Indicators of developmental status among adolescents and young adults with cancer: Perceived adult status, social milestones, and health-related quality of life.

OBJECTIVE: Developmental disruption contributes to poor psychosocial outcomes among adolescents and young adults (AYAs) with cancer, though indicators of AYAs' developmental status are not well understood. In this study, we describe perceived adult status as a novel developmental indicator and examine its associations with social milestones achievements and health-related quality of life (HRQoL). METHODS: For this secondary analysis, AYAs with cancer were recruited using a 2 (on/off treatment) × 2 [emerging adults (EAs) 18-25 years-old, young adults (YAs) 26-39 years-old] stratified sampling design through an online research panel. Surveys assessed perceived adult status (i.e., self-perception of the extent to which one has reached adulthood), social milestones (marital, child-rearing, employment, educational status), demographic and treatment characteristics, and HRQoL. Generalized linear models tested associations between perceived adult status, social milestones, and HRQoL. RESULTS: AYAs (N = 383; Mage  = 27.2, SD = 6.0) were majority male (56%) and treated with radiation without chemotherapy (37%). Most EAs (60%) perceived they had reached adulthood in some ways; most YAs (65%) perceived they had reached adulthood. EAs who perceived they had reached adulthood were more likely to be married, raising a child, and working than EAs who did not perceive they had reached adulthood. Among EAs, lower perceived adult status was associated with lower HRQoL when accounting for social milestones. Among YAs, perceived adult status was not associated with social milestones and neither perceived adult status nor social milestones were associated with HRQoL. CONCLUSIONS: Perceived adult status may be a useful developmental indicator for EAs with cancer. Findings highlight unique developmental needs of EAs and utility of patient perspectives for understanding developmental outcomes.

Barriers to Receiving Follow-up Care Among Childhood Cancer Survivors.

Little is known on why adherence to follow-up care in childhood cancer survivors (CCS) is lacking. This study characterized barriers to adherence to follow-up care among CCS, identified sociodemographic correlates of barriers, and examined whether barriers to follow-up care relate to health-related quality of life. Adult CCS (N=84) were anonymously surveyed via REDCap using the Barriers to Care Questionnaire (BCQ) and the Quality of Life Scale-Cancer Survivor (QOL-CS). Both descriptive and correlation analyses were conducted. The median BCQ total score was 88.5 (interquartile ranges:78.4 to 95.7), with the greatest barriers reported in the Skills (eg, ease of navigating the healthcare system) and Pragmatism subscales (eg, cost). There was a statistically significant correlation between the BCQ total score and the QOL-CS total score (rs=0.47, P <0.0001) and the physical, psychological, and social QOL-CS subscales (all P 's<0.05). The results found that barriers to follow-up care for CCS are mostly related to cost and appointment logistics, and that more barriers to care is associated with lower health-related quality of life among CCS. Identifying barriers to follow-up care is the first step in improving adherence, which would allow for earlier detection of late effects of cancer therapy and thereby result in reductions in morbidity and mortality.

Health-related quality of life in adolescents and young adults with cancer who received radiation therapy: a scoping review.

PURPOSE: Radiation therapy (RT) is a critical component of treatment for adolescents and young adults (AYAs, age 15-39 years old) diagnosed with cancer. Limited prior studies have focused on AYAs receiving RT despite the potentially burdensome effects of RT. We reviewed the literature to assess health-related quality of life (HRQOL) in AYAs with cancer who received RT. METHODS: The MEDLINE, EMBASE, and Web of Science databases were searched in January 2022 to identify studies that analyzed HRQOL measured by patient-reported outcomes in AYAs who received RT. After title (n = 286) and abstract (n = 58) screening and full-text review (n = 19), articles that met eligibility criteria were analyzed. RESULTS: Six studies were analyzed. Two studies included AYAs actively receiving treatment and all included patients in survivorship; time between diagnosis and HRQOL data collection ranged from 3 to > 20 years. Physical and mental health were commonly assessed (6/6 studies) with social health assessed in three studies. AYA-relevant HRQOL needs were rarely assessed: fertility (1/6 studies), financial hardship (1/6), body image (0/6), spirituality (0/6), and sexual health (0/6). No study compared HRQOL between patients actively receiving RT and those post-treatment. None of the studies collected HRQOL data longitudinally. CONCLUSION: HRQOL data in AYAs receiving RT is limited. Future studies examining longitudinal, clinician- vs. patient-reported, and AYA-relevant HRQOL are needed to better understand the unique needs in this population.

