quality of Life and Its Predictors Among Children and Adolescents With Cancer.

PubMed

Pan, Hsien-Ting; Wu, Li-Min; Wen, Shu-Hui

Quality of life (QoL) increasingly is being assessed in pediatric patients with cancer. However, only a few studies focused on QoL predictors during and after treatment for pediatric patients with cancer. The aims of this study were to (1) assess differences of QoL, distress behavior, and fatigue among children and adolescents; (2) examine the relationship of distress behaviors, fatigue, and a variety of demographic factors to QoL; and (3) identify QoL predictors. A cross-sectional descriptive study involving 150 participants treated between 2012 and 2014 was conducted. All participants were given a diagnosis of cancer, ranged in age from 7 to 18 years, and had no developmental delay or mental illness. Three instruments including Pediatric Quality of Life, Distress Behaviors, and Multidimensional Fatigue Scale were administered. Adolescents aged 16 to 18 years reported lower school functioning and experienced more general and sleep/rest fatigue. Fatigue and distress behaviors were associated with a poorer QoL. Diagnosis at a younger age, greater time since diagnosis, and family structure were associated with a better QoL. General fatigue, relationship distress, family structure, and time since diagnosis were significant predictors of QoL, accounting for 64% of the total variance. Factors associated with a poorer QoL included fatigue, distress behaviors, and diagnosis at an older age. Less general fatigue and relationship distress, greater time since diagnosis, and living in nuclear family predicted a better QoL. Routinely evaluating fatigue and school functioning in pediatric patients with cancer is warranted, as well as developing educational programs to enhance the management of fatigue and relationship issues, especially for those who were given a diagnosis recently or for late adolescents.

Geographic Access to Cancer Care and Mortality Among Adolescents.

PubMed

Tai, Eric; Hallisey, Elaine; Peipins, Lucy A; Flanagan, Barry; Lunsford, Natasha Buchanan; Wilt, Grete; Graham, Shannon

2018-02-01

Adolescents with cancer have had less improvement in survival than other populations in the United States. This may be due, in part, to adolescents not receiving treatment at Children's Oncology Group (COG) institutions, which have been shown to increase survival for some cancers. The objective of this ecologic study was to examine geographic distance to COG institutions and adolescent cancer mortality. We calculated cancer mortality among adolescents and sociodemographic and healthcare access factors in four geographic zones at selected distances surrounding COG facilities: Zone A (area within 10 miles of any COG institution), Zones B and C (concentric rings with distances from a COG institution of >10-25 miles and >25-50 miles, respectively), and Zone D (area outside of 50 miles). The adolescent cancer death rate was highest in Zone A at 3.21 deaths/100,000, followed by Zone B at 3.05 deaths/100,000, Zone C at 2.94 deaths/100,000, and Zone D at 2.88 deaths/100,000. The United States-wide death rate for whites without Hispanic ethnicity, blacks without Hispanic ethnicity, and persons with Hispanic ethnicity was 2.96 deaths/100,000, 3.10 deaths/100,000, and 3.26 deaths/100,000, respectively. Zone A had high levels of poverty (15%), no health insurance coverage (16%), and no vehicle access (16%). Geographic access to COG institutions, as measured by distance alone, played no evident role in death rate differences across zones. Among adolescents, socioeconomic factors, such as poverty and health insurance coverage, may have a greater impact on cancer mortality than geographic distance to COG institution.

Cancer in adolescents and young adults in countries with limited resources.

PubMed

Magrath, Ian; Epelman, Sidnei

2013-08-01

Cancer in adolescents and young adults (AYA) represents a higher fraction of all cancer in countries that are still undergoing a demographic transition. Such countries tend to have much younger populations, and therefore unless they have a particularly low incidence of cancer in this age group, will have a higher burden of cancer (absolute number of cases with cancer) in AYA. Cancers in AYA are comprised of the tail end of the incidence curve of cancers that have their peak incidence, or occur almost exclusively in childhood, the beginning of the incidence curve of cancers that primarily affect the elderly, and a third set of cancers that have their peak incidence (or are at least common) in the AYA age group (e.g., testicular cancer, sarcomas, melanoma, thyroid cancer). Many, but not all, of these cancers require radiation or cancer surgery, but the poorest countries do not have a sufficient number of radiation therapy units and surgical oncologists, or indeed medical and pediatric oncologists, to deal with the burden of cancer they face. The AYA age group is particularly important, both with regard to their contribution to the economy now and in the future (the majority are in the "working" age-group defined as 15-64 years), as well as their important role in caring for their families. Moreover, some of these cancers are eminently curable with chemotherapy alone, and more could be cured by simply improving the efficiency of existing health services and providing education and training to both the public as well as oncologists and other specialists required for the care of AYA (although such individuals will not necessarily be exclusively concerned with this age group). Of particular importance is the detection and diagnosis of cancer patients at the earliest possible time in the course of their disease. Avoiding delays in initiating therapy, which are partly due to the poverty and lack of education of the public as well as to a failure on the part of primary

The Impact of Breast Cancer on Adolescent Function

DTIC Science & Technology

2007-07-01

suggestions for reducing this burden to Department of Defense, Washington Headquarters Services , Directorate for Information Operations and Reports (0704...emotional functioning. Results argue for programs and services to help both the ill and non-ill parent sustain quality parenting of the adolescent during...the first year of diagnosis, treatment, and early recovery from the mother’s breast cancer. 15. SUBJECT TERMS Breast cancer, parenting, adolescent

Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure.

PubMed

Mack, Jennifer W; Fasciano, Karen M; Block, Susan D

2018-04-23

Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient's likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the

Communicating with children and adolescents about their cancer.

PubMed

Scott, J T; Entwistle, V A; Sowden, A J; Watt, I

2001-01-01

Communication with children and adolescents with cancer about their disease and treatment and the implications of these is an important aspect of good quality care. It is often poorly performed in practice. Various interventions have been developed that aim to enhance communication involving children or adolescents with cancer. To examine the effects of interventions to enhance communication with children and/or adolescents about their cancer, its treatment and their implications. The following electronic databases were searched: Cochrane Library; Medline; PsycLit; Cinahl; Cancerlit; EMBASE; Sociofile; Health Management Information Consortium; ASSIA; LISA; ERIC; PAIS; Information Science Abstracts; Dissertation Abstracts; JICST; Pascal; Linguistics and Language Behavior Abstracts; Mental Health Abstracts; AMED; MANTIS. Bibliographies of identified studies were also checked and contact made with experts in the field. Randomised and non-randomised controlled trials and before and after studies that evaluated the effects of interventions to enhance communication with children and/or adolescents about their cancer, treatment and related issues. Data relating to the interventions, populations and outcomes studied and the design and methodological quality of included studies were extracted by one reviewer and checked by another reviewer. A narrative summary of the results is presented. Six studies met the criteria for inclusion. They were diverse in terms of the interventions evaluated, study designs used, types of people who participated and the outcomes measured. One study of a computer-assisted education programme reported improvements in knowledge and understanding about blood counts and cancer symptoms. Two out of two studies of school reintegration programs reported improvements in some aspects of psychosocial wellbeing (one in anxiety and one in depression), social wellbeing (two in social competence and one in social support) and behavioural problems; and one

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

PubMed

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

2018-01-27

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

Medication adherence decision-making among adolescents and young adults with cancer.

PubMed

McGrady, Meghan E; Brown, Gabriella A; Pai, Ahna L H

2016-02-01

Nearly half of all adolescents and young adults (AYAs) with cancer struggle to adhere to oral chemotherapy or antibiotic prophylactic medication included in treatment protocols. The mechanisms that drive non-adherence remain unknown, leaving health care providers with few strategies to improve adherence among their patients. The purpose of this study was to use qualitative methods to investigate the mechanisms that drive the daily adherence decision-making process among AYAs with cancer. Twelve AYAs (ages 15-31) with cancer who had a current medication regimen that included oral chemotherapy or antibiotic prophylactic medication participated in this study. Adolescents and young adults completed a semi-structured interview and a card sorting task to elucidate the themes that impact adherence decision-making. Interviews were transcribed verbatim and coded twice by two independent raters to identify key themes and develop an overarching theoretical framework. Adolescents and young adults with cancer described adherence decision-making as a complex, multi-dimensional process influenced by personal goals and values, knowledge, skills, and environmental and social factors. Themes were generally consistent across medication regimens but differed with age, with older AYAs discussing long-term impacts and receiving physical support from their caregivers more than younger AYAs. The mechanisms that drive daily adherence decision-making among AYAs with cancer are consistent with those described in empirically-supported models of adherence among adults with other chronic medical conditions. These mechanisms offer several modifiable targets for health care providers striving to improve adherence among this vulnerable population. Copyright © 2015 Elsevier Ltd. All rights reserved.

Medication Adherence Decision-Making Among Adolescents and Young Adults with Cancer

PubMed Central

McGrady, Meghan E.; Brown, Gabriella A.; Pai, Ahna L. H.

2015-01-01

Purpose Nearly half of all adolescents and young adults (AYAs) with cancer struggle to adhere to oral chemotherapy or antibiotic prophylactic medication included in treatment protocols. The mechanisms that drive non-adherence remain unknown, leaving health care providers with few strategies to improve adherence among their patients. The purpose of this study was to use qualitative methods to investigate the mechanisms that drive the daily adherence decision-making process among AYAs with cancer. Methods Twelve AYAs (ages 15–31) with cancer who had a current medication regimen that included oral chemotherapy or antibiotic prophylactic medication participated in this study. Adolescents and young adults completed a semi-structured interview and a card sorting task to elucidate the themes that impact adherence decision-making. Interviews were transcribed verbatim and coded twice by two independent raters to identify key themes and develop an overarching theoretical framework. Results Adolescents and young adults with cancer described adherence decision-making as a complex, multi-dimensional process influenced by personal goals and values, knowledge, skills, and environmental and social factors. Themes were generally consistent across medication regimens but differed with age, with older AYAs discussing long-term impacts and receiving physical support from their caregivers more than younger AYAs. Conclusions The mechanisms that drive daily adherence decision-making among AYAs with cancer are consistent with those described in empirically-supported models of adherence among adults with other chronic medical conditions. These mechanisms offer several modifiable targets for health care providers striving to improve adherence among this vulnerable population. PMID:26372619

Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study.

PubMed

Shnorhavorian, Margarett; Harlan, Linda C; Smith, Ashley Wilder; Keegan, Theresa H M; Lynch, Charles F; Prasad, Pinki K; Cress, Rosemary D; Wu, Xiao-Cheng; Hamilton, Ann S; Parsons, Helen M; Keel, Gretchen; Charlesworth, Sarah E; Schwartz, Stephen M

2015-10-01

The fertility of adolescent and young adult (AYA) patients with cancer can be threatened by treatments, but to the authors' knowledge little is known regarding the extent to which providers discuss this with patients or recommend fertility preservation, or the patient and physician characteristics associated with these interactions. Questionnaires from 459 AYA patients with cancer who were diagnosed between 2007 and 2008 and recruited through 7 US population-based cancer registries were analyzed using sex-specific multivariable models. The authors assessed characteristics associated with not discussing therapy effects on fertility or fertility preservation options, and not making fertility preservation arrangements. Males without a medical oncologist were more likely not to be told that therapy might affect fertility than those with a medical oncologist (male odds ratio [OR], 2.28; 95% confidence interval [95% CI], 1.03-5.00). Individuals without insurance (male OR, 2.91 [95% CI, 1.41-5.91] and female OR, 5.46 [95% CI, 1.59-18.72]); those raising children aged <18 years; and, among males only, those who received treatment posing no or a low fertility risk (OR, 3.39; 95% CI, 1.60-7.16) were more likely not to discuss fertility preservation with providers. Finally, among males, those without a college degree (OR, 1.98; 95% CI, 1.00-3.97), lacking private insurance (OR, 2.97; 95% CI, 1.16-7.63), and raising children aged <18 years (OR, 3.53; 95% CI, 1.63-7.65) were more likely to not make fertility preservation arrangements; too few females had made fertility preservation arrangements for similar analyses to be performed. Discussion and action surrounding fertility preservation for AYA patients with cancer are associated with medical factors, patient socioeconomic data, and child-rearing status. These results highlight the need for insurance coverage for fertility preservation and increased awareness of fertility preservation options. © 2015 American Cancer Society.

The Adolescent Patient.

ERIC Educational Resources Information Center

Daniel, William A., Jr.

Written to orient the physician and paramedical personnel to the adolescent patient, the book provides information concerning the changes of adolescence, and age-related problems and illnesses. Part 1 discusses the essence of adolescence by describing physical, mental, and emotional growth and development. Part 2, the major section, consists of 21…

Prevalence of multiple health-related behaviors in adolescents with cancer.

PubMed

Carpentier, Melissa Y; Mullins, Larry L; Elkin, T David; Wolfe-Christensen, Cortney

2008-12-01

This preliminary study investigated prevalence rates of multiple health-related behaviors (ie, tobacco, alcohol, and other drug use; sexual risk-taking; nutrition/physical activity; overweight and dietary behaviors; sun safety) among 42 adolescents on active treatment for cancer, as compared with healthy adolescent norms. Health-related behaviors were assessed using the 2005 National Youth Risk Behavior Survey, for which healthy adolescent norms were publicly available. Adolescents with cancer reported significantly lower current and lifetime rates of tobacco, alcohol, and other drug use; fruit/vegetable consumption; physical activity; and dietary behavior, in addition to lower rates of lifetime sexual intercourse, early-onset sexual intercourse, and alcohol/drug use before last sexual intercourse, compared with healthy peers. Among those who have previously engaged in sexual intercourse, there appeared to be a trend toward increased partners, current sexual activity, and lack of protection at last episode of sexual intercourse. Adolescents with cancer also reported significantly higher rates of television watching compared with healthy peers. Adolescents on active treatment for cancer are engaging in multiple health-risk behaviors, including sedentary behavior, poor nutrition, lack of sun safety, and sexual risk-taking (eg, multiple partners, lack of protection at last sexual intercourse). Health promotion interventions are needed during active treatment to facilitate the acquisition of good health practices as adolescents transition into survivorship.

Dealing with fear - from the perspective of adolescent girls with cancer.

PubMed

Anderzén-Carlsson, Agneta; Sörlie, Venke; Kihlgren, Annica

2012-07-01

Previously fears in adolescents with cancer has been identified in relation to medical procedures, death, altered appearance and as having an overall influence on life, but to our knowledge young people's perspectives on dealing with fear have not been previously investigated. To examine adolescents' perspectives on dealing with cancer related fear. Six girls participated in qualitative interviews focussing on their fear and and how they dealt with it. Data were analysed by means of qualitative content analysis. The results revealed two perspectives. First, the adolescents' own personal battle with fear. Second, they reported that they were not alone with their fear, as they shared it with significant others. An environment characterized by emotional presence helped them to deal with their fear, as well as prevented it from occurring. There is a need for staff and parents to be vigilant to the adolescents' need to feel cared for and allow them the opportunity to deal with their own fear, as at times they want to manage in their own way. Young patients have resources to cope with their fears and therefore should not be viewed as victims, but as young people with a great amount of competence, who benefit from a supportive environment. Copyright © 2011 Elsevier Ltd. All rights reserved.

Listening through narratives: using a narrative approach when discussing fertility preservation options with young cancer patients

PubMed Central

Roher, S.I.G.; Gibson, J.; Gibson, B.E.; Gupta, A.A.

2017-01-01

Despite clinical practice guideline recommendations mandating that fertility preservation be discussed with young cancer patients, many providers fail to initiate such discussions with adolescents. Researchers and clinicians often focus on system-level changes to improve access to fertility preservation for adolescents and young adults in Canada. However, little of the available information considers the way in which health care providers approach those discussions. Research has shown that, even when fertility preservation options are broached with adolescents, survivors often report dissatisfaction with those conversations, thus raising additional concerns about their content and quality. Here, we consider how a narrative approach—and the Frank narrative typology in particular—could improve the quality of such conversations by helping providers to more accurately and thoughtfully respond to the needs of adolescent patients when discussing the possibility of fertility preservation. Based on findings from a qualitative research project, we provide concrete suggestions for how to more sensitively approach fertility preservation conversations with male adolescent cancer patients and survivors. PMID:28270719

Breast Cancer in a 19-Year-Old Female Adolescent Identified with Li-Fraumeni Syndrome.

PubMed

Jay, Allison M; Hamame, Anthony S; Dul, Carrie; Wesen, Cheryl

2017-02-01

Breast cancer is rare in adolescents. In one study, breast carcinoma accounted for 0.02% of breast masses surgically removed in young women. We report a case of breast cancer in a 19-year-old woman who was found to have Li-Fraumeni Syndrome. The patient presented with a new, hard, nonmobile lump in the right breast which prompted her to seek medical attention. A biopsy identified invasive ductal carcinoma. Genetic testing showed a p53 mutation associated with Li-Fraumeni syndrome. Although breast masses in young women are mostly benign, one must entertain the possibility of more serious conditions when a breast mass is identified with concerning medical or physical findings. Genetic testing might be informative for such patients. Copyright © 2016 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc. All rights reserved.

Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer.

PubMed

Korsvold, Live; Mellblom, Anneli V; Lie, Hanne C; Ruud, Ellen; Loge, Jon Håvard; Finset, Arnstein

2016-10-01

This study aimed to examine how emotional cues/concerns are expressed and responded to in medical consultations with adolescent and young adults (AYA), an understudied patient group, at the time of cancer diagnosis. Nine consultations in which AYA patients aged 12-25 years were informed about their cancer diagnosis and treatment plans were audio recorded. Expressions of emotional cues/concerns and physicians' responses were identified and coded using The Verona Coding Definitions of Emotional Sequences (VR-CoDES). A total of 135 emotional cues/concerns (range: 2-26, median: 13) were identified. Cues or concerns that were expressed by patients and relatives following questions from physicians were more often explicit than patient-initiated cues/concerns. Questions about medical and practical issues could often be understood as ways of expressing emotional cues. When patients or relatives expressed less explicit verbal cues about underlying concerns, physicians often responded by presenting medical information without commenting on the emotional aspect indicated by the cue. The communication was dominated by information-giving, but the questions from patients and relatives and their responses to the information often had emotional connotations. Patients' requests for information may include an emotional aspect. These preliminary findings should be tested in a larger sample. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Association Between Diet During Preadolescence and Adolescence and Risk for Breast Cancer During Adulthood

PubMed Central

Mahabir, Somdat

2012-01-01

That diet during pre-adolescence and adolescence has important consequences for breast cancer during adulthood is increasingly evident. However, only a few epidemiologic studies have been conducted of the relationship between diet during pre-adolescence and adolescence and cancer during adulthood. This situation is partly due to methodological challenges such as the long latency period, the complexity of breast cancer, lack of validated diet assessment tools, and the large number of subjects that must be followed, all of which increase costs. In addition, funding opportunities are few for such studies. Results from the small number of epidemiologic studies are inconsistent, but evidence is emerging that specific aspects of the diet during pre-adolescence and adolescence are important. For example, during pre-adolescence and adolescence, severe calorie restriction with poor food quality, high total fat intake, and alcohol intake tend to increase risk, whereas high soy intake decreases risk. Research on pre-adolescent and adolescent diet is a paradigm shift in breast cancer investigations. This research paradigm has the potential to produce transformative knowledge to inform breast cancer prevention strategies through dietary intervention during pre-adolescence and adolescence, rather than later in life, as is current practice, when it is perhaps less effective. Methodological challenges that have plagued the field might now be overcome by leveraging several existing large-scale cohort studies in the United States and around the world to investigate the role of diet during pre-adolescence and adolescence in risk for adult breast cancer. PMID:23298994

Fertility Preservation in Pediatric and Adolescent Oncology Patients: The Decision-Making Process of Parents.

PubMed

Li, Nancy; Jayasinghe, Yasmin; Kemertzis, Matthew A; Moore, Paddy; Peate, Michelle

2017-06-01

Decisions surrounding fertility preservation (FP) in children, adolescents, and adults can be difficult due to the distress of a cancer diagnosis, time constraints for decision-making, and lack of efficacy data. This review examines the decision-making process of oncology patients and their parents (if patients are in the pediatric or adolescent population) to better understand experiences of decisional conflict and regret. Two electronic databases, Embase and Pubmed, were searched using the terms (Decision-making OR Conflict (Psychology) OR Decision regret) AND (Freezing OR Oocyte OR Ovarian tissue OR Semen preservation OR Fertility preservation OR Cryopreservation) AND (Neoplasms OR Cancer OR Chemotherapy OR Drug therapy OR Radiotherapy). Medical Subject Heading terms were utilized where possible. Included articles discussed FP decision-making from the patient's perspective. Thirty-five articles discussing FP decision-making were included (24 in the adult population, 11 in the pediatric and adolescent population). Key themes from these articles included the following: factors considered in FP decision-making, decision-making in established procedures and experimental procedures, decisional conflict and regret, the perceived importance of information, adolescent involvement in decision-making, and ethical considerations in the pediatric population. Unique ethical issues arise in the pediatric and adolescent population. Considering that the decision to pursue FP is known to be difficult in the adult population, decisional conflict and regret may be greater for parents who are making the decision for their child.

Development of depression in survivors of childhood and adolescent cancer: a multi-level life course conceptual framework.

PubMed

Kaye, Erica C; Brinkman, Tara M; Baker, Justin N

2017-06-01

As therapeutic and supportive care interventions become increasingly effective, growing numbers of childhood and adolescent cancer survivors face a myriad of physical and psychological sequelae secondary to their disease and treatment. Mental health issues, in particular, present a significant problem in this unique patient population, with depression affecting a sizable number of childhood and adolescent cancer survivors. Multiple key determinants impact a survivor's risk of developing depression, with variables traversing across biologic, individual, family, community, and global levels, as well as spanning throughout the life course of human development from the preconception and prenatal periods to adulthood. A multi-level life course conceptual model offers a valuable framework to identify and organize the diverse variables that modulate the risk of developing depression in survivors of childhood and adolescent cancer. This review describes the first multi-level life course perspective applied to development of depression in childhood and adolescent cancer survivors. This conceptual framework may be used to guide the investigation of mental health interventions for SCACs to ensure that key determinants of depression occurrence are adequately addressed across various levels and throughout the life trajectory.

Fatigue and health related quality of life in children and adolescents with cancer.

PubMed

Nunes, Michelle Darezzo Rodrigues; Jacob, Eufemia; Bomfim, Emiliana Omena; Lopes-Junior, Luis Carlos; de Lima, Regina Aparecida Garcia; Floria-Santos, Milena; Nascimento, Lucila Castanheira

2017-08-01

The study examined the different dimensions of fatigue (general, sleep/rest, cognitive), health related quality of life (HRQL) (physical, emotional, cognitive, social), and the relationships between fatigue and HRQL in hospitalized children and adolescents with cancer in Brazil. Participants were recruited from a pediatric oncology inpatient unit in a comprehensive cancer care hospital in southeast Brazil. They completed the PedsQL Multidimensional Fatigue Scale and the PedsQL Inventory of Quality of Life (Generic and Cancer module) once during hospitalization. The majority (66.7%) of the participants (n = 38; mean age 12.1 ± 2.9 years) had total fatigue scores < 75 on 0 to 100 scale; with the mean total fatigue score of 63.8 ± 18.5. The majority (72.2% generic; 83.3% cancer modules) had total PedsQL scores < 75 on 0 to 100 scale. The mean PedsQL score on generic module (61.1 ± 17.0) was similar to the mean PedsQL score cancer module (59.1 ± 16.7). Significant correlations were found between total fatigue and quality of life generic (r = 0.63, p = 0.000) and cancer module (r = 0.74, p = 0.000). The study is the first to report fatigue and health related quality of life in hospitalized children and adolescents with cancer in Brazil. Similar to experiences of other children in the world, our findings indicate that children and adolescents with cancer had problems with fatigue that were associated with low HRQL. Future studies are recommended to examine interventions (exercise, leisurely activities) that may alleviate fatigue and improve HRQL in pediatric patients with cancer. Copyright © 2017 Elsevier Ltd. All rights reserved.

Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases

PubMed Central

Korsvold, Live; Lie, Hanne Cathrine; Mellblom, Anneli Viktoria; Ruud, Ellen; Loge, Jon Håvard; Finset, Arnstein

2016-01-01

Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients’ emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12–25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists’ communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists’ communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patient's expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists’ communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients. PMID:27125477

Prevalence of mental disorders and psychosocial distress in German adolescent and young adult cancer patients (AYA).

PubMed

Geue, Kristina; Brähler, Elmar; Faller, Hermann; Härter, Martin; Schulz, Holger; Weis, Joachim; Koch, Uwe; Wittchen, Hans-Ulrich; Mehnert, Anja

2018-04-12

This study provides prevalence data of mental disorders (4-week, 1-year, lifetime) and psychological distress in Adolescent and Young Adult (AYAs) with cancer. We included an AYA subsample (15 to 39 year olds; diagnosed within the last 5 years) extracted from a larger sample (4.020 cancer patients) who had been recruited for an epidemiological study across all major tumor entities. Participants were assessed with a depression screener (PHQ-9). Following that, 50% of the participants who scored below the cutoff of 9 and all patients who scored above were assessed using the Composite International Diagnostic Interview for Oncology (CIDI-O). Patients also completed an anxiety screener (GAD-7). A total of 302 AYA (167 completed CIDI-O) were identified. With regard to psychological distress, 29.5% of the AYA had increased depression symptoms (PHQ-9), and 20.8% had increased anxiety symptoms (GAD-7). Gender and age were associated with psychological distress, with women and older AYA being found to have higher distress. The 4-week prevalence of mental disorders of any kind was 46.7% (95%-CI:39%-55%). Anxiety (24.4%; 95%-CI:20%-36%) and adjustment disorders (14.1%; 95%-CI:9%-19%) had the highest prevalence rates. The lowest prevalence rates were reported for alcohol dependence (0.8%; 95%-CI:0%-2%) and somatoform disorders (3.7%; 95%-CI:1%-7%). The 1-year-prevalence was 55.4% (CI:47.36-62.64), and the lifetime-prevalence was 69.5% (CI: 62.29-77.06). Our findings may sensitize clinicians to the possible presence of mental disorders in AYA. The results indicate that there is a strong need for psycho-oncological interventions designed to improve mental health in AYAs with cancer at all stages of medical care. Copyright © 2018 John Wiley & Sons, Ltd.

Trends in incidence, survival and mortality of childhood and adolescent cancer in Austria, 1994-2011.

PubMed

Karim-Kos, Henrike E; Hackl, Monika; Mann, Georg; Urban, Christian; Woehrer, Adelheid; Slavc, Irene; Ladenstein, Ruth

2016-06-01

This is the first study on trends in cancer incidence, survival and mortality for children and adolescents in Austria. The aim was to assess to what extent progress against childhood and adolescent cancer has been made in Austria since the 1990s and to complement the childhood and adolescent cancer trends for Central Europe. All malignant neoplasms and non-malignant tumours of the Central Nervous System (CNS) in patients aged less than 20 years and diagnosed between 1994 and 2011 (N=5425) were derived from the Austrian National Cancer Registry (ANCR). Incidence and mortality trends were evaluated by the average annual percentage change (AAPC). Observed survival rates were calculated based on follow-up until December 31st 2013. Childhood cancer remained stable with 182 cases per million in 2011, but rose among girls by 1.4% (95% CI: .1, 3.6) annually due to an increase of non-malignant CNS tumours and Non-Hodgkin lymphoma. Adolescent cancer rose by 1.5% (95% CI: .4, 2.6) annually, from 182 cases per million in 1994-269 in 2011, especially leukaemia, CNS tumours (including non-malignant types) and epithelial tumours. Five-year survival improved by 5-7% reaching 86% for both groups (p<.05). Mortality declined by -2.4% (95% CI: -3.7, -1.2) and -2.0% (95% CI: -4.6, .5), respectively, especially for childhood leukaemia. Progress is demonstrated by improved survival and declined mortality most likely related to improved diagnostic techniques, more effective therapeutic regimes, supportive care and a central advisory function of experts in the Austrian paediatric oncology. Copyright © 2016 Elsevier Ltd. All rights reserved.

Personality Traits and Health-Related Quality of Life Among Adolescent and Young Adult Cancer Patients: The Role of Psychological Distress.

PubMed

Husson, Olga; Zebrack, Bradley; Block, Rebecca; Embry, Leanne; Aguilar, Christine; Hayes-Lattin, Brandon; Cole, Steve

2017-06-01

Personality may affect the way adolescents and young adults (AYAs) with cancer report health-related quality of life (HRQoL). Patients aged 15-39 years (n = 165) completed a survey at 12-16 months postdiagnosis. The survey included questions on HRQoL (SF-36), distress Brief Symptom Inventory-18, and personality (NEO-Five-Factor Inventory). Personality traits were not associated with physical HRQoL. The personality trait neuroticism was negatively associated with mental HRQoL (β = -0.37; p < 0.001) and positively with psychological distress (β = 0.47; p < 0.001). Hierarchical regression and mediation analyses indicated that psychological distress fully mediated the association between neuroticism and mental HRQoL. Findings emphasize the importance of psychosocial intervention for distress in AYAs with cancer.

Cancer in adolescents: Incidences and trends during 1995-2009 in Taiwan.

PubMed

Hung, Giun-Yi; Chen, Chao-Chun; Horng, Jiun-Lin; Lin, Li-Yih

2016-03-01

This study aimed to describe cancer incidence rates and trends specifically for adolescents aged 15-19 years during 1995-2009 in Taiwan. The incidence counts and census data were obtained from the population-based Taiwan Cancer Registry. During the 15-year study period, 4122 adolescents were diagnosed with cancer. The overall incidence rate was 155.2 per million person-years. Other epithelial tumors were the most frequently diagnosed cancer group (23.7%), followed by leukemias (18.0%) and lymphomas (13.9%). When compared to rates in Western countries, a significantly low rate of lymphomas was found. Moreover, rates of the subtypes of melanomas and nasopharyngeal carcinomas being 1/10- and 4-times rates in Western countries were the most striking variations. During 1995-2009, the overall rate of adolescent cancer did not significantly change. However, the most significant upward and declining trends in incidence rates were found for male germ cell neoplasms (annual percent change, APC, 6.4%) and hepatic tumors (APC, -11.1%), respectively. Further investigation and enhancement of the public discourse of possible lifestyle and environmental risk factors associated with increasing trends of certain adolescent cancers should be carried out in Taiwan. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Initial evaluation of an electronic symptom diary for adolescents with cancer.

PubMed

Baggott, Christina; Gibson, Faith; Coll, Beatriz; Kletter, Richard; Zeltzer, Paul; Miaskowski, Christine

2012-12-11

The delivery of optimal care depends on accurate communication between patients and clinicians regarding untoward symptoms. Documentation of patients' symptoms necessitates reliance on memory, which is often imprecise. We developed an electronic diary (eDiary) for adolescents and young adults (AYAs) with cancer to record symptoms. The purpose of this paper is to describe the utility of an eDiary designed for AYAs with cancer, including dependability of the mobile application, the reasons for any missing recorded data, patients' adherence rates to daily symptom queries, and patients' perceptions of the usefulness and acceptability of symptom data collection via mobile phones. Our team developed an electronic symptom diary based on interviews conducted with AYAs with cancer and their clinicians. This diary included daily severity ratings of pain, nausea, vomiting, fatigue, and sleep. The occurrence of other selected physical sequelae was assessed daily. Additionally, patients selected descriptors of their mood. A 3-week trial of the eDiary was conducted with 10 AYA cancer patients. Mobile phones with service plans were loaned to patients who were instructed to report their symptoms daily. Patients completed a brief questionnaire and were interviewed to elicit their perceptions of the eDiary and any technical difficulties encountered. Overall adherence to daily symptom reports exceeded 90%. Young people experienced few technical difficulties and reported benefit from daily symptom reports. Symptom occurrence rates were high and considerable inter- and intra-patient variability was noted in symptom and mood reports. We demonstrated the utility of an eDiary that may contribute insight into patients' symptom patterns to promote effective symptom management.

Fertility as a priority among at-risk adolescent males newly diagnosed with cancer and their parents.

PubMed

Klosky, James L; Simmons, Jessica L; Russell, Kathryn M; Foster, Rebecca H; Sabbatini, Gina M; Canavera, Kristin E; Hodges, Jason R; Schover, Leslie R; McDermott, Michael J

2015-02-01

Infertility is a frequent consequence of cancer therapy and is often associated with psychological distress. Although adult survivors prioritize fertility and parenthood, this issue remains unexplored among adolescent males. This study examined future fertility as a priority (relative to other life goals) at time of diagnosis for at-risk adolescents and their parents. Newly diagnosed adolescent males (n = 96; age = 13.0-21.9 years) at increased risk for infertility secondary to cancer treatment prioritized eight life goals: to have school/work success, children, friends, wealth, health, a nice home, faith, and a romantic relationship. Patients' parents (fathers, n = 30; mothers, n = 61) rank-ordered the same priorities for their children. "Having children" was ranked as a "top 3" life goal among 43.8 % of adolescents, 36.7 % of fathers, and 21.3 % of mothers. Fertility ranked third among adolescents, fourth among fathers, and fifth among mothers. Future health was ranked the top priority across groups, distinct from all other goals (ps < 0.001), and fertility ranked higher than home ownership and wealth for all groups (ps < 0.001). For adolescents, low/moderate fertility risk perception was associated with higher fertility rankings than no/high risk perceptions (p = 0.01). Good health is the most important life goal among adolescents newly diagnosed with cancer and their parents. In this relatively small sample, adolescents prioritized fertility as a top goal, parents also rated fertility as being more important than home ownership and financial wealth. Health care providers should communicate fertility risk and preservation options at diagnosis and facilitate timely discussion among families, who may differ in prioritization of future fertility.

Fertility as a Priority among At-Risk Adolescent Males Newly Diagnosed with Cancer and Their Parents

PubMed Central

Klosky, James L.; Simmons, Jessica L.; Russell, Kathryn M.; Foster, Rebecca H.; Sabbatini, Gina M.; Canavera, Kristin E.; Hodges, Jason R.; Schover, Leslie R.; McDermott, Michael J.

2014-01-01

Purpose Infertility is a frequent consequence of cancer therapy and is often associated with psychological distress. Although adult survivors prioritize fertility and parenthood, this issue remains unexplored among adolescent males. This study examined future fertility as a priority (relative to other life goals) at time of diagnosis for at-risk adolescents and their parents. Methods Newly diagnosed adolescent males (n=96; age=13.0-21.9 years) at increased risk for infertility secondary to cancer treatment prioritized eight life goals: to have school/work success, children, friends, wealth, health, a nice home, faith, and a romantic relationship. Patients' parents (fathers, n=30; mothers, n=61) rank-ordered the same priorities for their children. Results “Having children” was ranked as a “top 3” life goal among 43.8% of adolescents, 36.7% of fathers, and 21.3% of mothers. Fertility ranked 3rd among adolescents, 4th among fathers, and 5th among mothers. Future health was ranked the top priority across groups, distinct from all other goals (ps<.001), and fertility ranked higher than home ownership and wealth for all groups (ps<.001). For adolescents, low/moderate fertility risk perception was associated with higher fertility rankings than no/high risk perceptions (p=.01). Conclusions Good health is the most important life goal among adolescents newly diagnosed with cancer and their parents. In this relatively small sample, adolescents prioritized fertility as a top goal, parents also rated fertility as being more important than home ownership and financial wealth. Health care providers should communicate fertility risk and preservation options at diagnosis and facilitate timely discussion among families, who may differ in prioritization of future fertility. PMID:25082365

Interaction patterns between parents with advanced cancer and their adolescent children.

PubMed

Sheehan, Denice Kopchak; Draucker, Claire Burke

2011-10-01

Advanced cancer profoundly affects those with the illness and their families. The interaction patterns between parents with advanced cancer and their adolescent children are likely to influence how a family experiences a parent's dying process. There is little information on such interactions. This study aimed to develop an explanatory model that explains interaction patterns between parents with advanced cancer and their adolescent children and to identify strategies to prepare children for their lives after a parent dies. Semi-structured interviews were conducted with 9 parents with advanced cancer, 7 of their spouses/partners, and 10 of their adolescent children. The interviews were recorded, transcribed verbatim, and analyzed using a constructionist grounded theory approach. Twenty-six family participants were interviewed. Their main concern was not having enough time together. In response, they described a four-stage process for optimizing the time they had left together: coming to know our time together is limited, spending more time together, extending our time together, and giving up our time together to end the suffering. The adolescents and their ill parents did not change their interaction patterns until they realized their time together was limited by the advanced cancer. Then they spent more time together to make things easier for each other. Time was of great importance to the parents and adolescents; all the participants structured their stories in relation to the concept of time. The model reflects the dynamic process by which families continuously adapt their relationships in the face of advanced cancer. 2010 John Wiley & Sons, Ltd.

