Examination of prostate-specific antigen (PSA) screening in military and civilian men: analysis of the 2018 behavioral risk factor surveillance system.

PURPOSE: To determine whether military men report different prostate-specific antigen (PSA) screening rates than civilian men and if shared decision-making (SDM) is associated with PSA screening. METHODS: We used data from the 2018 Behavioral Risk Factor Surveillance System and included 101,901 men (26,363 military and 75,538 civilian men) in the analysis conducted in 2021. We conducted binomial logistic regression analyses to determine covariate-adjusted associations between military status and receiving a PSA test in the last 2 years. We then added patient reports of SDM to the model. Finally, we looked at the joint effects of military status and SDM on the receipt of a PSA test in the last 2 years. RESULTS: Military men had 1.1 times the odds of PSA testing compared to civilian men (95% CI 1.1, 1.2) after adjusting for SDM and sociodemographic and health covariates. When examining the joint effect of military status and SDM, military and civilian men had over three times the odds of receiving a PSA test in the last 2 years if they had reported SDM (OR 3.5 and OR 3.4, respectively) compared to civilian men who did not experience SDM. CONCLUSION: Military men are slightly more likely to report receiving a PSA test in the last 2 years compared to civilian men. Additionally, results show SDM plays a role in the receipt of a PSA test in both populations. These findings can serve as a foundation for tailored interventions to promote appropriate SDM for PSA screening in civilian, active duty, and veteran healthcare systems.

Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop.

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.

Young and uninsured: Insurance patterns of recently diagnosed adolescent and young adult cancer survivors in the AYA HOPE study.

BACKGROUND: Young adults have historically been the least likely to have health insurance in the United States. Previous studies of survivors of childhood cancer found lower rates of insurance and less access to medical care compared with siblings; however, to the authors' knowledge, no studies to date have examined continuity of insurance after a cancer diagnosis in adolescents and young adults (AYAs). METHODS: Using the AYA Health Outcomes and Patient Experience study, a cohort of 465 individuals aged 15 to 39 years from participating Surveillance, Epidemiology, and End Results registries, we evaluated changes in and sponsors of health insurance coverage after diagnosis, coverage of physician-recommended tests, and factors associated with lack of insurance after a cancer diagnosis using chi-square tests and multivariable logistic regression. RESULTS: Greater than 25% of AYA survivors of cancer (118 survivors) experienced some period without insurance up to 35 months after diagnosis. Insurance rates were high in the initial year after diagnosis (6 months-14 months; 93.3%) but decreased substantially at follow-up (15 months-35 months; 85.2%). The most common sponsor of health insurance was employer/school coverage (43.7%). Multivariable analysis indicated that older survivors (those aged 25-39 years vs 15-19 years; odds ratio, 3.35 [P < .01]) and those with less education (high school or less vs college graduate; odds ratio, 2.80 [P < .01]) were more likely to experience a period without insurance after diagnosis. Furthermore, > 20% of survivors indicated there were physician-recommended tests/treatments that were not covered by insurance, but > 80% received them regardless of coverage. CONCLUSIONS: Insurance rates appear to decrease with time since diagnosis in AYA survivors of cancer. Future studies should examine how new policies under the Patient Protection and Affordable Care Act extend access and insurance coverage beyond initial treatment.

Central adiposity after breast cancer diagnosis is related to mortality in the Health, Eating, Activity, and Lifestyle study.