Comparing Barriers and Facilitators to Adolescent and Young Adult Clinical Trial Enrollment Across High- and Low-Enrolling Community-Based Clinics.

BACKGROUND: Adolescent and young adult (AYA) patients with cancer are underrepresented on cancer clinical trials (CCTs), and most AYAs are treated in the community setting. Past research has focused on individual academic institutions, but factors impacting enrollment vary across institutions. Therefore, we examined the patterns of barriers and facilitators between high- and low-AYA enrolling community-based clinics to identify targets for intervention. MATERIALS AND METHODS: We conducted 34 semi-structured interviews with stakeholders employed used at National Cancer Institute Community Oncology Research Program (NCORP) affiliate sites ("clinics"). Stakeholders (eg, clinical research associates, patient advocates) were recruited from high- and low-AYA enrolling clinics. We conducted a content analysis and calculated the percentage of stakeholders from each clinic type that reported the barrier or facilitator. A 10% gap between high- and low-enrollers was considered the threshold for differences. RESULTS: Both high- and low-enrollers highlighted insufficient resources as a barrier and the presence of a patient eligibility screening process as a facilitator to AYA enrollment. High-enrolling clinics reported physician gatekeeping as a barrier and the improvement of departmental collaboration as a facilitator. Low-enrollers reported AYAs' uncertainty regarding the CCT process as a barrier and the need for increased physician endorsement of CCTs as a facilitator. CONCLUSIONS: High-enrolling clinics reported more barriers downstream in the enrollment process, such as physician gatekeeping. In contrast, low-enrolling clinics struggled with the earlier steps in the CCT enrollment process, such as identifying eligible trials. These findings highlight the need for multi-level, tailored interventions rather than a "one-size-fits-all" approach to improve AYA enrollment in the community setting.

Survival outcomes for cancer types with the highest death rates for adolescents and young adults, 1975-2016.

BACKGROUND: Five-year relative survival for adolescent and young adult (AYA) patients with cancer diagnosed at the ages of 15 to 39 years is 85%. Survival rates vary considerably according to the cancer type. The purpose of this study was to analyze long-term survival trends for cancer types with the highest mortality among AYAs to determine where the greatest burden is and to identify areas for future research. METHODS: Using data from the Surveillance, Epidemiology, and End Results cancer registry and the National Center for Health Statistics, the authors examined the incidence, mortality, and survival for the 9 cancer types with the highest mortality rates in this age group from 1975 to 2016. JPSurv, new survival trend software, was used in the analysis. RESULTS: Results suggested significant improvements in 5-year relative survival for brain and other nervous system tumors, colon and rectum cancer, lung and bronchus cancer, acute myeloid leukemia, and non-Hodgkin lymphoma (all P values < .05). Limited or no improvement in survival was found for female breast cancer, cervical cancer, ovarian cancer, and bone and joint sarcomas. CONCLUSIONS: Five-year relative survival for multiple cancer types in AYAs has improved, but some common cancer types in this group still show limited survival improvements (eg, ovarian cancer). Survival improvements in colorectal cancer have been overshadowed by its rising incidence, which suggests a substantial disease burden. Future research should focus on female breast, bone, ovarian, and cervical cancers, which have seen minimal or no improvements in survival. LAY SUMMARY: Survival trends for adolescents and young adults with cancer are presented from a 40-year period. Although survival progress is noted for brain cancer, lung cancer, acute myeloid leukemia, and colon and rectum cancer, the incidence of colon and rectum cancer remains high. Minimal progress is evident for female breast, bone, ovarian, and cervical cancers, which are in need of renewed focus.

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.

Inclusion of Patient-Reported Outcomes in Adolescent and Young Adult Phase III Therapeutic Trials: An Analysis of Cancer Clinical Trials Registered on ClinicalTrials.gov.