Quality of life in adolescent and young adult cancer patients: a systematic review of the literature

PubMed Central

Quinn, Gwendolyn P; Gonçalves, Vânia; Sehovic, Ivana; Bowman, Meghan L; Reed, Damon R

2015-01-01

Introduction Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment. Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations. Methods A systematic review of the literature was conducted using combinations of these phrases or keywords: “adolescent and young adult or AYA” AND “health outcomes OR quality of life OR psychology” AND “neoplasm OR cancer OR oncology”. A total of 35 articles were included in this review. Studies were classified into two categories: AYA perceptions and stakeholder perceptions. Results AYA cancer survivors were more likely to have “worse” or impaired QoL compared with the general population, regardless of other demographic factors. AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services. Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience. Conclusion The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs. PMID

Spirituality in Adolescents and Young Adults With Cancer: A Review of Literature.

PubMed

McNeil, Sharon B

2016-01-01

Spirituality and religion have been found to have a positive impact on adults with cancer, but these concepts have not been well examined in adolescents and young adults (AYA) with cancer. AYA often question and struggle with their religious and spiritual beliefs, so it is not clear if spirituality and religion have the same positive impact on this age group. The purpose of this review of literature was to examine the research that has been conducted in spirituality in AYA with cancer. The review covered the years from 1980 to present. The terms cancer, adolescents, and young adults as well as the phrases spirit* and relig* were used to capture the different variations of words. Nine articles were found that explored spirituality and religiosity in AYA with cancer. This review highlighted the need for clarifying the terms used in describing the concept. This lack of continuity in terms makes it difficult to compare the studies. The methods used to measure spirituality are varied. Pediatric oncology nurses need to be sensitive to the spiritual needs of their patients. This can be accomplished by keeping an open line of communication and ensuring uninterrupted time to pray or read scriptures. Because of the variety of ways to express spirituality, the important first step is to ask what spirituality means to them. © 2015 by Association of Pediatric Hematology/Oncology Nurses.

Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer.

PubMed

DeRouen, Mindy C; Smith, Ashley Wilder; Tao, Li; Bellizzi, Keith M; Lynch, Charles F; Parsons, Helen M; Kent, Erin E; Keegan, Theresa H M

2015-09-01

Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population. Copyright © 2015 John Wiley & Sons, Ltd.

Empowerment in adolescents and young adults with cancer: Relationship with health-related quality of life.

PubMed

Kaal, Suzanne E J; Husson, Olga; van Duivenboden, Saskia; Jansen, Rosemarie; Manten-Horst, Eveliene; Servaes, Petra; Prins, Judith B; van den Berg, Sanne W; van der Graaf, Winette T A

2017-10-15

The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health-related quality of life (HRQOL) among AYA patients with cancer. Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self-awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = -.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01). Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late adolescence and young adulthood. Cancer 2017

Use of appropriate initial treatment among adolescents and young adults with cancer.

PubMed

Potosky, Arnold L; Harlan, Linda C; Albritton, Karen; Cress, Rosemary D; Friedman, Debra L; Hamilton, Ann S; Kato, Ikuko; Keegan, Theresa H M; Keel, Gretchen; Schwartz, Stephen M; Seibel, Nita L; Shnorhavorian, Margarett; West, Michele M; Wu, Xiao-Cheng

2014-11-01

There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment. We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkin's or non-Hodgkin's lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided. Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4). Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

Fertility preservation and cancer: Challenges for adolescent and young adult patients

PubMed Central

Benedict, Catherine; Thom, Bridgette; Kelvin, Joanne

2016-01-01

Purpose of review With increasing survival rates, fertility is an important quality of life concern for many young cancer patients. There is a critical need for improvements in clinical care to ensure patients are well informed about infertility risks and fertility preservation (FP) options and to support them in their reproductive decision-making prior to treatment. Recent findings A number of barriers prevent fertility from being adequately addressed in the clinical context. Providers’ and patients’ incomplete or inaccurate understanding of infertility risks exacerbate patients’ reproductive concerns. For female patients in particular, making decisions about FP before treatment often leads to decision conflict, reducing the likelihood of making informed, values-based decisions, and post-treatment regret and distress. Recent empirically-based interventions to improve provider training around fertility issues and to support patient decision-making about FP show promise. Summary Providers should be knowledgeable about the infertility risks associated with cancer therapies and proactively address fertility with all patients who might one day wish to have a child. Comprehensive counseling should also include related issues such as contraceptive use and health implications of early menopause, regardless of desire for future children. Although the negative psychosocial impact of cancer-related infertility is now well accepted, limited work has been done to explore how to improve clinical management of fertility issues in the context of cancer care. Evidence-based interventions should be developed to address barriers and provide psychosocial and decision-making support to patients who are concerned about their fertility and interested in FP options. PMID:26730794

Adolescents Coping with Mom's Breast Cancer: Developing Family Intervention Programs

ERIC Educational Resources Information Center

Davey, Maureen; Gulish, Laurel; Askew, Julie; Godette, Karen; Childs, Nicole

2005-01-01

The purpose of this pilot study was to gain a deeper understanding of how adolescents are affected by their mothers' breast cancer and to discover their opinions about how future intervention programs should be designed. Three focus groups were conducted with a total of 10 adolescents. Findings indicate that adolescents' lives had been complicated…

Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder.

PubMed

Ewing, Jane E; King, Madeleine T; Smith, Narelle F

2009-03-01

To validate two health-related quality of life (HRQOL) measures, the PedsQL Generic Core and Cancer Module adolescent forms (13-18 years), after modification for 16-25-year-old adolescents and young adults (AYA) with cancer or a blood disorder. AYA patients and nominated proxies were recruited from three Sydney hospitals. Modified forms were administered by telephone or in clinics/wards. Analyses included correlations, factor analysis, and analysis of variance of known-groups (defined by the Memorial Symptom Assessment Scale). Eighty-eight patients and 79 proxies completed questionnaires. Factor structures consistent with those of the unmodified forms confirmed construct validity. Cronbach's alpha ranged 0.81-0.98. Inter-scale correlations were as hypothesized, confirming discriminant validity. Statistically significant differences between groups with mild, moderate, and severe symptoms (P < 0.05) confirmed clinical validity. These modified forms provide reliable and valid measures of HRQOL in AYA with cancer or a blood disorder, suitable for clinical trials, research, and practice.

Assessing Self-concept as a Mediator Between Anger and Resilience in Adolescents With Cancer in Taiwan.

PubMed

Wu, Wei-Wen; Chang, Joanne T; Tsai, Shao-Yu; Liang, Shu-Yuan

Anger is considered a common method used by patients to relieve emotional frustrations. However, this emotional response is not a common research focus for adolescents with cancer. The aim of this study was to determine whether self-concept mediated the relationship between anger and resilience for adolescent patients currently being treated for cancer. A cross-sectional study of 40 adolescents with cancer was conducted. The instruments included the Chinese Beck Self-Concept Inventory, the Chinese Beck Anger Inventory, and the Chinese Resilience Scale. Mediation analysis was also conducted. The results indicate that (1) variations in anger significantly account for 6.86% of observed variations in self-concept, (2) variations in self-concept significantly account for 52.83% of observed variations in resilience, (3) variations in anger significantly account for 10.96% of observed variations in resilience, and (4) when paths in conditions 1 and 2 were controlled, variations in anger through self-concept significantly account for 54.04% of observed variations in resilience, and variations in anger did not significantly account for observed variations in resilience. Gender and age might affect anger control. Despite worse physical functioning and an impacted appearance, participants had normative-to-positive self-concept levels, suggesting that their self-concept might not be affected by cancer. Self-concept might play a mediating role between anger and resilience, thus helping to bridge this knowledge gap. The current gap in knowledge regarding the mediating relationship necessitates the implementation of a large-scale study designed to verify the mediating role of self-concept between anger and resilience.

Association between diet during preadolescence and adolescence and risk for breast cancer during adulthood.

PubMed

Mahabir, Somdat

2013-05-01

It is increasingly evident that diet during preadolescence and adolescence has important consequences for breast cancer during adulthood. However, only a few epidemiologic studies have been conducted on the relationship between diet during preadolescence and adolescence, and cancer during adulthood. This situation is partly because of methodological challenges such as the long latency period, the complexity of breast cancer, the lack of validated diet assessment tools, and the large number of subjects that must be followed, all of which increase costs. In addition, funding opportunities are few for such studies. Results from the small number of epidemiologic studies are inconsistent, but evidence is emerging that specific aspects of the diet during preadolescence and adolescence are important. For example, during preadolescence and adolescence, severe calorie restriction with poor food quality, high total fat intake, and alcohol intake tend to increase risk, whereas high soy intake decreases risk. Research on preadolescent and adolescent diet is a paradigm shift in breast cancer investigations. This research paradigm has the potential to produce transformative knowledge to inform breast cancer prevention strategies through dietary intervention during preadolescence and adolescence, rather than later in life, as is current practice, when it is perhaps less effective. Methodological challenges that have plagued the field might now be overcome by leveraging several existing large-scale cohort studies in the U.S. and around the world to investigate the role of diet during preadolescence and adolescence in risk for adult breast cancer. Published by Elsevier Inc.

Awareness of cervical cancer prevention among mothers of adolescent daughters in Korea: qualitative research

PubMed Central

Kim, Hae Won; Kim, Duck Hee

2015-01-01

Objectives Korean adolescent girls are unprepared for cervical cancer prevention due to the lack of a mandatory policy regarding human papilloma virus (HPV) vaccination and school health education regarding cervical cancer. The aim of this study was to determine how aware mothers are about cervical cancer prevention in their adolescent daughters, with a view to developing strategies for expanding primary cervical cancer prevention for adolescent girls through the mothers’ involvement. Design A qualitative design was employed. Nine mothers with adolescent daughters participated in this study and were interviewed using open-ended questions. The themes were extracted by content analysis. Setting A general living area in Seoul, South Korea. Participants The snowball method was used to select mothers. Results Five themes emerged. In general, the mothers’ awareness of cervical cancer was not clear, and they exhibited a lack of awareness of the importance of having a regular Papanicolaou screening test. The mothers recognised that they were role models for their daughters, and realised and accepted the necessity of educating their daughters regarding cervical cancer; however, they perceived barriers related to the prevention of cervical cancer in their daughters. The mothers recommended enforcing sex education in schools and the provision of financial support for HPV vaccination. Conclusions The mothers’ awareness and preparedness with respect to the prevention of cervical cancer in their adolescent daughters were low and inadequate. Mothers should be informed and motivated to play a role in the education of their daughters regarding cervical cancer prevention. Strategies for disseminating information regarding early cervical cancer prevention for adolescent girls are recommended by communicating with both the girls and their mothers and providing them with education regarding cervical cancer prevention. PMID:25976761

Awareness of cervical cancer prevention among mothers of adolescent daughters in Korea: qualitative research.

PubMed

Kim, Hae Won; Kim, Duck Hee

2015-05-14

Korean adolescent girls are unprepared for cervical cancer prevention due to the lack of a mandatory policy regarding human papilloma virus (HPV) vaccination and school health education regarding cervical cancer. The aim of this study was to determine how aware mothers are about cervical cancer prevention in their adolescent daughters, with a view to developing strategies for expanding primary cervical cancer prevention for adolescent girls through the mothers' involvement. A qualitative design was employed. Nine mothers with adolescent daughters participated in this study and were interviewed using open-ended questions. The themes were extracted by content analysis. A general living area in Seoul, South Korea. The snowball method was used to select mothers. Five themes emerged. In general, the mothers' awareness of cervical cancer was not clear, and they exhibited a lack of awareness of the importance of having a regular Papanicolaou screening test. The mothers recognised that they were role models for their daughters, and realised and accepted the necessity of educating their daughters regarding cervical cancer; however, they perceived barriers related to the prevention of cervical cancer in their daughters. The mothers recommended enforcing sex education in schools and the provision of financial support for HPV vaccination. The mothers' awareness and preparedness with respect to the prevention of cervical cancer in their adolescent daughters were low and inadequate. Mothers should be informed and motivated to play a role in the education of their daughters regarding cervical cancer prevention. Strategies for disseminating information regarding early cervical cancer prevention for adolescent girls are recommended by communicating with both the girls and their mothers and providing them with education regarding cervical cancer prevention. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to

Factors associated with the mental health of adolescents when a parent has cancer.

PubMed

Lindqvist, B; Schmitt, F; Santalahti, P; Romer, G; Piha, J

2007-08-01

This study explored factors associated with the mental health in adolescents (ages 11-17; n = 54) within 12 months after a parent had been diagnosed with cancer. A control group was included (ages 11-17; n = 49). A demographic questionnaire, the SF-8 Health Survey, the Youth Self Report and the McMaster Family Assessment Device were used. Similar levels of psychological distress and healthy family functioning were reported in the clinical and the control group. No effect of gender of the ill parent and that of the adolescent was found. A negative correlation was found between the physical health of the ill parent and the mental health of the adolescent. Healthy family functioning correlated with less psychological distress in adolescents with a parent with cancer. Open communication, flexible problem solving and appropriate affective involvement were significant predictors for less psychological distress in the adolescents. The study concludes that a healthy family functioning facilitated the adolescent's adjustment to parental cancer.

Who Treats Adolescents and Young Adults with Cancer? A Report from the AYA HOPE Study.

PubMed

Parsons, Helen M; Harlan, Linda C; Schmidt, Susanne; Keegan, Theresa H M; Lynch, Charles F; Kent, Erin E; Wu, Xiao-Cheng; Schwartz, Stephen M; Chu, Roland L; Keel, Gretchen; Smith, Ashley Wilder

2015-09-01

Physicians play a critical role in delivering effective treatment and enabling successful transition to survivorship among adolescent and young adult (AYA) cancer patients. However, with no AYA cancer medical specialty, information on where and by whom AYAs with cancer are treated is limited. Using the National Cancer Institute's population-based AYA HOPE Study, 464 AYAs aged 15-39 at diagnosis treated by 903 physicians were identified. Differences in physician and hospital characteristics were examined by age at diagnosis and cancer type (germ cell cancer, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia [ALL], and sarcoma) using chi-square tests. Treating physicians were predominately 51-64 years old, male, United States-trained in non-pediatric specialties, and in group practices within large metropolitan areas. Older patients were less often treated by pediatric physicians (p < 0.01) and more likely to be treated by United States-trained physicians without research/teaching responsibilities and in hospitals without residency programs (p < 0.05). The majority of the few pediatricians (n = 44) treated ALL patients. Physicians with research/teaching responsibilities and those based in medical schools were more likely to treat patients with ALL and sarcoma compared with other cancer types (p < 0.01). Of HL patients, 73% were treated at a cancer center compared with 56% of patients with germ cell cancer (p < 0.01), while ALL (85%) and sarcoma (87%) patients were more likely to be treated in hospitals with residency programs (p < 0.01). Most AYAs with cancer were treated by non-pediatric physicians in community settings, although physician characteristics varied significantly by patient cancer type and age at diagnosis.

Adolescents and Young Adults With Cancer: Oncology Nurses Report Attitudes and Barriers to Discussing Fertility Preservation.

PubMed

Nobel Murray, Alexandra; Chrisler, Joan C; Robbins, Mark L

2016-08-01

Fertility issues have been found to be an important topic for adolescents and young adults (AYAs) with cancer. Medical technology has made fertility preservation (FP) increasingly effective for postpubertal patients whose treatment course may inhibit their future ability to achieve biologic parenthood. Oncology providers' recommendations have been shown to vary, potentially affecting patients' decision-making processes regarding FP. This study was designed to assess oncology nurses' recommendations for patients to consider FP options and to explore what patient-related factors may influence discussion of FP with AYAs with cancer. 116 oncology nurses participated in this study and were randomized to read one of four vignettes about a patient whose proposed treatment course could affect his or her fertility. Participants' recommendations to partake in FP were analyzed to test for differences by patient age and gender. Open-ended responses to questions about their experiences as oncology nurses were analyzed descriptively. Nurses strongly recommended that all patients explore FP options before the start of treatment. Oncology nurses endorsed stronger opinions that young adult female patients should be given independent decision-making power to delay treatment for FP, compared to male and female adolescent patients and young adult male patients. Participants mentioned barriers to discussions that included concerns about exacerbating negative emotions and the decision-making capacity of young patients.

Hear Our Voices: Meeting the New Challenges of Adolescents with Cancer and Their Caregiver

ERIC Educational Resources Information Center

Nelson, Jeanne M.

2012-01-01

The diagnosis and treatment of cancer in adolescence requires that adolescents and their caregivers learn to transition and adjust to the challenges associated with cancer. The aim of this phenomenological study was to generate a detailed examination of the experiences of four caregivers and their adolescent children, 11 to 18 years of age,…

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.

The Influence of Adolescence on Parents' Perspectives of Testing and Discussing Inherited Cancer Predisposition.

PubMed

Schultz, Corinna L; Alderfer, Melissa A; Lindell, Robert B; McClain, Zachary; Zelley, Kristin; Nichols, Kim E; Ford, Carol A

2018-06-16

Li-Fraumeni syndrome (LFS) is a highly penetrant cancer predisposition syndrome that may present with a first cancer before or during adolescence/young adulthood. Families offered LFS genetic testing for their children can inform our understanding of how the unique developmental context of adolescence influences parental perspectives about genetic testing and discussions of cancer risk. In this study, semi-structured interviews were conducted with 46 parents of children at risk for LFS to capture those perspectives. Analysis utilized summary descriptive statistics and inductive qualitative content coding. Most parents (33/46; 72%) expressed beliefs that adolescence influences the importance of LFS testing and/or discussions about genetic risk. Twenty-six parents related this influence to cognitive, physical, and social changes occurring during adolescence. Aspects of adolescence perceived as promoting LFS testing/discussion included developmental appropriateness, risks of cancer in adolescence, need for medical screening decisions, influence on behaviors, transition to adult health care, and reproductive risks. Aspects of adolescence perceived as complicating LFS testing/discussions included potential negative emotional impact, misunderstanding, added burden, and negative impact on self-image or future planning. Parents recognize the complex influence that adolescence has on LFS testing and conversations surrounding results. Further research is needed to understand the actual impact of genetic testing on young people, and how to best support parents and adolescents within the broader context of heritable diseases.

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

PubMed Central

Beaupin, Lynda K.; Demark-Wahnefried, Wendy; Fasciano, Karen; Ganz, Patricia A.; Hayes-Lattin, Brandon; Hudson, Melissa M.; Nevidjon, Brenda; Oeffinger, Kevin C.; Rechis, Ruth; Richardson, Lisa C.; Seibel, Nita L.; Smith, Ashley W.

2015-01-01

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research. PMID:25568146

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

PubMed

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

2017-11-01

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

Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer.

PubMed

Bradford, Natalie K; Greenslade, Rebecca; Edwards, Rachel M; Orford, Rebekah; Roach, Jane; Henney, Roslyn

2018-01-16

Young people with cancer have distinct clinical and psychosocial needs during and after cancer treatment. However, as adolescent and young adult (AYA) cancer is rare, and only recently recognized as specialty, health professionals may not have the skills, competence, and confidence to meet the needs of the young patient with cancer. The aim of this study was to identify the learning needs of health professionals providing cancer care to adolescents and young adults before and following the introduction of a state-wide AYA cancer education program. A survey of educational needs of health professionals was undertaken in 2013 at the commencement of the Queensland Youth Cancer Service. The survey was used to develop the education program of the service. The education program was delivered across the state in a variety of formats, covering a range of topics throughout 2013-2016. The second survey was completed in 2017. Results were compared to identify if educational needs or the self-rated confidence of health professionals in regard to AYA cancer care had changed over time. One hundred twenty-two participants completed the first survey and 73 completed the second. The most prominent educational needs in 2013 were palliative care and biomedical topics such as understanding AYA growth and development as well as specific AYA cancers and treatment. The second survey identified that palliative care education remained important; however, there was a shift toward health professionals request for more psychosocial and practical education on topics including fertility, sexuality, and managing late effects. To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.

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

PubMed

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

2018-04-01

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

Psychological morbidities in adolescent and young adult blood cancer patients during curative-intent therapy and early survivorship.

PubMed

Muffly, Lori S; Hlubocky, Fay J; Khan, Niloufer; Wroblewski, Kristen; Breitenbach, Katherine; Gomez, Joseline; McNeer, Jennifer L; Stock, Wendy; Daugherty, Christopher K

2016-03-15

Adolescents and young adults (AYAs) with cancer face unique psychosocial challenges. This pilot study was aimed at describing the prevalence of psychological morbidities among AYAs with hematologic malignancies during curative-intent therapy and early survivorship and at examining provider perceptions of psychological morbidities in their AYA patients. Patients aged 15 to 39 years with acute leukemia, non-Hodgkin lymphoma, or Hodgkin lymphoma who were undergoing curative-intent therapy (on-treatment group) or were in remission within 2 years of therapy completion (early survivors) underwent a semistructured interview that incorporated measures of anxiety, depression, and posttraumatic stress (PTS). A subset of providers (n = 15) concomitantly completed a survey for each of the first 30 patients enrolled that evaluated their perception of each subject's anxiety, depression, and PTS. Sixty-one of 77 eligible AYAs participated. The median age at diagnosis was 26 years (range, 15-39 years), 64% were male, and 59% were non-Hispanic white. On-treatment demographics differed significantly from early-survivor demographics only in the median time from diagnosis to interview. Among the 61 evaluable AYAs, 23% met the criteria for anxiety, 28% met the criteria for depression, and 13% met the criteria for PTS; 46% demonstrated PTS symptomatology. Thirty-nine percent were impaired in 1 or more psychological domains. Psychological impairments were as frequent among early survivors as AYAs on treatment. Provider perceptions did not significantly correlate with patient survey results. AYAs with hematologic malignancies experience substantial psychological morbidities while they are undergoing therapy and during early survivorship, with more than one-third of the patients included in this study meeting the criteria for anxiety, depression, or traumatic stress. This psychological burden may not be accurately identified by their oncology providers. © 2016 American Cancer Society.

School Reintegration for Children and Adolescents with Cancer: The Role of School Psychologists

ERIC Educational Resources Information Center

Harris, Mekel S.

2009-01-01

As a result of advancements in medical expertise and technology, children and adolescents diagnosed with cancer now have opportunities to participate in many typical activities, including school. To some extent, school reintegration reflects positive adjustment to their illness. Nevertheless, children and adolescents with cancer may experience…

[The design and content validity of an infection control health education program for adolescents with cancer].

PubMed

Wang, Huey-Yuh; Chen, Yueh-Chih; Lin, Dong-Tsamn; Gau, Bih-Shya

2005-06-01

The purpose of this article is to describe the process of designing an Infection Control Health Education Program (ICP) for adolescents with cancer, to describe the content of that program, and to evaluate its validity. The program consisted of an audiovisual "Infection Control Health Education Program in Video Compact Disc (VCD)" and "Self-Care Daily Checklist (SCDC)". The VCD was developed from systematic literature reviews and consultations with experts in pediatric oncology care. It addresses the main issues of infection control among adolescents. The content of the SCDC was designed to enhance adolescents' self-care capabilities by means of twice daily self-recording. The response format for content validity of the VCD and SCDC was a 5-point Likert scale. The mean score for content validity was 4.72 for the VCD and 4.82 for the SCDC. The percentage of expert agreement was 99% for the VCD and 98% for the SCDC. In summary, the VCD was effective in improving adolescents' capacity for self-care and the extensive reinforcement SCDC was also shown to be useful. In a subsequent pilot study, the authors used this program to increase adolescent cancer patients' self-care knowledge and behavior for, and decrease their levels of secondary infection.

Uncovering the Biology of Cancers in Adolescents and Young Adults

Cancer.gov

Evidence suggests that some adolescent and young adult cancers may have unique genetic and biological features. Researchers are trying to better understand the biology of these cancers in order to identify potential therapeutic targets.

Empowerment in adolescents and young adults with cancer: Relationship with health‐related quality of life

PubMed Central

Kaal, Suzanne E.J.; Husson, Olga; van Duivenboden, Saskia; Jansen, Rosemarie; Manten‐Horst, Eveliene; Servaes, Petra; Prins, Judith B.; van den Berg, Sanne W.

2017-01-01

BACKGROUND The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health‐related quality of life (HRQOL) among AYA patients with cancer. METHODS Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). RESULTS A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self‐awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = ‐.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01). CONCLUSIONS Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late

Declines in Cancer Death Rates Among Children and Adolescents in the United States, 1999-2014.

PubMed

Curtin, Sally C; Minino, Arialdi M; Anderson, Robert N

2016-09-01

Data from the National Vital Statistics System •During 1999-2014, the cancer death rate for children and adolescents aged 1-19 years in the United States declined 20%, from 2.85 to 2.28 per 100,000 population. •The cancer death rate for males aged 1-19 years in 2014 was 30% higher than for females. •Declines in cancer death rates during 1999-2014 were experienced among both white and black persons aged 1-19 years and for all 5-year age groups. •During 1999-2014, brain cancer replaced leukemia as the most common cancer causing death among children and adolescents aged 1-19 years, accounting for 3 out of 10 cancer deaths in 2014. Since the mid-1970s, cancer death rates among children and adolescents in the United States showed marked declines despite a slow increase in incidence for some of the major types (1-3). These trends have previously been shown through 2012. This data brief extends previous research by showing trends in cancer death rates through 2014 among children and adolescents aged 1-19 years in the United States. Cancer death rates for 1999-2014 are presented and trends are compared for both females and males, by 5-year age group, and for white and black children and adolescents. Percent distributions of cancer deaths among children and adolescents aged 1-19 years are shown by anatomical site for 1999 and 2014. All material appearing in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated.

Factors influencing transitional care from adolescents to young adults with cancer in Taiwan: A population-based study.

PubMed

Jin, Yo-Ting; Chen, Chin-Mi; Chien, Wu-Chien

2016-08-02

To investigate the progress of transition from paediatric to adult health care for patients with cancer in Taiwan's medical system. The data were retrieved from the Longitudinal Health Insurance Database (LHID), which contains the original inpatient and outpatient medical claims data for 1,000,000 enrollees randomly sampled from the NHIRD between 1997 and 2010. Among the 1,411 cancer patients selected for this study, 98.09 % received adult-oriented therapy before the age of 18. In addition, only 1.91 % of the patients received paediatric-oriented therapy during adolescence. The primary factors that determine whether these patients would receive paediatric-oriented therapy or adult-oriented therapy at an early age were as follows: the age of the patient at the first visit and the performance-level of the hospital (p < 0.001). Previous studies conducted in developed countries have demonstrated that the unwillingness of patients to switch from paediatric-oriented therapy to adult-oriented therapy being the major obstacle that hinders the transition process. However, this study revealed a different result: the implementation of the National Health Insurance system in Taiwan makes healthcare affordable for the adolescent patients who may not possess adequate knowledge about paediatric health care and may not appreciate paediatric-oriented therapy, thereby hindering the transition process.

Fertility preservation in young patients with cancer

PubMed Central

Suhag, Virender; Sunita, B. S.; Sarin, Arti; Singh, A. K.; Dashottar, S.

2015-01-01

Infertility can arise as a consequence of treatment of oncological conditions. The parallel and continued improvement in both the management of oncology and fertility cases in recent times has brought to the forefront the potential for fertility preservation in patients being treated for cancer. Many survivors will maintain their reproductive potential after the successful completion of treatment for cancer. However total body irradiation, radiation to the gonads, and certain high dose chemotherapy regimens can place women at risk for acute ovarian failure or premature menopause and men at risk for temporary or permanent azoospermia. Providing information about risk of infertility and possible interventions to maintain reproductive potential are critical for the adolescent and young adult population at the time of diagnosis. There are established means of preserving fertility before cancer treatment; specifically, sperm cryopreservation for men and in vitro fertilization and embryo cryopreservation for women. Several innovative techniques are being actively investigated, including oocyte and ovarian follicle cryopreservation, ovarian tissue transplantation, and in vitro follicle maturation, which may expand the number of fertility preservation choices for young cancer patients. Fertility preservation may also require some modification of cancer therapy; thus, patients’ wishes regarding future fertility and available fertility preservation alternatives should be discussed before initiation of therapy. PMID:26942145

[A childhood and adolescence cancer survivors' association: Les Aguerris].

PubMed

Ly, Kai Yan; Vélius, Élodie; Pitot, Maxime; Rivieri, Lionel; Dupont, Morvan

2015-01-01

In France, we can estimate that 50,000 adults are childhood or adolescence cancer survivors. Not all of them will experience late effects but they should be informed about their previous disease and should get a detailed summary of treatment information including a personal plan for late effects screening. They also should have access to appropriate follow-up care including detection and treatment of late effects and provision of support and advice. From a follow-up clinic experience, the need of a survivor association has emerged and "Les Aguerris" has been created with several objectives: to improve the quality of life of survivors providing them information about the possible physical, social and psychological consequences of childhood cancer, to raise awareness of public authorities and other actors on questions regarding the need of long-term follow-up of the patients in dedicated clinics, to support researches about late effects of cancer and treatments and to create a network of adult survivors of childhood cancer in relation with other European survivors or parents associations. This paper describes the activities of the association to fulfill its objectives and the annual national meetings they are organizing. Copyright © 2015 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.

Comparison of self-reported physical activity in children and adolescents before and during cancer treatment.

PubMed

Götte, Miriam; Kesting, Sabine; Winter, Corinna; Rosenbaum, Dieter; Boos, Joachim

2014-06-01

Physical activities are important for the development of children and increasing evidence suggests beneficial effects of physical activity promotion during cancer treatment as well. The present study aimed at evaluating the current need of exercise interventions in pediatric cancer patients undergoing acute treatment and identifying risk factors for inactivity. Data about self-reported physical activity before and during treatment was collected in a cross-sectional design with the physical activity questionnaire from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS) in a modified cancer specific version. One hundred thirty pediatric cancer patients with various entities were questioned 3.0 ± 1.6 months since diagnosis. Patients' activity levels before diagnosis mainly matched reference values for healthy children in Germany. Reductions during treatment affected all dimensions of daily physical activities and minutes of exercise per week decreased significantly (P < 0.001). Largest reductions of physical activities during treatment were identified for bone tumor patients and in-patient stays. Due to the well known importance of physical activity during childhood and the identified risk of inactivity during cancer treatment, supervised exercise interventions should be implemented into acute treatment phase to enhance activity levels and ensure a continuously support by qualified exercise professionals. © 2013 Wiley Periodicals, Inc.

Perceived Stress, Parent-Adolescent/Young Adult Communication, and Family Resilience Among Adolescents/Young Adults Who Have a Parent With Cancer in Taiwan: A Longitudinal Study.

PubMed

Chen, Chin-Mi; Du, Bao-Feng; Ho, Ching-Liang; Ou, Wei-Jen; Chang, Yue-Cune; Chen, Wei-Ching

Family resilience helps family members successfully overcome adversity, for example, chronic disease or unpleasant situations. However, few studies have identified correlates of family resilience among adolescents/young adults having a parent with cancer. This longitudinal study explored (1) relationships among family resilience, adolescents' perceived stress, and parent-adolescent/young adult communication; (2) trends in family resilience with data collection time; and (3) differences in parent-adolescent/young adult communication by parent gender (ie, father or mother). Participants were teenagers and young adults (12-25 years) with a parent who had cancer. Data were collected using structured questionnaires at 3 times for 4 to 5 months, with 2 months between each collection. Of 96 adolescent/young adult participants enrolled at T1, only 32 completed all measurements at T3. We found that (1) family resilience was negatively associated with adolescents' perceived stress (B = -0.35) and positively associated with adolescent/young adult communication with both the father (B = 0.58) and the mother (B = 0.36), (2) the degree of family resilience at T3 was significantly lower than at T1 (B = -4.79), and (3) at all 3 data collection times, the degree of adolescent/young adult communication was higher with mothers than with fathers, whether the mother had cancer or did not have cancer. Family resilience was positively associated with parent-adolescent/young adult communication and negatively related to perceived stress. Family resilience tended to decline with longer parental survival since cancer diagnosis. We suggest nursing interventions to reduce adolescent/young adult stress and develop optimal parent-adolescent/young adult communication to enhance family resilience.

Human papillomavirus-related diseases: oropharynx cancers and potential implications for adolescent HPV vaccination.

PubMed

Gillison, Maura L

2008-10-01

Molecular and epidemiological data now support an etiologic role for oncogenic human papillomavirus (HPV) in oral cancers in women and men. Recent studies have demonstrated an increase in the incidence of HPV-associated oral cancers in the United States. Moreover, the incidence rates for these cancers are higher in men than women. Oral HPV infections acquired through oral sex appear to be the principal risk factor for HPV-associated oral cancers. Despite reports in the popular press that the prevalence of oral sexual behaviors is increasing in the adolescent population, trends in these behaviors over time are largely unavailable. However, data indicate that oral-genital contact is frequently practiced among adolescents; adolescents do not typically consider this a risky behavior. The majority of oral cancers (approximately 90%) caused by HPV are identified as HPV 16 positive. Therefore, HPV-associated oral cancers could be prevented by a prophylactic vaccine if the vaccine were demonstrated to be capable of preventing oral HPV 16 infection. These findings have created new potential opportunities for the primary prevention of oral cancers.

Social Well-Being Among Adolescents and Young Adults With Cancer: A Systematic Review

PubMed Central

Warner, Echo L.; Kent, Erin E.; Trevino, Kelly M.; Parsons, Helen M.; Zebrack, Brad J.; Kirchhoff, Anne C.

2016-01-01

BACKGROUND A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. METHODS A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain. RESULTS AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. CONCLUSIONS Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks. PMID:26848713

Patient education: perspective of adolescents with a chronic disease.

PubMed

Kyngäs, Helvi

2003-09-01

The purpose of this study was to describe patient education from the perspective of adolescents. Data were collected by interviewing adolescents who had asthma, epilepsy, juvenile rheumatoid arthritis, and insulin-dependent diabetes mellitus. The sample consisted of 40 Finnish adolescents aged between 13 and 17 years. The interview data were analysed with methods of content analysis. From the perspective of adolescents with a chronic disease, patient education can be divided into the following categories: routine programmes, problematic planning issues, atmosphere of patient education session and written patient education material. Some features of ideal patient education also emerged. In a routine programme, patient education was based on the professional knowledge of the physicians and nurses rather than the needs of the adolescents. It was provided at a time that was good for the nurses or physicians. The level of education was not compatible with each developmental level of the adolescent. Problematic planning issues included a poorly outlined plan of education and a lack of systematic and continuous education. Educational communication consisted of dialogue between the adolescent and the educator. An encouraging atmosphere developed when the educators motivated the adolescents, respected them and their opinions and encouraged them to express their feelings, to ask questions and to relate experiences. Also, it was important that the adolescents' opinions were respected. In ideal patient education, the sessions had been planned well beforehand based on the adolescents' needs and written patient education material. Ideal patient education helped adolescents to acquire skills to take care of themselves and provided information on how to adjust to different situations and problems. The results provided useful insight into patient education and served to raise awareness of the problems and difficulties experienced by adolescents with a chronic disease.

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

PubMed

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

2016-03-01

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

Highlights From a Workshop on Opportunities for Cancer Prevention During Preadolescence and Adolescence

PubMed Central

Holman, Dawn M.; Rodriguez, Juan L.; Peipins, Lucy; Watson, Meg; White, Mary C.

2015-01-01

In an effort to explore opportunities for cancer prevention during preadolescence and adolescence, the Cancer Prevention Across the Lifespan workgroup within the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention (CDC) convened an informal panel of experts for a 2-day workshop August 9–10, 2011. In this report, we provide highlights from the workshop. A central theme of the workshop was that preadolescence and adolescence are times of unique susceptibility and vulnerability within the lifespan. Participants discussed the evidence linking exposures during adolescence (e.g., risky behaviors, chemicals, medical imaging procedures) and subsequent cancer risk during adulthood. Participants also discussed potential opportunities to intervene on risk factors for cancer at multiple levels during adolescence, the importance of more focused approaches to adequately address health disparities, and the ongoing need for transdisciplinary and translational prevention research. Future opportunities for the CDC include further leveraging surveillance data from sources such as the National Health and Nutrition Examination Survey, the Youth Risk Behavior Surveillance System, and the National Children's Study and continuing to build on collaborations with other federal agencies and with national, state, and local organizations. Many ideas and insights generated during the workshop will be put into action as CDC continues to explore opportunities for cancer prevention during youth and across the lifespan. PMID:23601615

Geographic Variation in Mortality Among Children and Adolescents Diagnosed with Cancer in Tennessee: Does Race Matter?

PubMed Central

Lindley, Lisa C.; Oyana, Tonny J.