We examined whether waist circumference (WC) and waist-to-hip ratio (WHR) after breast cancer diagnosis are associated with all-cause or breast cancer-specific mortality and explored potential biological pathways mediating these relationships. Our analysis included 621 women diagnosed with local or regional breast cancer who participated in the Health, Eating, Activity, and Lifestyle study. At 30 (±4) months postdiagnosis, trained staff measured participants' waist and hip circumferences and obtained fasting serum samples for biomarker assays for assays of insulin, glucose, C-peptide, insulin growth factor-1 and binding protein-3, C-reactive protein (CRP), and adiponectin. We estimated multivariate hazard ratios (HR) and 95 % confidence intervals (CI) for death over ~9.5 years of follow-up. After adjustment for measured body mass index, treatment, comorbidities, race/ethnicity, diet quality, and postdiagnosis physical activity, WC was positively associated with all-cause mortality (HRq4:q1: 2.99, 95 % CI 1.14, 7.86) but its positive association with breast cancer-specific mortality was not statistically significant (HRq4:q1: 2.69, 95 % CI 0.69, 12.01). WHR was positively associated with all-cause mortality (HRq4:q1: 2.10, 95 % CI 1.08, 4.05) and breast cancer-specific mortality (HRq4:q1: 4.02, 95 % CI 1.31, 12.31). After adjustment for homeostatic model assessment (HOMA) score and C-reactive protein, risk estimates were attenuated and not statistically significant. In this diverse breast cancer survivor cohort, postdiagnosis WC and WHR were associated with all-cause mortality. Insulin resistance and inflammation may mediate the effects of central adiposity on mortality among breast cancer patients.

Disentangling the body weight-bone mineral density association among breast cancer survivors: an examination of the independent roles of lean mass and fat mass.

BACKGROUND: Bone mineral density (BMD) and lean mass (LM) may both decrease in breast cancer survivors, thereby increasing risk of falls and fractures. Research is needed to determine whether lean mass (LM) and fat mass (FM) independently relate to BMD in this patient group. METHODS: The Health, Eating, Activity, and Lifestyle Study participants included 599 women, ages 29-87 years, diagnosed from 1995-1999 with stage 0-IIIA breast cancer, who underwent dual-energy X-ray absorptiometry scans approximately 6-months postdiagnosis. We calculated adjusted geometric means of total body BMD within quartiles (Q) of LM and FM. We also stratified LM-BMD associations by a fat mass index threshold that tracks with obesity (lower body fat: ≤ 12.9 kg/m2; higher body fat: >12.9 kg/m2) and stratified FM-BMD associations by appendicular lean mass index level corresponding with sarcopenia (non-sarcopenic: ≥ 5.45 kg/m2 and sarcopenic: < 5.45 kg/m2). RESULTS: Higher LM (Q4 vs. Q1) was associated with higher total body BMD overall (1.12 g/cm2 vs. 1.07 g/cm2, p-trend < 0.0001), and among survivors with lower body fat (1.13 g/cm2 vs. 1.07 g/cm2, p-trend < 0.0001) and higher body fat (1.15 g/cm2 vs. 1.08 g/cm2, p-trend = 0.004). Higher FM (Q4 vs. Q1) was associated with higher total body BMD overall (1.12 g/cm2 vs. 1.07 g/cm2, p-trend < 0.0001) and among non-sarcopenic survivors (1.15 g/cm2 vs. 1.08 g/cm2, p < 0.0001), but the association was not significant among sarcopenic survivors (1.09 g/cm2 vs. 1.04 g/cm2, p-trend = 0.18). CONCLUSION: Among breast cancer survivors, higher LM and FM were independently related to higher total body BMD. Future exercise interventions to prevent bone loss among survivors should consider the potential relevance of increasing and preserving LM.

Postdiagnosis diet quality, the combination of diet quality and recreational physical activity, and prognosis after early-stage breast cancer.

OBJECTIVE: To investigate, among women with breast cancer, how postdiagnosis diet quality and the combination of diet quality and recreational physical activity are associated with prognosis. METHODS: This multiethnic, prospective observational cohort included 670 women diagnosed with local or regional breast cancer. Thirty months after diagnosis, women completed self-report assessments on diet and physical activity and were followed for 6 years. Cox proportional hazards models were used to estimate hazard ratios (HR) and 95% confidence intervals for death from any cause and breast cancer death. RESULTS: Women consuming better-quality diets, as defined by higher Healthy Eating Index-2005 scores, had a 60% reduced risk of death from any cause (HR(Q4:Q1): 0.40, 95% CI: 0.17, 0.94) and an 88% reduced risk of death from breast cancer (HR(Q4:Q1): 0.12, 95% CI: 0.02, 0.99). Compared with inactive survivors consuming poor-quality diets, survivors engaging in any recreational physical activity and consuming better-quality diets had an 89% reduced risk of death from any cause (HR: 0.11, 95% CI: 0.04, 0.36) and a 91% reduced risk of death from breast cancer (HR: 0.09, 95% CI: 0.01, 0.89). Associations observed were independent of obesity status. CONCLUSION: Women diagnosed with localized or regional breast cancer may improve prognosis by adopting better-quality dietary patterns and regular recreational physical activity. Lifestyle interventions emphasizing postdiagnosis behavior changes are advisable in breast cancer survivors.