OBJECTIVES: There is a paucity of research on the impact of cancer treatment on the health-related quality of life (HRQOL) of adolescent and young adult (AYA) patients with cancer. Patient-reported outcomes (PROs) are self-report measures used to assess HRQOL and symptom burden. The extent to which PROs have been included in trials that include common AYA cancer types has not been previously assessed. METHODS: Therapeutic phase 3 trials among common AYA cancer types (Hodgkin lymphoma, non-Hodgkin lymphoma, acute lymphoblastic leukemia, sarcomas, and germ cell tumors) initiated between 2007 and 2020 were identified on ClinicalTrials.gov. The proportions and characteristics of trials including a PRO endpoint were assessed. For comparison with an older population, the proportion of breast and colorectal therapeutic phase 3 trials including PRO endpoints were assessed. RESULTS: Eighty-seven studies met the inclusion criteria. Overall, 20.7% of therapeutic phase 3 AYA trials included a PRO endpoint, and only one trial published PRO data. Germ cell tumors (42.9%) and non-Hodgkin lymphoma (40%) trials had the highest proportions of PRO inclusion. The European Organization for Research and Treatment of Cancer generic, cancer-specific quality of life questionnaire was the most commonly used PRO measure; nevertheless, the measures used varied within and between cancer types. The proportion of trials including a PRO endpoint did not change significantly between 2007 to 2013 and 2014 to 2020 (18.6% vs 22.7%, P=.79). CONCLUSIONS: Few therapeutic phase 3 AYA cancer trials include PRO endpoints, fewer publish PRO data, and there is no homogeneity in the measures administered. Therapeutic trials represent an underused opportunity to capture PRO data in the AYA population with the goal of improving HRQOL outcomes.

Trajectories of fatigue in a population-based sample of older adult breast, prostate, and colorectal cancer survivors: an analysis using the SEER-MHOS data resource.

PURPOSE: Fatigue is one of the most common and distressing symptoms experienced by cancer survivors. Understanding fatigue trajectories from pre- to post-diagnosis could inform fatigue prevention and management strategies. METHODS: We used the Surveillance, Epidemiology and End Results Medicare Health Outcomes Survey (SEER-MHOS) linked data resource to characterize fatigue trajectories and their predictors 1214 older adult survivors of breast, colorectal, or prostate cancer. Fatigue was measured prior to the cancer diagnosis (T0) and at two timepoints after diagnosis (T1: mean = 20 months and T2: mean = 39 months post-diagnosis). Latent growth curve modeling and mixed effects models for repeated measurements were used to investigate fatigue experiences before and after a cancer diagnosis. RESULTS: Overall, mean fatigue T-scores declined (T0 = 50, T1 = 46, and T2 = 45) indicating worsening fatigue over time. Four latent trajectory subgroups were identified: severe fatigue worsening over time (8.2% of sample), severe fatigue persisting over time (14.4%), no fatigue pre-diagnosis and mild fatigue post-diagnosis (44.4%), and not fatigued (33%). Age, cancer stage, comorbidities, and depressed mood predicted membership in the two trajectory groups experiencing severe fatigue that persisted or that worsened post-diagnosis. Older age, advanced cancer stage at diagnosis, and depressed mood were significantly associated with worsening fatigue from T1 to T2 (all p < 0.0001). CONCLUSIONS: Evaluating cancer patients for depressive symptoms and considering prior fatigue levels, age, comorbid conditions, and cancer stage may help providers anticipate fatigue trajectories and implement pre-emptive strategies to lessen fatigue impact.

Examination of individual and multiple comorbid conditions and health-related quality of life in older cancer survivors.