2017-01-01

Cancer is one of the leading causes of death among children in the United States. Previous research has examined geographic variation in cancer incidence and survival, but the geographic variation in mortality among children and adolescents is not as well understood. The purpose of this study was to investigate geographic variation by race in mortality among children and adolescents diagnosed with cancer in Tennessee. Using an innovative combination of spatial and non-spatial analysis techniques with data from the 2004–2011 Tennessee Cancer Registry, pediatric deaths were mapped and the affect of race on the proximity to rural areas and clusters of mortality were explored with multivariate regressions. The findings revealed that African American children and adolescents in Tennessee were more likely than their counterparts of other races to reside in rural areas with close proximity to mortality clusters of children and adolescents with a cancer. Findings have clinical implications for pediatric oncology nurses regarding the delivery of supportive care at end of life for rural African American children and adolescents. PMID:26458417

Adolescent Perspectives on Phase I Cancer Research

PubMed Central

Miller, Victoria A.; Baker, Justin N.; Leek, Angela C.; Hizlan, Sabahat; Rheingold, Susan R.; Yamokoski, Amy D.; Drotar, Dennis; Kodish, Eric

2012-01-01

Background The aim of this study was to examine adolescent patients’ perspectives on their understanding and decision making about a pediatric Phase I cancer study. Procedure Participants included adolescents ages 14-21 years with cancer (N = 20), all of whom attended a Phase I study consent conference. Participants responded to closed- and open-ended questions on a verbally administered structured interview, which assessed aspects of understanding and decision making about the Phase I study. Results All participants decided to enroll in the Phase I study. The majority of participants understood that participation was voluntary, entailed risks, and that they could withdraw. Most also believed that participation in the Phase I study would increase the length of their lives. The most frequent reasons for enrolling were positive clinical benefit, needing an option, impact on quality of life, and few side effects or fewer than those of current or past treatments. Eighty-five percent of participants reported that they themselves made the final decision about enrollment in the Phase I study. Conclusions Most participants hoped or expected that the Phase I study would provide a direct benefit (increased survival time or cure) and reported that they themselves were the final decision-maker about enrollment. Clinicians may underestimate the role of adolescents, especially if they believe that parents typically make such decisions. Future research should assess the actual participation of children and adolescents during the informed consent process and explore the role of hope in their decision making about Phase I studies. PMID:23034985

Scottish adolescents' sun-related behaviours, tanning attitudes and associations with skin cancer awareness: a cross-sectional study.

PubMed

Kyle, Richard G; Macmillan, Iona; Forbat, Liz; Neal, Richard D; O'Carroll, Ronan E; Haw, Sally; Hubbard, Gill

2014-05-02

To describe Scottish adolescents' sun-related behaviours and tanning attitudes and assess associations with skin cancer awareness. Cross-sectional study. 20 state secondary schools in one Scottish local authority (Glasgow City). 2173 adolescents (females: 50.7%, n=1102) with a mean age of 12.4 (SD=0.55). Sun-related behaviour (suntan, sunbathing, sunburn, sunscreen use, sunbed use), tanning attitudes, skin cancer-related symptom and risk factor awareness. Adolescents reported poor sun-related practice: 51% of adolescents reported sunburn the previous summer of whom 38% indicated sunburn on more than one occasion. Skin cancer awareness was low: 45% recognised 'change in the appearance of a mole' as a cancer symptom, and 39% agreed that 'getting sunburnt more than once as a child' increased cancer risk. 42% and 26% of adolescents, respectively, reported that friends and family held protanning attitudes. Compared with males, females were statistically significantly more likely to: report sunbathing (p<0.001), use of lotions or oil to aid tanning (p=0.009) and sunburn (p<0.001); know that changes in the appearance of a mole was a skin cancer symptom (p=0.036) and sunburn more than once as a child was a skin cancer risk factor (p=0.005); perceive their friends to hold protanning attitudes (p<0.001) and indicate that a tan made them feel better about themselves (p<0.001), more attractive to others (p=0.011) and healthier (p<0.001). Scottish adolescents had poor sun protection practice and low skin cancer awareness. Girls adopted riskier sun-related behaviour despite greater awareness of skin cancer-related risk. Urgent action is required to promote positive sun-related behaviour and increase skin cancer awareness among Scottish adolescents. However, further research is needed to inform the development of effective sun-safe interventions.

The relationship between perceived parental rearing behaviors and school adjustment of adolescent cancer survivors in Korea

PubMed Central

Lee, Sunhee; Kim, Dong Hee

2017-01-01

Abstract Return and adjustment to school in adolescents who have survived cancer have become of increasing interest as the numbers of childhood cancers survivors have grown due to advances in treatments. Perceived parental rearing behavior is an important factor related to school adjustment. This study examined the relationships between maternal and parental rearing practices, general characteristics, and school adjustment in adolescent cancer survivors in Korea. We conducted a descriptive, exploratory study of 84 adolescents with cancer using the Korean version of the Fragebogen zum erinnerten elterlichen Erziehungsverhalten: FEE (Recalled Parental Rearing Behavior) and a school adjustment measurement. Descriptive, Pearson correlational, and multiple regression analyses were used to investigate the data. In bivariate analysis, age (r = −0.358, P < .05), mother's emotional warmth (r = 0.549, P < .01), and father's emotional warmth (r = 0.391, P < .05) were significantly associated with school adjustment. However, the results of multiple regression analysis showed that only mother's emotional warmth (β = .720, P < .05) was significantly associated with school adjustment. Adolescent cancer survivors who reported higher mother's emotional warmth exhibited better school adjustment. This finding indicates that it is important to help parents of adolescent cancer survivors enhance their parental rearing behaviors, such as emotional warmth, to help adolescents adjust to school. PMID:28796068

Creating beauty: the experience of a fashion collection prepared by adolescent patients at a pediatric oncology unit.

PubMed

Veneroni, Laura; Clerici, Carlo Alfredo; Proserpio, Tullio; Magni, Chiara; Sironi, Giovanna; Chiaravalli, Stefano; Roncari, Luisa; Casanova, Michela; Gandola, Lorenza; Massimino, Maura; Ferrari, Andrea

2015-01-01

Adolescent patients with cancer need psychological support in order to face the traumatic event of cancer diagnosis and to preserve continuity with their normal lives. Creative projects or laboratories may help young patients express their thoughts and feelings. The Youth Project developed activities dedicated to adolescents to give them a chance to vent their creative spirit and express themselves freely. In the first project, the teenagers designed their own fashion collection in all its various stages under the artistic direction of a well-known fashion designer, creating their own brand name (B.Live), and organized a fashion show. In all, 24 patients from 15 to 20 years old took part in the project. The fashion project proved a fundamental resource in helping the young patients involved to regain a positive self-image and the feeling that they could take action, both on themselves and in their relations with others. Facilitating the experience of beauty may enable hope to withstand the anguish caused by disease. This experience integrated the usual forms of psychological support to offer patients a form of expression and support during the course of their treatment.

Paracetamol (acetaminophen) for chronic non-cancer pain in children and adolescents.

PubMed

Cooper, Tess E; Fisher, Emma; Anderson, Brian; Wilkinson, Nick Mr; Williams, David G; Eccleston, Christopher

2017-08-02

Pain is a common feature of childhood and adolescence around the world, and for many young people, that pain is chronic. The World Health Organization guidelines for pharmacological treatments for children's persisting pain acknowledge that pain in children is a major public health concern of high significance in most parts of the world. While in the past, pain was largely dismissed and was frequently left untreated, views on children's pain have changed over time, and relief of pain is now seen as important.We designed a suite of seven reviews on chronic non-cancer pain and cancer pain (looking at antidepressants, antiepileptic drugs, non-steroidal anti-inflammatory drugs, opioids, and paracetamol as priority areas) in order to review the evidence for children's pain utilising pharmacological interventions in children and adolescents.As the leading cause of morbidity in children and adolescents in the world today, chronic disease (and its associated pain) is a major health concern. Chronic pain (lasting three months or longer) can arise in the paediatric population in a variety of pathophysiological classifications: nociceptive, neuropathic, idiopathic, visceral, nerve damage pain, chronic musculoskeletal pain, and chronic abdominal pain, and other unknown reasons.Paracetamol (acetaminophen) is one of the most widely used analgesics in both adults and children. The recommended dosage in the UK, Europe, Australia, and the USA for children and adolescents is generally 10 to 15 mg/kg every four to six hours, with specific age ranges from 60 mg (6 to 12 months old) up to 500 to 1000 mg (over 12 years old). Paracetamol is the only recommended analgesic for children under 3 months of age. Paracetamol has been proven to be safe in appropriate and controlled dosages, however potential adverse effects of paracetamol if overdosed or overused in children include liver and kidney failure. To assess the analgesic efficacy and adverse events of paracetamol (acetaminophen) used

Contemporary and future insights into fertility preservation in male cancer patients

PubMed Central

Ong, Chloe; Durairajanayagam, Damayanthi

2014-01-01

In recent years, survival rates of cancer patients have increased, resulting in a shift of focus from quantity to quality of life. A key aspect of quality of life is fertility potential; patients suffering from iatrogenic infertility often become depressed. Since many cancer therapies—chemotherapy, radiotherapy and/or surgery—and even cancer itself have detrimental effects on the male reproductive system, it is important to preserve fertility before any treatment commences. Currently, the only reliable method of male fertility preservation is sperm banking. For patients who are unable to provide semen samples by the conventional method of masturbation, there are other techniques such as electroejaculation, microsurgical epididymal sperm aspiration and testicular sperm extraction that can be employed. Unfortunately, it is presently impossible to preserve the fertility potential of pre-pubertal patients. Due to the increasing numbers of adolescent cancer patients surviving treatment, extensive research is being conducted into several possible methods such as testicular tissue cryopreservation, xenografting, in vitro gamete maturation and even the creation of artificial gametes. However, in spite of its ease, safety, convenience and many accompanying benefits, sperm banking remains underutilized in cancer patients. There are several barriers involved such as the lack of information and the urgency to begin treatment, but various measures can be put in place to overcome these barriers so that sperm banking can be more widely utilized. PMID:26816750

Contemporary and future insights into fertility preservation in male cancer patients.

PubMed

Agarwal, Ashok; Ong, Chloe; Durairajanayagam, Damayanthi

2014-03-01

In recent years, survival rates of cancer patients have increased, resulting in a shift of focus from quantity to quality of life. A key aspect of quality of life is fertility potential; patients suffering from iatrogenic infertility often become depressed. Since many cancer therapies-chemotherapy, radiotherapy and/or surgery-and even cancer itself have detrimental effects on the male reproductive system, it is important to preserve fertility before any treatment commences. Currently, the only reliable method of male fertility preservation is sperm banking. For patients who are unable to provide semen samples by the conventional method of masturbation, there are other techniques such as electroejaculation, microsurgical epididymal sperm aspiration and testicular sperm extraction that can be employed. Unfortunately, it is presently impossible to preserve the fertility potential of pre-pubertal patients. Due to the increasing numbers of adolescent cancer patients surviving treatment, extensive research is being conducted into several possible methods such as testicular tissue cryopreservation, xenografting, in vitro gamete maturation and even the creation of artificial gametes. However, in spite of its ease, safety, convenience and many accompanying benefits, sperm banking remains underutilized in cancer patients. There are several barriers involved such as the lack of information and the urgency to begin treatment, but various measures can be put in place to overcome these barriers so that sperm banking can be more widely utilized.

Risky sexual behavior in adolescent survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

PubMed

Klosky, James L; Foster, Rebecca H; Li, Zhenghong; Peasant, Courtney; Howell, Carrie R; Mertens, Ann C; Robison, Leslie L; Ness, Kirsten K

2014-08-01

To identify correlates of risky sexual behavior among adolescents surviving childhood cancer. The Child Health and Illness Profile-Adolescent Edition (CHIP-AE) was completed by 307 survivors of childhood cancer aged 15-20 years (M age at diagnosis 1.53 years; range 0-3.76). Univariate analyses were performed using χ² and Fisher's Exact tests, and multivariable logistic regression models were used to calculate odds ratios (OR) and 95% confidence intervals (CI) for risky sexual behaviors. Diagnosis of central nervous system cancer (OR = .13, 95% CI: .02-.96, p < .05), no history of beer or wine consumption (OR = .20, CI: .06-.68, p = .01), and fewer negative peer influences (OR = .28, CI: .09-.84, p = .02) associated with decreased likelihood of sexual intercourse. Good psychological health (scores ≥-1.5 SD on the CHIP-AE Emotional Discomfort scale) associated with decreased risk of early intercourse (OR = .19, CI: .05-.77, p = .02), whereas high parental education (≥ college degree) associated with decreased risk of multiple lifetime sexual partners (OR = .25, CI: .09-.72, p = .01). Increased time from diagnosis (OR = .27, CI: .10-.78, p = .02) and psychological health (OR = .09, CI: .02-.36, p < .01) associated with decreased risk of unprotected sex at last intercourse, whereas high parent education associated with increased risk (OR = 4.27, CI: 1.46-12.52, p = .01). Risky sexual behavior in adolescents surviving childhood cancer is associated with cancer type, time since diagnosis, psychological health, alcohol use, and peer influences. Consideration of these factors may provide direction for future interventions designed to reduce adolescent sexual risk-taking.

Modern computer technologies facilitate communication with a young cancer patient.

PubMed

Ripamonti, Carla Ida; Piccinelli, Claudia; Pessi, Maria Adelaide; Clerici, Carlo Alfredo

2010-01-01

The aim of this paper is to show how new technologies may help the communication process in clinical practice in a department providing supportive care to patients undergoing cancer treatment. Communication via Internet chat between the psychologist and a young man who sees chatting on the Internet as a natural and familiar mode of expression was shown to be useful. The Internet link enabled us to open a communication channel with the patient and to have a conversation that would otherwise have been impossible. Although verbal communication is the most important way to communicate among people, Internet communications are certainly an opportunity worth exploring, because they may open up new channels for cancer patients whose ability to speak is restricted. We might imagine using this approach in pediatric oncology, with adolescents and preadolescents, and with young adults like the patient discussed here. The case discussed highlights the enormous difference between the mere transfer of information and genuine communication, the latter involving an encounter with the patient.

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

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

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

Effects of supportive-educative program on quality of life of adolescents living with a parent with cancer.

PubMed

Azarbarzin, Mehrdad; Malekian, Azadeh; Taleghani, Fariba

2015-01-01

Cancer has significant traumatic effects on the family members of the patients, particularly in Asia's tightly knitted families. Research evidence suggests a debilitating impact of cancer on the quality of life of the afflicted individuals, their spouses, and their families. Since a few studies have been carried out on the quality of life of adolescents living with parents diagnosed with cancer, especially in Iran, the research team decided to evaluate the quality of life of them and also investigate the effects of supportive-educative program on it. The present quasi-experimental, one-group study had a pre-test-post-test design and was performed in Esfahan in 2014. The sample of this study consisted of 30 adolescents. The data gathering tool was the short form of quality of life questionnaire (SF-36). Data were analyzed by descriptive statistics and paired sample t-test. P-value of 0.05 was considered significant. The paired sample t-test showed that before and after presenting the program, there were significant statistical differences in some aspects of quality of life, such as physical functioning (P = 0.01), energy/fatigue (P < 0.0001), emotional well-being (P < 0.0001), social functioning (P = 0.001), pain (P < 0.0001), and general health (P = 0.01). This research showed that supportive-educative program can enhance some aspects of quality of life. Therefore, nurses and other health professionals can use this scheme or similar programs for helping adolescents living with a parent with cancer.

Fruit and vegetable consumption in adolescence and early adulthood and risk of breast cancer: population based cohort study

PubMed Central

Chen, Wendy Y; Michels, Karin B; Cho, Eunyoung; Willett, Walter C; Eliassen, A Heather

2016-01-01

Objective To evaluate the association between fruit and vegetable intake during adolescence and early adulthood and risk of breast cancer. Design Prospective cohort study. Setting Health professionals in the United States. Participants 90 476 premenopausal women aged 27-44 from the Nurses’ Health Study II who completed a questionnaire on diet in 1991 as well as 44 223 of those women who completed a questionnaire about their diet during adolescence in 1998. Main outcome measure Incident cases of invasive breast cancer, identified through self report and confirmed by pathology report. Results There were 3235 cases of invasive breast cancer during follow-up to 2013. Of these, 1347 cases were among women who completed a questionnaire about their diet during adolescence (ages 13-18). Total fruit consumption during adolescence was associated with a lower risk of breast cancer. The hazard ratio was 0.75 (95% confidence interval 0.62 to 0.90; P=0.01 for trend) for the highest (median intake 2.9 servings/day) versus the lowest (median intake 0.5 serving/day) fifth of intake. The association for fruit intake during adolescence was independent of adult fruit intake. There was no association between risk and total fruit intake in early adulthood and total vegetable intake in either adolescence or early adulthood. Higher early adulthood intake of fruits and vegetables rich in α carotene was associated with lower risk of premenopausal breast cancer. The hazard ratio was 0.82 (0.70 to 0.96) for the highest fifth (median intake 0.5 serving/day) versus the lowest fifth (median intake 0.03 serving/day) intake. The association with adolescent fruit intake was stronger for both estrogen and progesterone receptor negative cancers than estrogen and progesterone receptor positive cancers (P=0.02 for heterogeneity). For individual fruits and vegetables, greater consumption of apple, banana, and grapes during adolescence and oranges and kale during early adulthood was

Pilot Study: Fluvoxamine Treatment for Depression and Anxiety Disorders in Children and Adolescents with Cancer

ERIC Educational Resources Information Center

Gothelf, Doron; Rubinstein, Maly; Shemesh, Eyal; Miller, Orit; Farbstein, Ilana; Klein, Anat; Weizman, Abraham; Apter, Alan; Yaniv, Isaac

2005-01-01

Objective: To evaluate the safety, tolerability, and benefit of fluvoxamine for the treatment of major depressive disorder or anxiety disorders in children and adolescents with cancer. Method: The study was conducted from 2001 to 2004 at a pediatric hematology-oncology center. Fifteen children and adolescents with cancer were treated with…

The Experience of Adolescents and Young Adults Treated for Cancer in an Adult Setting: A Review of the Literature.

PubMed

Marshall, Steve; Grinyer, Anne; Limmer, Mark

2018-02-13

The purpose of this review is to explore the literature on the experience of adolescents and young adults (AYAs) having cancer treatment in an adult setting, rather than on a specialist adolescent cancer unit. The integrative review method was used to explore the current literature. Primary research on the topic was located systematically and then synthesized into a thematic narrative. The experience of AYAs undergoing treatment in an adult setting was generally negative. This can be attributed to three themes: feeling isolated in the adult setting; the lack of empathy from staff working in the adult setting; and the inappropriateness of the adult environment for this age group. As many AYAs with cancer will continue to have treatment in adult settings, staff working in this environment should be aware of the negative experience of this cohort and the impact this can have on a vulnerable group of patients. Staff could consider simple ways of improving the AYA experience, such as connecting AYA patients with their peers to reduce isolation; adapting their approach to take account of the unique emotional needs of this age group; and considering ways of making the environment more welcoming and age-appropriate.

The Adolescent and Young Adult with Cancer: A Developmental Life Course Perspective.

PubMed

Docherty, Sharron L; Kayle, Mariam; Maslow, Gary R; Santacroce, Sheila Judge

2015-08-01

Using a Life Course Health Development framework, this article summarizes what is known about the impact of cancer and its treatment on the biopsychosocial world of the adolescent and young adult. Published peer reviewed literature, web-based resources, and cancer-related professional organizations' resources. Adolescents and young adults with cancer, between 15 and 29 years of age, have emerged as a distinct group requiring specialized care. The demands of cancer and its treatment are often directly counter to the developmental needs of this age group and often alter those life course experiences that contribute to resilience, thriving, and flourishing. Providing high-quality care to this age group requires a depth of understanding of the complexity of factors that merge to influence the developmental life course. Copyright © 2015 Elsevier Inc. All rights reserved.

Interventions for improving communication with children and adolescents about their cancer.

PubMed

Scott, J T; Harmsen, M; Prictor, M J; Sowden, A J; Watt, I

2003-01-01

Communication with children and adolescents with cancer about their disease and treatment and the implications of these is an important aspect of good quality care. It is often poorly performed in practice. Various interventions have been developed that aim to enhance communication involving children or adolescents with cancer. To examine the effects of interventions to enhance communication with children and/or adolescents about their cancer, its treatment and their implications. We searched the following sources: Cochrane Central Register of Controlled Trials (CENTRAL), The Cochrane Library, Issue 1 2003; MEDLINE (1966 to January week 2 2003); EMBASE (1985 to 2003 week 4); CINAHL (1982 to December week 4 2002); Dissertation Abstracts (1861 to January 2003); ERIC (1966 to January 2003); PsycINFO (1985 to January week 4 2003); Sociological Abstracts (1963 to January 2003).For the initial (2001) publication of this review we also searched the following databases: PsycLIT; Cancerlit;; Sociofile; Health Management Information Consortium; ASSIA; LISA; PAIS; Information Science Abstracts; JICST; Pascal; Linguistics and Language Behavior Abstracts; Mental Health Abstracts; AMED; MANTIS. We also searched the bibliographies of studies assessed for inclusion, and contacted experts in the field. Randomised and non-randomised controlled trials and before and after studies that evaluated the effects of interventions to enhance communication with children and/or adolescents about their cancer, treatment and related issues. Data relating to the interventions, populations and outcomes studied and the design and methodological quality of included studies were extracted by one reviewer and checked by another reviewer. A narrative summary of the results is presented. Nine studies met the criteria for inclusion. They were diverse in terms of the interventions evaluated, study designs used, types of people who participated and the outcomes measured. One study of a computer

Risky Sexual Behavior in Adolescent Survivors of Childhood Cancer: A Report from the Childhood Cancer Survivor Study

PubMed Central

Klosky, James L.; Foster, Rebecca H.; Li, Zhenghong; Peasant, Courtney; Howell, Carrie; Mertens, Ann C.; Robison, Leslie L.; Ness, Kirsten K.

2014-01-01

Objective To identify correlates of risky sexual behavior among adolescents surviving childhood cancer. Methods The Child Health and Illness Profile - Adolescent Edition (CHIP-AE) was completed by 307 survivors of childhood cancer aged 15–20 years (M age at diagnosis 1.53 years; range 0–3.76). Univariate analyses were performed using Chi-square and Fischer’s exact tests, and multivariable logistic regression models were used to calculate odds ratios (OR) and 95% confidence intervals for risky sexual behaviors. Results Diagnosis of central nervous system cancer (OR =.13, 95% CI: .02–.96, p<.05), no history of beer/wine consumption (OR =.20, CI: .06–.68, p =.01), and fewer negative peer influences (OR =.28, CI: .09–.84, p =.02) associated with decreased likelihood of sexual intercourse. Good psychological health (scores ≥ −1.5 SD on the CHIP-AE Emotional Discomfort scale) associated with decreased risk of early intercourse (OR =.19, CI: .05–.77, p= .02), whereas high parental education (≥ college degree) associated with decreased risk of multiple lifetime sexual partners (OR =.25, CI: .09–.72, p =.01). Increased time from diagnosis (OR =.27, CI: .10–.78, p = .02) and psychological health (OR =.09, CI: .02–.36, p < .01) associated with decreased risk of unprotected sex at last intercourse, whereas high parent education associated with increased risk (OR = 4.27, CI: 1.46–12.52, p =.01). Conclusions Risky sexual behavior in adolescents surviving childhood cancer is associated with cancer type, time since diagnosis, psychological health, alcohol use, and peer influences. Consideration of these factors may provide direction for future interventions designed to reduce adolescent sexual risk-taking. PMID:24364376

Experiences of adolescents living with cancer: A descriptive qualitative study.

PubMed

Ang, Sin Hui; Koh, Serena Siew Lin; Lee, Xiu Hua Hideka Tamamura; Shorey, Shefaly

2018-01-01

This study aimed to explore the experiences of adolescents from Singapore, aged 10-18 years old, living with cancer and their perceptions on how their psychosocial outcomes can be improved. A descriptive qualitative study design was used. Convenience sampling was used to recruit 10 participants from a pediatric oncology ward in a Singapore hospital. Individual semi-structured interviews were conducted. Thematic analysis was used to analyze the data. Five major themes emerged: (1) experience of physical symptoms, (2) emotional response to their condition, (3) changes in social dynamics, and (4) falling behind in academics. The psychosocial outcomes of Singaporean adolescents with cancer could be improved by thorough pain assessments and creating a more conducive hospital environment.

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

PubMed

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

2011-05-15

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

Options Counseling for the Pregnant Adolescent Patient.

PubMed

Hornberger, Laurie L

2017-09-01

Each year, more than 500 000 girls and young women younger than 20 years become pregnant. It is important for pediatricians to have the ability and the resources in their offices to make a timely pregnancy diagnosis in their adolescent patients and provide them with nonjudgmental pregnancy options counseling. Counseling includes an unbiased discussion of the adolescent's legal options to either continue or terminate her pregnancy, supporting the adolescent in the decision-making process, and referring the adolescent to appropriate resources and services. Pediatricians who choose not to provide such discussions should promptly refer pregnant adolescent patients to a health care professional who will offer developmentally appropriate pregnancy options counseling. This approach to pregnancy options counseling has not changed since the original 1989 American Academy of Pediatrics statement on this issue. Copyright © 2017 by the American Academy of Pediatrics.

Counseling About Skin Cancer Prevention Among Adolescents: What Do Parents Receive From Health Care Providers?

PubMed

McRee, Annie-Laurie; Mays, Darren; Kornides, Melanie L; Gilkey, Melissa B

2017-10-01

Adolescence is a high-risk period for ultraviolet radiation exposure, a primary cause of skin cancer later in life. We sought to characterize receipt of health care provider-delivered counseling about skin cancer prevention (SCP) among parents of adolescents. In 2016, we conducted an online survey with a national sample of parents of adolescents aged 11-17 years (n = 1,253). Multivariable logistic regression assessed correlates of receiving counseling from a health care provider about any of the six skin cancer prevention (SCP) topics. Only half (49%) of parents recalled discussing any SCP topic with their child's provider; the prevalence was highest for sunscreen (39%) and lowest for indoor tanning (3%). Parents had greater odds of receiving counseling if they had a child with more sun-reactive skin (odds ratio [OR] = 1.53); a family history of skin cancer (OR = 1.38); or a higher quality relationship with the provider (OR = 1.47; all p < .05). Greater attention to SCP counseling is needed, especially for exposures such as indoor tanning that remain prevalent among adolescents but are rarely addressed in clinical encounters. Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Opioid addiction and misuse in adult and adolescent patients with cancer.

PubMed

Pinkerton, Ross; Hardy, Janet R

2017-06-01

In the context of a therapeutic opioid epidemic, particularly in the USA, where increasingly stringent screening for 'at risk' individuals and close monitoring of opioid prescription and use is strongly recommended, the issue of misuse within the cancer population must be addressed. Most patients with advanced cancer will have pain requiring opioid therapy at some stage during their disease course. In the majority, this will provide good pain relief with no short- or longer-term adverse sequelae. A subset will present with substance misuse issues that will influence management and prescribing practice. The potential ethical issues of limiting effective analgesia on the basis of addiction risk or history must be acknowledged. Both a judgemental or 'relaxed' approach to such patients is problematic. Ignoring the situation will not be in the patient's best interest, but an undue focus on this aspect may damage therapeutic relationships with clinicians and adversely affect a holistic approach to care. Clinical practitioners must be aware of the risk factors for opioid misuse and in patients who are not under palliative care consider screening prior to commencing opioids. Clinicians must be able to manage and monitor those identified as having an opioid misuse problem. © 2017 Royal Australasian College of Physicians.

Fruit and vegetable consumption in adolescence and early adulthood and risk of breast cancer: population based cohort study.

PubMed

Farvid, Maryam S; Chen, Wendy Y; Michels, Karin B; Cho, Eunyoung; Willett, Walter C; Eliassen, A Heather

2016-05-11

To evaluate the association between fruit and vegetable intake during adolescence and early adulthood and risk of breast cancer. Prospective cohort study. Health professionals in the United States. 90 476 premenopausal women aged 27-44 from the Nurses' Health Study II who completed a questionnaire on diet in 1991 as well as 44 223 of those women who completed a questionnaire about their diet during adolescence in 1998. Incident cases of invasive breast cancer, identified through self report and confirmed by pathology report. There were 3235 cases of invasive breast cancer during follow-up to 2013. Of these, 1347 cases were among women who completed a questionnaire about their diet during adolescence (ages 13-18). Total fruit consumption during adolescence was associated with a lower risk of breast cancer. The hazard ratio was 0.75 (95% confidence interval 0.62 to 0.90; P=0.01 for trend) for the highest (median intake 2.9 servings/day) versus the lowest (median intake 0.5 serving/day) fifth of intake. The association for fruit intake during adolescence was independent of adult fruit intake. There was no association between risk and total fruit intake in early adulthood and total vegetable intake in either adolescence or early adulthood. Higher early adulthood intake of fruits and vegetables rich in α carotene was associated with lower risk of premenopausal breast cancer. The hazard ratio was 0.82 (0.70 to 0.96) for the highest fifth (median intake 0.5 serving/day) versus the lowest fifth (median intake 0.03 serving/day) intake. The association with adolescent fruit intake was stronger for both estrogen and progesterone receptor negative cancers than estrogen and progesterone receptor positive cancers (P=0.02 for heterogeneity). For individual fruits and vegetables, greater consumption of apple, banana, and grapes during adolescence and oranges and kale during early adulthood was significantly associated with a reduced risk of breast cancer. Fruit juice intake

Adolescents and young adults with cancer: aspects of adherence - a questionnaire study.

PubMed

Kleinke, Anne Marie; Classen, Carl Friedrich

2018-01-01

For adolescents and young adults (AYAs), a cancer diagnosis represents an extraordinary strike in a vulnerable phase of life. They have special needs that the medical system has to take into consideration, and they exhibit a lower degree of therapy adherence than both older and younger patients. The purpose of this study was first to analyze the adherence of AYAs with cancer compared to a group of older patients and, second, to determine correlated parameters, with focus on the psychosocial interaction between physicians and patients. In 2012, a complete 1 year cohort of patients reported, by use of a questionnaire, to the Rostock clinical cancer registry, and a group of older patients were invited to answer a multi-item set of questionnaires on a volunteer basis, leading to a population-based cross-sectional analysis. This included a bias due to non-answering which is unavoidable in such a setting. The questionnaire consisted of well-established standard questionnaires, a questionnaire on adherence that has just recently been published, and a self-written questionnaire focusing on patient-physician relationship. The responses were analyzed for our current study. Gender, religion, education, age, anxiety, family atmosphere, or physician-patient relationship were not significantly correlated to adherence in AYAs. However, markedly more AYAs, as compared to the older patients group, considered breaking off therapy and reported suboptimal communication with the physicians. Only the perceived physical illness could be identified as a factor related to adherence among the AYA group. Our findings confirm the need for more focused approaches to serve the special needs of AYAs, with particular attention on specific items that showed up discriminating AYAs from older patients, that is, Internet use and communication with physicians. Here, further research is needed to examine adherence to specific treatment protocols.

The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer.

PubMed

Murphy, Devin; Klosky, James L; Reed, Damon R; Termuhlen, Amanda M; Shannon, Susan V; Quinn, Gwendolyn P

2015-08-01

Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health-related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow-up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care. © 2015 American Cancer Society.

Effects of supportive-educative program on quality of life of adolescents living with a parent with cancer

PubMed Central

Azarbarzin, Mehrdad; Malekian, Azadeh; Taleghani, Fariba

2015-01-01

Background: Cancer has significant traumatic effects on the family members of the patients, particularly in Asia's tightly knitted families. Research evidence suggests a debilitating impact of cancer on the quality of life of the afflicted individuals, their spouses, and their families. Since a few studies have been carried out on the quality of life of adolescents living with parents diagnosed with cancer, especially in Iran, the research team decided to evaluate the quality of life of them and also investigate the effects of supportive-educative program on it. Materials and Methods: The present quasi-experimental, one-group study had a pre-test–post-test design and was performed in Esfahan in 2014. The sample of this study consisted of 30 adolescents. The data gathering tool was the short form of quality of life questionnaire (SF-36). Data were analyzed by descriptive statistics and paired sample t-test. P-value of 0.05 was considered significant. Results: The paired sample t-test showed that before and after presenting the program, there were significant statistical differences in some aspects of quality of life, such as physical functioning (P = 0.01), energy/fatigue (P < 0.0001), emotional well-being (P < 0.0001), social functioning (P = 0.001), pain (P < 0.0001), and general health (P = 0.01). Conclusions: This research showed that supportive-educative program can enhance some aspects of quality of life. Therefore, nurses and other health professionals can use this scheme or similar programs for helping adolescents living with a parent with cancer. PMID:26457095

Do negative emotions expressed during follow-up consultations with adolescent survivors of childhood cancer reflect late effects?

PubMed

Mellblom, Anneli V; Ruud, Ellen; Loge, Jon Håvard; Lie, Hanne C

2017-11-01

To explore whether negative emotions expressed by adolescent cancer survivors during follow-up consultations were associated with potential late effects (persisting disease or treatment-related health problems). We video-recorded 66 follow-up consultations between 10 pediatricians and 66 adolescent survivors of leukemia, lymphoma or stem-cell transplantations. In transcripts of the recordings, we identified utterances coded as both 1) expressions of negative emotions (VR-CoDES), and 2) late effect-related discussions. Principles of thematic content analysis were used to investigate associations between the two. Of the 66 video-recorded consultations, 22 consultations contained 56 (49%) utterances coded as both emotional concerns and discussions of potential late effects. Negative emotions were most commonly associated with late effects such as fatigue ("I'm struggling with not having energy"), psychosocial distress ("When I touch this (scar) I become nauseous"), pain ("I'm wondering how long I am going to have this pain?"), and treatment-related effects on physical appearance ("Am I growing?"). Negative emotions expressed by adolescent cancer survivors during follow-up consultations were frequently associated with potential late effects. These late effects were not the medically most serious ones, but reflected issues affecting the adolescents' daily life. Eliciting and exploring patients' emotional concerns serve as means to obtain clinically relevant information regarding potential late effect and to provide emotional support. Copyright © 2017 Elsevier B.V. All rights reserved.

Provider Influences on Sperm Banking Outcomes among Adolescent Males Newly Diagnosed with Cancer

PubMed Central

Klosky, James L.; Anderson, L. Elizabeth; Russell, Kathryn M.; Huang, Lu; Zhang, Hui; Schover, Leslie R.; Simmons, Jessica L.; Kutteh, William H.

2017-01-01

Purpose To examine provider communication and sociodemographic factors which associate with sperm banking outcomes in at-risk adolescents newly diagnosed with cancer. Methods A prospective single group quasi-experimental study design was utilized to test the contributions of provider factors on sperm banking outcomes. Medical providers (N=52, 86.5% oncologists) and 99 of their at-risk adolescent patients from eight leading pediatric oncology centers in North America completed questionnaires querying provider factors and patient sperm banking outcomes. Logistic regression with single covariates was utilized to test each provider factor as a potential correlate of the two binary sperm banking study outcomes (collection attempt/no attempt and successful sperm bank/no bank). Multi-covariate logistic regression was used to calculate odds ratios (OR) and 95% confidence intervals (CIs) for specified banking outcomes. Results Fertility referral (OR=9.01, 95% CI=2.54–31.90, p<.001) and provider comfort/skills in negotiating barriers to sperm banking with families (OR=1.94, 95% CI=1.03–3.63, p<0.04) were associated with collection attempts. Adolescents who were referred for a specialized fertility consultation were also almost 5 times more likely to successfully bank (OR=4.96, 95% CI=1.54–16.00, p<.01) relative to those who were not. Conclusions Provider training in communicating/managing adolescents and their families about sperm banking, and increasing utilization of fertility preservation referrals, should increase the proportion of at-risk males preserving fertility prior to treatment initiation. Title Registration Clinicaltrials.gov NCT01152268 PMID:27998702

"There is still so much ahead of us"-family functioning in families of palliative cancer patients.

PubMed

Kühne, Franziska; Krattenmacher, Thomas; Bergelt, Corinna; Beierlein, Volker; Herzog, Wolfgang; V Klitzing, Kai; Weschenfelder-Stachwitz, Heike; Romer, Georg; Möller, Birgit

2013-06-01

Adopting a systems approach, parental cancer has its impact on patients, spouses, and dependent children. The purpose of the current study was to examine family functioning dependent on parental disease stage and on family member perspective in families of cancer patients with adolescent children. The cross-sectional study was conducted within a German multisite research project of families before their first child-centered counseling encounter. The sample comprised individuals nested within N = 169 families. Analyses performed included analysis of covariance (ANCOVA) and intraclass correlation. Open answers were analyzed following quantitative content analysis procedures. Between 15% and 36% of family members reported dysfunctional general functioning scores. Parents indicated more dysfunctional scores on the Family Assessment Device scale Roles, and adolescents more dysfunctional Communication scores. Regarding assessment of family functioning, there was higher agreement in families with parents in a palliative situation. For adolescents with parents in palliation, incidents because of the disease tend to become more dominant, and spending time with the family tends to become even more important. As our study pointed out, parental cancer, and especially parental palliative disease, is associated with both perceived critical and positive aspects in family functioning. Supporting families in these concerns as well as encouraging perceptions of positive aspects are important components of psycho-oncological interventions for families with dependent children. PsycINFO Database Record (c) 2013 APA, all rights reserved.