Estrogenic botanical supplements, health-related quality of life, fatigue, and hormone-related symptoms in breast cancer survivors: a HEAL study report.

BACKGROUND: It remains unclear whether estrogenic botanical supplement (EBS) use influences breast cancer survivors' health-related outcomes. METHODS: We examined the associations of EBS use with health-related quality of life (HRQOL), with fatigue, and with 15 hormone-related symptoms such as hot flashes and night sweats among 767 breast cancer survivors participating in the Health, Eating, Activity, and Lifestyle (HEAL) Study. HRQOL was measured by the Medical Outcomes Study short form-36 physical and mental component scale summary score. Fatigue was measured by the Revised-Piper Fatigue Scale score. RESULTS: Neither overall EBS use nor the number of EBS types used was associated with HRQOL, fatigue, or hormone-related symptoms. However, comparisons of those using each specific type of EBS with non-EBS users revealed the following associations. Soy supplements users were more likely to have a better physical health summary score (odds ratio [OR] = 1.66, 95% confidence interval [CI] = 1.02-2.70). Flaxseed oil users were more likely to have a better mental health summary score (OR = 1.76, 95% CI = 1.05-2.94). Ginseng users were more likely to report severe fatigue and several hormone-related symptoms (all ORs ≥ 1.7 and all 95% CIs exclude 1). Red clover users were less likely to report weight gain, night sweats, and difficulty concentrating (all OR approximately 0.4 and all 95% CIs exclude 1). Alfalfa users were less likely to experience sleep interruption (OR = 0.28, 95% CI = 0.12-0.68). Dehydroepiandrosterone users were less likely to have hot flashes (OR = 0.33, 95% CI = 0.14-0.82). CONCLUSIONS: Our findings indicate that several specific types of EBS might have important influences on a woman's various aspects of quality of life, but further verification is necessary.

Using Testlet Response Theory to analyze data from a survey of attitude change among breast cancer survivors.

In this paper we examine alternative measurement models for fitting data from health surveys. We show why a testlet-based latent trait model that includes covariate information, embedded within a fully Bayesian framework, can allow multiple simultaneous inferences and aid interpretation. We illustrate our approach with a survey of breast cancer survivors that reveals how the attitudes of those patients change after diagnosis toward a focus on appreciating the here-and-now, and away from consideration of longer-term goals. Using the covariate information, we also show the extent to which individual-level variables such as race, age and Tamoxifen treatment are related to a patient's change in attitude.The major contribution of this research is to demonstrate the use of a hierarchical Bayesian IRT model with covariates in this application area; hence a novel case study, and one that is certainly closely aligned with but distinct from the educational testing applications that have made IRT the dominant test scoring model.

Risk factors for arm lymphedema following breast cancer diagnosis in Black women and White women.

Purpose Lymphedema of the arm is a potential complication of breast cancer therapy. This study examines pre-disposing factors that may operate in conjunction with treatment-related factors in the development of arm lymphedema in a large cohort of White and Black breast cancer survivors. Methods 494 women (271 White and 223 Black) with in situ to Stage III-A primary breast cancer completed a baseline interview within 18 months of diagnosis. Information on lymphedema was collected during a follow-up interview, conducted on average 50 months after diagnosis. Self-reported data were used to classify women with or without lymphedema. Multivariable logistic regression models were developed to identify risk factors for arm lymphedema. Results Arm lymphedema was associated with younger age at diagnosis (odds ratio, OR per year of age = 0.96; 95% confidence interval, CI = 0.93-0.99), positive history of hypertension (OR = 2.31; 95% CI = 1.38-3.88), obesity (OR for body mass index, BMI> or =30 = 2.48; 95% CI = 1.05-5.84) and having had surgery where 10 or more lymph nodes were excised (OR = 2.16; 95% CI = 1.12-4.17). While Black women had higher prevalence of arm lymphedema than White women (28% vs. 21%), race was not associated with lymphedema risk in models adjusted for multiple factors (adjusted OR = 1.01; 95% CI = 0.63-1.63). Conclusion Risk of arm lymphedema did not differ significantly for Black and White women. Risk factors identified in this study offer opportunities for interventions (weight loss, control of blood pressure, use of sentinel node biopsy where possible) for reducing incidence of lymphedema or controlling the symptoms associated with this condition.

