Measuring health-related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient-Reported Outcomes Measurement Information System® : Comparing adolescent, emerging adult, and young adult survivor perspectives.

OBJECTIVE: Our knowledge of symptom burden and functioning among adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors has been hindered by variability in health-related quality of life (HRQOL) measurement associated with developmental and disease heterogeneity among AYAs. We aimed to examine the variability in domain-specific aspects of HRQOL as a function of cancer type and developmental stage to clarify commonalities and differences using the NIH Patient-Reported Outcome Measurement Information System® . METHODS: Five hundred seventy-two AYAs were recruited by an online research panel using stratified sampling (treatment status: on vs. off; developmental stage: adolescents, emerging adults, young adults). Participants completed questionnaires that included sociodemographic characteristics, clinical history, and the adult version of the Patient-Reported Outcomes Measurement Information System® -29 (PROMIS-29). Generalized linear models were run for each HRQOL domain and included treatment status, developmental stage, and cancer type (hematologic vs. solid tumor) and their interactions as independent variables. RESULTS: There were no significant differences in any HRQOL domain by cancer type, and few significant differences were observed in PROMIS domains between developmental groups among on-treatment AYA survivors. In contrast, off-treatment emerging adults and young adults reported significantly higher symptoms and worse functioning compared to adolescents (all ps ≤ 0.003). CONCLUSIONS: AYAs diagnosed in different developmental stages, particularly among off-treatment survivors, experienced diverse constellations of symptoms and functioning, and developmental stage was a more critical predictor of HRQOL than cancer type. These results suggest that supportive care interventions developed for AYA cancer survivors must be tailored and flexible by developmental stage and treatment status.

Sexual functioning among young adult cancer patients: A 2-year longitudinal study.

BACKGROUND: Cancer-related sexual dysfunction has been reported among adolescents and young adults (AYAs); however, its prevalence over time has not been examined. This longitudinal study investigated sexual dysfunction in AYAs over the course of 2 years after the initial diagnosis. METHODS: Young adult patients (18-39 years old) completed the Medical Outcomes Study Sexual Functioning Scale within the first 4 months of their diagnosis (n = 123) and again 6 (n = 107) and 24 months later (n = 95). An ordered multinomial response model analyzed changes in the probability of reporting sexual dysfunction over time and the independent effects of demographic, clinical, and psychosocial variables. RESULTS: More than half of the participants reported sexual functioning to be problematic at each assessment. The probability of reporting sexual dysfunction increased over time (P < .01) and was greater for cancer patients who were female (P < .001), older (P < .01), married or in a committed relationship (P < .001), treated with chemotherapy (P < .05), and reporting comorbid psychological distress (P < .001) and lower social support (P < .05). For women, being in a relationship increased the likelihood of reporting sexual problems over time; for men, the likelihood of reporting sexual problems increased regardless of their relationship status. CONCLUSIONS: A substantial proportion of young adults report ongoing problems with sexual functioning in the first 2 years after their cancer diagnosis. These findings justify the need to evaluate and monitor sexual functioning throughout a continuum of care. Cancer 2018;124:398-405. © 2017 American Cancer Society.

Health-Related Quality of Life in Adolescent and Young Adult Patients With Cancer: A Longitudinal Study.

Purpose To examine changes in health-related quality of life (HRQoL) and its predictors during the first 2 years after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Patients and Methods A multicenter, longitudinal, prospective study was conducted among a diverse sample of AYA patients with cancer ages 15 to 39 years. One hundred seventy-six patients (75% response) completed a self-report measure of HRQoL (Short Form-36 [SF-36]) within the first 4 months after diagnosis and again 12 and 24 months later. Linear mixed models with random intercepts and slopes estimated changes in QoL. Results Recently diagnosed AYA patients with cancer had significantly worse physical component scale (PCS) scores (38.7 v 52.8; P < .001) and mental component scale (MCS) scores (42.9 v 48.9; P < .001) when compared with population norms. Significant improvements in PCS and MCS scores from baseline to 24-month follow-up were observed; however, these increases were largest during the first 12 months. At the 24-month follow-up, AYA patients still had significantly lower PCS scores (48.0 v 52.8; P < .001) and MCS scores (45.8 v 48.9; P = .002) when compared with population norms. Multivariable analyses revealed that improvements in PCS and MCS scores were primarily a function of being off-treatment and being involved in school or work. PCS but not MCS scores were worse for AYA patients diagnosed with cancers with poorer prognoses. Conclusion Although HRQoL improved over time, it was still compromised 24 months after primary diagnosis. Given relatively little observed improvement in HRQoL during the 12- to 24-month period after diagnosis, AYA patients may benefit from supportive care interventions administered during the second year after diagnosis.

Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis.

PURPOSE: Identifying at-risk adolescent and young adult (AYA) cancer patients and referring them to age-appropriate psychosocial support services may be instrumental in reducing psychological distress and promoting psychosocial adaptation. The purpose of this study is to identify trajectories of clinically significant levels of distress throughout the first year following diagnosis and to distinguish factors, including supportive care service use, that predict the extent to which AYAs report distress. METHODS: In this prospective multisite study, 215 AYAs aged 15-39 years were assessed for psychological distress and psychosocial support service use within the first 4 months of diagnosis and again 6 and 12 months later. On the basis of distress scores, respondents were assigned to one of four distress trajectory groups (Resilient, Recovery, Delayed, and Chronic). Multiple logistic regression analyses examined whether demographics, clinical variables, and reports of unsatisfied need for psychosocial support were associated with distress trajectories over 1 year. RESULTS: Twelve percent of AYAs reported clinically significant chronic distress throughout the first 12 months following diagnosis. An additional 15% reported delayed distress. Substantial proportions of AYAs reported that needs for information (57%), counseling (41%), and practical support (39%) remained unsatisfied at 12 months following diagnosis. Not getting counseling needs met, particularly with regard to professional mental health services, was observed to be significantly associated with distress over time. CONCLUSIONS: Substantial proportions of AYAs are not utilizing psychosocial support services. Findings suggest the importance of identifying psychologically distressed AYAs and addressing their needs for mental health counseling throughout a continuum of care.

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

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, 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. 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. 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.

Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study.

PURPOSE: To examine prevalence and changes in symptoms of psychological distress over 1 year after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Sociodemographic and clinical predictors of changes in distress were examined. PATIENTS AND METHODS: In this multisite, longitudinal, prospective study of an ethnically diverse sample, 215 patients age 14 to 39 years were assessed for psychological distress within the first 4 months of diagnosis and again 6 and 12 months later. Linear mixed models with random intercept and slope estimated changes in distress, as measured by the Brief Symptom Inventory-18 (BSI-18). RESULTS: Within the first 4 months of diagnosis, 60 respondents (28%) had BSI-18 scores suggesting caseness for distress. On average, distress symptoms exceeded population norms at the time of diagnosis, dipped at the 6-month follow-up, but increased to a level exceeding population norms at the 12-month follow-up. A statistically significant decline in distress over 1 year was observed; however, the gradient of change was not clinically significant. Multivariate analyses revealed that the reduction in distress over time was primarily a function of being off treatment and involved in school or work. Notably, cancer type or severity was not associated with distress. CONCLUSION: Findings emphasize the importance of early psychosocial intervention for distress in AYAs as well as the need to manage treatment-related symptoms and facilitate AYAs' involvement in work or school to the extent possible. Continued research is needed to understand how distress relates to quality of life, functional outcomes, treatment, and symptom burden throughout the continuum of care.

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

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 therapy and mental health services.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Prevalence and predictors of post-traumatic stress symptoms in adolescent and young adult cancer survivors: a 1-year follow-up study.