Factors influencing the documentation of fertility-related discussions for adolescents and young adults with cancer.

PubMed

Skaczkowski, G; White, V; Thompson, K; Bibby, H; Coory, M; Pinkerton, R; Nicholls, W; Orme, L M; Conyers, R; Phillips, M B; Osborn, M; Harrup, R; Anazodo, A

2018-06-01

A cancer diagnosis and treatment may have significant implications for a young patient's future fertility. Documentation of fertility-related discussions and actions is crucial to providing the best follow-up care, which may occur for many years post-treatment. This study examined the rate of medical record documentation of fertility-related discussions and fertility preservation (FP) procedures for adolescents and young adults (AYAs) with cancer in Australia. A retrospective review of medical records for 941 patients in all six Australian states. Patients were identified through population-based cancer registries (four states) and hospital admission lists (two states). Trained data collectors extracted information from medical records using a comprehensive data collection survey. Records were reviewed for AYA patients (aged 15-24 years at diagnosis), diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, central nervous system (CNS) tumours, soft tissue sarcomas (STS), primary bone cancer or Ewing's family tumours between 2007 and 2012. 47.2% of patients had a documented fertility discussion and 35.9% had a documented FP procedure. Fertility-related documentation was less likely for female patients, those with a CNS or STS diagnosis and those receiving high-risk treatments. In multivariable models, adult hospitals with an AYA focus were more likely to document fertility discussions (odds ratio[OR] = 1.60; 95%CI = 1.08-2.37) and FP procedures (OR = 1.74; 95%CI = 1.17-2.57) than adult hospitals with no AYA services. These data provide the first national, population-based estimates of fertility documentation for AYA cancer patients in Australia. Documentation of fertility-related discussions was poor, with higher rates observed in hospitals with greater experience of treating AYA patients. Copyright © 2018 Elsevier Ltd. All rights reserved.

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.

[Life style and occupational factors and prevention of second primary cancers after childhood and adolescent cancer: Current state of knowledge].

PubMed

Duval, Sarah; Carretier, Julien; Boyle, Helen; Philip, Thierry; Berger, Claire; Marec-Bérard, Perrine; Fervers, Béatrice

2015-01-01

Survival of children, adolescents and young adults treated for cancer increased with improved treatments. But there is still an increased risk of second primary cancer (SPC) in the long term compared to the population of the same age, especially related to treatments. A reflection on the follow-up of this population and the prevention of SPC is an important issue. To perform a synthesis of the available literature on SCP risk factors, related risk behaviors, occupational exposures and prevention strategies. Literature search on PubMed from the following equation: "cancer [Tiab] AND young adult [Tiab] or teen [Tiab] or childhood [Tiab] AND prevention [Tiab] AND survivors [Mesh term]". Twenty-seven articles were included in this synthesis. Children, adolescents and young adults have similar risk behaviors than those of their peers regarding tobacco, diet and sun exposure; however, they have lower physical activity. There are few studies on prevention strategies focused on this population. Results of available studies remain inconclusive. No publication was found in relation to occupational exposure and risk of second cancer. Children, adolescents and young adults treated for cancer are a population at risk and require long-term follow-up and the implementation of effective prevention strategies tailored to this population. Copyright © 2015 Société Française du Cancer. Published by Elsevier Masson SAS. All rights reserved.

Marine-Lenhart syndrome in two adolescents, including one with thyroid cancer: a case series and review of the literature.

PubMed

Sharma, Animesh

2017-11-27

The coexistence of functional thyroid nodules and Graves' disease (GD) is a rare condition known as Marine-Lenhart syndrome. Thyroid cancer has been described in several adults, but never in children, with Marine-Lenhart syndrome. This paper discusses the challenges in diagnosis and the unique management of this condition in children, in the context of extant literature. In this case report, two adolescent female patients with Marine-Lenhart syndrome, aged 15 and 16 years, exhibited biochemical evidence of hyperthyroidism, and were found to have unilateral hyperfunctioning thyroid nodules via thyroid scintigraphy. Additionally, both patients showed elevated thyroid-stimulating immunoglobulins (TSI) and increased glandular activity, confirming background GD. Notably, one patient was also diagnosed with intranodular thyroid cancer upon preoperative examination. Both patients were treated via surgical resection. Summary and outlook: Diagnosis of Marine-Lenhart syndrome can be made in patients with functional thyroid nodules and increased glandular activity on thyroid scintigraphy. Standard doses of radioiodine ablation are not effective in the majority of patients and should be avoided due to the increased risk for thyroid cancer, making thyroidectomy the preferred treatment.

Dietary habits in adolescence and midlife and risk of breast cancer in older women

PubMed Central

Torfadottir, Johanna E.; Valdimarsdottir, Unnur A.; Adami, Hans-Olov; Aspelund, Thor; Tryggvadottir, Laufey; Thordardottir, Marianna; Birgisdottir, Bryndis E.; Harris, Tamara B.; Launer, Lenore J.; Gudnason, Vilmundur; Steingrimsdottir, Laufey

2018-01-01

Recent studies indicate that lifestyle factors in early life affect breast cancer risk. We therefore explored the association of high consumption of meat, milk, and whole grain products in adolescence and midlife, on breast cancer risk. We used data from the population based AGES-Reykjavik cohort (2002–2006), where 3,326 women with a mean age of 77 years (SD 6.0) participated. For food items and principal component derived dietary patterns we used Cox proportional models to calculate multivariate hazard ratios (HR) with 95% confidence intervals (95% CI). During a mean follow-up of 8.8 years, 97 women were diagnosed with breast cancer. For both adolescence and midlife, daily consumption of rye bread was positively associated with breast cancer (HR 1.7, 95% CI 1.1–2.6 and HR 1.8, 95% CI 1.1–2.9, respectively). In contrast, persistent high consumption of oatmeal was negatively associated with breast cancer (0.4, 95% CI 0.2–0.9). No association was found for other food items or dietary patterns that included rye bread. High rye bread consumption in adolescence and midlife may increase risk of late-life breast cancer whilst persistent consumption of oatmeal may reduce the risk. PMID:29847592

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

PubMed Central

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

2013-01-01

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

Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study.

PubMed

Wettergren, Lena; Kent, Erin E; Mitchell, Sandra A; Zebrack, Brad; Lynch, Charles F; Rubenstein, Mara B; Keegan, Theresa H M; Wu, Xiao-Cheng; Parsons, Helen M; Smith, Ashley Wilder

2017-10-01

This cohort study examined the impact of cancer on sexual function and intimate relationships in adolescents and young adults (AYAs). We also explored factors predicting an increased likelihood that cancer had negatively affected these outcomes. Participants (n = 465, ages 15-39) in the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study completed two surveys approximately 1 and 2 years post-cancer diagnosis. We used multivariable logistic regression to determine factors negatively affected by perceptions of sexual function at 2 years post-diagnosis. Forty-nine percent of AYAs reported negative effects on sexual function at 1 year post-cancer diagnosis and 70% of those persisted in their negative perceptions 2 years after diagnosis. Those reporting a negative impact at 2 years were more likely to be 25 years or older (OR, 2.53; 95% CI, 1.44-4.42), currently not raising children (OR, 1.81; 95% CI, 1.06-3.08), experiencing fatigue (OR, 0.99; 95% CI, 0.975-0.998) and more likely to report that their diagnosis has had a negative effect on physical appearance (OR, 3.08; 95% CI, 1.97-4.81). Clinical factors and mental health were not significant predictors of negative effects on sexual function. Many AYAs diagnosed with cancer experience a persistent negative impact on sexual life up to 2 years following diagnosis. The findings underscore the need to develop routine protocols to assess sexual function in AYAs with cancer and to provide comprehensive management in the clinical setting. Copyright © 2016 John Wiley & Sons, Ltd. Copyright © 2016 John Wiley & Sons, Ltd.

Pregnancy outcomes in female childhood and adolescent cancer survivors: a linked cancer-birth registry analysis.

PubMed

Mueller, Beth A; Chow, Eric J; Kamineni, Aruna; Daling, Janet R; Fraser, Alison; Wiggins, Charles L; Mineau, Geraldine P; Hamre, Merlin R; Severson, Richard K; Drews-Botsch, Carolyn

2009-10-01

To compare birth outcomes among female survivors of childhood and adolescent cancer who subsequently bear children, relative to those of women without a history of cancer. Retrospective cohort study. Four US regions. Cancer registries identified girls younger than 20 years who were diagnosed as having cancer from 1973 through 2000. Linked birth records identified the first live births after diagnosis (n = 1898). Comparison subjects were selected from birth records (n = 14 278). Survivors of genital tract carcinomas underwent separate analysis. Cancer diagnosis at younger than 20 years. Infant low birth weight, preterm delivery, sex ratio, malformations, mortality, and delivery method, and maternal diabetes, anemia, and preeclampsia. Infants born to childhood cancer survivors were more likely to be preterm (relative risk [RR], 1.54; 95% confidence interval [CI], 1.30-1.83) and to weigh less than 2500 g (1.31; 1.10-1.57). For the offspring of genital tract carcinoma survivors, RRs were 1.33 (95% CI, 1.13-1.56) and 1.29 (1.10-1.53), respectively. There were no increased risks of malformations, infant death, or altered sex ratio, suggesting no increased germ cell mutagenicity. In exploratory analysis, bone cancer survivors had an increased risk of diabetes (RR, 4.92; 95% CI, 1.60-15.13), and anemia was more common among brain tumor survivors (3.05; 1.16-7.98) and childhood cancer survivors whose initial treatment was chemotherapy only (2.45; 1.16-5.17). Infants born to female survivors of childhood and adolescent cancer were not at increased risk of malformations or death. Increased occurrence of preterm delivery and low birth weight suggest that close monitoring is warranted. Increased diabetes and anemia among subgroups have not been reported, suggesting areas for study.

Development and testing of a multidimensional iPhone pain assessment application for adolescents with cancer.

PubMed

Stinson, Jennifer N; Jibb, Lindsay A; Nguyen, Cynthia; Nathan, Paul C; Maloney, Anne Marie; Dupuis, L Lee; Gerstle, J Ted; Alman, Benjamin; Hopyan, Sevan; Strahlendorf, Caron; Portwine, Carol; Johnston, Donna L; Orr, Mike

2013-03-08

Pain is one of the most common and distressing symptoms reported by adolescents with cancer. Despite advancements in pain assessment and management research, pain due to cancer and/or its treatments continues to be poorly managed. Our research group has developed a native iPhone application (app) called Pain Squad to tackle the problem of poorly managed pain in the adolescent with cancer group. The app functions as an electronic pain diary and is unique in its ability to collect data on pain intensity, duration, location, and the impact pain has on an adolescent's life (ie, relationships, school work, sleep, mood). It also evaluates medications and other physical and psychological pain management strategies used. Users are prompted twice daily at configurable times to complete 20 questions characterizing their pain and the app transmits results to a database for aggregate reporting through a Web interface. Each diary entry represents a pain case filed by an adolescent with cancer and a reward system (ie, moving up through law-enforcement team ranks, built-in videotaped acknowledgements from fictitious officers) encourages consistent use of the diary. Our objective was to design, develop, and test the usability, feasibility, compliance, and satisfaction of a game-based smartphone pain assessment tool for adolescents with cancer. We used both low- and high-fidelity qualitative usability testing with qualitative semi-structured, audio-taped interviews and iterative cycles to design and refine the iPhone based Pain Squad app. Qualitative thematic analysis of interviews using constant comparative methodology captured emergent themes related to app usability. Content validity was assessed using question importance-rating surveys completed by participants. Compliance and satisfaction data were collected following a 2-week feasibility trial where users were alarmed to record their pain twice daily on the app. Thematic analysis of usability interviews showed the app to be

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.

Current understanding of decision-making in adolescents with cancer: A narrative systematic review

PubMed Central

Day, Emma; Jones, Louise; Langner, Richard; Bluebond-Langner, Myra

2016-01-01

Background: Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance. Aims: To identify recent empirical research on decision-making regarding care and treatment in adolescent cancer: (1) to synthesise evidence to define the role of adolescents, parents and healthcare professionals in the decision-making process and (2) to identify gaps in research. Design: A narrative systematic review of qualitative, quantitative and mixed-methods research. We adopted a textual approach to synthesis, using a theoretical framework of interactionism to interpret findings. Data Sources: The databases MEDLINE, PsycINFO, SCOPUS, EMBASE and CINHAL were searched from 2001 through May 2015 for publications on decision-making for adolescents (13–19 years) with cancer. Results: Twenty-eight articles were identified. Adolescents and parents initially find it difficult to participate in decision-making due to a lack of options in the face of protocol-driven care. Parent and adolescent preferences for information and response to loss of control vary between individuals and over time. No studies indicate parental or adolescent preference for a high degree of independence in decision-making. Conclusion: Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory. PMID:27160700

[Trends of cancer mortality rates in children and adolescents by level of marginalization in Mexico (1990-2009)].

PubMed

Escamilla-Santiago, Ricardo Antonio; Narro-Robles, José; Fajardo-Gutiérrez, Arturo; Rascón-Pacheco, Ramón Alberto; López-Cervantes, Malaquías

2012-01-01

To determine childhood and adolescent cancer mortality by the level of marginalization in Mexico. We used 1990-2009 death certificates estimating age-standardized rates. We calculated the Average Annual Percent Change (AAPC) using the Joinpoint Regression program available at the National Cancer Institute to assess tendency. Cancer mortality rates increased. AAPC were 0.87% male and 0.96% female children, and for adolescents were: males 1.22% and females 0.63%. The neoplasm pattern in infants was leukemia -central nervous system- lymphomas; and in adolescents it was leukemia -bone and articulation- lymphomas. The increase in cancer mortality corresponded to the high and highest marginated areas of each state. The increase in highly marginated areas may be partly explained by well-documented local registration of deaths. Further studies focusing on survival are required in order to better assess the effectiveness of cancer detection and medical treatment in our country.

Occurrence of breast cancer subtypes in adolescent and young adult women

PubMed Central

2012-01-01

Introduction Breast cancers are increasingly recognized as heterogeneous based on expression of receptors for estrogen (ER), progesterone (PR), and human epidermal growth factor receptor 2 (HER2). Triple-negative tumors (ER-/PR-/HER2-) have been reported to be more common among younger women, but occurrence of the spectrum of breast cancer subtypes in adolescent and young adult (AYA) women aged between 15 and 39 years is otherwise poorly understood. Methods Data regarding all 5,605 AYA breast cancers diagnosed in California during the period 2005 to 2009, including ER and PR status (referred to jointly as hormone receptor (HR) status) and HER2 status, was obtained from the population-based California Cancer Registry. Incidence rates were calculated by subtype (triple-negative; HR+/HER2-; HR+/HER2+; HR-/HER2+), and logistic regression was used to evaluate differences in subtype characteristics by age group. Results AYAs had higher proportions of HR+/HER2+, triple-negative and HR-/HER2+ breast cancer subtypes and higher proportions of patients of non-White race/ethnicity than did older women. AYAs also were more likely to be diagnosed with stage III/IV disease and high-grade tumors than were older women. Rates of HR+/HER2- and triple-negative subtypes in AYAs varied substantially by race/ethnicity. Conclusions The distribution of breast cancer subtypes among AYAs varies from that observed in older women, and varies further by race/ethnicity. Observed subtype distributions may explain the poorer breast cancer survival previously observed among AYAs. PMID:22452927

Diagnosis of Pregnancy and Providing Options Counseling for the Adolescent Patient.

PubMed

Hornberger, Laurie L

2017-09-01

The American Academy of Pediatrics policy statement "Options Counseling for the Pregnant Adolescent Patient" recommends the basic content of the pediatrician's counseling for an adolescent facing a new diagnosis of pregnancy. However, options counseling is just one aspect of what may be one of the more challenging scenarios in the pediatric office. Pediatricians must remain alert to the possibility of pregnancy among their adolescent female patients. When discovering symptoms suggestive of pregnancy, pediatricians must obtain a relevant history, perform diagnostic testing and properly interpret the results, and understand the significance of the results from the patient perspective and reveal them to the patient in a sensitive manner. If the patient is indeed pregnant, the pediatrician, in addition to providing comprehensive options counseling, may need to help recruit adult support for the patient and should offer continued assistance to the adolescent and her family after the office visit. All pediatricians should be aware of the legal aspects of adolescent reproductive care and the resources for pregnant adolescents in their communities. This clinical report presents a more comprehensive view of the evaluation and management of pregnancy in the adolescent patient and a context for options counseling. Copyright © 2017 by the American Academy of Pediatrics.

Psychological Functioning, Post-Traumatic Growth, and Coping in Parents and Siblings of Adolescent Cancer Survivors.

PubMed

Turner-Sack, Andrea M; Menna, Rosanne; Setchell, Sarah R; Maan, Cathy; Cataudella, Danielle

2016-01-01

To examine psychological functioning, post-traumatic growth (PTG), coping, and cancer-related characteristics of adolescent cancer survivors' parents and siblings.
. Descriptive, correlational.
. Children's Hospital of Western Ontario in London, Ontario, Canada.
. Adolescents who finished cancer treatment 2-10 years prior (n = 31), as well as their parents (n = 30) and siblings (n = 18). 
. Participants completed self-report measures of psychological distress, PTG, life satisfaction, coping, and cancer-related characteristics.
. Psychological functioning, PTG, and coping.
. Parents' and siblings' PTG levels were similar to survivors' PTG levels; however, parents reported higher PTG than siblings. Parents who used less avoidant coping, were younger, and had higher life satisfaction experienced less psychological distress. Parents whose survivor children used more active coping reported less psychological distress. Siblings who were older used more active coping, and the longer it had been since their brother or sister was diagnosed, the less avoidant coping they used. 
. Childhood and adolescent cancer affects survivors' siblings and parents in unique ways.
. Relationship to the survivor, use of coping strategies, life satisfaction, and time since diagnosis affect family members' postcancer experiences.

The adolescent and young adult with cancer: state of the art -- psychosocial aspects.

PubMed

Epelman, Claudia L

2013-08-01

Adolescents and young adults with cancer are a distinct subgroup of patients within oncology. From the onset of symptoms until the completion of therapy and beyond, they face physical, psychological, and social challenges that are significantly different from those of adults and children. Survival rates and quality of life outcomes for this population have not improved to the same extent that have for younger and older patients. Improvements in quality of care, overall survival and quality of life for these patients require access to specialized care and participation in clinical trials; assistance with management of disease and treatment effects (especially fertility and body image issues); assessment of psychosocial needs; facilitated transition to off-treatment care; and referral to age-appropriated information and support services. Staff team caring for young patients must be dedicated to working with this age group and should have specialist knowledge and training to support their specific needs.

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.

Development and Testing of a Multidimensional iPhone Pain Assessment Application for Adolescents with Cancer

PubMed Central

Jibb, Lindsay A; Nguyen, Cynthia; Nathan, Paul C; Maloney, Anne Marie; Dupuis, L Lee; Gerstle, J Ted; Alman, Benjamin; Hopyan, Sevan; Strahlendorf, Caron; Portwine, Carol; Johnston, Donna L; Orr, Mike

2013-01-01

Background Pain is one of the most common and distressing symptoms reported by adolescents with cancer. Despite advancements in pain assessment and management research, pain due to cancer and/or its treatments continues to be poorly managed. Our research group has developed a native iPhone application (app) called Pain Squad to tackle the problem of poorly managed pain in the adolescent with cancer group. The app functions as an electronic pain diary and is unique in its ability to collect data on pain intensity, duration, location, and the impact pain has on an adolescent’s life (ie, relationships, school work, sleep, mood). It also evaluates medications and other physical and psychological pain management strategies used. Users are prompted twice daily at configurable times to complete 20 questions characterizing their pain and the app transmits results to a database for aggregate reporting through a Web interface. Each diary entry represents a pain case filed by an adolescent with cancer and a reward system (ie, moving up through law-enforcement team ranks, built-in videotaped acknowledgements from fictitious officers) encourages consistent use of the diary. Objective Our objective was to design, develop, and test the usability, feasibility, compliance, and satisfaction of a game-based smartphone pain assessment tool for adolescents with cancer. Methods We used both low- and high-fidelity qualitative usability testing with qualitative semi-structured, audio-taped interviews and iterative cycles to design and refine the iPhone based Pain Squad app. Qualitative thematic analysis of interviews using constant comparative methodology captured emergent themes related to app usability. Content validity was assessed using question importance-rating surveys completed by participants. Compliance and satisfaction data were collected following a 2-week feasibility trial where users were alarmed to record their pain twice daily on the app. Results Thematic analysis of

'Pizza, patients and points of view': Involving young people in the design of a post registration module entitled the adolescent with cancer.

PubMed

Fallon, Sue; Smith, Joanna; Morgan, Sue; Stoner, Mandy; Austin, Catriona

2008-03-01

Health policy and education directives emphasise the need to involve service users and carers in healthcare, from service design and delivery to the education of healthcare professionals. This paper describes a pilot project aimed at eliciting teenagers and young people with cancer views in relation to the content of a continuing professional development module entitled 'adolescents with cancer'. Seven young people participated in the project. The project design was based on the PARTICIPATION - spice it up [Shephard, C., Treseder, P., 2002. spice it up! Dynamix, Swansea] framework, which aims to ensure effective and appropriate involvement of service users and carers. 'Post-it ideas storm' 'diamond ranking' and 'dot voting' were used to elicit the young people's views. The teenagers and young people could clearly articulate the qualities they felt nurses should have when caring for adolescents with cancer. They also identified topics they felt were important to include in the module, with an understanding of, and using, humour being given the highest priority. This was not originally included in the module timetable but as a direct result of consulting with the young people changes were made to reflect their views.

Interventions for improving communication with children and adolescents about their cancer.

PubMed

Ranmal, Rita; Prictor, Megan; Scott, J Tim

2008-10-08

Communication with children and adolescents with cancer about their disease and treatment and the implications of these is an important aspect of good quality care. It is often poorly performed in practice. Various interventions have been developed that aim to enhance communication involving children or adolescents with cancer. To assess the effects of interventions for improving communication with children and/or adolescents about their cancer, its treatment and their implications, updating the 2003 version of this review. In April 2006 we updated searches of the following sources: CENTRAL (The Cochrane Library, issue 1 2006); MEDLINE (Ovid), (2003 to March week 5 2006); EMBASE (Ovid) (2003 to 2006 week 13); PsycINFO (Ovid) (2003 to March week 5 2006); CINAHL (Ovid) (2003 to March week 5 2006); ERIC (CSA) (earliest to 2006); Sociological Abstracts (CSA) (earliest to 2006); Dissertation Abstracts: (2002 to 6 April 2006).In 2003 we conducted searches of CENTRAL; MEDLINE, EMBASE, PsycINFO, CINAHL, ERIC, Sociological Abstracts and Dissertation Abstracts.For the initial (2001) publication of this review we also searched the following databases: PsycLIT; Cancerlit; Sociofile; Health Management Information Consortium; ASSIA; LISA; PAIS; Information Science Abstracts; JICST; Pascal; Linguistics and Language Behavior Abstracts; Mental Health Abstracts; AMED; MANTIS.We also searched the bibliographies of studies assessed for inclusion, and contacted experts in the field. Randomised and non-randomised controlled trials, and before and after studies, evaluating the effects of interventions for improving communication with children and/or adolescents about their cancer, treatment and related issues. Data relating to the interventions, populations and outcomes studied and the design and methodological quality of included studies were extracted by one review author and checked by another review author. We present a narrative summary of the results. One new study met the criteria

Tethered Cord Syndrome in the Pediatric-Adolescent Gynecologic Patient.

PubMed

Granada, Catalina; Loveless, Meredith; Justice, Tiffany; Moriarty, Thomas; Mutchnick, Ian; Dietrich, Jennifer E; LaJoie, A Scott; Hertweck, Paige

2015-10-01

To describe how pediatric and adolescent patients present to the gynecologist when they have tethered cord syndrome (TCS). We conducted a retrospective chart review on all patients suspected by the gynecologist of having TCS. Single pediatric and adolescent gynecology clinic in a mid-sized city in the midwest. Thirty-two patients, first seen between 2005 and 2012, suspected of having TCS and for whom follow-up information was available. Patient characteristics, including patient history, gynecologic clinical indicators, clinical outcomes, indications for surgery, and postoperative resolution of symptoms, were reviewed. The initial review of systems indicated stress urinary incontinence, back pain, and constipation as common markers in the 32 patients who were suspected of having TCS. All 32 patients underwent lumbar magnetic resonance imaging without contrast and evaluation by neurosurgery. Of the 32 patients with suspected TCS, 18 were later confirmed and 14 were shown to not have TCS. Of the 18 patients with sufficient information to justify a detethering procedure, 14 patients were followed and 93% (13 patients) had complete resolution of symptoms. Final diagnosis in the non-TCS group varied, including vulvovaginitis, enuresis, chronic constipation, and lichen sclerosis. Symptoms improved with the treatment of each primary condition. TCS symptoms overlap with gynecologic conditions; therefore, patients with TCS may present initially to the gynecologist. In pediatric/adolescent patients, TCS should be considered when stress urinary incontinence, back pain, and constipation are discovered in the review of systems. Because possible irreversible ischemic and neurologic changes are believed to be involved, early diagnosis and surgery are crucial for resolution. Providers should be aware of TCS in these pediatric and adolescent settings, because quick assessment may result in complete resolution of a chronic progressive disease. Copyright © 2015 North American

Sociodemographic Disparities in Differentiated Thyroid Cancer Survival Among Adolescents and Young Adults in California

PubMed Central

Grogan, Raymon H.; Parsons, Helen M.; Tao, Li; White, Michael G.; Onel, Kenan; Horn-Ross, Pamela L.

2015-01-01

Background: Few studies have focused on prognostic factors among adolescents and young adults (AYAs) 15 to 39 years of age when diagnosed with differentiated thyroid cancer (DTC). Our study expands upon prior work by including an evaluation of survival among AYA men and by neighborhood socioeconomic status, health insurance, and clinical factors to identify subgroups of young DTC patients at higher risk of mortality. Methods: Data for 16,827 AYA DTC patients diagnosed between 1988 and 2010 were obtained from the California Cancer Registry. Survival, through 2010, by sociodemographic and clinical factors was analyzed using Cox proportional hazards regression. Results: Of the 2.1% of AYAs who died, 16.7% died from thyroid cancer and 21.4% died from a subsequent cancer. In multivariate analyses, older AYAs 35 to 39 year of age (versus 15- to 29-year-olds), men (hazard ratio [HR] 2.77, 95% confidence interval [CI] 1.62–4.72), and AYAs of African American or Hispanic race/ethnicity (versus non-Hispanic whites) had worse thyroid cancer specific survival. In addition, residing in low socioeconomic status neighborhoods (HR 3.11 [CI 1.28–7.56]) and nonmetropolitan areas (HR 5.53 [CI 2.07–14.78]) was associated with worse thyroid cancer–specific survival among AYA men, but not AYA women. Conclusions: Despite the generally good prognosis among AYAs with DTC, we identified subgroups of AYA patients at risk for poor outcomes. Further study of the factors underlying these associations, including possible barriers to receiving high-quality treatment and follow-up care, as well as lifestyle factors, are critical to reducing these disparities. PMID:25778795

Adolescent and adult risk factors for testicular cancer.

PubMed

McGlynn, Katherine A; Trabert, Britton

2012-04-17

The incidence of testicular cancer has been increasing over the past several decades in many developed countries. The reasons for the increases are unknown because the risk factors for the disease are poorly understood. Some research suggests that in utero exposures, or those in early childhood, are likely to be important in determining an individual's level of risk. However, other research suggests that exposure to various factors in adolescence and adulthood is also linked to the development of testicular cancer. Of these, two adult occupational exposures-fire fighting and aircraft maintenance--and one environmental exposure (to organochlorine pesticides) are likely to be associated with increased risk of developing testicular cancer. By contrast, seven of the identified factors--diet, types of physical activity, military service, police work as well as exposure to ionizing radiation, electricity and acrylamide--are unlikely to increase the risk of developing testicular cancer. Finally, seven further exposures--to heat, polyvinyl chloride, nonionizing radiation, heavy metals, agricultural work, pesticides and polychlorinated biphenyls as well as marijuana use--require further study to determine their association with testicular cancer.

Muscle strength and quality of life in patients with childhood cancer at early phase of primary treatment.

PubMed

Deisenroth, Anne; Söntgerath, Regine; Schuster, Anne Judith; von Busch, Christine; Huber, Gerhard; Eckert, Katharina; Kulozik, Andreas E; Wiskemann, Joachim

2016-09-01

Cancer- and treatment-related side effects in patients with childhood cancer may cause limitations in motor performance affecting activities of daily living (ADLs). Data focusing on long-term effects are available, but little is known with regard to the short-term perspective. Therefore, the purpose of this study was to assess muscle strength performance and quality of life (QoL) in children and adolescents with cancer at the beginning of primary treatment. Forty children and adolescents aged 5-18 years (mean: 11.39 ± 4.08 years) with different types of childhood cancer were enrolled. On average 36 ± 20.5 days after diagnosis, strength performance in 7 muscle groups was assessed by handheld dynamometry. KINDL questionnaires were completed to evaluate QoL (children's self-report and parents' report). All parameters were compared with age- and gender-matched reference values. Patients with childhood cancer showed significantly lower strength values in all muscle groups (P < .01) compared with age- and gender-matched controls. Most affected were the lower extremities, with a -57.1% ± 10.4%, median: -59.2%, minimum: -75.4%, maximum: -41.4% percentage deviation in knee flexion from healthy peers. Children themselves and parents assessed total QoL significantly below age- and gender-matched reference values (P < .01). Correlation between elbow flexion and self-reported QoL was detected. Broader correlations were found for the parents' report. Muscle weakness and decreased QoL in children and adolescents seem to persist already at the beginning of anticancer treatment. This underlines the need of counteracting measures, such as exercise intervention programs, starting as early as possible during the treatment process. Efforts on this topic are currently being carried out by our group.

Adolescent Perspectives on Patient-Provider Sexual Health Communication: A Qualitative Study.

PubMed

Hoopes, Andrea J; Benson, Samantha K; Howard, Heather B; Morrison, Diane M; Ko, Linda K; Shafii, Taraneh

2017-10-01

Adolescents in the United States are disproportionately affected by sexually transmitted infections and unintended pregnancy. Adolescent-centered health services may reduce barriers to health care; yet, limited research has focused on adolescents' own perspectives on patient-provider communication during a sexual health visit. Twenty-four adolescents (14-19 years old) seeking care in a public health clinic in Washington State participated in one-on-one qualitative interviews. Interviews explored participants' past experiences with medical providers and their preferences regarding provider characteristics and communication strategies. Interviews revealed that (1) individual patient dynamics and (2) patient-provider interaction dynamics shape the experience during a sexual health visit. Individual patient dynamics included evolving level of maturity, autonomy, and sexual experience. Patient-provider interaction dynamics were shaped by adolescents' perceptions of providers as sources of health information who distribute valued sexual health supplies like contraception and condoms. Participant concerns about provider judgment, power differential, and lack of confidentiality also emerged as important themes. Adolescents demonstrate diverse and evolving needs for sexual health care and interactions with clinicians as they navigate sexual and emotional development.

Patients with Advanced, Rare Sarcoma Respond to Cediranib | Center for Cancer Research

Cancer.gov

Alveolar soft part sarcomas (ASPS) are highly vascular tumors that usually affect adolescents and young adults. Comprising less than one percent of soft tissue sarcomas, ASPS can be cured with surgery. However, its tendency to metastasize and its lack of response to standard soft tissue sarcoma chemotherapy regimens makes ASPS a particularly lethal cancer with a five-year survival rate of 20 percent in patients with metastatic disease who are not candidates for surgery.

Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review.

PubMed

Forcina, Victoria; Vakeesan, Branavan; Paulo, Chelsea; Mitchell, Laura; Bell, Jennifer Ah; Tam, Seline; Wang, Kate; Gupta, Abha A; Lewin, Jeremy

2018-01-01

Although cancer clinical trials (CT) offer opportunities for novel treatments that may lead to improved outcomes, adolescents and young adults (AYA) are less likely to participate in these trials as compared to younger children and older adults. We aimed to identify the perceptions and attitudes toward CT in AYA that influence trial participation. A systematic review of cancer literature was conducted that assessed perceptions and attitudes toward CT enrollment limited to AYA patients (defined as age 15-39). We estimated the frequency of identified themes by pooling identified studies. In total, six original research articles were identified that specifically addressed perceptions or attitudes that influenced CT participation in AYA patients. Three studies were conducted at pediatric centers - one at an AYA unit, one at an adult cancer hospital, and one was registry based. Major themes identified for CT acceptability included: hope for positive clinical affect, altruism, and having autonomy. Potential deterrents included: prolonged hospitalization, worry of side effects, and discomfort with experimentation. Limited information is available with regard to the perceptions and attitudes toward CT acceptability among AYA patients, especially those treated at adult cancer centers, which prevents generalization of data and themes. Future research assessing strategies for understanding and supporting CT decision-making processes among AYA represents a key focus for future funding to improve CT enrollment.

Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients.

PubMed

Booij, Judith C; Zegers, Marieke; Evers, Pauline M P J; Hendriks, Michelle; Delnoij, Diana M J; Rademakers, Jany J D J M

2013-04-23

To develop a Consumer Quality Index (CQI) Cancer Care questionnaire for measuring experiences with hospital care of patients with different types of cancer. We derived quality aspects from focus group discussions, existing questionnaires and literature. We developed an experience questionnaire and sent it to 1,498 Dutch cancer patients. Another questionnaire measuring the importance of the quality aspects was sent to 600 cancer patients. Data were psychometrically analysed. The response to the experience questionnaire was 50 percent. Psychometric analysis revealed 12 reliable scales. Patients rated rapid and adequate referral, rapid start of the treatment after diagnosis, enough information and confidence in the healthcare professionals as most important themes. Hospitals received high scores for skills and cooperation of healthcare professionals and a patient-centered approach by doctors; and low scores for psychosocial guidance and information at completion of the treatment. The CQI Cancer Care questionnaire is a valuable tool for the evaluation of the quality of cancer care from the patient's perspective. Large scale implementation is necessary to determine the discriminatory powers of the questionnaire and may enable healthcare providers to improve the quality of cancer care. Preliminary results indicate that hospitals could improve their psychosocial guidance and information provision.

Interventions for improving communication with children and adolescents about a family member's cancer.

PubMed

Scott, J T; Prictor, M J; Harmsen, M; Broom, A; Entwistle, V; Sowden, A; Watt, I

2003-01-01

A diagnosis of cancer creates multiple problems for affected families, including major changes in living patterns, roles and relationships. It has not been common practice for families and health practitioners to share information with children or adolescents about a family member's cancer, or to allow them to express their feelings about this. In recent years, however, researchers and practitioners have begun to recognise that children and adolescents might appreciate and benefit by being better informed about, and having more opportunity to communicate their responses to, cancer in the family. To examine the effects of different ways of enhancing communication with children and/or adolescents about a family member's cancer and its treatment. We searched the following sources: Cochrane Central Register of Controlled Trials (CENTRAL), The Cochrane Library, Issue 1 2003; MEDLINE (1966 to January week 2 2003); EMBASE (1985 to 2003 week 6); CINAHL (1982 to February Week 1 2003); ERIC (1966 to 23 January 2003); PsycINFO (1985 to February week 1 2003). For the original (1999) version of this review we also searched the following databases: CancerLIT, Health Management Information Consortium, British Nursing Index, IAC Health & Wellness, JICSTE-Plus, Pascal, Linguistics and Language Behavior Abstracts, Mental Health Abstracts, AMED, HUMN, MANTIS and ASSIA. Bibliographies of identified studies were also checked and contact made with experts in the field. Randomised and non-randomised controlled trials, and controlled and uncontrolled before and after studies that evaluated the effects of interventions to enhance communication with children and/or adolescents about a family member's cancer and its treatment. Data on knowledge and understanding, coping, adjustment and wellbeing were extracted by one reviewer and checked by another reviewer. Study quality was assessed using six criteria. A qualitative synthesis of the results is presented. Five studies satisfied the

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

Effect of an educational intervention on Hungarian adolescents' awareness, beliefs and attitudes on the prevention of cervical cancer.