Coping with genetic testing for breast cancer susceptibility.

OBJECTIVE: To examine how women cope with genetic testing for heightened susceptibility to breast cancer. METHODS: Participants were 126 White women (age = 44 +/- 9 years) who were participants in a larger study of genetic testing for risk of different chronic diseases. All women were at higher-than-average risk for breast cancer due to a personal and/or family history and were considering genetic testing. Distress (Symptom Checklist-90-Revised, Impact of Event Scale, Perceived Stress Scale, Spielberger State-Trait Anxiety Inventory, and the Center for Epidemiological Studies Depression Scale) was assessed at four assessments; one before and three after the decision to have genetic testing. The majority of women (n = 100) had testing. The follow-up assessments occurred at 1 week after receiving results (or 3-4 months after baseline if testing was not elected), and then at 3 and 6 months after the second assessment. Coping (Brief COPE) was measured at the first and third assessments. RESULTS: Coping was relatively stable over time and did not vary as a function of genetic test results. Active coping strategies were used more often by women with a personal cancer history than by women without cancer. Use of avoidant coping was reliably and positively associated with distress over time independent of cancer history and test result. CONCLUSIONS: The identification of specific coping styles that were associated with more or less distress is useful as a means of identifying and targeting coping interventions and predicting which participants may be at risk for distress.

Recruitment to a physical activity intervention study in women at increased risk of breast cancer.

BACKGROUND: Physical activity is being studied as a breast cancer prevention strategy. Women at risk of breast cancer report interest in lifestyle modification, but recruitment to randomized physical activity intervention studies is challenging. METHODS: We conducted an analysis of recruitment techniques used for a prospective, randomized pilot study of physical activity in women at risk of breast cancer. We evaluated differences in proportion of eligible patients, enrolled patients, and successful patients identified by each individual recruitment method. The Fisher-Freeman-Halton test (an extension of Fisher's exact test from 2 x 2 tables to general row by column tables) was used to compare the success of different recruitment strategies. RESULTS: We received 352 inquiries from women interested in participating, of whom 171 (54%) were eligible. Ninety-nine women completed a baseline activity evaluation, and 58 (34% of eligible; 16% of total inquiries) were randomized. Recruitment methods fell into three broad categories: media techniques, direct contact with potential participants, and contacts with health care providers. Recruitment strategies differed significantly in their ability to identify eligible women (p = 0.01), and women who subsequently enrolled in the study (p = 0.02). CONCLUSION: Recruitment techniques had varying success. Our data illustrate the challenges in recruiting to behavior modification studies, and provide useful information for tailoring future recruitment efforts for lifestyle intervention trials. TRIAL REGISTRATION NO(S): CDR0000393790, NCI-04-C-0276, NCI-NAVY-B05-001.

Facilitating Teamwork in Adolescent and Young Adult Oncology.

A case of a young adult patient in the days immediately after a cancer diagnosis illustrates the critical importance of three interrelated core coordinating mechanisms-closed-loop communication, shared mental models, and mutual trust-of teamwork in an adolescent and young adult multidisciplinary oncology team. The case illustrates both the opportunities to increase team member coordination and the problems that can occur when coordination breaks down. A model for teamwork is presented, which highlights the relationships among these coordinating mechanisms and demonstrates how balance among them works to optimize team function and patient care. Implications for clinical practice and research suggested by the case are presented.