PURPOSE: Older cancer survivors (≥ 65 years at diagnosis) are at high-risk for multimorbidity (2 + comorbid conditions). However, few studies have utilized a generalizable sample of older cancer survivors to understand how individual comorbid conditions, as opposed to total comorbidity burden, are associated with health-related quality of life (HRQOL). We examined associations between HRQOL outcomes (pain, fatigue, physical function), individual comorbidities (cardiovascular disease [CVD], lung disease, diabetes, arthritis) and total comorbidity (cancer-only, cancer + 1 condition, cancer + 2 or more conditions). METHODS: Utilizing a population-based sample of 2019 older cancer survivors, we tested associations between comorbid conditions and the HRQOL outcomes using generalized linear models. HRQOL domains were assessed using Patient-Reported Outcome Measurement Information System® (PROMIS®) measures. Comorbidity was assessed via self-report. RESULTS: Cancer survivors with lung disease reported significantly worse physical functioning (ß = - 4.96, p < 0.001), survivors with arthritis reported significantly higher pain (ß = 4.37, p < 0.001), and survivors with CVD reported significantly higher fatigue (ß = 3.45, p < 0.001) compared to survivors without each condition. Having cancer + 1 condition was not as strongly associated with all outcomes as when individual conditions were tested (e.g. pain: ß = 3.09, p < 0.001). Having 2+ comorbidities had a stronger association with all outcomes (e.g. physical function: ß = - 7.51, p < 0.001) than examining conditions individually. CONCLUSIONS: Knowing the specific comorbid condition profile of an older cancer survivor provides insight into specific HRQOL outcomes that may be impaired in cancer survivorship, but understanding total comorbidity burden, regardless of the specific conditions, sheds light on survivors at-risk for multiple impairments in HRQOL. This information, taken together, can inform risk-stratified survivorship care.

Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention.

Adolescents and young adults (AYAs) are underrepresented in cancer clinical trials (CCTs). Limited trial enrollment slows progress in improving survival rates and prevents the collection of valuable biospecimens. A systematic literature review was conducted to assess barriers and facilitators to AYA enrollment in CCTs and to identify opportunities to improve enrollment. The PubMed MEDLINE, Web of Science, Scopus, and PsycINFO databases were searched to identify studies relevant to AYA CCT enrollment. Eligibility criteria included the qualitative and/or quantitative evaluation of barriers and facilitators to AYA enrollment. One hundred fifty-five unique publications were identified; 13 were included in the final analysis. Barriers to AYA enrollment in CCTs included a lack of existing trials applicable to the patient population, limited access to available CCTs, and a lack of physician awareness of relevant trials. Facilitators of enrollment included optimizing the research infrastructure, improving the awareness of available CCTs among providers, and enhancing communication about CCTs between providers and patients. In conclusion, the limited available research reports institution- and patient-level barriers and facilitators to AYA CCT enrollment. Because of persistent disparities in AYA enrollment, there is an urgent need to further identify the barriers and facilitators to AYA CCT enrollment to determine actionable areas for intervention.

Online Sex Partner Meeting Venues as a Risk Factor for Testing HIV Positive Among a Community-Based Sample of Black Men Who Have Sex With Men.

OBJECTIVES: In the United States, black men who have sex with men (BMSM) are disproportionately affected by the HIV epidemic. The elevated estimates of HIV among BMSM suggest that to slow rates of HIV infections, a range of factors that may contribute to transmission must be researched. Use of online venues for seeking out sex partners is one such area that may further advance our understanding of risks for HIV among BMSM. METHODS: Black men who have sex with men residing in Atlanta, GA, reporting HIV-negative/unknown status completed survey assessments and HIV antibody testing. Logistic regression using generalized linear modeling was used to conduct both bivariate and multivariable analyses of psychosocial variables-that is, substance use, sexually transmitted infection symptoms/diagnoses, sexual risk behavior, online sex partner meeting, and HIV test results. RESULTS: Two hundred thirty-two BMSM tested HIV negative and 39 BMSM tested HIV positive (14% new diagnoses). Reporting symptoms of a rectal sexually transmitted infection (odds ratio, 4.28; 95% confidence interval, 1.06-15.41) and use of sexual networking apps (odds ratio, 2.15; 95% confidence interval, 1.06-4.36) were both associated with testing HIV positive in a multivariable analysis. CONCLUSIONS: The use of sexual networking apps is associated with risks for HIV infection above and beyond what is captured by sexual risk behavior alone. Evaluating how sexual networking apps affect sexual networks and social norms regarding sexual risk taking and HIV transmission is an important and novel area for HIV prevention and intervention development.

An evaluation of factors associated with sexual risk taking among Black men who have sex with men: a comparison of younger and older populations.