PubMed

Marek, Erika; Dergez, Timea; Rebek-Nagy, Gabor; Szilard, Istvan; Kiss, Istvan; Ember, Istvan; Gocze, Peter; D'Cruz, Gibson

2012-11-06

The alarming national data on the mortality and morbidity rates of cervical cancer as well as the results of a Hungarian survey demonstrating adolescents' low level of understanding of human papillomavirus (HPV) infection and HPV vaccination encouraged the authors to conduct an educational intervention. The aim of this survey was to explore the impact of a brief, HPV-focused program on adolescents' knowledge, beliefs and attitudes. A self-administered anonymous questionnaire was completed by 394 male and female adolescents in September, 2010, in Hungary. Half of the students (48.5%) then had a one-off educational intervention on aspects cervical cancer lasting 45 min lesson, while the rest of the participants, the control group, did not have the educational intervention. Three months following the education, both groups were retested using the same questionnaire. Data were analysed using Statistical Package for the Social Sciences (SPSS). Following the education, significant increase was detected in cervical cancer awareness: causal relationship between HPV and cervical cancer (7.9% → 22.1%, p<0.05), or perception of HPV vaccination (61.3% → 85.9%, p<0.05). Similarly, health-related beliefs have enhanced, such as 'HPV may cause cervical cancer' (64.9% → 81.0%, p<0.05) or 'cervical cancer may be prevented by vaccination' (66.5% → 85.3%, p<0.05). Our data also highlighted that Hungarian adolescents have been practising extremely risky sexual behaviour. Nearly half of the sexually active adolescents had engaged in 'one-night relationship' (41.1%) as well as having sexual intercourse without any contraceptive safety measures (44.3%). In addition to providing adolescents with clear and meaningful information about the implications of a HPV infection and addressing their fears of screening and vaccination, health education should focus on promoting safe sex behaviour by promoting the use of condoms and reducing the number of sexual partners to limit the spread of

Adolescents’ Experiences When Living With a Parent With Cancer: A Qualitative Study

PubMed Central

Azarbarzin, Mehrdad; Malekian, Azadeh; Taleghani, Fariba

2016-01-01

Background: Cancer affects not only the patient but also their entire family, especially adolescents. Adolescents whose parents are ill may manifest their distress through changes in school performance, physical complaints of pain and discomfort, as well as changes in social and interpersonal relations. There has been very little research about the effects of cancer on adolescents in Iran. Objectives: The purpose of this qualitative study was to explore the Iranian adolescents’ experiences when living with a parent with cancer. Patients and Methods: In this research, the descriptive-explorative approach was used. There were a total of 27 participants. Purposeful sampling was used and data collection methods were semi-structured deep interviews. Constant comparative analysis was used to study the data. Results: The findings of this study showed that the main experiences of these adolescents were categorized into seven themes: 1- psychological problems of adolescents; 2- supportive-educative needs; 3- cancer as a two edged sword in family relationships; 4- stages of confrontation with the parent’s cancer; 5- effect of cancer on social dimensions; 6- affective and helpful supportive agents; 7- Need of support for education under special conditions. Conclusions: This research showed that Iranian adolescents had the same experiences as other adolescents in other countries in many aspects yet in some issues, such as religious strategy, they had strong religious beliefs that would help them cope with their parents’ cancer. Also it was shown that we must plan a program in which education and support should be provided to enable adolescents to cope with this detrimental situation with minimal disruption. PMID:26889396

Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time?

PubMed

Husson, Olga; Zebrack, Bradley J; Aguilar, Christine; Hayes-Lattin, Brandon; Cole, Steve

2017-07-15

The objective of the current study was to examine social functioning among adolescents and young adults (AYAs) within the first 2 years after a cancer diagnosis and compare their scores with population norms and identify trajectories of social functioning over time and its correlates. A multicenter, longitudinal study was conducted among 215 AYA patients with cancer aged 14 to 39 years. A total of 141 patients completed a self-report measure of social functioning within the first 4 months of diagnosis and again at 12 months and 24 months later. AYA patients with cancer were found to have significantly worse social functioning scores around the time of diagnosis (52.0 vs 85.1; P<.001), at the 12-month follow-up (73.1 vs 85.1; P<.001), and at the 24-month follow-up (69.2 vs 85.1; P<.001) when compared with population norms. Significant improvements in social functioning from baseline to the 12-month follow-up were observed; however, social functioning levels remained stable thereafter. Among participants, 9% demonstrated consistently high/normal social functioning, 47% demonstrated improved social functioning, 13% were found to have worsening social functioning, and 32% demonstrated consistently low social functioning. AYA patients with cancer who had consistently low social functioning were more often off treatment at the time of follow-up, reported more physical symptoms and higher levels of distress at baseline and follow-up, and perceived less social support at baseline compared with the other 3 groups. Although improved over time, social functioning still was found to be compromised 24 months after the primary diagnosis. Nearly one-third of these patients remain at risk of poor social functioning. Reducing physical symptoms and psychological distress and enhancing social support by interventions during the period after treatment may potentially help these young survivors to better reintegrate into society. Cancer 2017;123:2743-51. © 2017 American Cancer Society

Psychometric properties of instruments used to measure fatigue in children and adolescents with cancer: a systematic review.

PubMed

Tomlinson, Deborah; Hinds, Pamela S; Ethier, Marie-Chantal; Ness, Kirsten K; Zupanec, Sue; Sung, Lillian

2013-01-01

Despite the recognized distressing symptom of fatigue in children with cancer, little information is available to assist in the selection of an instrument to be used to measure fatigue. The objectives of this study were to 1) describe the instruments that have been used to measure cancer-related fatigue in children and adolescents and 2) summarize the psychometric properties of the most commonly used instruments used to measure fatigue in children and adolescents with cancer. Five major electronic databases were systematically searched for studies using a fatigue measurement scale in a population of children or adolescents with cancer. Fatigue scales used in those studies were included in the review. From a total of 1753 articles, 25 were included. We identified two main fatigue measurement instruments used in a pediatric oncology population: 1) the Fatigue Scale-Child/Fatigue Scale-Adolescent and the proxy report versions for parents and staff and 2) the PedsQL™ Multidimensional Fatigue Scale. These two scales show similar attributes with reasonably good internal consistency and responsiveness. Either the Fatigue Scale or PedsQL Multidimensional Fatigue Scale can be incorporated into clinical research. Future research should focus on identifying specific fatigue measures more suited to different purposes such as comparative trials or identification of high-risk groups. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

The physical examination in pediatric and adolescent patients.

PubMed

Lara-Torre, Eduardo

2008-06-01

The initial evaluation and examination of both the pediatric and adolescent patients provides the opportunity for the clinician to establish a relationship that will ensure the successful outcome of the visit. In the younger age group, cooperation of the child before performing an examination should be the focus at the first encounter. This cooperation will enable proper positioning and a systematic approach to examination and documentation of findings. Although the adolescent patients may be older and better able to understand the specifics of the examination, these patients present additional challenges for the examining practitioner.

Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult.

PubMed

Bellizzi, Keith M; Smith, Ashley; Schmidt, Steven; Keegan, Theresa H M; Zebrack, Brad; Lynch, Charles F; Deapen, Dennis; Shnorhavorian, Margarett; Tompkins, Bradley J; Simon, Michael

2012-10-15

The objective of this study was to explore the psychosocial impact of cancer on newly diagnosed adolescent and young adult (AYA) cancer patients. This was a population-based, multicenter study of 523 newly diagnosed AYA survivors (ages 15-39 years) of germ cell cancer (n = 204), non-Hodgkin lymphoma (n = 131), Hodgkin lymphoma (n = 142), acute lymphocytic leukemia (n = 21), or sarcoma (n = 25) from 7 National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) registries. Age at diagnosis was categorized into 3 groups (ages 15-20 years, 21-29 years, and 30-39 years). Respondents (43% response rate), on average (±standard deviation), were aged 29 = 6.7 years, and most patients (80.1%) were not receiving treatment at the time the completed the survey. With modest differences between the age groups, the most prevalent areas of life impacted in a negative way were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. Endorsement of positive life impact items also was evident across the 3 age groups, particularly with regard to relationships, future plans/goals, and health competence. The current results indicated that there will be future need for interventions targeting financial assistance, body image issues, relationships, and helping AYAs to attain their education objectives. Copyright © 2012 American Cancer Society.

Health Status of Adolescent and Young Adult Cancer Survivors

PubMed Central

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

2017-01-01

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

The Mediating Role of Exercise on Relationships Between Fatigue, Sleep Quality, and Quality of Life for Adolescents With Cancer.

PubMed

Wu, Wei-Wen; Jou, Shiann-Tarng; Liang, Shu-Yuan; Tsai, Shao-Yu

2018-02-27

Fatigue and poor sleep are two of the most common and most distressing symptoms for adolescents with cancer. These 2 symptoms concurrently heighten distress, further decreasing quality of life (QoL). The aims of this study were to describe the degree of exercise involvement, fatigue, sleep quality, and QoL among adolescents with cancer and to determine whether exercise mediates the relationships between (a) fatigue and QoL and (b) sleep quality and QoL. A cross-sectional study of 100 participants was conducted. Multiple regression was performed to examine the mediation relationship. Participants in the off-treatment group had a significantly higher degree of exercise involvement, as well as less fatigue, greater sleep quality, and less QoL distress. Exercise partially mediated the adverse effect of fatigue on QoL for adolescents undergoing cancer treatment, accounting for 49.80% of the total variation; exercise partially mediated the adverse effect of poor sleep on QoL for adolescents both in treatment and in survivorship, accounting for 42.06% and 28.71% of the total variations, respectively. Exercise partially mediated the relationship between fatigue and QoL for adolescents in cancer treatment and partially mediated the relationship between sleep quality and QoL both for those in cancer treatment and for those in survivorship. Developing tailored exercise programs based on both treatment status and the degree of fatigue and sleep quality is important. In-service education that enhances nurses' awareness of the importance of exercise in improving adolescents' QoL is recommended.

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

PubMed

Husson, Olga; Zebrack, Bradley J

2017-03-01

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

Small Numbers, Big Challenges: Adolescent and Young Adult Cancer Incidence and Survival in New Zealand.

PubMed

Ballantine, Kirsten R; Watson, Heidi; Macfarlane, Scott; Winstanley, Mark; Corbett, Robin P; Spearing, Ruth; Stevanovic, Vladimir; Yi, Ma; Sullivan, Michael J

2017-06-01

This study was undertaken to determine cancer survival and describe the unique spectrum of cancers diagnosed among New Zealand's adolescents and young adult (AYA) population. Registrations for 1606 15-24 year olds diagnosed with a new primary malignant tumor between 2000 and 2009 were obtained from the New Zealand Cancer Registry and classified according to AYA diagnostic group and subgroup, age, sex, and prioritized ethnicity. Age-standardized incidence rates (IRs) per million person years and 5-year relative survival ratios were calculated. Cancer incidence was 228.6 per million for adolescents aged 15-19 years and 325.7 per million for young adults aged 20-24 years. Overall IRs were consistent across all ethnic groups but there were unique ethnic differences by tumor group including a higher incidence of bone tumors, carcinoma of the gastrointestinal tract, and gonadal germ cell tumors among Maori, a higher incidence of leukemia among Pacific peoples, and a higher incidence of melanoma among non-Maori/non-Pacific peoples. Five-year relative survival for adolescents (75.1%) and AYA overall (80.6%) appeared poorer than had been achieved in other high-income countries. Maori (69.5%) and Pacific (71.3%) AYA had lower 5-year survival compared to non-Maori/non-Pacific peoples (84.2%). The survival disparities observed require further investigation to identify and address the causes of these inferior outcomes. The newly established AYA Cancer Network Aotearoa has been tasked with improving cancer survival and care and ensuring equality of access for New Zealand AYAs with cancer.

Psychosocial needs of ethnic minority, inner-city, pediatric cancer patients.

PubMed

Moody, Karen; Mannix, Margaret M; Furnari, Nicole; Fischer, Judith; Kim, Mimi; Moadel, Alyson

2011-09-01

Limited data are available regarding the psychosocial impact of cancer on families of culturally diverse backgrounds living in medically underserved communities. The unique psychosocial needs of families of children with cancer from an ethnically diverse inner-city population is the focus of this study. The prevalence of psychosocial needs among a multi-cultural, inner-city sample of children and adolescents with cancer and their parents was assessed using a modified version of the Psychosocial Needs Assessment Survey. All patients were recruited from the Children's Hospital at Montefiore located in Bronx, NY, a designated medically underserved community. Seventy-eight percent of parents reported unmet informational needs. The three most commonly endorsed informational needs by parents and children were regarding dietary management of acute side effects, late effects of having cancer and secondary cancer prevention. Less educated parents reported greater unmet supportive, practical, and spiritual needs than those with more education. Fathers had greater informational and practical needs than mothers and younger parents had more practical needs than older parents. Endorsement of spiritual needs was lower for both children and parents compared with supportive, informational, or practical needs. Given the high prevalence of reported unmet informational needs, efforts should be made to provide patients and families with education tailored to their informational needs and level of education. This population may benefit from psychoeducational interventions, including community-based informational and peer support groups. Such interventions may augment efforts to lessen health gaps experienced in this population.

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

PubMed

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

2016-01-01

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

An analysis of risk-taking behavior among adolescent blunt trauma patients.

PubMed

Foley, David S; Draus, John M; Santos, Ariel P; Franklin, Glen A

2009-05-01

The impact of risk-taking behavior among adolescent blunt trauma patients is not fully appreciated. This study examined the relationship between adolescent risk-taking behaviors, the resultant injury severity, and outcome for blunt trauma. Between January 2000 and December 2005, data were collected on adolescent blunt trauma patients (12-18 years) admitted to either a Level I adult trauma center or large urban pediatric hospital. Five groups of risk-taking behavior were examined: ATV riders, drug and alcohol users, unhelmeted motorcyclists, unhelmeted extreme sports participants and unrestrained motor vehicle occupants. Demographic data, mechanism of injury, injury severity, hospital course and outcomes were evaluated for each group. A total of 2030 adolescents were admitted following blunt trauma; 723 adolescents (36%) were engaged in risk-taking behavior at the time of their injury. Most patients were male (68%). Unrestrained MVA occupants were the most frequently encountered risk takers (37%); among this subset, most were unrestrained passengers (74%). Head injuries were frequent (22%) among risk takers. When compared to non-risk-takers, there were no significant age, race, gender, or ISS differences. However, a significantly higher number of positive head CT scans were found among risk-taking adolescents (22%, p < 0.05). Mortality was low (3%). Risk-taking behavior is prevalent among adolescent blunt trauma patients. Improved injury prevention strategies are needed to discourage these behaviors during adolescence.

[Perceptions of adolescents Jalisco campaign on breast cancer].

PubMed

Tapia-Curiel, Amparo; Nuño-Gutiérrez, Bertha Lidia; Flores-Padilla, Luis; Villaseñor-Farías, Martha; López-López, José Luis; Covarrubias-Bermúdez, María de los Ángeles

2015-01-01

Breast cancer campaigns and awareness strategies with limited evidence of their effectiveness in youth. Behavioral model of perception that shows how individuals choose, organize and interpret information. This study shows the perceptions of youth from Jalisco regarding breast cancer campaigns. Cross-sectional qualitative exploratory study based on constructionist and associationist theories of perception. Informed consent interviews with 13 focus groups, 129 men and women between 12 and 19 years old, enrolled students, residents of 6 regions of Jalisco. The sampling consisted in snowball technique. Interviews transcribed and processed with Atlas Ti version 4.1, open coding analysis. 10 campaigns were identified and the perceptions about them showed 3 processes: 1) SELECTION: permeated by the campaign design elements; 2) ORGANIZATION: influenced by pre-structured meanings of the color pink, scope and limitations of the campaigns; and 3) INTERPRETATION: showed judgments about the visibility of breast cancer, accessibility of knowledge and resources, permeability of positive ads and cultural codes and the lack of coverage meeting expectations. A high awareness of breast cancer among teenagers was evident as well as the extensive need of information and services. We recommend creating strategies for formal education about breast cancer during adolescence.

Sequences of talk about emotional concerns in follow-up consultations with adolescent childhood cancer survivors.

PubMed

Mellblom, A V; Korsvold, L; Ruud, E; Lie, H C; Loge, J H; Finset, A

2016-01-01

To explore practices regarding communication about emotional concerns in follow-up consultations with adolescent cancer survivors and pediatrician. Seven video-taped follow-up consultations with adolescent survivors which contained many examples of emotional cues and concern were analyzed according to principles of conversation analysis. During talk about emotional concerns, a task-focused asymmetric pattern of pediatrician questions and patient responses was most often upheld. In a number of cases a gradual build-up of emotional expression from a weak hint to a more explicit expression of emotional concern was observed, often facilitated by the pediatricians. Most often work-up was relatively brief, sometimes with a brief positive reappraisal, but more comprehensive elaboration was also seen. Topic shifts were often abrupt. Pediatricians and patients used some of the same conventions as in everyday conversation during emotional talk in medical encounters. We observed shifts between informal talk and a typical task-focused mode. Conscious attention to such shifts and to the sequential nature of emotional talk could be helpful for doctors in designing their responses to patients' emotional concerns. Our findings may contribute to insight in how clinicians respond to emotional concerns in follow-up consultations and have implications for communication skills training. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Lung cancer in younger patients.

PubMed

Abbasowa, Leda; Madsen, Poul Henning

2016-07-01

Lung cancer remains a leading cause of cancer-related death. The incidence increases with age and the occurrence in young patients is relatively low. The clinicopathological features of lung cancer in younger patients have not been fully explored previously. To assess the age differences in the clinical characteristics of lung cancer, we conducted a retrospective analysis comparing young patients ≤ 65 years of age with an elderly group > 65 years of age. Among 1,232 patients evaluated due to suspicion of lung cancer in our fast-track setting from January-December 2013, 312 newly diagnosed lung cancer patients were included. Patients ≤ 65 years had a significantly higher representation of females (p = 0.0021), more frequent familial cancer aggregation (p = 0.028) and a lower incidence of squamous cell carcinoma (p = 0.0133). When excluding pure carcinoid tumours, a significantly higher proportion of the younger patients presented with advanced stage disease (p = 0.0392). Combined modality therapy was more common in younger patients (p = 0.0009), while chemotherapy appeared less prevalent among the elderly (p = 0.0015). Lung cancer in younger patients comprises a distinct clinicopathological entity with more frequent advanced stage disease and a significantly greater proportion with a family history of cancer. Implementing genetic background assessments and considering lung cancer as a possible diagnosis in younger, symptomatic patients, is of paramount importance. none. The study was approved by the -Danish Data Protection Agency.

Clinical Trial Participation and Time to Treatment Among Adolescents and Young Adults With Cancer: Does Age at Diagnosis or Insurance Make a Difference?

PubMed Central

Parsons, Helen M.; Harlan, Linda C.; Seibel, Nita L.; Stevens, Jennifer L.; Keegan, Theresa H.M.

2011-01-01

Purpose Because adolescent and young adult (AYA) patients with cancer have experienced variable improvement in survival over the past two decades, enhancing the quality and timeliness of cancer care in this population has emerged as a priority area. To identify current trends in AYA care, we examined patterns of clinical trial participation, time to treatment, and provider characteristics in a population-based sample of AYA patients with cancer. Methods Using the National Cancer Institute Patterns of Care Study, we used multivariate logistic regression to evaluate demographic and provider characteristics associated with clinical trial enrollment and time to treatment among 1,358 AYA patients with cancer (age 15 to 39 years) identified through the Surveillance, Epidemiology, and End Results Program. Results In our study, 14% of patients age 15 to 39 years had enrolled onto a clinical trial; participation varied by type of cancer, with the highest participation in those diagnosed with acute lymphoblastic leukemia (37%) and sarcoma (32%). Multivariate analyses demonstrated that uninsured, older patients and those treated by nonpediatric oncologists were less likely to enroll onto clinical trials. Median time from pathologic confirmation to first treatment was 3 days, but this varied by race/ethnicity and cancer site. In multivariate analyses, advanced cancer stage and outpatient treatment alone were associated with longer time from pathologic confirmation to treatment. Conclusion Our study identified factors associated with low clinical trial participation in AYA patients with cancer. These findings support the continued need to improve access to clinical trials and innovative treatments for this population, which may ultimately translate into improved survival. PMID:21931022

Inhalant Use, Abuse, and Dependence among Adolescent Patients: Commonly Comorbid Problems.

ERIC Educational Resources Information Center

Sakai, Joseph T.; Hall, Shannon K.; Mikulich-Gilbertson, Susan K.; Crowley, Thomas J.

2004-01-01

Objective: Little is known about adolescents with DSM-IV-defined inhalant abuse and dependence. The aim of this study was to compare comorbidity among (1) adolescents with inhalant use disorders, (2) adolescents who reported using inhalants without inhalant use disorder, and (3) other adolescent patients drawn from an adolescent drug and alcohol…

Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California.

PubMed

Rajeshuni, Nitya; Johnston, Emily E; Saynina, Olga; Sanders, Lee M; Chamberlain, Lisa J

2017-11-01

Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged <30 years, of minority race, of Hispanic ethnicity, who lived ≤10 miles from a specialty center, and who had a diagnosis of leukemia or lymphoma. Overall, the majority of AYA cancer deaths occurred in a hospital, with a 5-year shift to more in-home deaths that abated after 1995. In-hospital deaths were more common among younger patients, patients of minority race/ethnicities, and those with a leukemia or lymphoma diagnosis. Further study is needed to determine whether these rates and disparities are consistent with patient preferences. Cancer 2017;123:4178-4184. © 2017 American Cancer Society. © 2017 American Cancer Society.

Improving cancer patient care: development of a generic cancer consumer quality index questionnaire for cancer patients

PubMed Central

2013-01-01

Background To develop a Consumer Quality Index (CQI) Cancer Care questionnaire for measuring experiences with hospital care of patients with different types of cancer. Methods We derived quality aspects from focus group discussions, existing questionnaires and literature. We developed an experience questionnaire and sent it to 1,498 Dutch cancer patients. Another questionnaire measuring the importance of the quality aspects was sent to 600 cancer patients. Data were psychometrically analysed. Results The response to the experience questionnaire was 50 percent. Psychometric analysis revealed 12 reliable scales. Patients rated rapid and adequate referral, rapid start of the treatment after diagnosis, enough information and confidence in the healthcare professionals as most important themes. Hospitals received high scores for skills and cooperation of healthcare professionals and a patient-centered approach by doctors; and low scores for psychosocial guidance and information at completion of the treatment. Conclusions The CQI Cancer Care questionnaire is a valuable tool for the evaluation of the quality of cancer care from the patient’s perspective. Large scale implementation is necessary to determine the discriminatory powers of the questionnaire and may enable healthcare providers to improve the quality of cancer care. Preliminary results indicate that hospitals could improve their psychosocial guidance and information provision. PMID:23617741

Training program to raise consciousness among adolescents for protection against skin cancer through performance of skin self examination.

PubMed

Balyaci, Ozüm Erkin; Kostu, Nazan; Temel, Ayla Bayik

2012-01-01

Overexposure to sunlight in childhood and the adolescent period and associated sunburns significantly increase the risk of skin cancer in adulthood. In Turkey, the incidence of skin cancer in the general population is 0.8%. The incidence is 0.6% and the mortality rate is 0.4% for men, while these rates are 1.0% and 0.7%, respectively, for women. If skin cancer is found early, its treatment is facilitated. Therefore, personal skin examination is important for early diagnosis. Our aim was to determine the effects of training for raising consciousness among adolescents to protect against skin cancer by influencing skin self examination behavior. This quasi experimental intervention study was conducted between February and April 2012 in Izmir. The study population consisted of students attending 6th, 7th and 8th classes of a primary school (n:302). No sampling was performed. Data were collected with a form developed by the researchers based on the literature. The first part of form is aimed to determine demographic characteristics of adolescents (3 questions) and their risk status of skin cancer (6 questions). The second part was prepared for skin cancer risks of adolescents (8 questions) and indications of skin cancer (12 questions). The last part was intended to determine their knowledge about skin self examination (4 questions) and behavioral stages of skin self examination (1 question). Data collection was achieved with a questionnaire form in three phases. In the 1st phase, data about demographic characteristics of students, risk status of skin cancer, knowledge level of skin cancer and behavior stages were collected. In the 2nd phase, skin self examination training based on the transtheoretical model was performed within the same day just after obtaining preliminary data. In the 3rd phase, adolescents were followed up three times to establish the efficacy of the training (on the 15th day after training program and at end of the 1st and 2nd months). Follow-up data

Development and testing of the questionnaire CEC-61: Knowledge about cervical cancer in Chilean adolescents.

PubMed

Urrutia, María Teresa; Gajardo, Macarena; Padilla, Oslando

2017-05-22

Despite a clear association between human papillomavirus and cervical cancer, knowledge in adolescent populations regarding the disease and methods for its detection and prevention is deficient. The aim of this study was to develop and test a new questionnaire concerning knowledge on cervical cancer. An instrument was developed and validated to measure knowledge in 226 Chilean adolescents between April and June 2011. Content validity, construct validity, and reliability analysis of the instrument were performed. The new, validated instrument, called CEC-61 (Conocimientos en Cancer Cérvicouterino-61 items/Knowledge in Cervical Cancer-61 items), contains nine factors and 61 items. The new questionnaire explained 81% of the variance with a reliability of 0.96. The assessment of knowledge with a valid and reliable instrument is the first step in creating interventions for a population and to encourage appropriate preventive behavior. CEC-61 is highly reliable and has a clear factorial structure to evaluate knowledge in nine domains related to cervical cancer disease, cervical cancer risk, papilloma virus infection, the Papanicolaou test, and the papilloma virus vaccine.

[Abnormal growth of spine in patients with adolescent idiopathic thoracic scoliosis].

PubMed

Bao, Hongda; Liu, Zhen; Qiu, Yong; Zhu, Feng; Zhu, Zezhang; Zhang, Wen

2014-05-01

To investigate if the growth patterns of the spine and pelvis are consistent in adolescent idiopathic scoliosis (AIS) patients with single thoracic curves. Forty-eight thoracic adolescent idiopathic scoliosis (T-AIS) female patients and 48 healthy age-matched adolescents were recruited consecutively between December 2011 and October 2012. Radiographic parameters including height of spine (HOS), length of spine (LOS), height of thoracic spine (HOT), length of thoracic spine (LOT), height of pelvis (HOP), width of pelvis (WOP) and width of thorax (WOT) were measured on the long-cassette posteroanterior standing radiographs. In addition, ratios including HOS/HOP, LOS/HOP, HOT/HOP, LOT/HOP, LOS/LOT, WOT/WOP were also calculated. Independent t-test was performed to compare the radiographic parameters and ratios between the two groups. Compared to the age-matched healthy adolescents, T-AIS patients had a significantly higher LOS and LOT (t = -2.364 and -1.495, P = 0.020 and 0.043) and smaller HOS and HOT (t = 2.060 and 3.359, P = 0.042 and 0.001). Yet, all of HOP, WOP and WOT showed no significant difference between T-AIS patients and healthy adolescents. Similarly, LOS/HOP and LOT/HOP were significantly higher in T-AIS patients as may be expected with an average LOS/HOP of 2.26 ± 0.14 in normal controls.In addition, LOS/LOT in normal controls had a trend of increase with age which was different from the stable LOS/LOT in T-AIS patients, indicating an increased growth of thoracic vertebra compared to lumbar vertebra. Compared to the age-matched healthy adolescents, T-AIS patients have an abnormal growth characteristics with longer spine. The growth of pelvis and thorax show no significant differences between T-AIS patients and healthy adolescents.

Survey of quality, readability, and social reach of websites on osteosarcoma in adolescents.

PubMed

Lam, Catherine G; Roter, Debra L; Cohen, Kenneth J

2013-01-01

Little is known about Internet resources for adolescent patients. This study assessed the quality, readability, and social reach of websites on an illustrative adolescent cancer diagnosis, osteosarcoma. The top 50 results from four queries in two search engines were screened. Quality and readability were determined using standard DISCERN tool, Flesch Reading Ease and Flesch-Kinkaid Grade. Social reach was gauged by social networking links, global website traffic, and a pilot adolescent-specificity measure. Of 400 websites assessed, 56 (14%) met inclusion criteria. Websites' mean quality was fair (49.8 on 75-point scale; range 31.0-66.0, poor to excellent); 86% failed readability standards (Grade>8); 75% offered at least one social networking link; and 34% offered site-specific social media. More than 60% received over 50,000 visits in the past month. Only 12.5% included adolescent-specific content. Of the 10 websites ranked highest for quality, only one achieved both readability targets and adolescent-specific content. Although some patient-oriented websites on osteosarcoma are of acceptable quality, most failed readability targets, and few appeared to address adolescents. Better awareness of Internet health resources and social media for adolescents with cancer is needed to address gaps, promote health literacy and facilitate patient-provider communication. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Behavioral, Social, and Emotional Symptom Comorbidities and Profiles in Adolescent Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study.

PubMed

Brinkman, Tara M; Li, Chenghong; Vannatta, Kathryn; Marchak, Jordan G; Lai, Jin-Shei; Prasad, Pinki K; Kimberg, Cara; Vuotto, Stefanie; Di, Chongzhi; Srivastava, Deokumar; Robison, Leslie L; Armstrong, Gregory T; Krull, Kevin R

2016-10-01

In the general population, psychological symptoms frequently co-occur; however, profiles of symptom comorbidities have not been examined among adolescent survivors of childhood cancer. Parents of 3,893 5-year survivors of childhood cancer who were treated between 1970 and 1999 and who were assessed in adolescence (age 12 to 17 years) completed the Behavior Problems Index. Age- and sex-standardized z scores were calculated for symptom domains by using the Childhood Cancer Survivor Study sibling cohort. Latent profile analysis identified profiles of comorbid symptoms, and multivariable multinomial logistic regression modeling examined associations between cancer treatment exposures and physical late effects and identified symptom profiles. Odds ratios (ORs) and 95% CIs for latent class membership were estimated and analyses were stratified by cranial radiation therapy (CRT; CRT or no CRT). Four symptoms profiles were identified: no significant symptoms (CRT, 63%; no CRT, 70%); elevated anxiety and/or depression, social withdrawal, and attention problems (internalizing; CRT, 31%; no CRT, 16%); elevated headstrong behavior and attention problems (externalizing; CRT, no observed; no CRT, 9%); and elevated internalizing and externalizing symptoms (global symptoms; CRT, 6%; no CRT, 5%). Treatment with ≥ 30 Gy CRT conferred greater risk of internalizing (OR, 1.7; 95% CI, 1.0 to 2.8) and global symptoms (OR, 3.2; 95% CI, 1.2 to 8.4). Among the no CRT group, corticosteroid treatment was associated with externalizing symptoms (OR, 1.9; 95% CI, 1.2 to 2.8) and ≥ 4.3 g/m(2) intravenous methotrexate exposure was associated with global symptoms (OR, 1.5; 95% CI, 0.9 to 2.4). Treatment late effects, including obesity, cancer-related pain, and sensory impairments, were significantly associated with increased risk of comorbid symptoms. Behavioral, emotional, and social symptoms frequently co-occur in adolescent survivors of childhood cancer and are associated with treatment

Psychosocial Interventions for Adolescents and Young Adults with Cancer.

PubMed

Phillips, Celeste R; Davis, Lorie L

2015-08-01

To summarize and evaluate the studies published since 2007 on psychosocial interventions designed for adolescents and young adults (AYA) with cancer. PubMed, Ovid, and PsycINFO. Our review confirms that the development and evaluation of psychosocial interventions for AYA is still in its infancy. Only five studies were identified and these generally had small samples and limited results. It is important for nurses to assess the needs of AYA. Incorporating creative ways for AYA to express their needs and self-reflect seems to be critically important and may help AYA cope positively with the cancer experience. Copyright © 2015 Elsevier Inc. All rights reserved.

Impact of Soy Foods on the Development of Breast Cancer and the Prognosis of Breast Cancer Patients.

PubMed

Messina, Mark

2016-01-01

The relationship between soy food intake and breast cancer has been rigorously investigated for more than 25 years. The identification of isoflavones as possible chemopreventive agents helped fuel this line of investigation. These diphenolic compounds, which are found in uniquely-rich amounts in soy beans, possess both estrogen-dependent and -independent properties that potentially inhibit the development of breast cancer. Observational studies show that among Asian women higher soy consumption is associated with an approximate 30% reduction in risk of developing breast cancer. However, evidence suggests that for soy to reduce breast cancer risk consumption must occur early in life, that is during childhood and/or adolescence. Despite the interest in the role of soy in reducing breast cancer risk concerns have arisen that soy foods, because they contain isoflavones, may increase the likelihood of high-risk women developing breast cancer and worsen the prognosis of breast cancer patients. However, extensive clinical and epidemiologic data show these concerns to be unfounded. Clinical trials consistently show that isoflavone intake does not adversely affect markers of breast cancer risk, including mammographic density and cell proliferation. Furthermore, prospective epidemiologic studies involving over 11,000 women from the USA and China show that postdiagnosis soy intake statistically significantly reduces recurrence and improves survival. © 2016 S. Karger GmbH, Freiburg.

Validity of Administrative Data in Identifying Cancer-related Events in Adolescents and Young Adults: A Population-based Study Using the IMPACT Cohort.

PubMed

Gupta, Sumit; Nathan, Paul C; Baxter, Nancy N; Lau, Cindy; Daly, Corinne; Pole, Jason D

2018-06-01

Despite the importance of estimating population level cancer outcomes, most registries do not collect critical events such as relapse. Attempts to use health administrative data to identify these events have focused on older adults and have been mostly unsuccessful. We developed and tested administrative data-based algorithms in a population-based cohort of adolescents and young adults with cancer. We identified all Ontario adolescents and young adults 15-21 years old diagnosed with leukemia, lymphoma, sarcoma, or testicular cancer between 1992-2012. Chart abstraction determined the end of initial treatment (EOIT) date and subsequent cancer-related events (progression, relapse, second cancer). Linkage to population-based administrative databases identified fee and procedure codes indicating cancer treatment or palliative care. Algorithms determining EOIT based on a time interval free of treatment-associated codes, and new cancer-related events based on billing codes, were compared with chart-abstracted data. The cohort comprised 1404 patients. Time periods free of treatment-associated codes did not validly identify EOIT dates; using subsequent codes to identify new cancer events was thus associated with low sensitivity (56.2%). However, using administrative data codes that occurred after the EOIT date based on chart abstraction, the first cancer-related event was identified with excellent validity (sensitivity, 87.0%; specificity, 93.3%; positive predictive value, 81.5%; negative predictive value, 95.5%). Although administrative data alone did not validly identify cancer-related events, administrative data in combination with chart collected EOIT dates was associated with excellent validity. The collection of EOIT dates by cancer registries would significantly expand the potential of administrative data linkage to assess cancer outcomes.

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.

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study.

PubMed

Smith, Ashley Wilder; Parsons, Helen M; Kent, Erin E; Bellizzi, Keith; Zebrack, Brad J; Keel, Gretchen; Lynch, Charles F; Rubenstein, Mara B; Keegan, Theresa H M

2013-01-01

Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL). We examined unmet service needs and HRQOL in the National Cancer Institute's Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15-39, diagnosed with cancer 6-14 months prior, in 2007-2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables. Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p's < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p's < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains. Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study

PubMed Central

Smith, Ashley Wilder; Parsons, Helen M.; Kent, Erin E.; Bellizzi, Keith; Zebrack, Brad J.; Keel, Gretchen; Lynch, Charles F.; Rubenstein, Mara B.; Keegan, Theresa H. M.

2013-01-01

Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL). Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables. Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains. Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical

Influence of risk-taking health behaviours of adolescents on cervical cancer prevention: a Hungarian survey.

PubMed

Marek, E; Berenyi, K; Dergez, T; Kiss, I; D'Cruz, G

2016-01-01

An anonymous questionnaire survey was conducted among the Hungarian adolescents to establish their use of tobacco, alcohol and drugs in relation to sexual behaviours, knowledge of human papillomavirus (HPV) and cervical cancer, and beliefs and attitudes towards screening and vaccination. Results indicated that adolescent risk-taking health behaviours correlate with risky sexual behaviours. As risk-taking behaviours do not correlate with a better awareness of the risk associated with HPV infection, it is of crucial importance that HPV/cervical cancer preventing educational programmes shall be sensitive to this 'vulnerable' population and draw the attention of these adolescents to their increased risk of sexually transmitted diseases and undesired pregnancies. Well-designed behavioural change interventions may be effective when in addition to providing adolescents (both men and women) with clear information about the implications of an HPV infection, they also aim to improve safer sex behaviours: consistent condom usage, limiting the number of sex partners, as well as encouraging regular participation in gynaecological screenings and uptake of the HPV vaccine. As this study population demonstrated positive attitudes towards the primary and secondary prevention of cervical cancer, the free HPV vaccination for the 12-13-year-old girls in Autumn 2014 will hopefully increase the currently low uptake of the vaccine in Hungary. © 2015 John Wiley & Sons Ltd.