Posttraumatic stress associated with cancer history and BRCA1/2 genetic testing.

OBJECTIVE: A subset of women who are at elevated cancer risk due to family history exhibit evidence of cancer-specific distress. These stress responses may represent symptoms of posttraumatic stress disorder (PTSD). The present study assessed rates of PTSD related to personal or family cancer history and BRCA1/2 testing. METHODS: Participants were 84 women enrolled in a larger project focused on genetic testing decisions. Semistructured diagnostic interviews were used to identify instances of threshold and subthreshold PTSD. RESULTS: Results indicated that 16.7% of the women reported current threshold or subthreshold PTSD related to personal or family cancer history. An additional 26.2% reported past-only cancer-related threshold or subthreshold PTSD. Of the 65 women who received BRCA1/2 results and completed the test-related PTSD module, only 7.7% reported threshold or subthreshold PTSD related to the genetic testing process. However, when rates were examined based on carrier status, 25.0% of BRCA1/2 carriers reported test-related threshold or subthreshold PTSD compared with only 10.0% of variants and 2.3% of noncarriers. CONCLUSIONS: Results from this study suggest that both personal and family cancer diagnoses can be significant stressors for a subset of high-risk women. Rates of threshold and subthreshold PTSD related to genetic testing appear to be less common, although carriers may be at higher risk for significant posttraumatic symptoms.

Impact of the AYA HOPE Comorbidity Index on Assessing Health Care Service Needs and Health Status among Adolescents and Young Adults with Cancer.

BACKGROUND: Existing comorbidity indices were not developed for adolescent and young adults (AYA) 15 to 39 years of age. The aim of this study was to assess impact of comorbidities on health care service needs and health status among AYA cancer survivors using the newly developed AYA HOPE comorbidity index in comparison with the existing indices. METHODS: Data on comorbid conditions were obtained from medical records and service needs and health status were from a survey of AYA cancer survivors. Prevalence of comorbidities was based on the AYA HOPE index. Charlson and NCI indices were compared. Multivariable logistic regression was used. RESULTS: Of the 485 patients, 14.6% had ≥2 comorbidities based on the AYA HOPE Index. Prevalence of mental illness and obesity/overweight, which were not included in existing indices, were 8.2% and 5.8%, respectively. Prevalence of cardiovascular, endocrine, gastrointestinal, and neurologic conditions were higher with the AYA HOPE Index than the other two indices. Forty percent of AYA patients reported service needs, particularly for mental health services (25.2%) and support groups (17.7%). Having ≥2 comorbidities on the AYA index was associated with higher mental health service needs [OR, 2.05; 95% confidence interval (CI), 1.10-3.82] adjusting for demographic and clinical factors. Comorbidities were associated with fair/poor self-reported health status. CONCLUSION: The AYA HOPE Index is a more comprehensive comorbidity index for AYA cancer patients than existing indices, and the number of comorbidities is associated with service needs and health status. IMPACT: The AYA HOPE index could identify patients' additional service needs early in therapy.

Better postdiagnosis diet quality is associated with less cancer-related fatigue in breast cancer survivors.

PURPOSE: A comprehensive understanding of the role of modifiable health behaviors in effective management of cancer-related fatigue is needed. Among breast cancer survivors, we examined how postdiagnosis diet quality, independently and jointly with physical activity, is related to fatigue, and the potential mediating role of inflammation. METHODS: Seven hundred seventy women diagnosed with stage 0-IIIA breast cancer in the Health, Eating, Activity, and Lifestyle study completed food frequency and physical activity questionnaires 30 months postdiagnosis. We scored diet quality using the Healthy Eating Index 2010 (HEI-2010). Serum concentrations of C-reactive protein (CRP) were measured in fasting 30-ml blood samples. Multidimensional fatigue was measured 41 months postdiagnosis using the 22-item revised Piper Fatigue Scale. In multivariate linear models, we determined whether fatigue was associated HEI-2010 quartiles (Q1-Q4), and a variable jointly reflecting HEI quartiles and physical activity levels. RESULTS: Survivors with better-quality diets (Q4 vs. Q1) had lower total fatigue (4.1 vs. 4.8, p-contrast = 0.003) and subscale scores (behavioral severity 3.4 vs. 4.2, p-contrast = 0.003; affective meaning 3.9 vs. 4.8, p-contrast = 0.007; sensory 4.4 vs. 5.2, p-contrast = 0.003; cognitive 4.6 vs. 5.0, p-contrast = 0.046). Least squares estimates of fatigue were similar in models including CRP. Compared to survivors with poor-quality diets and no physical activity, survivors with better-quality diets and meeting physical activity recommendations had significantly lower behavioral severity (3.2 vs. 4.7, p-contrast = 0.002) and sensory (3.8 vs. 4.8. p-contrast = 0.006) fatigue scores. CONCLUSION: In this large breast cancer survivor cohort, postdiagnosis diet quality was inversely and independently associated with fatigue. IMPLICATIONS FOR CANCER SURVIVORS: Future interventions designed to improve multiple energy balance behaviors can provide insight into their associations with fatigue.