OBJECTIVES: Post-traumatic stress symptoms (PTSS) have been identified as a meaningful indicator of distress in cancer survivors. Distinct from young adult survivors of childhood cancer, young people diagnosed with cancer as adolescents and young adults (AYAs) face unique psychosocial issues; however, there is little published research of PTSS in the AYA population. This study examines prevalence and predictors of PTSS among AYAs with cancer. METHODS: As part of a longitudinal study of AYAs with cancer, 151 patients aged 15-39 years completed mailed surveys at 6 and 12 months post-diagnosis. Severity of PTSS was estimated at 6 and 12 months post-diagnosis. Multiple regression analyses were conducted to investigate the predictive effects of socio-demographic and clinical characteristics on changes in PTSS over time. RESULTS: At 6 and 12 months, respectively, 39% and 44% of participants reported moderate to severe levels of PTSS; 29% had PTSS levels suggestive of post-traumatic stress disorder. No significant differences in severity of PTSS between 6 and 12 months were observed. Regression analyses suggested that a greater number of side effects were associated with higher levels of PTSS at 6 months. Currently receiving treatment, having surgical treatment, diagnosis of a cancer type with a 90-100% survival rate, remaining unemployed/not in school, and greater PTSS at 6 months were associated with higher levels of PTSS at 12 months. CONCLUSIONS: Post-traumatic stress symptoms were observed as early as 6 months following diagnosis and remained stable at 12-month follow-up. The development of early interventions for reducing distress among AYA patients in treatment is recommended.

Perceived positive impact of cancer among long-term survivors of childhood cancer: a report from the childhood cancer survivor study.

OBJECTIVE: Investigations examining psychosocial adjustment among childhood cancer survivors have focused primarily on negative effects and psychopathology. Emergent literature suggests the existence of positive impact or adjustment experienced after cancer, as well. The purpose of this study is to examine the distribution of Perceived Positive Impact (PPI) and its correlates in young adult survivors of childhood cancer. METHODS: 6425 survivors and 360 siblings completed a comprehensive health survey, inclusive of a modified version of the Post-traumatic Growth Inventory (PTGI) as a measure of PPI. Linear regression models were used to examine demographic, disease and treatment characteristics associated with PPI. RESULTS: Survivors were significantly more likely than siblings to report PPI. Endorsement of PPI was significantly greater among female and non-white survivors, and among survivors exposed to at least one intense therapy, a second malignancy or cancer recurrence. Survivors diagnosed at older ages and fewer years since diagnosis were more likely to report PPI. Income, education and marital/relationship status appeared to have varied relationships to PPI depending upon the subscale being evaluated. CONCLUSIONS: The existence and variability of PPI in survivors in this study suggest that individual characteristics, inclusive of race, gender, cancer type, intensity of treatment, age at diagnosis and time since diagnosis, have unique and specific associations with different aspects of perceived positive outcomes of childhood cancer.

The perceived impact of cancer on quality of life for post-treatment survivors of childhood cancer.

PURPOSE: To examine whether childhood cancer survivors' perceptions of the impact of cancer are related to quality of life (QOL) and psychological distress. METHODS: 621 survivors (aged 18-39 years) completed a mailed survey assessing distress and QOL. Hierarchical linear regression models analyzed the independent effects of perceived impacts of cancer on distress and QOL and the extent to which positive and negative perceptions attenuated the effects of covariates on outcomes. RESULTS: After accounting for perceptions of cancer's impact on their lives, employment/occupation status, marital/relationship status, and health problems were observed to be significant predictors of QOL and distress. Psychological distress and the mental health component of QOL appeared to be less influenced by sociodemographic status and health problems and more a function of how survivors perceive cancer as impacting their lives. CONCLUSIONS: Results suggest that distress and QOL are partially a function of survivors' perceptions of how cancer has affected them and continues to affect them in both positive and negative ways. Future research is needed to examine combinations of pharmacological, psychological and/or social interventions that are likely to result in better outcomes in this population.

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

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

Psychometric evaluation of the Impact of Cancer (IOC-CS) scale for young adult survivors of childhood cancer.