Attitudes and Perceptions of Cancer Patients Toward Biospecimen Donation for Cancer Research: A Cross-Sectional Survey Among Chinese Cancer Patients.

PubMed

He, Na; Guo, Yan; He, Min; Qiang, Wanmin; Li, Haixin

2017-08-01

High-quality biospecimen collection from consented patients is crucial for cancer research activities. Patients' attitudes and willingness toward specimen donation influence high-quality biospecimen collection for cancer research activities. We carried out a cross-sectional study among randomly selected patients from 11 cancer departments of Tianjin Medical University Cancer Institute and Hospital between August 2014 and August 2015. A total of 784 patients were included to complete a 30-item self-administered survey. We evaluated the patients' willingness to consider providing leftover samples and additional samples for cancer research purposes. Among 784 patients, 683 (87.1%) and 653 (83.3%) were willing to donate leftover tissue and surplus blood after diagnosis, respectively. Six hundred thirty-one (80.5%) were favorably disposed to consider donating both tissue and blood samples for future cancer research. Female patients showed less willingness to donate biospecimens or related clinical data for research. First-hospitalized or older patients were less willing to provide leftover biospecimens or additional blood samples or even clinical data for research. By contrast, patients with a higher education level were more likely to donate leftover tissues after biopsy or surgery for research activities. Most Chinese cancer patients were willing to consider donating blood and tissue samples for cancer research. Several factors, including age, gender, first hospitalization, and education level, can influence their willingness to donate biospecimens. We need to provide proper education to increase understanding of patients in biobanking activities. This study provides novel empirical data on the likelihood of donating surplus and additional biospecimens and clinical health information among Chinese cancer patients.

Perceptions of Adolescents With Cancer Related to a Pain Management App and Its Evaluation: Qualitative Study Nested Within a Multicenter Pilot Feasibility Study

PubMed Central

Stevens, Bonnie J; Nathan, Paul C; Seto, Emily; Cafazzo, Joseph A; Johnston, Donna L; Hum, Vanessa; Stinson, Jennifer N

2018-01-01

Background Pain in adolescents with cancer is common and negatively impacts health-related quality of life. The Pain Squad+ smartphone app, capable of providing adolescents with real-time pain management support, was developed to enhance pain management using a phased approach (ie, systematic review, consensus conference and vetting, iterative usability testing cycles). A 28-day Pain Squad+ pilot was conducted with 40 adolescents with cancer to evaluate the feasibility of implementing the app in a future clinical trial and to obtain estimates of treatment effect. Objective The objective of our nested qualitative study was to elucidate the perceptions of adolescents with cancer to determine the acceptability and perceived helpfulness of Pain Squad+, suggestions for app improvement, and satisfaction with the pilot study protocol. Methods Post pilot study participation, telephone-based, semistructured, and audio-recorded exit interviews were conducted with 20 adolescents with cancer (12-18 years). All interviews were transcribed and independently coded by 2 study team members. Content analysis was conducted to identify data categories and overarching themes. Results Five major themes comprising multiple categories and codes emerged. These themes focused on the acceptability of the intervention, acceptability of the study, the perceived active ingredients of the intervention, the suitability of the intervention to adolescents’ lives, and recommendations for intervention improvement. Conclusions Overall, Pain Squad+ and the pilot study protocol were acceptable to adolescents with cancer. Suggestions for intervention and study improvements will be incorporated into the design of a future randomized clinical trial (RCT) aimed at assessing the effectiveness of Pain Squad+ on adolescents with cancer health outcomes. PMID:29625951

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

PubMed

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

2015-04-27

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

[Heterozygous carriers of Slavic mutation 657del5 of NBN gene in patients with colorectal cancer].

PubMed

Seemanová, Eva; Hoch, Jirí; Seeman, Pavel

2011-01-01

Nijmegen breakage syndrome (NBS) is one of the chromosomal instability syndromes due to DNA repair disorder. The syndrome is autosomal recessive determined, in homozygotes is characterized by many disorders including high predisposition to lymphoreticular malignancy in childhood and adolescence. Laboratory findings represent low level of immunoglobulins, B and T lymphocytes, increased sensitivity to the mutagens, especially hyperradiosensitivity and increased chromosomal instability. Heterozygotes show also elevated radiosensitivity and have an increased cancer risk in adult age. There is no predilection of the malignancy. Colorectal cancer was found often among the relatives of patients with NBS. Majority of the NBS patients are of the Central and Eastern European origin and carry the common founder mutation 657del5 in the NBN gene. The formation of second malignancy both in homozygotes and heterozygotes can be prevented by excluding any radiation. The aim of study is estimation of frequency of 657del5 heterozygotes among patients with colorectal cancer. Within a group of 161 patients with colorectal cancer 5 heterozygotes with 657del5 mutation were registered, e.g. 5-times higher incidence than expected. The elemental prevention in patients with proved positivity of Slavic mutation in NBN gene is to exclude any radiation.

Cachexia among US cancer patients.

PubMed

Arthur, Susan T; Van Doren, Bryce A; Roy, Debosree; Noone, Joshua M; Zacherle, Emily; Blanchette, Christopher M

2016-09-01

Cancer cachexia is a debilitating condition and results in poor prognosis. The purpose of this study was to assess hospitalization incidence, patient characteristics, and medical cost and burden of cancer cachexia in the US. This study used a cross-sectional analysis of the Nationwide Inpatient Sample (NIS) for 2009. Five cancers reported to have the highest cachexia incidence were assessed. The hospitalization incidence related to cachexia was estimated by cancer type, cost and length of stay were compared, and descriptive statistics were reported for each cancer type, as well as differences being compared between patients with and without cachexia. Risk of inpatient death was higher for patients with cachexia in lung cancer (OR = 1.32; CI = 1.20-1.46) and in all cancers combined (OR = 1.76; CI = 1.67-1.85). The presence of cachexia increased length of stay in lung (IRR = 1.05; CI = 1.03-1.08), Kaposi's sarcoma (IRR = 1.47; CI = 1.14-1.89) and all cancers combined (IRR = 1.09; CI = 1.08-1.10). Additionally, cachectic patients in the composite category had a longer hospitalization stay compared to non-cachectic patients (3-9 days for those with cachexia and 2-7 days for those without cachexia). The cost of inpatient stay was significantly higher in cachexic than non-cachexic lung cancer patients ($13,560 vs $13 190; p < 0.0001), as well as cachexic vs non-cachexic cancer patients in general (14 751 vs 13 928; p < 0.0001). Cachexia increases hospitalization costs and length of stay in several cancer types. Identifying the medical burden associated with cancer cachexia will assist in developing an international consensus for recognition and coding by the medical community and ultimately an effective treatment plans for cancer cachexia.

School-based brief psycho-educational intervention to raise adolescent cancer awareness and address barriers to medical help-seeking about cancer: a cluster randomised controlled trial.

PubMed

Hubbard, Gill; Stoddart, Iona; Forbat, Liz; Neal, Richard D; O'Carroll, Ronan E; Haw, Sally; Rauchhaus, Petra; Kyle, Richard G

2016-07-01

Raising cancer awareness and addressing barriers to help-seeking may improve early diagnosis. The aim was to assess whether a psycho-educational intervention increased adolescents' cancer awareness and addressed help-seeking barriers. This was a cluster randomised controlled trial involving 2173 adolescents in 20 schools. The intervention was a 50-min presentation delivered by a member of Teenage Cancer Trust's (UK charity) education team. Schools were stratified by deprivation and roll size and randomly allocated to intervention/control conditions within these strata. Outcome measures were the number of cancer warning signs and cancer risk factors recognised, help-seeking barriers endorsed and cancer communication. Communication self-efficacy and intervention fidelity were also assessed. Regression models showed significant differences in the number of cancer warning signs and risk factors recognised between intervention and control groups. In intervention schools, the greatest increases in recognition of cancer warning signs at 6-month follow-up were for unexplained weight loss (from 44.2% to 62.0%) and change in the appearance of a mole (from 46.3% to 70.7%), up by 17.8% and 24.4%, respectively. Greatest increases in recognition of cancer risk factors were for getting sunburnt more than once as a child (from 41.0% to 57.6%) and being overweight (from 42.7% to 55.5%), up by 16.6% and 12.8%, respectively. Regression models showed that adolescents in intervention schools were 2.7 times more likely to discuss cancer at 2-week follow-up compared with the control group. No differences in endorsement of barriers to help-seeking were observed. School-based brief psycho-educational interventions are easy to deliver, require little resource and improve cancer awareness. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd. © 2015 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

School‐based brief psycho‐educational intervention to raise adolescent cancer awareness and address barriers to medical help‐seeking about cancer: a cluster randomised controlled trial

PubMed Central

Stoddart, Iona; Forbat, Liz; Neal, Richard D.; O'Carroll, Ronan E.; Haw, Sally; Rauchhaus, Petra; Kyle, Richard G.

2015-01-01

Abstract Objectives Raising cancer awareness and addressing barriers to help‐seeking may improve early diagnosis. The aim was to assess whether a psycho‐educational intervention increased adolescents' cancer awareness and addressed help‐seeking barriers. Methods This was a cluster randomised controlled trial involving 2173 adolescents in 20 schools. The intervention was a 50‐min presentation delivered by a member of Teenage Cancer Trust's (UK charity) education team. Schools were stratified by deprivation and roll size and randomly allocated to intervention/control conditions within these strata. Outcome measures were the number of cancer warning signs and cancer risk factors recognised, help‐seeking barriers endorsed and cancer communication. Communication self‐efficacy and intervention fidelity were also assessed. Results Regression models showed significant differences in the number of cancer warning signs and risk factors recognised between intervention and control groups. In intervention schools, the greatest increases in recognition of cancer warning signs at 6‐month follow‐up were for unexplained weight loss (from 44.2% to 62.0%) and change in the appearance of a mole (from 46.3% to 70.7%), up by 17.8% and 24.4%, respectively. Greatest increases in recognition of cancer risk factors were for getting sunburnt more than once as a child (from 41.0% to 57.6%) and being overweight (from 42.7% to 55.5%), up by 16.6% and 12.8%, respectively. Regression models showed that adolescents in intervention schools were 2.7 times more likely to discuss cancer at 2‐week follow‐up compared with the control group. No differences in endorsement of barriers to help‐seeking were observed. Conclusions School‐based brief psycho‐educational interventions are easy to deliver, require little resource and improve cancer awareness. © 2015 The Authors. Psycho‐Oncology published by John Wiley & Sons Ltd. PMID:26502987

Patient-Reported Measures of Hearing Loss and Tinnitus in Pediatric Cancer and Hematopoietic Stem Cell Transplantation: A Systematic Review

ERIC Educational Resources Information Center

Stark, Daniel; Rosenberg, Abby R.; Johnston, Donna; Knight, Kristin; Caperon, Lizzie; Uleryk, Elizabeth; Frazier, A. Lindsay; Sung, Lillian

2016-01-01

Purpose: We identified studies that described use of any patient-reported outcome scale for hearing loss or tinnitus among children and adolescents and young adults (AYAs) with cancer or hematopoietic stem cell transplantation (HSCT) recipients. Method: In this systematic review, we performed electronic searches of OvidSP MEDLINE, EMBASE, and…

Inequalities in reported cancer patient experience by socio-demographic characteristic and cancer site: evidence from respondents to the English Cancer Patient Experience Survey.

PubMed

Saunders, C L; Abel, G A; Lyratzopoulos, G

2015-01-01

Patient experience is a critical dimension of cancer care quality. Understanding variation in experience among patients with different cancers and characteristics is an important first step for designing targeted improvement interventions. We analysed data from the 2011/2012 English Cancer Patient Experience Survey (n = 69,086) using logistic regression to explore inequalities in care experience across 64 survey questions. We additionally calculated a summary measure of variation in patient experience by cancer, and explored inequalities between patients with cancers treated by the same specialist teams. We found that younger and very old, ethnic minority patients and women consistently reported worse experiences across questions. Patients with small intestine/rarer lower gastrointestinal, multiple myeloma and hepatobiliary cancers were most likely to report negative experiences whereas patients with breast, melanoma and testicular cancer were least likely (top-to-bottom odds ratio = 1.91, P < 0.0001). There were also inequalities in experience among patients with cancers treated by the same specialty for five of nine services (P < 0.0001). Specifically, patients with ovarian, multiple myeloma, anal, hepatobiliary and renal cancer reported notably worse experiences than patients with other gynaecological, haematological, gastrointestinal and urological malignancies respectively. Initiatives to improve cancer patient experience across oncology services may be suitably targeted on patients at higher risk of poorer experience. © 2014 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.

Guided internet-administered self-help to reduce symptoms of anxiety and depression among adolescents and young adults diagnosed with cancer during adolescence (U-CARE: YoungCan): a study protocol for a feasibility trial.

PubMed

Ander, Malin; Wikman, Anna; Ljótsson, Brjánn; Grönqvist, Helena; Ljungman, Gustaf; Woodford, Joanne; Lindahl Norberg, Annika; von Essen, Louise

2017-01-27

A subgroup of adolescents and young adults diagnosed with cancer during adolescence reports elevated levels of anxiety and depressive symptoms and unmet needs for psychological support. Evidence-based psychological treatments tailored for this population are lacking. This protocol describes a feasibility study of a guided-internet-administered self-help programme (YoungCan) primarily targeting symptoms of anxiety and depression among young persons diagnosed with cancer during adolescence and of the planned study procedures for a future controlled trial. The study is an uncontrolled feasibility trial with a pre-post and 3-month follow-up design. Potential participants aged 15-25 years, diagnosed with cancer during adolescence, will be identified via the Swedish Childhood Cancer Registry. 30 participants will be included. Participants will receive YoungCan, a 12-week therapist-guided, internet-administered self-help programme consisting primarily of cognitive-behavioural therapy organised into individually assigned modules targeting depressive symptoms, worry and anxiety, body dissatisfaction and post-traumatic stress. Interactive peer support and psychoeducative functions are also available. Feasibility outcomes include: recruitment and eligibility criteria; data collection; attrition; resources needed to complete the study and programme; safety procedures; participants' and therapists' adherence to the programme; and participants' acceptability of the programme and study methodology. Additionally, mechanisms of impact will be explored and data regarding symptoms of anxiety, depression, post-traumatic stress, body dissatisfaction, reactions to social interactions, quality of life, axis I diagnoses according to the Mini International Neuropsychiatric Interview and healthcare service use will be collected. Exploratory analyses of changes in targeted outcomes will be conducted. This feasibility protocol was approved by the Regional Ethical Review Board in Uppsala

Cognitive and Occupational Function in Survivors of Adolescent Cancer.

PubMed

Nugent, Bethany D; Bender, Catherine M; Sereika, Susan M; Tersak, Jean M; Rosenzweig, Margaret

2018-02-01

Adolescents with cancer have unique developmental considerations. These include brain development, particularly in the frontal lobe, and a focus on completing education and entering the workforce. Cancer and treatment at this stage may prove to uniquely affect survivors' experience of cognitive and occupational function. An exploratory, cross-sectional, descriptive comparative study was employed to describe cognitive and occupational function in adult survivors of adolescent cancer (diagnosed between the ages of 15 and 21 years) and explore differences in age- and gender-matched controls. In total, 23 survivors and 14 controls participated in the study. While significant differences were not found between the groups on measures of cognitive and occupational function, several small and medium effect sizes were found suggesting that survivors may have greater difficulty than controls. Two small effect sizes were found in measures of neuropsychological performance (the Digit Vigilance test [d = 0.396] and Stroop test [d = 0.226]). Small and medium effect sizes ranging from 0.269 to 0.605 were found for aspects of perceived and total cognitive function. A small effect size was also found in work output (d = 0.367). While we did not find significant differences in cognitive or occupational function between survivors and controls, the effect sizes observed point to the need for future research. Future work using a larger sample size and longitudinal design are needed to further explore cognitive and occupational function in this vulnerable and understudied population and assist in the understanding of patterns of change over time.

Childhood Liver Cancer Symptoms, Tests, Prognosis, and Stages (PDQ®)—Patient Version

Cancer.gov

Liver cancer is rare in children and adolescents. There are two main types of childhood liver cancer. Hepatoblastoma usually affects children 3 years and younger, and hepatocellular carcinoma occurs in older children and teenagers. Learn about risk factors, tests to diagnose, and stages of childhood liver cancer.

A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members.

PubMed

Korsvold, Live; Mellblom, Anneli Viktoria; Finset, Arnstein; Ruud, Ellen; Lie, Hanne Cathrine

2017-02-01

Little is known about the emotional concerns expressed by adolescent and young adult (AYA) patients in consultations when a diagnosis of cancer is delivered. Here, we investigated the content of such concerns and how health care providers respond to them. We audio-recorded nine consultations with AYA cancer patients (ages: 12-25 years) at the time of diagnosis. We have previously identified and coded 135 emotional concerns and the responses to these in the nine consultations using the Verona Coding Definitions of Emotional Sequences (VR-CoDES) framework. Here, we used qualitative content analysis to study these emotional concerns and categorize them according to overarching themes. We then quantitatively explored associations between the themes of the concerns and whether the responses to them varied according to their themes. We identified four themes for the content of concerns: "Side-effects/late-effects" (39%), "What happens in the near future/practical aspects" (16%), "Fear" (27%) and "Sadness" (17%) (e. g. crying, sighing or other sounds that expressed sadness). Health care providers' responses did not appear to vary according to the different themes of concerns, but typically consisted of providing medical information. The content analysis revealed that patients and family members expressed a wide range of emotional concerns. Health care providers tended to respond to the content-aspect of the concerns, but did rarely explicitly acknowledge the affective-aspect of the concerns. The effect of responses to patients' emotional concerns in the important first consultations about the cancer diagnosis and planned treatment should be investigated in future studies. Copyright © 2016 Elsevier Ltd. All rights reserved.

Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed.

PubMed

Spathis, Anna; Hatcher, Helen; Booth, Sara; Gibson, Faith; Stone, Paddy; Abbas, Laura; Barclay, Matt; Brimicombe, James; Thiemann, Pia; McCabe, Martin G; Campsey, Rachel; Hooker, Louise; Moss, Wendy; Robson, Jane; Barclay, Stephen

2017-09-01

Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to <1 year (p = 0.007). Forty-one percent received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.

Reproductive Health in the Adolescent and Young Adult Cancer Patient: An Innovative Training Program for Oncology Nurses

PubMed Central

Vadaparampil, Susan T.; Hutchins, Nicole M.; Quinn, Gwendolyn P.

2012-01-01

In 2008, approximately 69,200 AYAs were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare (ENRICH). The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change. PMID:23225072

[Sexy cancer--sexuality for cancer patients].

PubMed

Peleg-Nesher, Sharon; Yachini, Brurya; Inbar, Moshe

2009-09-01

Sexuality is a basic need for every human being as long as he or she is alive, irrespective of age or health status. Approximately 23,500 individuals are diagnosed with cancer each year in Israel and join the 120,000 cancer patients currently living in Israel. The results of cancer treatments are traditionally assessed and based on the outcome regarding mortality versus survival. An equally important aspect to be addressed in this assessment must relate to quality of life. One of the more painful insults to the quality of life of cancer patients relates to the deleterious effects on sexuality. This article aims to present physicians with the spectrum of sexuality-related issues which are encountered by cancer patients and their partners, starting from the moment of diagnosis, throughout the various stages of treatment and to provide basic knowledge. Many individuals contracting cancer have difficulty dealing with the issue of sexuality. They are typically embarrassed and feel uneasy when asking health care providers about such a non-life threatening issue. Partners similarly feel both shame and guilt. In many cases sexuality, intimacy and emotional attachment are important aspects and may be essential for survival. Addressing these issues during treatment can provide patients with a sense of security, avoiding embarrassment and further exacerbation of such problems. Unfortunately, little has been done to develop an optimal interventional program, although standard sexual treatments have often been applied. Prospective clinical research and outcomes are missing. The physician can use the well-known PLISSIT model (1978): to provide sexuality involvement on different levels. The very new BETTER model (2004) can help emphasize that cancer treatment and the disease have an influence on intimacy and sexuality.

Assessing Agreement Between Salivary Alpha Amylase Levels Collected by Passive Drool and Eluted Filter Paper in Adolescents With Cancer

PubMed Central

Ameringer, Suzanne; Munro, Cindy; Elswick, R.K.

2014-01-01

Purpose/Objectives To assess the validity of filter paper (FP) against the gold standard of passive drool (PD) for collecting salivary alpha amylase as a surrogate biomarker of psychological stress in adolescents with cancer. Design Part of a longitudinal, descriptive study of symptoms in adolescents with cancer during chemotherapy. Setting A pediatric hematology/oncology treatment center. Sample 33 saliva sample pairs from nine adolescents with cancer, aged 13–18 years. Methods Salivary alpha amylase was collected by PD and FP at four time points during a cycle of chemotherapy: days 1 (time 1) and 2 (time 2) of chemotherapy, day 7–10 (time 3), and day 1 of the next cycle (time 4). A random effects regression was used to assess the correlation between PD and FP values, and a Bland Altman analysis was conducted to assess agreement between the values. Main Research Variables Salivary alpha amylase. Findings The estimated correlation between PD and FP values was r = 0.91, p < 0.001. Regression results were also used to rescale FP values to the levels of the PD values because the FP values were on a different scale than the PD values. The Bland Altman analysis revealed that the agreement between the rescaled FP values and PD values was not satisfactory. Conclusions Eluted FP may not be a valid method for collecting salivary alpha amylase in adolescents with cancer. Implications for Nursing Psychological stress in adolescents with cancer may be linked to negative outcomes, such as greater symptom severity and post-traumatic stress disorder. Nurses need valid, efficient, biobehavioral measures to assess psychological stress in the clinical setting. PMID:22750901

Cancer pain, fatigue, distress, and insomnia in cancer patients.

PubMed

Theobald, Dale E

2004-01-01

Insomnia is common among cancer patients, occurring in approximately 30% to 50% of the cancer population. The interactions between cancer pain, insomnia, fatigue, and depression/anxiety are complex, warranting treatment plans that focus not only on the relief of specific symptoms to improve quality of life but also on the impact of treatment on other related symptoms. Pain is one of the most common symptoms experienced by cancer patients and is one of the primary factors that precipitate insomnia in this population. Fatigue is also commonly reported by cancer patients, with a prevalence of nearly 80% in some tumor types. Cancer-related fatigue occurs most often after surgery, chemotherapy, radiotherapy, or immunotherapy and has been reported by cancer patients to be the major obstacle to normal functioning and a good quality of life. Insomnia in cancer patients often occurs in association with psychological disorders such as depression or anxiety. Sleep disturbances are associated with aberrant patterns of cortisol secretion, such as those found in insomnia, which are known to significantly depress the immune system, particularly the cells of the immune system responsible for mounting a defense against tumors. Evidence suggests that management of insomnia through a combination of pharmacologic and nonpharmacologic means can have a positive impact not only on insomnia but also on related symptoms and, consequently, on overall health and quality of life. Although the treatment of insomnia in cancer patients can improve cancer-related fatigue, immune functioning, and overall quality of life, insomnia in the context of cancer is still undertreated. Physicians should use hypnotic agents appropriately and be aware of the reduced potential for producing tolerance and dependence with the nonbenzodiazepine hypnotic agents. The management of insomnia in cancer patients should include a global treatment plan designed to address not only the underlying sleep disturbance but

Chronic lymphocytic thyroiditis is associated with invasive characteristics of differentiated thyroid carcinoma in children and adolescents.

PubMed

Iliadou, Paschalia K; Effraimidis, Grigoris; Konstantinos, Michalakis; Grigorios, Panagiotou; Mitsakis, Periklis; Patakiouta, Frideriki; Pazaitou-Panayiotou, Kalliopi

2015-12-01

The association between chronic lymphocytic thyroiditis (CLT) and thyroid cancer is an interesting topic. The aim of the present study was to evaluate if demographic and histological characteristics as well as the long-term outcome of thyroid cancer was different in children and adolescents with and without CLT. The medical records of children and adolescents (≤21 years old) were reviewed. The following data were recorded: gender, year and age at diagnosis, family history of thyroid cancer, history of external radiation therapy, histological type (papillary and variants, follicular and variants), tumour size, multifocality, infiltration of thyroid parenchyma or surrounding soft tissues, vascular invasion, presence of lymph node and distant metastases. Information about the presence of TgAb and TPOAb was also collected. One hundred eight children and adolescents (median age 19.0, interquartile range 4.0 years) were diagnosed with differentiated thyroid carcinoma (DTC); 31 patients (28.7%) presented histological characteristics compatible with CLT. Infiltration of thyroid parenchyma was more frequent in patients with CLT compared to patients without (74.2% vs 48.1% respectively, P=0.024). Familial papillary thyroid carcinoma (PTC) was more frequent in patients with CLT compared to those without CLT (20.7% vs 2.8% respectively, P=0.009). There was no better outcome with respect to the presence of CLT or not. Children and adolescents with CLT present more frequently familial PTC as well as thyroid cancer with invasive characteristics. © 2015 European Society of Endocrinology.

[Nursing in palliative care to children and adolescents with cancer: integrative literature review].

PubMed

da Costa, Thailly Faria; Ceolim, Maria Filomena

2010-12-01

Pediatric palliative care is a challenge for nursing because it requires emotional balance and knowledge about its specific features. This study is an integrative literature review that aims to identify nursing actions in palliative care for children and adolescents with cancer, considering peculiarities of the disease and dying process. The review was performed by searching for articles indexed in Biblioteca Virtual da Adolescência (Adolec), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS) and PubMed databases from January 2004 till May 2009. From 29 references found, six met inclusion criteria. Results show teamwork, home care, pain management, dialogue, family support and particularities of childhood cancer fundamental tools for nursing in palliative care. The complexity of care in this situation requires solidarity, compassion, support and relieving suffering.

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

Prostate Cancer Patients' Refusal of Cancer-Directed Surgery: A Statewide Analysis

PubMed Central

Islam, K. M.

2015-01-01

Introduction. Prostate cancer is the most common cancer among men in USA. The surgical outcomes of prostate cancer remain inconsistent. Barriers such as socioeconomic factors may play a role in patients' decision of refusing recommended cancer-directed surgery. Methods. The Nebraska Cancer Registry data was used to calculate the proportion of prostate cancer patients recommended the cancer-directed surgery and the surgery refusal rate. Multivariate logistic regression was applied to analyze the socioeconomic indicators that were related to the refusal of surgery. Results. From 1995 to 2012, 14,876 prostate cancer patients were recommended to undergo the cancer-directed surgery in Nebraska, and 576 of them refused the surgery. The overall refusal rate of surgery was 3.9% over the 18 years. Patients with early-stage prostate cancer were more likely to refuse the surgery. Patients who were Black, single, or covered by Medicaid/Medicare had increased odds of refusing the surgery. Conclusion. Socioeconomic factors were related to the refusal of recommended surgical treatment for prostate cancer. Such barriers should be addressed to improve the utilization of surgical treatment and patients' well-being. PMID:25973276

Support groups for cancer patients.

PubMed

Weis, Joachim

2003-12-01

Within the last two decades psychosocial group interventions have been developed to help cancer patients cope better with the psychosocial sequelae of cancer diagnosis and treatment. Support groups include a variety of different approaches some of which focus on behavioral aspects and symptoms (e.g. pain, fatigue) and some on the expression of emotions. Most of these support programs are structured and short-term and include elements such as delivery of information, emotional and social support, stress management strategies based on the cognitive behavioral approach and the teaching of relaxation techniques. Beyond individual therapy, group therapies can address cancer-related issues to enable patients to gain emotional support from other patients with similar experiences and to use these experiences to buffer the fear of dying and the unknown future. One of the overall therapeutic targets is the promotion of the patient's individual resources. Therefore, such groups are helpful not only for the patients, but also for their spouses and other family members, in relieving the cancer-related distress. In Germany, support groups are established in rehabilitation clinics as well as outpatient programs and play an important role in palliative and supportive care of cancer patients. Against the background of changes in the patients' role, the increasing availability of information technology (e.g. the internet) and patient advocacy in cancer treatment, support groups may be understood as a mean of empowerment of the patient. The need for group interventions such as outpatient programs for cancer patients is claimed not only by the health professionals but also by the patients themselves. There is some research emphasizing that avoidance of feelings, denial of concerns, feelings of helplessness and social isolation are correlated with poorer health outcome and poorer quality of life. Many empirical studies have provided evidence-based knowledge that structured group

[Which approach of therapeutic education (TE) for adolescents and young adults with cancer? Experience from the TE working group of "Go-AJA"].

PubMed

Corradini, Nadège; Dagorne, Loïc; Retailleau, Marielle; Rédini, Françoise; Sudour-Bonnange, Hélène; Gofti-Laroche, Leila; Le Rhun, Anne; Gaspar, Nathalie

2016-12-01

Therapeutic education (TE) is a practice developed over 40 years at an international level to give people with chronic illness the skills necessary to help them better manage their disease. The lengthening survival time of cancer patients as well as changes in the patient-caregiver relationship have contributed to the development of TE in oncologic diseases. Every year in France, about 1900 adolescents and young adults (15-25 years old) are diagnosed with cancer which is the second leading cause of death in this age group. The observed survival rates for these patients are lower when compared with children's. Some of the hypotheses put forward to explain this difference include a lack of constancy in care and a non-following treatment, as failure to adhere to therapies is common in this age group. "Go-AJA", an interdisciplinary national organization established in 2012, aims to improve the quality of care and treatment results for AYA living with cancer. Therapeutic education for AYA in oncology is an active working group of "Go-AJA" and intends to draw recommendations and to improve adapted communication on different education topics. Elaboration and preparation of TE programs by skilled multidisciplinary teams engaged in interactive educational actions is the first and most crucial step. The TE "Go-AJA" working group has federated pediatric and adult oncologists, nurses, psychologists, TE professionals, and resource patients, thanks to the commitment of professionals from the 8 national teams supported by the National Cancer Institute. Physical meetings and conference calls were organized from 2012 to 2015 to construct TE tools and programs for AYA with cancer. A competence referential was built and adapted to AYA population with cancer, after focused groups organized in 2 main oncology centers with on-therapy sarcoma patients and members of the multidisciplinary TE working group. Tools were validated and adapted to adolescents or young adults with cancer, to

[Characteristics of dyslipidemia in cancer patients].

PubMed

Ostroumova, M N; Kovalenko, I G; Bershteĭn, L M; Tsyrlina, E V; Dil'man, V M

1986-01-01

Blood concentrations of total cholesterol, cholesterol of very high density lipoproteins (alpha-cholesterol), triglycerides, beta-lipoproteins and 11-hydroxycorticosteroids were studied in 560 patients with rectal, colon, lung, ovarian, breast and endometrial cancer as well as in 238 controls. Patients with breast and rectal cancer were examined before and repeatedly after operation (every 6-12 months within 4-5 years). The blood concentration of total cholesterol was found to be elevated in breast cancer patients and controls with fibroadenomatosis and decreased in females with ovarian cancer and males with lung cancer. The level of blood alpha-cholesterol was decreased in males with all tumor localizations under study and in females with ovarian and rectal cancer. The concentration of triglycerides was increased in women patients only. Three possible causes of dyslipidemia in cancer patients are discussed: its development before tumor manifestation, the effect of tumor on the metabolic status of the host and the role of emotional stress in the increase of triglycerides level in the blood of primary cancer patients.

Antegrade sclerotherapy in adolescent varicocele patients.

PubMed

Keene, D J B; Cervellione, R M

2017-06-01

In the 1970s, Tauber described the antegrade sclerotherapy technique to treat varicoceles, and reported a 10% recurrence rate. The present study aimed to evaluate paediatric success rates and the effect of modifications to the surgical technique. A prospective study was performed of all adolescent patients undergoing antegrade sclerotherapy surgery. Each patient had an idiopathic varicocele with spontaneous venous reflux on Doppler examination, and underwent cannulation of a pampiniform plexus vein via a scrotal incision under general anaesthetic. Aethoxysklerol ® 3% (2 ml/kg) maximum 3 ml was injected into the pampiniform plexus vein under fluoroscopic monitoring. Success was assessed by clinical examination and Doppler ultrasound 3, 6 and 9 months after surgery. Data were presented as median (interquartile range). Patients were split into three groups: Group A - liquid sclerotherapy with Y connector; Group B - liquid sclerotherapy direct to cannula; and Group C - foam sclerotherapy direct to cannula. Fisher's exact test was used to compare the success rates in each group. A total of 91 patients underwent antegrade sclerotherapy. The median age was 14.8 years (range 13.7-15.5). Eleven persistent varicoceles occurred and were diagnosed by Doppler ultrasound. The success rate of surgery was 58% in Group A, 90% in Group B and 96% in Group C. Success was significantly higher in Group B and Group C compared with Group A. No testicular atrophy occurred; two wound infections, two haematomas and one hydrocele were recorded (Table). Introduction of antegrade sclerotherapy in the adolescent population resulted in a safe and cost-effective method for the management of adolescent varicocele. Several modifications to the technique have been introduced to achieve a high success rate (96%) with minimal complications. Published by Elsevier Ltd.

Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children With Cancer

PubMed Central

Fernandez, Conrad Vincent; Gao, Jun; Strahlendorf, Caron; Moghrabi, Albert; Pentz, Rebecca Davis; Barfield, Raymond Carlton; Baker, Justin Nathaniel; Santor, Darcy; Weijer, Charles; Kodish, Eric

2009-01-01

Purpose There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. Methods A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against providing results; and barriers to providing results. Results Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. Conclusion Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. PMID:19164211

Parental palliative cancer: psychosocial adjustment and health-related quality of life in adolescents participating in a German family counselling service

PubMed Central

2012-01-01

Background Parental palliative disease is a family affair, however adolescent's well-being and coping are still rarely considered. The objectives of this paper were a) to identify differences in psychosocial adjustment and health-related quality of life (HRQoL) among adolescents and young adults with parents suffering from palliative cancer or cancers in other disease stages, b) to relate psychosocial adjustment and health-related quality of life to adolescent coping, and c) to explore significant mediator and predictor variables. Methods Cross-sectional data were derived from a multi-site research study of families before child-centered counselling. N=86 adolescents and young adults were included, their mean age 13.78 years (sd 2.45), 56% being female. Performed analyses included ANCOVA, multiple linear regression, and mediation analysis. Results Adolescents with parents suffering from palliative cancers reported significantly less total psychosocial problems, and better overall HRQoL. There were no significant group differences regarding coping frequency and efficacy. Our set of coping items significantly mediated the effect of parental disease stage on psychosocial problems and HRQoL. Further, parental disease status and general family functioning predicted psychosocial problems (R2adj =.390) and HRQoL (R2adj =.239) best. Conclusion The study indicates distress among adolescents throughout the entire parental disease process. Our analysis suggests that counselling services could offer supportive interventions which focus particularly on adolescent coping as well as family functioning. PMID:23110440

Causes of death among cancer patients.

PubMed

Zaorsky, N G; Churilla, T M; Egleston, B L; Fisher, S G; Ridge, J A; Horwitz, E M; Meyer, J E

2017-02-01

The purpose of our study was to characterize the causes of death among cancer patients as a function of objectives: (i) calendar year, (ii) patient age, and (iii) time after diagnosis. US death certificate data in Surveillance, Epidemiology, and End Results Stat 8.2.1 were used to categorize cancer patient death as being due to index-cancer, nonindex-cancer, and noncancer cause from 1973 to 2012. In addition, data were characterized with standardized mortality ratios (SMRs), which provide the relative risk of death compared with all persons. The greatest relative decrease in index-cancer death (generally from > 60% to < 30%) was among those with cancers of the testis, kidney, bladder, endometrium, breast, cervix, prostate, ovary, anus, colorectum, melanoma, and lymphoma. Index-cancer deaths were stable (typically >40%) among patients with cancers of the liver, pancreas, esophagus, and lung, and brain. Noncancer causes of death were highest in patients with cancers of the colorectum, bladder, kidney, endometrium, breast, prostate, testis; >40% of deaths from heart disease. The highest SMRs were from nonbacterial infections, particularly among <50-year olds (e.g. SMR >1,000 for lymphomas, P < 0.001). The highest SMRs were typically within the first year after cancer diagnosis (SMRs 10-10,000, P < 0.001). Prostate cancer patients had increasing SMRs from Alzheimer's disease, as did testicular patients from suicide. The risk of death from index- and nonindex-cancers varies widely among primary sites. Risk of noncancer deaths now surpasses that of cancer deaths, particularly for young patients in the year after diagnosis. © The Author 2016. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

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.

Characteristics and outcome of spontaneous bacterial meningitis in patients with cancer compared to patients without cancer.