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.

The association between television watching time and all-cause mortality after breast cancer.

PURPOSE: Sedentary time is a rapidly emerging independent risk factor for mortality in the general population, but its prognostic effect among cancer survivors is unknown. In a multiethnic, prospective cohort of breast cancer survivors, we hypothesized that television watching time would be independently associated with an increased risk of death from any cause. METHODS: The Health, Eating, Activity, and Lifestyle Study cohort included 687 women diagnosed with local or regional breast cancer. On average 30 (±4) months postdiagnosis, women completed self-report assessments on time spent sitting watching television/videos in a typical day in the previous year. Multivariate Cox proportional hazards models were used to estimate hazard ratios (HR) and 95 % confidence intervals (CI) for death from any cause (n = 89) during the 7 years of follow-up. RESULTS: Television time (top tertile vs. bottom tertile) was positively related to risk of death (HR, 1.94; 95 % CI, 1.02, 3.66, p trend = 0.024), but the association was attenuated and not statistically significant after adjustment for aerobic moderate-vigorous intensity physical activity (HR, 1.70; 95 % CI, 0.89, 3.22, p trend = 0.14) and all covariates (HR, 1.39; 95 % CI, 0.69, 2.82, p trend = 0.48). CONCLUSION: In this first published investigation on this topic, we did not observe a statistically significant multivariate-adjusted association between television watching time and risk of death among women diagnosed with breast cancer. IMPLICATIONS FOR CANCER SURVIVORS: These results begin an evidence base on this topic that can be built upon to inform lifestyle recommendations for this expanding, aging population.

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

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

Impact of cancer on work and education among adolescent and young adult cancer survivors.

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, χ(2) 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 effective transition of these cancer survivors to the workplace/school after treatment.

Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study.

INTRODUCTION: Cancer is rare in adolescents and young adults (AYA), but these patients have seen little improvement in survival in contrast to most other age groups. Furthermore, participation in research by AYAs is typically low. We conducted a study to examine the feasibility of recruiting a population-based sample of AYA survivors to examine issues of treatment and health outcomes. METHODS: Individuals diagnosed in 2007-08 and age 15-39 at the time of diagnosis with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma were identified by 7 Surveillance, Epidemiology, and End-Results (SEER) cancer registries, mailed surveys within 14 months after diagnosis and again a year later, and had medical records reviewed. RESULTS: 525 (43%) of the eligible patients responded, 39% refused and 17% were lost to follow-up. Extensive efforts were required for most potential respondents (87%). 76% of respondents completed the paper rather than online survey version. In a multivariate model, age, cancer site, education and months from diagnosis to the first mailing of the survey were not associated with participation, although males (p < 0.01), Hispanics and non-Hispanic blacks (p < 0.001) were less likely to participate. 91% of survivors completing the initial survey completed the subsequent survey. DISCUSSION: Despite the response rate, those who participated adequately reflected the population of AYA cancer survivors. The study demonstrates that cancer registries are valuable foundations for conducting observational, longitudinal population-based research on AYA cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Achieving a reasonable response rate in this population is possible, but requires extensive resources.