INTRODUCTION: Psychosocial outcomes derived from standardized and disease-specific measures are often used in pediatric oncology; however, the reliability, validity and utility of these instruments in adult survivors of childhood cancer have yet to be established. PURPOSE: To develop and evaluate a new instrument that measures aspects of long-term survivorship not measured by existing tools. METHODS: A new candidate instrument--the Impact of Cancer for childhood cancer survivors (IOC-CS)--was administered to childhood cancer survivors aged 18-39 who were 21 years of age or younger when diagnosed with cancer. Psychometric properties of newly derived scales were assessed. RESULTS: Factor analyses of items derived eight new and specific subscales: Life Challenges, Body/Health, Talking With Parents, Personal Growth, Thinking/Memory Problems, Health Literacy, Socializing and Financial Problems. Internal consistency measurements for these subscales ranged from 0.70 to 0.86. Expected associations within and among the IOC-CS subscales and standardized measures of health-related quality of life (HRQOL) were observed, as were some unexpected findings. CONCLUSION: Psychometric analyses indicated that this initial version of the IOC-CS measures distinct and relevant constructs for young adult survivors of childhood cancer. Future work is necessary to confirm the responsiveness and further validate the instrument in multiple and representative samples.

Sexual functioning in young adult survivors of childhood cancer.

BACKGROUND: Studies of sexuality or sexual behavior in childhood cancer survivors tend to examine relationships or achievement of developmental milestones but not physiological response to cancer or treatment. The purpose of this study is to (1) identify prevalence and risk factors for sexual dysfunction in childhood cancer survivors, and (2) examine the extent to which sexual dysfunction may be associated with health-related quality of life (HRQOL) and psychosocial outcomes. METHODS: Five hundred ninety-nine survivors age 18-39 years completed standardized measures of sexual functioning, HRQOL, psychological distress and life satisfaction. Descriptive statistics assessed prevalence of sexual symptoms. Bivariate analyses identified correlates of sexual symptoms and examined associations between symptoms and HRQOL/psychosocial outcomes. RESULTS: Most survivors appear to be doing well, although 52% of female survivors and 32% of male survivors reported at least 'a little of a problem' in one or more areas of sexual functioning. Mean symptom score for females was more than twice that of males. Sexual symptoms were associated with reporting health problems. Significant associations between sexual functioning and HRQOL outcomes were observed, with gender differences in strengths of association suggesting that males find sexual symptoms more distressing than do females. CONCLUSIONS: While most survivors appear to be doing well in this important life domain, some young adult survivors report sexual concerns. While female survivors may report more sexual symptoms than male survivors, males may experience more distress associated with sexual difficulties. Better-specified measures of sexual function, behavior and outcomes are needed for this young adult population.

The impact of cancer and quality of life for long-term survivors.

UNLABELLED: This study reports on health status and quality of life (QOL) outcomes in long-term cancer survivors, and potential correlates including cancer type, age at diagnosis, health status, and key sociodemographic variables. METHOD: One hundred and ninety-three cancer survivors 5-10 years post-diagnosis completed a mailed survey assessing physical and mental health status, QOL, post-traumatic growth, and impact of cancer (IOC). RESULTS: Respondents were comparable to population norms on physical and mental health status. After controlling for sociodemographic and medical status variables, older respondents reported better overall QOL (p=0.004) and mental health (p<0.001), but worse physical health (p=0.04). Survivors reporting low income (p=0.02) and comorbidities (p=0.003) indicated worse physical functioning. A higher negative IOC score was associated with worse physical functioning (p<0.0001), worse mental health (p<0.0001), and lower overall QOL (p<0.0001). A higher positive IOC score was associated with better mental health (p=0.0004) and better overall QOL (p=0.005). CONCLUSION: Perceptions of how cancer has affected survivors' lives in both positive and negative ways may influence, or be influenced by, their functional abilities and QOL.

The associations between living conditions, demography, and the 'impact of cancer' scale in tumor-free cancer survivors: a NOCWO study.