PubMed

Pomar, Virginia; Benito, Natividad; López-Contreras, Joaquin; Coll, Pere; Gurguí, Mercedes; Domingo, Pere

2017-05-01

In cancer patients, who are frequently immunocompromised, bacterial meningitis (BM) can be a severe complication, with a different presentation, etiology, and course, compared to patients without cancer. Our objective is to compare the characteristics and outcomes of BM in patients with and without cancer. A single-center, prospective observational cohort study, conducted between 1982 and 2012, in a tertiary university hospital in Barcelona (Spain). The main outcome measure is in-hospital mortality. We evaluated 659 episodes of BM; 97 (15%) had active cancer. Patients with malignancies were older (median 63 (interquartile range [IQR] 24) vs 52 [IQR 42] years, P < .001) and more often had a Charlson comorbidity score of ≥3 (51% vs 11%, P < .001). The classic meningitis triad (35% vs 50%, P = .05), fever (91% vs 96%, P = .03), neck stiffness (58% vs 78%, P < .001), headache (63% vs 77%) P = .003), and rash (7% vs 30%, P < .001) were less frequent. There was a longer interval between admission and antibiotic therapy (median 5 [IQR 14] vs 3 [IQR 6] hours, P < .001). Listeria meningitis was the commonest cause of BM (29%) and was more frequent in cancer than noncancer (8%, P < .001) patients, whereas meningococcal meningitis was much less frequent (4% vs 36%, P < .001). Overall mortality was higher in patients with cancer (31% vs 16%, P < .001), although cancer was not associated with an unfavorable outcome in the multivariate analysis (odds ratio 1.825, P = .07). Patients with meningitis and cancer are older and have more subtle clinical manifestations than patients without cancer. Listeria monocytogenes is the predominant pathogen and mortality is higher in cancer patients.

The experiences of family members in the year following the diagnosis of a child or adolescent with cancer: a qualitative systematic review.

PubMed

Mu, Pei-Fan; Lee, Mei-Yin; Sheng, Ching-Ching; Tung, Pei-Chi; Huang, Ling-Ya; Chen, Yi-Wei

2015-06-12

was excluded from the review. Types of studies: This review considered studies that used qualitative methods to examine the experiences of families of a child or adolescent with newly diagnosed cancer; these included but were not limited to designs such as qualitative research, phenomenology, hermeneutic phenomenology, grounded theory, ethnography, action research, focus groups and narrative research. The search was limited to studies published in English or Chinese because the reviewers were fluent in both of these languages. The search strategy sought to find both published and unpublished studies. CINAHL, PUBMED, ProQuest Dissertations and Theses and Chinese electronic periodical services were used to search for articles. Each paper was assessed independently by two reviewers for methodological quality. The Joanna Briggs Institute Qualitative Assessment and Review Instrument was used to appraise the methodological quality of the articles. Any disagreements that arose between the reviewers were resolved through discussion, or via a third reviewer. Qualitative data were extracted from papers for inclusion in the review using the standardized data extraction tool from JBI-QARI. Qualitative research findings were extracted and pooled using JBI-QARI. A total of eight qualitative papers were included in the review (two grounded theory, four phenomenology and two qualitative inquiries). Five syntheses were derived: (1) family loss and the turmoil that surrounds the diagnosis of cancer; (2) a sense of courage and hope for mutual responsibility inspired by the changes in circumstances; (3) family support enhancing family members’ resilience; (4) health professional-patient communication that provide a deeper understanding of the illness and their own situations; and (5) a positive attitude towards the illness and planning for the future. The research findings should help health professionals understand the nature of the experiences of family members of a child or

Brain morphological changes in adolescent and adult patients with anorexia nervosa.

PubMed

Seitz, J; Herpertz-Dahlmann, B; Konrad, K

2016-08-01

Gray matter (GM) and white matter (WM) volume loss occur in the brains of patients with acute anorexia nervosa (AN) and improve again upon weight restoration. Adolescence is an important time period for AN to begin. However, little is known about the differences between brain changes in adolescents vs adults. We used a meta-analysis and a qualitative review of all MRI studies regarding acute structural brain volume changes and their recovery in adolescents and adults with AN. 29 studies with 473 acute, 121 short-term weight-recovered and 255 long-term recovered patients with AN were included in the meta-analysis. In acute AN, GM and WM were reduced compared to healthy controls. Acute adolescent patients showed a significantly greater GM reduction than adults (-8.4 vs -3.1 %), the difference in WM (-4.0 vs -2.1 %) did not reach significance. Short-term weight-recovered patients showed a remaining GM deficit of 3.6 % and a non-significant WM reduction of 0.9 % with no age differences. Following 1.5-8 years of remission, GM and WM were no longer significantly reduced in adults (GM -0.4 %, WM -0.7 %); long-term studies for adolescents were scarce. The qualitative review showed that GM volume loss was correlated with cognitive deficits and three studies found GM regions, cerebellar deficits and WM to be predictive of outcome. GM and WM are strongly reduced in acute AN and even more pronounced in adolescence. Long-term recovery appears to be complete for adults while no conclusions can be drawn for adolescents, thus caution remains.

Knowledge and perceptions of familial and genetic risks for breast cancer risk in adolescent girls

PubMed Central

Bradbury, Angela R.; Patrick-Miller, Linda; Egleston, Brian L.; Schwartz, Lisa A.; Sands, Colleen B.; Shorter, Rebecca; Moore, Cynthia W.; Tuchman, Lisa; Rauch, Paula; Malhotra, Shreya; Rowan, Brianne; van Decker, Stephanie; Schmidheiser, Helen; Bealin, Lisa; Sicilia, Patrick; Daly, Mary B.

2012-01-01

Background Evidence suggests early events might modify adult breast cancer risk and many adolescents learn of familial and genetic risks for breast cancer. Little is known about how adolescent girls understand and respond to breast cancer risk. Methods Semi-structured interviews with 11-19 year-old girls at high-risk and population-risk for breast cancer evaluated knowledge and perceptions of breast cancer risk and risk modification. Framework analysis and descriptive statistics were utilized to analyze open-ended responses. Risk group and age differences were evaluated by Fisher’s exact and McNemar’s tests. Results 54 girls (86% of invited), 35 high-risk (65%) and 19 population-risk (35%) completed interviews. The most frequently reported risk for breast cancer was family history/hereditary predisposition (66%). Only 17% of girls were aware of BRCA1/2 genes. The majority (76%) of high-risk girls perceive themselves to be at increased risk for breast cancer, compared to 22% of population-risk girls (p=0.001). Half of girls reported that women can get breast cancer before 20 years old. The majority believe there are things women (70%) and girls (67%) can do to prevent breast cancer. Mother was the most frequently reported source of information for breast cancer among both high-risk (97%) and population-risk (89%) girls. Conclusion In this study, many high-risk girls perceive themselves to be at increased risk for breast cancer, and many girls believe that breast cancer can occur in teens. Yet, most girls believe there are things women and girls can do to prevent breast cancer. Research evaluating the impact of awareness and perceptions of breast cancer risk on psychosocial, health and risk behaviors is needed to develop strategies to optimize responses to cancer risk. PMID:23065030

Geographic Variation in Cancer Incidence among Children and Adolescents in Taiwan (1995-2009).

PubMed

Hung, Giun-Yi; Horng, Jiun-Lin; Yen, Hsiu-Ju; Lee, Chih-Ying; Lee, Yu-Sheng

2015-01-01

Evidence from our recent study suggested that the overall trend for cancer incidence in children and adolescents has been increasing in Taiwan. To analyze geographic variations in this trend, cancer frequencies and incidence rates of disease groups were quantified according to geographic areas among 12,633 patients aged <20 years during 1995-2009 by using the population-based Taiwan Cancer Registry. Three geographic levels were defined, namely county or city, region (Northern, Central, Southern, and Eastern Taiwan), and local administrative area (special municipality, provincial city, county-administered city, township, and aboriginal area). Of the regions, Northern Taiwan had the highest incidence rate at 139.6 per million person-years, followed by Central (132.8), Southern (131.8), and Eastern (128.4) Taiwan. Significantly higher standardized rate ratios (SRRs) were observed in Northern Taiwan (SRR = 1.06, 95% confidence interval [CI] = 1.02-1.10) and at the township level (SRR = 1.07, 95% CI = 1.03-1.11). Of the cities or counties, New Taipei City yielded the highest SRR (1.08), followed by Taipei City (SRR = 1.07). A comparison of the rates in the four regions and the remainder of Taiwan according to cancer type revealed that only the rate of neuroblastomas in Eastern Taiwan was significantly low. Trend analysis showed that the most significant increase in incidence rate was observed at the township level, with an annual percent change of 1.8% during the 15-year study period. The high rate of childhood cancer in Northern Taiwan and at the township level deserves further attention. The potential impacts of environmental factors on the upward trend of childhood cancer incidence rate in townships warrant further investigation.

Perceptions about cancer-related fatigue among cancer patients using Q methodology.

PubMed

Bang, Ho Yoon; Yeun, Eun Ja; Ham, Eunmi; Jeon, Misoon; An, Jeong Hwa

2016-02-01

Cancer-related fatigue (CRF) is a common subjective feeling and disabling symptom complex experienced by patients with cancer. This study aimed to identify the subjective perceptions of Korean patients with cancer about CRF to help the development of basic intervention strategies for these patients. Q methodology was used to examine the subjective perceptions of patients with cancer about CRF. Thirty-one patients with cancer, hospitalized at a university hospital in Seoul, Korea, were recruited into this study and classified 41 selected Q statements using a nine-point scale. Data were analysed using PC-QUANL for Windows. Data analysis revealed that distinct perceptions about CRF do exist among Korean patients with cancer. Three types of perceptions were identified: dominant self-reliance, positive-conformist and self-deprecating exhaustion. These three types explained 53.0% of the variance (40.2%, 8.2% and 4.6%, respectively). This study identified three types of perceptions about CRF among Korean patients with cancer. These findings provide baseline data to develop customised interventions for caring strategies. This study also informs health professionals in other countries about the perceptions of Korean patients with cancer about CRF. Copyright © 2015 Elsevier Ltd. All rights reserved.

[Colorectal cancer in spouses of colorectal cancer patients].

PubMed

Matsumata, T; Shikada, Y; Hasuda, S; Kishihara, F; Suehiro, T; Funahashi, S; Nagamatsu, Y; Iso, Y; Shima, I; Koga, C; Osamura, S; Ueda, M; Furuya, K; Sakino, I

2000-06-01

Married couples share home environments and life style for years. In the case of colorectal cancer, an association with insulin resistance was reported. We determined the presence of the insulin-resistance syndrome (IRS, 1 or more of the following: body mass index of > 25 kg/m2, diabetes, or hyperlipidemia) in 84 colorectal cancer patients, of whom 61 patients (73%) had IRS. The incidence of the distal colorectal cancer, which has been declining in the United States, was significantly higher in the IRS group than in the non-IRS group (75.4 vs 52.2%, p = 0.0400). Some mechanisms may promote the progression of mucosal lesions to invasive cancers in the distal colorectum. There were no significant differences with respect to the age (64.6 +/- 9.4 vs 64.3 +/- 11.3 yr, p = 0.8298), height (159 +/- 9 vs 157 +/- 8 cm, p = 0.1375), and body mass index (22.2 +/- 3.6 vs 22.4 +/- 2.7 kg/m2, p = 0.6364) between the patients and their spouses. In 84 couples in whom colorectal cancer develops at least in one may then not illustrate the nursery rhyme: "Jack Sprat could eat no fat, His wife could eat no lean...". The spouses had been married for an average of 38 years, and in 30 spouses who had been followed in a colorectal cancer screening, 5 developed colorectal cancer. To diminish the incidence of colorectal cancer in Japan, we might advise screening colonoscopy to the spouses of colorectal cancer patients, or déjà vu all over again?

Urinary tract cancer in patients with hereditary non-polyposis colorectal cancer.

PubMed

Zachhau, Peter; Walter, Steen

2012-02-01

Hereditary non-polyposis colorectal cancer (HNPCC), or Lynch syndrome, is characterized as a hereditary colorectal cancer with an increased risk of cancer elsewhere in the body. In the Department of Urology at Odense University Hospital, screening for cancer in the urinary tract has been carried out on 20 patients with HNPCC since November 2001. Clinical records and pathology results were reviewed for all patients during the screening period. During screening two patients without urological symptoms were found to have cancer in the ureter. HNPCC patients with increased risk of urinary tract cancer should be referred for screening of the urinary tract. It is also important to discuss a rational strategy towards the screening of HNPCC patients for urinary tract cancer, and to initiate further investigation into this screening.

Relationship between negative mental adjustment to cancer and distress in thyroid cancer patients.

PubMed

Seok, Jeong-Ho; Choi, Won-Jung; Lee, Yong Sang; Park, Cheong Soo; Oh, Young-Ja; Kim, Jong-Sun; Chang, Hang-Seok

2013-05-01

Previous studies have reported that over a third of cancer patients experience significant psychological distress with diagnosis and treatment of cancer. Mental adjustment to cancer as well as other biologic and demographic factors may be associated with their distress. We investigated the relationship between mental adjustment and distress in patients with thyroid cancer prior to thyroidectomy. One hundred and fifty-two thyroid cancer patients were included in the final analysis. After global distress levels were screened with a distress thermometer, patients were evaluated concerning mental adjustment to cancer, as well as demographic and cancer-related characteristics. A thyroid function test was also performed. Regression analysis was performed to discern significant factors associated with distress in thyroid cancer patients. Our regression model was significant and explained 38.5% of the total variance in distress of this patient group. Anxious-preoccupation and helpless-hopeless factors on the mental adjustment to cancer scale were significantly associated with distress in thyroid cancer patients. Negative emotional response to cancer diagnosis may be associated with distress in thyroid cancer patients awaiting thyroidectomy. Screening of mental coping strategies at the beginning of cancer treatment may predict psychological distress in cancer patients. Further studies on the efficacy of psychiatric intervention during cancer treatment may be needed for patients showing maladaptive psychological responses to cancer.

The Comparison of Depression in Ill and Healthy Adolescents in Iran.

ERIC Educational Resources Information Center

Zarin, H. K.

The development of depression in ill and healthy adolescents is explored and the question of whether hospitalization is accompanied by improvement in depression among cancer and non-cancer patients is addressed. Two studies, one between and one within subjects, longitudinal design with repeated measurement over 4 months, were carried out. MANOVA…

African American cancer patients' pain experience.

PubMed

Im, Eun-Ok; Lim, Hyun-Ju; Clark, Maresha; Chee, Wonshik

2008-01-01

Although very little is known about African American cancer patients' pain experience, a few studies have indicated that their cancer pain experience is unique and somewhat different from that of other ethnic groups. The purpose of the study reported in this article was to explore African American cancer patients' pain experience using an online forum. This study was a qualitative online forum designed from a feminist perspective and conducted among 11 African American cancer patients who were recruited through both Internet and real settings. Nine online forum topics were used to administer the 6-month online forum, and the data were analyzed using thematic analysis. Four themes emerged through the data analysis process. First, participants viewed cancer as a challenge in life that they should fight against. Second, cancer pain was differentiated from ordinary pain because cancer was stigmatized in their culture. Third, participants viewed that African Americans, especially women, were culturally raised to be strong, and this African American cultural heritage inhibited cancer patients from expressing pain and seeking help for pain management. Finally, the findings indicated certain changes in perspectives among African American cancer patients during the disease process, which might make them tolerate pain through praying to God and reading the Bible. Based on the findings, we suggest further studies among diverse groups of African American cancer patients, with a focus on cultural attitudes toward cancer pain and influences of family on cancer pain experience.

Fever in Patients With Cancer.

PubMed

Pasikhova, Yanina; Ludlow, Steven; Baluch, Aliyah

2017-04-01

The definition of fever is flexible and depends on the clinical context. Fever is frequently observed in patients with cancer. Infectious and noninfectious causes of fever in patients with various oncological and hematological malignancies and the usefulness of biomarkers are discussed. To treat patients in a timely manner and to minimize morbidity and mortality, it is paramount that health care professionals determine the cause of fever. The usefulness of biomarkers in febrile patients with cancer continues to be controversial. Fever is frequently seen in patients with cancer and can be associated with a variety of infectious and noninfectious causes. The utility of acute-phase reactants, such as erythrocyte sedimentation rate, C-reactive protein, and procalcitonin, along with a nonsteroidal anti-inflammatory drug challenge should be further evaluated as adjunct tools for the workup of fever in patients with cancer.

The experiences of cancer patients.

PubMed

Alifrangis, C; Koizia, L; Rozario, A; Rodney, S; Harrington, M; Somerville, C; Peplow, T; Waxman, J

2011-12-01

To assess the needs of cancer patients for information about their condition and to understand the psychological impact of their illness. The discussion of prognosis and treatment options in the palliative setting is an important and difficult part of oncology practice. To evaluate this, we examined the experiences of cancer patients of the physical and psychological impact of their disease on their life, and their opinions on the communication of end-of-life decisions and treatment options. A patient questionnaire was designed that encompassed communication regarding treatment and prognosis, quality-of-life attitudes subsequent to cancer diagnosis, end-of-life care and cancer drug funding. One hundred and twenty-five patients with a diagnosis of cancer were asked to participate and 96 questionnaires were completed and available for analysis. The questionnaire consisted of 63 questions and was completed in both an inpatient and outpatient setting. This survey brought to light a number of controversial issues in cancer service provision, highlighting the emotional and psychological changes brought about by a cancer diagnosis. Major concerns of our patients include fear of death and pain, changes in interpersonal relationships and financial constraints. Only 66% of the patients wanted to be given a prognosis by their clinicians and just 70% of the patients recalled being given a detailed prognosis. 11% of the patients were not prepared to undergo palliative treatment. In all, 7% were not prepared to accept treatment for 1 year and 2% for 5 years of life in exchange for the potential side effects of cytotoxic chemotherapy. 12% of the patients would not want to be in possession of the information that they were in the terminal phase of the illness with a short time to live and 16% would not want this discussed with their next of kin. This study informs medical professionals about the importance of tailoring information to the needs of the individual patient, and we

Prevalence and Predictors of Sperm Banking in Adolescents Newly Diagnosed With Cancer: Examination of Adolescent, Parent, and Provider Factors Influencing Fertility Preservation Outcomes.

PubMed

Klosky, James L; Wang, Fang; Russell, Kathryn M; Zhang, Hui; Flynn, Jessica S; Huang, Lu; Wasilewski-Masker, Karen; Landier, Wendy; Leonard, Marcia; Albritton, Karen H; Gupta, Abha A; Casillas, Jacqueline; Colte, Paul; Kutteh, William H; Schover, Leslie R

2017-12-01

Purpose To estimate the prevalence of sperm banking among adolescent males newly diagnosed with cancer and to identify factors associated with banking outcomes. Patients and Methods A prospective, single-group, observational study design was used to test the contribution of sociodemographic, medical, psychological/health belief, communication, and developmental factors to fertility preservation outcomes. At-risk adolescent males (N = 146; age 13.00 to 21.99 years; Tanner stage ≥ 3), their parents, and medical providers from eight leading pediatric oncology centers across the United States and Canada completed self-report questionnaires within 1 week of treatment initiation. Multivariable logistic regression was used to calculate odds ratios (ORs) and 95% CIs for specified banking outcomes (collection attempt v no attempt and successful completion of banking v no banking). Results Among adolescents (mean age, 16.49 years; standard deviation, 2.02 years), 53.4% (78 of 146) made a collection attempt, with 43.8% (64 of 146) successfully banking sperm (82.1% of attempters). The overall attempt model revealed adolescent consultation with a fertility specialist (OR, 29.96; 95% CI, 2.48 to 361.41; P = .007), parent recommendation to bank (OR, 12.30; 95% CI, 2.01 to 75.94; P = .007), and higher Tanner stage (OR, 5.42; 95% CI, 1.75 to 16.78; P = .003) were associated with an increased likelihood of a collection attempt. Adolescent history of masturbation (OR, 5.99; 95% CI, 1.25 to 28.50; P = .025), banking self-efficacy (OR, 1.23; 95% CI, 1.05 to 1.45; P = .012), and parent (OR, 4.62; 95% CI, 1.46 to 14.73; P = .010) or medical team (OR, 4.26; 95% CI, 1.45 to 12.43; P = .008) recommendation to bank were associated with increased likelihood of sperm banking completion. Conclusion Although findings suggest that banking is underutilized, modifiable adolescent, parent, and provider factors associated with banking outcomes were identified and should be targeted in future

Thyroid cancer outcomes in Filipino patients.

PubMed

Kus, Lukas H; Shah, Manish; Eski, Spiro; Walfish, Paul G; Freeman, Jeremy L

2010-02-01

To compare the outcomes of patients having thyroid cancer among Filipinos vs non-Filipinos. Retrospective medical record review. High-volume tertiary referral center in Toronto, Ontario, Canada. A total of 499 patients with thyroid cancer (36 Filipino and 463 non-Filipino) treated at Mount Sinai Hospital from January 1, 1984, to August 31, 2003, with a minimum 5-year follow-up period and a minimum 1.0-cm tumor size. Patients were identified from a thyroid cancer database. Data on patient, tumor, and treatment factors were collected along with outcomes. The presence of thyroid cancer recurrence, the rate of death from disease, and the time to recurrence. The 2 groups were similar for sex, age, history of head and neck radiation exposure, family history of thyroid cancer, follow-up time, tumor size, tumor pathologic findings, presence of tumor multifocality, stage of primary disease, type of thyroid surgery, use of postoperative radioactive iodine therapy, and use of external beam radiation therapy. Filipino patients experienced a thyroid cancer recurrence rate of 25% compared with 9.5% for non-Filipino patients (odds ratio, 3.20; 95% confidence interval, 1.23-7.49; P = .004). On multivariate analysis, the increased risk of thyroid cancer recurrence persisted for Filipino patients (odds ratio, 6.99; 95% confidence interval, 2.31-21.07; P < .001). No significant differences were noted between Filipino patients and non-Filipino patients regarding the rate of death from disease (5.6% vs 1.9%) and the time to recurrence (52.6 vs 53.1 months). Filipino patients have a significantly higher risk of thyroid cancer recurrence compared with non-Filipino patients. However, no significant difference was noted in the time to recurrence or the rate of death from disease. These findings justify a more aggressive initial management and follow-up regimen for Filipino patients with thyroid cancer.

Relationships among therapy-related symptoms, depressive symptoms, and quality of life in Chinese children hospitalized with cancer: an exploratory study.

PubMed

Li, Ho Cheung William; Williams, Phoebe D; Lopez, Violeta; Chung, Joyce Oi Kwan; Chiu, Sau Ying

2013-01-01

Recent advances in cancer screening and treatment have resulted in a decrease in mortality rates in children and adolescents. However, despite the improved prognosis, the course of cancer treatment continues to be a very stressful experience in the life of a child. The objectives of the study were to assess the occurrence and severity of treatment-related symptoms manifested by children and adolescents undergoing active cancer treatment and to examine the relationships between therapy-related symptoms, depressive symptoms, and quality of life of these pediatric patients. A cross-sectional study design was used, and 135 Hong Kong Chinese children (9- to 16-year-olds) who were admitted for treatment of cancer in a pediatric oncology unit were invited to participate in the study. Results indicated that children and adolescents receiving combined cancer treatment generally experienced greater symptom occurrence and severity. In addition, children reporting greater symptom occurrence and severity experienced higher levels of depression and a lower level of quality of life. The study revealed that therapy-related symptoms are a strong predictor of quality of life of children and adolescents hospitalized for cancer treatment. Cancer and its treatments significantly affect the psychosocial well-being and quality of life of children and adolescent hospitalized for cancer care. Therapy-related symptoms can be a useful indicator for screening those pediatric patients who are likely to exhibit psychosocial distress or are at high risk of depression. It is essential for nurses to be sensitive and knowledgeable about the therapy-related symptoms of cancer treatment and their effects on children and adolescents to promote the psychosocial well-being of these patients and enhance their quality of life.

The economic burden of caregiving on families of children and adolescents with cancer: a population-based assessment.

PubMed

Pagano, Eva; Baldi, Ileana; Mosso, Maria Luisa; di Montezemolo, Luca Cordero; Fagioli, Franca; Pastore, Guido; Merletti, Franco

2014-06-01

Childhood cancer represents a relevant economic burden on families. The preferred tool to investigate family expenditure is the retrospective questionnaire, which is subject to recall errors and selection bias. Therefore, in the present study the economic burden of caregiving on families of children and adolescents (0-19 years of age) with cancer was analysed using administrative data as an alternative to retrospective questionnaires. Incident cases of cancer diagnosed in children and adolescents in 2000-2005 (N = 917) were identified from the Piedmont Childhood Cancer Registry and linked to available administrative databases to identify episodes of care during the 3 years after diagnosis (N = 13,433). The opportunity cost of informal caregiving was estimated as the value of the time spent by one of the parents, and was assumed to be equal to the number of days during which the child received inpatient care, day-care or outpatient radiotherapy. Factors affecting the level of economic burden of caregiving on families were analysed in a multivariable model. The economic burden of caregiving increased when care was supplied at the Regional Referral Centre, or when treatment complexity was high. Families with younger children had a higher level of economic burden of caregiving. Leukaemia required a higher family commitment than any other cancer considered. Estimates of the economic burden of caregiving on families of children and adolescents with cancer derived from administrative data should be considered a minimum burden. The estimated effect of the covariates is informative for healthcare decision-makers in planning support programmes. © 2013 Wiley Periodicals, Inc.

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.

A review of Canadian health care and cancer care systems.

PubMed

Sutcliffe, Simon B

2011-05-15

Canada is a westernized, market-economy nation with a publicly funded health care and cancer control system and has health indices reflective of a high-resource economy. Provision of health services is in accord with the Canada Health Act and is implemented through federal, provincial, and territorial relations wherein federal funding partly provides support for the provincial/territorial delivery of health services. Cancer services are provided within the acute health care system with dedicated entities existing in parallel in most provinces to provide services specific to the diagnosis, treatment, and support of cancer patients. Interprovincial and territorial collaboration to enhance and facilitate optimal cancer system performance is enabled through the Canadian Partnership Against Cancer (the Canadian national cancer control initiative). Adolescent and young adult (AYA) cancer patients use both the pediatric and adult cancer systems. There is recognition, however, that although AYA patients are numerically a small portion of all cancer patients, the negative personal, societal, and socioeconomic impacts of potential years of life lost are substantial and can be lessened through attention to awareness, education, redesign of care and care pathways, quality of life, developmental aspects related to adolescent-teen-adult transitions, continuity of care, and surveillance across pediatric and adult settings. Appropriate solutions need to be established within the framework of the Canadian Health Service by innovative rethinking and realignment of system capacity and performance to the special needs of AYA cancer patients. © 2011 American Cancer Society

Quality of life of children and adolescents with cancer: revision of studies literature that used the Pediatric Quality Of Life Inventory.

PubMed

Queiroz, Débora Milena Farias; Amorim, Maria Helena Costa; Zandonade, Eliana; Miotto, Maria Helena Monteiro de Barros

2015-01-01

To assess the quality of life of children and adolescents with cancer of studies that applied the Pediatric Quality of Life Inventory 3.0 Cancer Module. The study was carried out on the basis of data Scopus Web of Science, BIREME, EBSCO host and Psychoinfo of articles in Spanish, English and Portuguese, and published from 1998 to 2013 that used the Pediatric Quality of life Inventory 3.0 Cancer Module. 21 articles were selected, of which 47.6% were carried out in America, and 61.9% of editions comprehended from 2011 to 2013. The scores variation by dimensions and in general was probably related for the selection of comparison groups, as the diversity of inclusion criteria and variants may be observed for the analysis in each study. The existence of a standard dimension could not be verified either for children ́s /adolescents reports or for parents. It is concluded that the scores averages by dimensions in general have not achieved values below 30 and the largest scores by dimension are above 80. It is suggested that the treatment anxiety dimension in children ́s and adolescents ́s reports may have obtained the largest scores within each study, that is lesser than the difficulty of the children and adolescents in face of the treatment and cancer. Nursing becomes a constant presence in the life of children and adolescents with cancer and it may provide a better quality of life for developing nursing activities and the team may demistify, clarify and help in all phases of the illness and treatment.

Electronic protocol of respiratory physical therapy in patients with idiopathic adolescent scoliosis.

PubMed

Cano, Danila Vieira Baldini; Malafaia, Osvaldo; Alves, Vera Lúcia dos Santos; Avanzi, Osmar; Pinto, José Simão de Paula

2011-01-01

To create a clinical database of respiratory function in patients with adolescent idiopathic scoliosis; computerize and store this clinical data through the use of a software; incorporate this electronic protocol to the SINPE© (Integrated Electronic Protocols System) and analyze a pilot project with interpretation of results. From the literature review a computerized data bank of clinical data of postural deviations was set up (master protocol). Upon completion of the master protocol a specific protocol of respiratory function in patients with adolescent idiopathic scoliosis was designed and a pilot project was conducted to collect and analyze data from ten patients. It was possible to create the master protocol of postural deviations and the specific protocol of respiratory function in patients with adolescent idiopathic scoliosis. The data collected in the pilot project was processed by the SINPE ANALYZER©, generating charts and statistics. The establishment of the clinical database of adolescent idiopathic scoliosis was possible. Computerization and storage of clinical data using the software were viable. The electronic protocol of adolescent idiopathic scoliosis could be incorporated into the SINPE© and its use in the pilot project was successful.

Who decides? Decision making and Fertility Preservation in Teens with Cancer: A Review of the literature

PubMed Central

Quinn, Gwendolyn P.; Murphy, Devin; Knapp, Caprice; Stearsman, Daniel K.; Bradley-Klug, Kathy L.; Sawczyn, Kelly; Clayman, Marla L.

2011-01-01

Purpose The knowledge that cancer treatment may impair fertility in pediatric populations is an emerging aspect of quality of life in this population. However, decision making and use of fertility preservation among adolescent cancer patients and their families has not been well studied. This review summarizes the available literature on aspects of decision making and fertility preservation in adolescent cancer patients. Methods An electronic search was performed to identify peer reviewed studies published between 1999-2009 using key MESH terms and inclusion criteria. Inclusion criteria limited eligible studies to those that focused on adolescent decision-making in cancer treatment or fertility preservation, fertility concerns in pediatric oncology, capacity for decision-making, and health decision making in pediatrics. Studies were excluded that did not meet at least one of these criterion. Results A total of 29 articles were reviewed and summarized. Three categories of results were seen: a focus on adolescent decision making in oncology, decision making in chronic illness, and decision making in cancer related infertility and preservation. Conclusion The majority of studies showed adolescents have a strong desire to participate in decisions about their cancer treatment and many have concerns regarding their future fertility although barriers often prevented these discussions. More research is needed to explore the role of teens and parents in decisions about fertility in relation to cancer treatment. PMID:21939862

Survival Analysis of Patients with Interval Cancer Undergoing Gastric Cancer Screening by Endoscopy

PubMed Central

Hamashima, Chisato; Shabana, Michiko; Okamoto, Mikizo; Osaki, Yoneatsu; Kishimoto, Takuji

2015-01-01

Aims Interval cancer is a key factor that influences the effectiveness of a cancer screening program. To evaluate the impact of interval cancer on the effectiveness of endoscopic screening, the survival rates of patients with interval cancer were analyzed. Methods We performed gastric cancer-specific and all-causes survival analyses of patients with screen-detected cancer and patients with interval cancer in the endoscopic screening group and radiographic screening group using the Kaplan-Meier method. Since the screening interval was 1 year, interval cancer was defined as gastric cancer detected within 1 year after a negative result. A Cox proportional hazards model was used to investigate the risk factors associated with gastric cancer-specific and all-causes death. Results A total of 1,493 gastric cancer patients (endoscopic screening group: n = 347; radiographic screening group: n = 166; outpatient group: n = 980) were identified from the Tottori Cancer Registry from 2001 to 2008. The gastric cancer-specific survival rates were higher in the endoscopic screening group than in the radiographic screening group and the outpatients group. In the endoscopic screening group, the gastric cancer-specific survival rate of the patients with screen-detected cancer and the patients with interval cancer were nearly equal (P = 0.869). In the radiographic screening group, the gastric cancer-specific survival rate of the patients with screen-detected cancer was higher than that of the patients with interval cancer (P = 0.009). For gastric cancer-specific death, the hazard ratio of interval cancer in the endoscopic screening group was 0.216 for gastric cancer death (95%CI: 0.054-0.868) compared with the outpatient group. Conclusion The survival rate and the risk of gastric cancer death among the patients with screen-detected cancer and patients with interval cancer were not significantly different in the annual endoscopic screening. These results suggest the potential of

Diagnostic and Treatment Patterns Among Children, Adolescents, and Young Adults with Thyroid Cancer in Ontario: 1992-2010.

PubMed

Pole, Jason D; Zuk, Aleksandra M; Wasserman, Jonathan D

2017-08-01

Thyroid carcinoma is rare in young children, with a sharp increase in incidence among adolescents and young adults between 15 and 29 years of age. The incidence of thyroid carcinoma is increasing worldwide. Limited prospective population-based data are available to describe diagnostic and treatment practices in this age group. This study undertook a population-based review of thyroid carcinoma among 0- to 29-year-old individuals in Ontario, Canada, utilizing linked administrative data to describe the demographic and care patterns over nearly two decades. Cases from the Ontario Cancer Registry were identified and linked to administrative data sources at the Institute for Clinical Evaluative Sciences. Cases diagnosed prior to a patient's 30th birthday between 1992 and 2010 were considered eligible. Billing records identified ultrasonography, fine-needle aspiration biopsy, radioiodine therapy, and surgical approach. A total of 2552 patients aged 0-29 years were diagnosed with thyroid carcinoma during the study period. There was a 2.1-fold increase in standardized incidence rate over the 19 years of this study. Thyroid carcinoma was diagnosed subsequent to a prior malignancy in 47/2552 patients at a median interval of 11.6 years after initial cancer diagnosis. Seventeen individuals developed a second malignancy after treatment for thyroid carcinoma. Most patients (90.44%) underwent preoperative ultrasound (ranging from 1 to 13 preoperative studies). Preoperative thyroid scintigraphy was used in 44% of patients, with a significant decline in usage over the study period. Fine-needle aspiration biopsy usage rose by 20% over the study period, although 26% of patients had no biopsy prior to surgery. Primary total thyroidectomy followed by two-stage thyroidectomy were the most frequently performed procedures, and 56% of patients received therapeutic radioiodine. This study establishes a foundation of diagnostic and practice patterns over nearly two decades. The study

Patients' experiences with navigation for cancer care.

PubMed

Carroll, Jennifer K; Humiston, Sharon G; Meldrum, Sean C; Salamone, Charcy M; Jean-Pierre, Pascal; Epstein, Ronald M; Fiscella, Kevin

2010-08-01

We examined how navigation, defined as the assessment and alleviation of barriers to adequate health care, influences patients' perspectives on the quality of their cancer care. We conducted post-study patient interviews from a randomized controlled trial (usual care vs. patient navigation services) from cancer diagnosis through treatment completion. Patients were recruited from 11 primary care, hospital and community oncology practices in New York. We interviewed patients about their expectations and experience of patient navigation or, for non-navigated patients, other sources of assistance. Thirty-five patients newly diagnosed with breast or colorectal cancer. Valued aspects of navigation included emotional support, assistance with information needs and problem-solving, and logistical coordination of cancer care. Unmet cancer care needs expressed by patients randomized to usual care consisted of lack of assistance or support with childcare, household responsibilities, coordination of care, and emotional support. Cancer patients value navigation. Instrumental benefits were the most important expectations for navigation from navigated and non-navigated patients. Navigated patients received emotional support and assistance with information needs, problem-solving, and logistical aspects of cancer care coordination. Navigation services may help improve cancer care outcomes important to patients by addressing fragmented, confusing, uncoordinated, or inefficient care. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

Patients' Experiences with Navigation for Cancer Care

PubMed Central

Carroll, Jennifer K.; Humiston, Sharon G.; Meldrum, Sean C.; Salamone, Charcy M.; Jean-Pierre, Pascal; Epstein, Ronald M.; Fiscella, Kevin

2010-01-01

Objective We examined how navigation, defined as the assessment and alleviation of barriers to adequate health care, influences patients' perspectives on the quality of their cancer care. Methods We conducted post-study patient interviews from a randomized controlled trial (usual care vs. patient navigation services) from cancer diagnosis through treatment completion. Patients were recruited from 11 primary care, hospital and community oncology practices in New York. We interviewed patients about their expectations and experience of patient navigation or, for non-navigated patients, other sources of assistance. Results Thirty-five patients newly diagnosed with breast or colorectal cancer. Valued aspects of navigation included emotional support, assistance with information needs and problem-solving, and logistical coordination of cancer care. Unmet cancer care needs expressed by patients randomized to usual care consisted of lack of assistance or support with childcare, household responsibilities, coordination of care, and emotional support. Conclusion Cancer patients value navigation. Instrumental benefits were the most important expectations for navigation from navigated and non-navigated patients. Navigated patients received emotional support and assistance with information needs, problem-solving, and logistical aspects of cancer care coordination. Practice Implications Navigation services may help improve cancer care outcomes important to patients by addressing fragmented, confusing, uncoordinated, or inefficient care. PMID:20006459

Cervical cancer screening in adolescents: an evidence-based internet education program for practice improvement among advanced practice nurses.

PubMed

Choma, Kim; McKeever, Amy E

2015-02-01

The literature reports great variation in the knowledge levels and application of the recent changes of cervical cancer screening guidelines into clinical practice. Evidence-based screening guidelines for the prevention and early detection of cervical cancer offers healthcare providers the opportunity to improve practice patterns among female adolescents by decreasing psychological distress as well as reducing healthcare costs and morbidities associated with over-screening. The purpose of this pilot intervention study was to determine the effects of a Web-based continuing education unit (CEU) program on advanced practice nurses' (APNs) knowledge of current cervical cancer screening evidence-based recommendations and their application in practice. This paper presents a process improvement project as an example of a way to disseminate updated evidence-based practice guidelines among busy healthcare providers. This Web-based CEU program was developed, piloted, and evaluated specifically for APNs. The program addressed their knowledge level of cervical cancer and its relationship with high-risk human papillomavirus. It also addressed the new cervical cancer screening guidelines and the application of those guidelines into clinical practice. Results of the study indicated that knowledge gaps exist among APNs about cervical cancer screening in adolescents. However, when provided with a CEU educational intervention, APNs' knowledge levels increased and their self-reported clinical practice behaviors changed in accordance with the new cervical cancer screening guidelines. Providing convenient and readily accessible up-to-date electronic content that provides CEU enhances the adoption of clinical practice guidelines, thereby decreasing the potential of the morbidities associated with over-screening for cervical cancer in adolescents and young women. © 2014 Sigma Theta Tau International.

Second cancers in patients with male breast cancer: a literature review.

PubMed

Grenader, Tal; Goldberg, Anthony; Shavit, Linda

2008-06-01

The risk of second malignancies among female breast cancer patients has been studied for decades. In contrast, very little is known about second primary tumors in men. Risk factors for breast cancer in men, including genetic, hormonal and environmental factors, provide parallels to the etiology of breast cancer in women. This review considers the literature related to the risk of developing a second cancer in patients with male breast cancer. A systematic review of the literature between 1966 and 2007 was conducted and acceptable articles used for analysis. All retrieved articles were screened to identify any papers that had been missed. Studies were included if they discussed the risk of subsequent malignancy in patients with male breast cancer. Patients with history of male breast cancer have an increased risk of a second ipsilateral, or contralateral breast cancer (standardized incidence ratio 30-110). The risk of subsequent contralateral breast cancer was highest in men under 50 years of age at the time of the diagnosis of the initial cancer. The data on non-breast second primary cancers is diverse. One study has suggested an increased incidence of cancers of the small intestine, prostate, rectum and pancreas, and of non-melanoma skin cancer and myeloid leukaemia. Other investigators did not find an increase in the overall risk of subsequent cancer development in men diagnosed initially with primary breast cancer. Although sarcoma, lung and esophageal cancers are well recognized complications of radiation therapy for female breast cancer, there is no evidence for the association of these cancers following radiation therapy in male breast cancer. Although the incidence of second primary cancer in patients with primary male breast cancer requires further study, male breast cancer survivors should probably undergo periodic screening for the early detection of second breast cancers and other adverse health effects.

Barriers to cancer care, perceived social support, and patient navigation services for Korean breast cancer patients.

PubMed

Lim, Jung-Won

2015-01-01

The present study aimed to examine the relationships among barriers to cancer care, perceived social support, and patient navigation services (PNS) for Korean breast cancer patients. For Korean breast cancer patients, PNS are comprised of five services, including emotional, financial, information, transportation, and disease management. The study findings demonstrated that transportation and disease management barriers were directly associated with PNS, whereas emotional and financial barriers were indirectly associated with PNS through perceived social support. The current study provides a preliminary Korean patient navigation model to identify how barriers to cancer care can be reduced through social support and PNS.

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

Cancer.gov

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

Febrile neutropaenia in cancer patients.

PubMed

Walwyn, M; Nicholson, A; Lee, M G; Wharfe, G; Frankson, M A

2010-03-01

Febrile neutropaenia is a common complication of chemotherapy in cancer patients. Empirical antibiotic regimes are based on the epidemiological characteristics of bacterial isolates globally and locally. This study retrospectively reviewed all cases of febrile neutropaenia in patients with confirmed cancer admitted at the University Hospital of the West Indies in the four-year period between, January 1, 2003 and December 31, 2006 and who received chemotherapy. Cases were identified from blood culture records and hospital charts which were reviewed to determine the aetiological agents causing bacteraemia, their antimicrobial susceptibilities and clinicalfeatures. These cases were compared with non-neutropaenic cancer patients admitted with fever. A total of 197 febrile episodes in cancer patients were reviewed. Thirty-seven per cent had febrile neutropaenia while 62% were non-neutropaenic. Acute myeloid leukaemia was the most common haematological malignancy and the most common solid tumour was breast cancer. Twenty-six per cent of patients had a positive blood culture. In febrile neutropaenic patients, Escherichia coli was the most common organism isolated followed by coagulase-negative staphylococci while in non-neutropaenic patients, coagulase-negative staphylococci was most common. Acinetobacter infections was prominent in non-neutropaenic patients but absent in neutropaenic patients. More than one organism was cultured in 9 neutropaenic and 18 non-neutropaenic patients. Mortality was 10.8% in neutropaenic and 24.4% in non-neutropaenic patients. Gram-negative organisms are the predominant isolates in febrile neutropaenic episodes in this cohort of patients. Non-neutropaenic patients had an increased mortality with an increase in Acinetobacter infections and multiple isolates.

The care of adolescents and young adults with cancer: results of the ESMO/SIOPE survey.

PubMed

Saloustros, Emmanouil; Stark, Daniel P; Michailidou, Kyriaki; Mountzios, Giannis; Brugieres, Laurence; Peccatori, Fedro Alessandro; Jezdic, Svetlana; Essiaf, Samira; Douillard, Jean-Yves; Bielack, Stefan

2017-01-01

Adolescents and young adults (AYA) with cancer require dedicated clinical management and care. Little is known about the training and practice of European healthcare providers in regard to AYA and the availability of specialised services. A link to an online survey was sent to members of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). The link was also sent to ESMO National Representatives and circulated to other European oncology groups. Questions covered the demographics and clinical training of respondents, their definition of AYA, education about AYA cancer, access to specialised clinical and supportive care, research and further education. Data from Europe were analysed by region. Three hundred tweenty two questionnaires were submitted and we focused on data from the 266 European healthcare professionals. Responses revealed considerable variation both within and between countries in the definition of AYA. Over two-thirds of respondents did not have access to specialised centres for AYA (67%), were not aware of research initiatives focusing on AYA with cancer (69%) and had no access to specialist services for managing the late effects of treatment (67%). The majority of the respondents were able to refer AYA patients to professional psychological support and specialised social workers. However, more than half had no access to an age-specialised nurse or specialised AYA education. Overall, 38% of respondents reported that their AYA patients did not have access to fertility specialists. This figure was 76% in Eastern Europe. Lack of specialised AYA care was particularly evident in Eastern and South-Eastern Europe. There is important underprovision and inequity of AYA cancer care across Europe. Improving education and research focused on AYA cancer care should be a priority.

Support after the completion of cancer treatment: perspectives of Australian adolescents and their families.

PubMed

Wakefield, C E; McLoone, J; Butow, P; Lenthen, K; Cohn, R J

2013-07-01

Young people recovering from cancer may lack adequate support post-treatment, yet little is known about the types of support and information young Australians and their families need. This study investigated adolescent/young adult cancer survivors' and their families' perceptions of care and support needs after completing cancer treatment. Seventy semi-structured interviews were conducted with 19 survivors (mean age 16.1 years), 21 mothers, 15 fathers and 15 siblings. Interviews were recorded, transcribed and analysed using the conceptual framework of Miles and Huberman. Post-treatment, participants regarded medical staff positively but were reluctant to ask for their help fearing it may deflect resources away from patients still receiving treatment. Appraisals of social workers' and psychologists' support post-treatment were mixed. Formal emotional support was rarely accessed and participants reported that any additional funds should be directed to greater psychological support in this period. Participants also reported the need for additional financial support post-treatment. Clinicians need to be aware that while young people and their families may not demand support post-treatment, they may 'suffer in silence' or burden family members and friends with the responsibility of providing emotional support, though they may be experiencing distress also. © 2013 John Wiley & Sons Ltd.

Identifying and Understanding the Gaps in Care Experienced by Adolescent and Young Adult Cancer Patients at the University of Iowa Hospitals and Clinics.

PubMed

Mobley, Erin M; Foster, Kristin J; Terry, William W

2018-06-20

In an effort to counteract the differences in improvement in survival rates of adolescents and young adults (AYA), compared to other age groups with cancer, the University of Iowa Hospitals and Clinics established an AYA cancer program. This study was conducted to gather feedback from AYAs in an effort to generate actionable data for program development. The target population included patients aged 13-31 treated for malignancy in one of the following disease sites: central nervous system, leukemia, lymphoma, neuroendocrine, sarcoma, and thyroid. A series of four focus groups was held to identify and describe gaps in care and provide suggestions for program development. A convergent parallel mixed-methods design was used. Qualitative data were derived from focus group discussion and free-response survey questions, while quantitative data were derived from objective survey questions and electronic medical record data. Across the four focus groups, 24 different AYAs participated, ranging from 8 to 19 individuals per session. Topics discussed included the following: communication, treatment experience, and overall AYA program; finances, work and school, and late effects; relationships, emotions, and spirituality; and body image, infertility, sexuality, risky behavior, and suicide. The results of the analyses corroborated what makes AYAs different from other age groups. The primary theme identified was the unique relationships of AYAs, which can be thought of along a continuum. Information obtained from these analyses has been used to inform specific projects within the development of the AYA program to address patient-identified gaps. For AYAs, the importance of relationships along a continuum should be considered when developing an AYA program, in addition to potential policy or health service research utilization in the future.

Fatigue in children and adolescents with cancer from the perspective of health professionals 1

PubMed Central

da Silva, Michele Cristina Miyauti; Lopes, Luís Carlos; Nascimento, Lucila Castanheira; de Lima, Regina Aparecida Garcia

2016-01-01

ABSTRACT Objective: to investigate health professionals' knowledge about the concept, assessment and intervention in fatigue in children and adolescents with cancer. Method: exploratory study with qualitative approach, with 53 health professionals (10 nurses, 33 assistant nurses, 3 physicians, 3 nutritionists, 2 psychologists and 2 physical therapists). Semi structured interviews were held, which were recorded and analyzed by means of inductive thematic content analysis. Results: the data were organized around three themes: knowledge of health professionals about fatigue; identification of fatigue and interventions to relieve fatigue. Conclusion: the results indicate the health professionals' limited knowledge about fatigue, as well as the lack of investment in their training and continuing education. Most of all, the lack of research on the theme in the Brazilian context remains a barrier to support improvements in care for this symptom in children and adolescents with cancer. PMID:27579937

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

PubMed

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

2017-10-01

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

Le cancer différencié de la thyroïde chez l’enfant et l’adolescent: à propos de 22 cas

PubMed Central

Anajar, Said; Tatari, Mohammed; Lakhbal, Adil; Abada, Reda; Rouadi, Sami; Roubal, Mohammed; Mahtar, Mohammed

2017-01-01

L’obectif était de mettre en relief les particularités du cancer de la thyroïde chez l’enfant et l’adolescent, et d’évaluer nos résultats par rapport à la littérature internationale a travers une série de cas la plus représentatif au Maroc: 22 cas. C'est une étude rétrospective descriptive des patients atteints de cancer différencié de la thyroïde, hospitalisés au service d’ORL et de Chirurgie Cervico-faciale de L’hopital 20 Août de Casablanca-Maroc, sur la période qui s’étend de Janvier 1995 à Mars 2015. Nous avons recueilli les données relatives à 22 cas, qui répondaient à nos critères d’inclusion. L’âge moyen de nos patients était de 14 ans, avec une sex-ratio 3,4, la plupart de nos patients ont consulté pour un nodule thyroïdien, associé dans 22,7% des cas à une adénopathie cervicale, et dans 9,1% à des signes de compression. L’ensemble des patients ont bénéficié d’une thyroïdectomie totale, suivie d’un curage ganglionnaire dans 31,82%. Le diagnostic de cancer thyroïdien a reposé sur l’examen anatomopathologique de la pièce opératoire, qui a objectivé un carcinome papillaire dans 95,4% des cas, et un carcinome vésiculaire dans 4,5%. Le traitement par l’iode radioactif 131 a été réalisé dans 100% des cas. Par la suite tous nos patients ont été mis sous hormonothérapie thyroïdienne. Une surveillance étroite et régulière a permis de détecter des métastases ganglionnaires chez 3 patients, et les métastases à distance chez 4 patients. Le cancer différencié de la thyroïde de l’enfant et l’adolescent est une entité rare mais agressive, son traitement se base sur la chirurgie, associée à l’irathérapie donnant un pronostic excellent. PMID:29255541

The lived experiences of aboriginal adolescent survivors of childhood cancer during the recovering process in Taiwan: A descriptive qualitative research.

PubMed

Cheng, Ya-Chun; Huang, Chu-Yu; Wu, Wei-Wen; Chang, Shu-Chuan; Lee-Hsieh, Jane; Liang, Shu-Yuan; Cheng, Su-Fen

2016-06-01

The purpose of this study was to understand the experiences of Taiwanese aboriginal adolescent survivors of childhood cancer during the process of recovery. A snowball sampling strategy was used to recruit participants from the pediatrics unit of a medical center in the eastern region of Taiwan. In-depth interviews were conducted with 11 aboriginal adolescent childhood cancer survivors. The data were analyzed using content analysis. The results revealed three major themes with subthemes within each theme. The three major themes are: roots of resilience, transformation and growth, and meaning of traditional rituals for resilience. The three subthemes within "roots of resilience" include: "feeling secure through company of family, care and financial support", "receiving support from the important others and religion" and "learning to self-adjust". The three subthemes revealed within "transformation and growth" are: restructuring the relationship with peers, "appreciating parents' hard work", and "learning to seize the moment". The two subthemes within "meaning of traditional rituals to resilience" include: "feeling blessed with the power of ancestral spirits" and "strengthening ethnic identity". This study provided insight into the experiences of aboriginal adolescents as they recovered from childhood cancer. The experiences made positive impacts by inspiring growth in maturity and consolidating aboriginal ethnic identity. The adolescents were empowered by support from family, friends and clansmen, and by their participation in aboriginal rituals. As healthcare professionals care for the aboriginal adolescents, it is critical to consider this culturally and ethnically specific knowledge/experience of surviving cancer to improve quality of care. Copyright © 2016 Elsevier Ltd. All rights reserved.

Cancer-related information needs and cancer’s impact on control over life influence health-related quality of life among adolescents and young adults with cancer

PubMed Central

DeRouen, Mindy C.; Smith, Ashley Wilder; Tao, Li; Bellizzi, Keith M.; Lynch, Charles F.; Parsons, Helen M.; Kent, Erin E.; Keegan, Theresa H. M.

2015-01-01

Objective Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). Methods We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007–2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). Results Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). Conclusions AYA patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population. PMID:25611943

Cardiopulmonary resuscitation in palliative care cancer patients.

PubMed

Kjørstad, Odd Jarle; Haugen, Dagny Faksvåg

2013-02-19

The criteria for refraining from cardiopulmonary resuscitation in palliative care cancer patients are based on patients' right to refuse treatment and the duty of the treating personnel not to exacerbate their suffering and not to administer futile treatment. When is cardiopulmonary resuscitation futile in these patients? Systematic literature searches were conducted in PubMed for the period 1989-2010 on the results of in-hospital cardiopulmonary resuscitation in advanced cancer patients and on factors that affected the results of CPR when special mention was made of cancer. The searches yielded 333 hits and 18 included articles: four meta-analyses, eight retrospective clinical studies, and six review articles. Cancer patients had a poorer post-CPR survival than non-cancer patients. Survival declined with increasing extent of the cancer disease. Widespread and therapy-resistant cancer disease coupled with a performance status lower than WHO 2 or a PAM score (Pre-Arrest Morbidity Index) of above 8 was regarded as inconsistent with survival after cardiopulmonary resuscitation. Cardiopulmonary resuscitation is futile for in-hospital cancer patients with widespread incurable disease and poor performance status.

[Pain experiences and life satisfaction of young adult cancer patients].

PubMed

Geue, K; Schmidt, R; Sender, A; Friedrich, M

2017-02-01

After having completed medical treatment cancer patients often suffer from pain that can impair the quality of life. While young adolescents and adults (AYA) with cancer have become the focus of research during recent years, literature on the prevalence, quality and relief of pain in AYA patients is lacking. This study investigated psychosocial data on pain experienced by AYA patients (e.g. prevalence, type, distress, anxiety and need for support) and the association with the quality of life. Standardized and validated questionnaires were used for assessing pain and quality of life in AYA patients defined as the patient group between 18 and 39 years. Calculated regression models were summarized in a pathway model. Out of 117 AYA patients (66 % women) 45 (39 %) suffered from pain and of these 73 % felt impaired due to the pain, 58 (50 %) had a fear of pain and 21 (20 %) reported a need for support. The severity of pain had a negative influence on physical functioning (β = -0.335) and health-related satisfaction (β = -0.415). Regarding the quality of life, 105 patients (90 %) were overall satisfied with their life. Dissatisfaction was reported in the areas of occupation (39.34 %), ability to relax (36.31 %), physical performance (34.29 %), income (32.27 %) and partnership/sexuality (29.25 %). This study provides evidence that pain plays a relevant role for AYA patients after the end of medical treatment. A substantial proportion of AYA patients reported the need for support so that the question arises whether medical pain management is sufficient, particularly as pain was associated with impairment and strongly negatively associated with health-related satisfaction.

Cocreated Smartphone App to Improve the Quality of Life of Adolescents and Young Adults with Cancer (Kræftværket): Protocol for a Quantitative and Qualitative Evaluation

PubMed Central

Elsbernd, Abbey; Hjerming, Maiken; Visler, Camilla; Hjalgrim, Lisa Lyngsie; Niemann, Carsten Utoft; Boisen, Kirsten

2018-01-01

Background Adolescents and young adults with cancer face significant challenges during the course of their medical treatment and recovery from illness. Many adolescents and young adults struggle with long-term complications in the physical, psychosocial, economic, and academic domains. Mobile health (mHealth) interventions provide an innovative platform for delivering supportive care, particularly through the utilization of apps on smartphones and tablets. To create a successful mHealth intervention for adolescents and young adults, youth input and feedback is essential. The process of cocreation, in which the target app user has a direct role in dictating design and function, was utilized to create the prototype smartphone app for adolescents and young adults with cancer, “Kræftværket.” Objective The objective of this paper is to describe the protocol for the evaluation of the Kræftværket app, a prototype app designed via cocreation, to support and improve health-related quality of life for adolescents and young adults with cancer. Methods The Kræftværket app has three primary features, (1) a symptom and activity diary, (2) a supportive communication network between app users, and (3) a “one-stop shop” information bank with practical information as well as links to patient organizations and other resources. The app will be evaluated in two phases, a pilot test and an implementation test. In the pilot test, the app will be launched to a test group of 20 adolescents and young adults aged 15 to 29 years, selected for equal representation amongst age group and treatment status. Patients will be allowed to utilize the app over the course of six weeks and will complete a baseline and follow-up European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) health-related quality of life inventory. In addition, participant focus group interviews will be conducted according to a semistructured interview guide

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.

Psychotherapy for cancer patients.

PubMed

Chong Guan, Ng; Mohamed, Salina; Kian Tiah, Lai; Kar Mun, Teoh; Sulaiman, Ahmad Hatim; Zainal, Nor Zuraida

2016-07-01

Objective Psychotherapy is a common non-pharmacological approach to help cancer patients in their psychological distress. The benefit of psychotherapies was documented, but the types of psychotherapies proposed are varied. Given that the previous literature review was a decade ago and no quantitative analysis was done on this topic, we again critically and systematically reviewed all published trials on psychotherapy in cancer patients. Method We identified 17 clinical trials on six types of psychotherapy for cancer patients by searching PubMed and EMBASE. Result There were four trials involved adjunct psychological therapy which were included in quantitative analysis. Each trial demonstrated that psychotherapy improved the quality of life and coping in cancer patients. There was also a reduction in distress, anxiety, and depression after a psychological intervention. However, the number and quality of clinical trials for each type of psychotherapy were poor. The meta-analysis of the four trials involved adjunct psychological therapy showed no significant change in depression, with only significant short-term improvement in anxiety but not up to a year-the standardized mean differences were -0.37 (95% confidence interval (CI) = -0.57, -0.16) at 2 months, -0.21 (95% CI = -0.42, -0.01) at 4 months, and 0.03 (95 % CI = -0.19, 0.24) at 12 months. Conclusion The evidence on the efficacy of psychotherapy in cancer patients is unsatisfactory. There is a need for more rigorous and well-designed clinical trials on this topic.

Effects of treatment on fertility in long-term survivors of childhood or adolescent cancer

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

Byrne, J.; Mulvihill, J.J.; Myers, M.H.

In a retrospective cohort study of survivors of cancer and of controls, we estimated the risk of infertility after treatment for cancer during childhood or adolescence. We interviewed 2283 long-term survivors of childhood or adolescent cancer diagnosed in the period from 1945 through 1975, who were identified at five cancer centers in the United States. Requirements for admission to the study were diagnosis before the age of 20, survival for at least five years, and attainment of the age of 21. In addition, 3270 controls selected from among the survivors' siblings were interviewed. Cox regression analysis showed that cancer survivorsmore » who married and were presumed to be at risk of pregnancy were less likely than their sibling controls to have ever begun a pregnancy (relative fertility, 0.85; 95 percent confidence interval, 0.78 to 0.92). Radiation therapy directed below the diaphragm depressed fertility in both sexes by about 25 percent. Chemotherapy with alkylating agents, with or without radiation to sites below the diaphragm, was associated with a fertility deficit of about 60 percent in the men. Among the women, there was no apparent effect of alkylating-agent therapy administered alone (relative fertility, 1.02) and only a moderate fertility deficit when alkylating-agent therapy was combined with radiation below the diaphragm (relative fertility, 0.81). Relative fertility in the survivors varied considerably according to sex, site of cancer, and type of treatment; these factors should be taken into consideration in counseling survivors about the long-term consequences of disease.« less

Skin cancers in elderly patients.

PubMed

Malaguarnera, Giulia; Giordano, Maria; Cappellani, Alessandro; Berretta, Massimiliano; Malaguarnera, Michele; Perrotta, Rosario Emanuele

2013-11-01

Cancer in older people is a common problem worldwide. Among various types of cancer, skin cancers represent an important percentage. The principal risk factors are sun exposure, family history of skin cancer, fair skin color, but also the age plays an important role in the genesis of skin cancers. In older people there are a more prolonged exposure to carcinogenesis and a decreased functionality of reparation mechanisms of the cells so they acquire a selective advantage of growing and proliferating. At the same time age causes alteration in immune system by increasing NK-cells absolute number and decreasing both the endogenous and the lymphokine-induced lytic activities. The anti-tumor immune response is also mediated by the cytotoxic T- lymphocytes and in the elderly a strong reduction of T-cell function has been demonstrated. In elderly patients the diagnosis and the treatment of skin cancers can be different from younger counterpart. For example in older patients with melanoma is important to evaluate Breslow depth while higher mitotic rate has major value in younger patients. Moreover, the treatment should consider the performance status of patients and their compliance.

Psychosocial distress in patients with thyroid cancer.

PubMed

Buchmann, Luke; Ashby, Shaelene; Cannon, Richard B; Hunt, Jason P

2015-04-01

The purpose of this study is to evaluate levels of psychosocial distress in thyroid cancer patients. An analysis of factors contributing to levels of distress is included. Individual retrospective cohort study. Head and neck cancer clinic at the Huntsman Cancer Institute. A total of 118 newly diagnosed thyroid cancer patients were included in the study. Univariate and multivariate analyses evaluated levels of and factors contributing to distress. Almost half (43.3%) of patients had significant distress. Those with self-reported psychiatric history, use of antidepressant medication, and history of radiation treatment had higher levels of distress. On multivariate analysis, patient endorsement of emotional issues predicted a higher distress level. Thyroid cancer patients have high distress levels. Identification of thyroid cancer patients with high distress levels is important to offer additional support during cancer therapy. © American Academy of Otolaryngology—Head and Neck Surgery Foundation 2015.

Childhood and adolescent lymphoma in Spain: incidence and survival trends over 20 years.

PubMed

Marcos-Gragera, R; Solans, M; Galceran, J; Fernández-Delgado, R; Fernández-Teijeiro, A; Mateos, A; Quirós-Garcia, J R; Fuster-Camarena, N; De Castro, V; Sánchez, M J; Franch, P; Chirlaque, M D; Ardanaz, E; Martos, C; Salmerón, D; Peris-Bonet, R

2018-04-05

Lymphoma is the third most common malignancy in children (0-14 years) and the first in adolescents (15-19 years). This population-based study-the largest ever done in Spain-analyses incidence and survival of lymphomas among Spanish children and adolescents. 1664 lymphoma cases (1983-2007) for incidence and 1030 for survival (1991-2005) followed until 31/12/2010, were provided by 11 cancer registries. Age-adjusted incidence rates (ASRw) to the world standard population were obtained; incidence trends were modelled using the Joinpoint programme, observed survival (OS) was estimated with Kaplan-Meier and trends tested with a log-rank test. Results are presented according to the International Classification of Childhood Cancer-3. In Spain, the ASRw 0-14 for lymphomas was 17.5 per 1.000.000 child-years and 50.0 the specific rate for adolescents. Overall incidence increased significantly during 1983-1997 with no increases thereafter. Patients over 9 years old showed significant rising trends for all subtypes, except for Burkitt lymphoma (BL) in adolescents. During 2001-2005 (age 0-19 years), 5-year OS was 94 (90-98), 73 (64-83) and 86 (78-94) for Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL) and BL, respectively. No improvement in survival was found. The incidence in Spain was higher than overall European rates, but within the range of that in Southern Europe. Comparing OS in Spain 1991-1995 and 2001-2005 with results for Europe of the Automated Childhood Cancer Information System (ACCIS) (1988-1997) and the European cancer registry-based study on survival and care of cancer patients (EUROCARE) (2000-2007), it was similar for HL and lower for NHL and BL. Systematic monitoring and analysis of lymphoma paediatric data would provide clinical and epidemiological information to improve the health care of these patients and the outcomes for these malignancies in Spain.

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.

Along the Cancer Continuum: Integrating Therapeutic Support and Bereavement Groups for Children and Teens of Terminally Ill Cancer Patients

ERIC Educational Resources Information Center

Werner-Lin, Allison; Biank, Nancee M.

2009-01-01

Family life is altered irrevocably when a young parent is diagnosed with or dies from cancer. This article tracks the genesis and transformation of a comprehensive psychoeducational support and bereavement program for children, adolescents, and parents affected by cancer. From the inception of the program, families with parents in active treatment…

Common Use of Electroconvulsive Therapy for Chinese Adolescent Psychiatric Patients.

PubMed

Zhang, Qing-E; Wang, Zhi-Min; Sha, Sha; Ng, Chee H; Seiner, Stephen J; Welch, Charles A; Lok, Grace K I; Chow, Ines H I; Wang, Fei; Li, Lu; Xiang, Yu-Tao

2016-12-01

Little is known about the use of electroconvulsive therapy (ECT) for adolescent psychiatric patients in China. This study examined the frequency of ECT and the demographic and clinical correlates of adolescent psychiatric patients hospitalized in a tertiary psychiatric hospital in China. This was a retrospective chart review of 954 inpatients aged between 13 and 17 years treated over a period of 8 years (2007-2013). Sociodemographic and clinical data were collected from the electronic chart management system for discharged patients. The rate of ECT use was 42.6% in the whole sample (46.5% for patients with schizophrenia, 41.8% for major depressive disorder, 57.8% for bipolar disorders, and 23.9% for other diagnoses). Use of ECT was independently and positively associated with older age, high aggression risk at time of admission, and use of antipsychotics and antidepressants. Compared with patients with schizophrenia, those with other psychiatric diagnoses were less likely to receive ECT. The above significant correlates explained 32% of the variance of ECT use (P < 0.001). Limitations of this study included the lack of data regarding the efficacy and side effects of ECT. Furthermore, the high rate of ECT applied only to 1 setting which limits the ability to extrapolate the implications of the results to other populations. The use of ECT was exceedingly high in adolescent patients treated in a tertiary clinical centre in China. It is unlikely that such a high rate of ECT use is found across China or that such practice reflects standard of care for psychiatrically ill adolescents. The underlying reasons for the high use of ECT at this center warrant urgent investigations.

Cancer incidence rates and trends among children and adolescents in Piedmont, 1967-2011.

PubMed

Isaevska, Elena; Manasievska, Milena; Alessi, Daniela; Mosso, Maria Luisa; Magnani, Corrado; Sacerdote, Carlotta; Pastore, Guido; Fagioli, Franca; Merletti, Franco; Maule, Milena

2017-01-01

In the past, increases in childhood cancer incidence were reported in Europe and North America. The aim of this study is to show updated patterns of temporal behavior using data of the Childhood Cancer Registry of Piedmont (CCRP), a region with approximately 4.5 million inhabitants in North-West Italy. CCRP has been recording incident cases in children (0-14 years) since 1967 and in adolescents (15-19) since 2000. Time trends were estimated as annual percent change (APC) over the 1976-2011 period for children, and over 2000-2011 for both children and adolescents. CCRP registered 5020 incident cases from 1967 to 2011. Incidence rates were 157 per million person-years for children (1967-2011) and 282 for adolescents (2000-2011). From 1976-2011, increasing trends were observed in children for all neoplasms (APC 1.1, 95%CI: 0.8; 1.5) and for both embryonal and non-embryonal tumors: 1.1%, (0.5; 1.6) and 1.2%, (0.7; 1.6), respectively. Increases were observed in several tumor types, including leukemia, lymphoma, central nervous system tumors and neuroblastoma. In 2000-2011, incidence rates showed mostly non statistically significant variations and large variability. The observation of trends over a long period shows that the incidence of most tumors has increased, and this is only partially explained by diagnostic changes. Large rate variability hampers interpretation of trend patterns in short periods. Given that no satisfying explanation for the increases observed in the past was ever found, efforts must be made to understand and interpret this peculiar and still ununderstood pattern of childhood cancer incidence.

Autism in children and adolescents with cancer.

PubMed

Blatt, Julie; Deal, Allison M; Mesibov, Gary

2010-01-01

The causes of autistic disorders (AD) are not known. Abnormalities of tumor suppressor genes have suggested that these genes may be important to the development of autism in some cases, and result in an increased risk of developing cancer or other neoplasms. We explore possible associations between AD and childhood cancer. We reviewed our institutional pediatric cancer database for all new cancer diagnoses 1997-2007. Medical records from patients older than 2 years at last visit were reviewed for a diagnosis of AD. The prevalence of AD was estimated for neoplasms overall and for specific tumor types, and compared with that in the general pediatric population. Of 702 eligible patients, 7 (1%; 95% CI: (0.4%, 2.04%)) were labeled as AD, not different than the prevalence of AD in North Carolina's general population (0.65%, P = 0.35). Cancer diagnoses for these 7 children were acute lymphoblastic leukemia (n = 1), acute nonlymphocytic leukemia (n = 2), non-Hodgkin lymphoma (n = 1), Hodgkin Disease (n = 1), brain tumor (n = 1), osteogenic sarcoma (n = 1). These data do not suggest that there is a high concordance between AD and childhood cancer. However, studies of large rigorously characterized AD cohorts will be needed to definitively address this issue. Copyright 2009 Wiley-Liss, Inc.

Patient Care Coordinator | Center for Cancer Research

Cancer.gov

We are looking for a Patient Care Coordinator to join our clinical team to help us coordinate care for patients enrolled on our clinical research protocols. Duties include scheduling appointments, coordinating new patients, obtaining patient records, attending weekly clinic meetings, and data base entry. Be part of our mission to solve the most important, challenging and neglected problems in modern cancer research and patient care.  The National Cancer Institute’s Center for Cancer Research is a world-leading cancer research organization working toward scientific breakthroughs at medicine’s cutting edge.   Our scientists can’t do it alone. It takes an extraordinary team of researchers, clinical experts and administrators to improve the lives of cancer patients and answer the most important questions in cancer biology and treatment.

A cohort study on the evolution of psychosocial problems in older patients with breast or colorectal cancer: comparison with younger cancer patients and older primary care patients without cancer.

PubMed

Deckx, Laura; van Abbema, Doris L; van den Akker, Marjan; van den Broeke, Carine; van Driel, Mieke; Bulens, Paul; Tjan-Heijnen, Vivianne C G; Kenis, Cindy; de Jonge, Eric T; Houben, Bert; Buntinx, Frank

2015-07-09

Although older cancer survivors commonly report psychosocial problems, the impact of both cancer and ageing on the occurrence of these problems remains largely unknown. The evolution of depression, cognitive functioning, and fatigue was evaluated in a group of older cancer patients in comparison with a group of younger cancer patients and older persons without cancer. Older (≥70 years) and younger cancer patients (50-69 years) with breast or colorectal cancer stage I-III, and older persons without cancer (≥70 years) were included. Data were collected at baseline and one year follow-up and were available for 536 persons. Depression was evaluated with the 15-item Geriatric Depression Scale. Cognitive functioning was measured with the cognitive functioning subscale of the European Organization for Research and Treatment of Cancer. Fatigue was measured with a Visual Analogue Scale. Risk factors for depression, cognitive functioning, and fatigue were analysed using multivariate logistic regression analyses. Risk factors included cancer- and ageing-related factors such as functional status, cancer treatment, and comorbidities. The evolution of psychosocial problems was similar for the group of older (N = 125) and younger cancer patients (N = 196): an increase in depression (p < 0.01), slight worsening in cognitive functioning (p = 0.01), and no clear change in fatigue. Also, compared to the group of people without cancer (N = 215), the differences were small and after one year of follow-up only depression was more frequent in older cancer patients compared to older persons without cancer (18% versus 9%, p = 0.04). In multivariate analyses the main risk factors for psychosocial problems after one year follow-up were changes in functional status and presence of baseline depression, fatigue, or cognitive impairment. Over the course of one year after a diagnosis of cancer, cancer patients face increasing levels of depression and increasing

Why Cancer Patients Seek Islamic Healing.

PubMed

Suhami, Norhasmilia; Muhamad, Mazanah Bt; Krauss, Steven Eric

2016-10-01

Islamic healing is frequently referred to as the treatment of choice by many Muslim cancer patients in Malaysia. Despite its widespread use, there is limited information relating to patients' healing preferences. With rising cancer rates in the country, this issue has become a concern to public health policy makers. The purpose of this study was to understand why cancer patients seek Islamic healing. This qualitative study utilized in-depth interviews with 18 cancer patients. The findings indicate three main reasons: (1) recommendations from family, friends and doctors; (2) belief in Islamic healing and (3) the perceived ineffectiveness and dissatisfaction with conventional treatments. Islamic healing will likely continue to be popular complementary cancer treatment in Malaysia as it is grounded in strong cultural and religious beliefs.

Cancer screening in patients infected with HIV.

PubMed

Sigel, Keith; Dubrow, Robert; Silverberg, Michael; Crothers, Kristina; Braithwaite, Scott; Justice, Amy

2011-09-01

Non-AIDS-defining cancers are a rising health concern among HIV-infected patients. Cancer screening is now an important component of health maintenance in HIV clinical practice. The decision to screen an HIV-infected patient for cancer should include an assessment of individualized risk for the particular cancer, life expectancy, and the harms and benefits associated with the screening test and its potential outcome. HIV-infected patients are at enhanced risk of several cancers compared to the general population; anal cancer, hepatocellular carcinoma, Hodgkin's lymphoma, and lung cancer all have good evidence demonstrating an enhanced risk in HIV-infected persons. A number of cancer screening interventions have shown benefit for specific cancers in the general population, but data on the application of these tests to HIV-infected persons are limited. Here we review the epidemiology and background literature relating to cancer screening interventions in HIV-infected persons. We then use these data to inform a conceptual model for evaluating HIV-infected patients for cancer screening.