GOALS OF WORK: The "impact of cancer" scale (IOC) is a new questionnaire that explores attitudes in the physical, psychological, social, and spiritual/existential domains in cancer survivors. This study explores the associations between demography, living conditions (LCs), and the IOC dimensions in disease-free Norwegian survivors who have been treated for breast, prostate, or testicular cancer. MATERIALS AND METHODS: A questionnaire covering demography, LCs, and the IOC was mailed to 852 cancer survivors; 459 (54%) participated. A living condition index (LCI) was calculated based on self-reported education, employment, annual income, health, housing expenditures, and social participation. MAIN RESULTS: Survivors with a low LCI level viewed their situation significantly worse on four of five negative IOC dimensions than those with high LCI level. No significant LCI-related differences were observed for the mean scores of positive IOC dimensions. Significant associations were observed between gender, health status, employment, and five to six IOC dimensions. LCs were more often associated with the negative IOC dimensions than the positive ones. CONCLUSIONS: The significant associations between LCs and dimensions of the IOC in tumor-free cancer survivors show that LCs should be considered when health care professionals assist cancer survivors in dealing with the impact the cancer experience had on their lives.

Psychological distress in long-term survivors of solid tumors diagnosed in childhood: a report from the childhood cancer survivor study.

PURPOSE: To evaluate and compare psychological distress in long-term survivors of solid tumors diagnosed in childhood and their siblings, and to identify significant correlates of psychological distress. PROCEDURE: Adult survivors (2,778) of solid tumors diagnosed in childhood and 2,925 siblings completed a long-term follow-up questionnaire assessing symptoms associated with depression, somatization, and anxiety, as well as demographic, health, and medical information. RESULTS: Overall, a large majority of siblings and survivors reported few, if any, symptoms of psychological distress. In the aggregate, solid tumor cancer survivors reported significantly higher levels of global distress as measured by the Brief Symptom Inventory (BSI-18), as well as higher levels of somatization and anxiety, when compared to siblings. However, when compared to population norms, both survivors and siblings reported lower levels of global and dimensional distress. Female gender, lower educational and income attainment, perceived poor health status and reports of current health problems all were associated with reporting psychological distress symptoms for both survivors and siblings. Among survivors, having a limb amputation was associated with reporting fewer symptoms of global and dimensional distress. CONCLUSION: Poor health status, low levels of income, education, and employment appear to be predictors of distress for survivors of solid tumors. Thus, interventions that promote health and facilitate educational advancement, income attainment and social interaction to minimize isolation and maximize social support may reduce psychological distress and promote quality of life for childhood cancer survivors.

Health and supportive care needs of young adult cancer patients and survivors.

PURPOSE: A sizable body of literature exists for young adult survivors of childhood cancer but relatively little is known about the health and supportive care needs of older adolescent and young adult cancer survivors. This project assessed priority health and supportive care needs for young adult patients and off-treatment survivors. METHODS: 1,088 cancer patients and off-treatment survivors (age 18-39, diagnosed between the ages of 15-35) rank ordered a series of health and supportive care needs. Item rank scores were calculated to prioritize lists of needs for patients receiving treatment and off-treatment survivors, respectively. Differences in rankings based on respondent age, age at diagnosis, years since diagnosis, gender and treatment status (currently receiving treatment or off-treatment) were examined. RESULTS: Availability of state-of-the-art treatment specific to this age-group and having adequate health insurance were the most highly-ranked health care needs. Support from family and friends were the most highly ranked supportive care needs, although younger respondents attributed greater importance to support from family and friends. Older respondents attributed greater importance to availability of age-appropriate information, psychological counseling, and being responsible for one's own health care and decision-making. Younger respondents reported significantly higher needs for fertility information and services and for scheduling treatments to fit their lifestyles. CONCLUSION: Needs of adolescents and young adults with cancer vary along a continuum of care, from diagnosis and treatment through survivorship. Findings emphasize the value of age-appropriate resources and peer support. The study offers direction for delivering services to what previously has been an underserved population.

Health-related quality of life for Latino survivors of childhood cancer.

This study compared the similarities and differences in health-related quality of life (HRQOL) among Latino and non-Latino adult long-term survivors of childhood cancer using the qualitative methodologies of focus groups and individual semistructured telephone interviews. The study also compared the sample's HRQOL, as measured by the Short-form 12 to the general, healthy United States population normative data. The data suggest that Latino survivors are reporting good HRQOL similar to the non-Latinos. The findings suggest that the paradigm of negative consequences of cure should be expanded to one, which also includes the positive impact of cure for ethnically diverse populations of childhood cancer survivors.