In the United States, rates of human immunodeficiency virus (HIV) infection are highest among Black men who have sex with men (BMSM). Prior research indicates that younger BMSM in particular (i.e., BMSM 29 years of age and younger) are most at risk for HIV infection, and that HIV incidence in this subpopulation has risen in recent years. It remains unclear, however, why younger BMSM, relative to BMSM 30 years of age and older, are at increased risk for HIV infection. For the current study, we surveyed 450 BMSM located in the Atlanta, GA metropolitan and surrounding areas. We assessed BMSM's depressive symptoms, substance use during sex, psycho-social risk factors (i.e., HIV risk perceptions, condom use self-efficacy, internalized homophobia, and perceived HIV stigmatization), and sexual risk taking (i.e., condomless anal intercourse [CAI]). We found that younger BMSM (YBMSM) and older BMSM (OBMSM) differed with respect to factors associated with CAI. In multivariable models, alcohol use before or during sex, lower educational attainment, and sexual orientation (i.e., bisexual sexual orientation) were significantly associated with increased CAI for YBMSM, while HIV risk perceptions and internalized homophobia were significantly, negatively associated with CAI among OBMSM. Rates of engaging in CAI were similar across the two age cohorts; however, factors related to CAI varied by these two groups. Findings emphasize the need to consider targeted interventions for different generational cohorts of BMSM.

Feasibility and Clinical Utility of Patient-Reported Outcome Measurement Information System-29 in a Newly Established Adolescent and Young Adult Oncology Program.

Purpose: Despite improvements in survival, adolescent and young adult (AYA) oncology patients are at high risk for experiencing negative health-related quality of life (HRQOL) outcomes. AYA cancer programs have attempted to develop assessment tools to identify areas of need. We aimed to demonstrate the feasibility/utility of the Patient-Reported Outcome Measurement Information System®-29 (PROMIS®-29) within an AYA oncology program clinic. Methods: AYA patients were referred by oncologists to the AYA oncology program at Prisma Health. The PROMIS-29 v2.0 survey was administered to AYAs at point of care. Feasibility of distribution and completion rate of surveys were determined. PROMIS surveys were self-reported and subsequently scored using standardized methods. The domains assessed included physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles/activities, pain interference, and pain intensity. Qualitative descriptions of AYA care delivery based on survey responses at the patient level and programmatic level are also presented. Results: Between May 2017 and 2019, 134 AYAs who were newly diagnosed or in treatment completed the survey. Distribution and completion rates for the PROMIS-29 were both 100%, and meaningful changes in program-level services were implemented as a result of PROMIS-29 score patterns. Within the entire cohort, T-scores for anxiety, fatigue, and physical function reached clinically relevant thresholds. Conclusion: PROMIS offers a feasible opportunity for AYA programs to measure clinically useful HRQOL outcomes in AYAs. The survey can be used to deliver real-time AYA care to recently diagnosed and in-treatment AYAs and make programmatic changes within AYA oncology programs.

A Developmental Science Approach to Informing Age Subgroups in Adolescent and Young Adult Cancer Research.

PURPOSE: Adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors are developmentally heterogenous, and this population consists of at least three distinct theoretically informed subgroups, as follows: adolescents, emerging adults, and young adults. However, there are limited evidence-based recommendations for delineating the validity of these subgroups in cancer-specific research. We sought to inform recommended chronological age ranges for each subgroup based on developmental processes. METHODS: The data were collected using a 2x3 stratified sampling design (on-vs. off-treatment; ages 15-17, 18-25, 26-39) and a cross-sectional survey. AYAs (N = 572) completed three subscales of the Inventory of Dimensions of Emerging Adulthood (identity exploration, experimentation/possibilities, and other-focused), and we used regression tree analyses to identify distinct shifts in mean subscale scores that would indicate unique subgroups. Models included (a) chronological age, (b) chronological age + cancer-related variables, and (c) chronological age + sociodemographic/psychosocial variables as predictors of each developmental measure. RESULTS: The recommended age ranges for AYA survivors receiving active treatment were consistent with prior research as follows: adolescents ages 15-17, emerging adults ages 18-24, and young adults ages 25-39. Models for off-treatment survivors suggested four distinct subgroups: adolescents ages 15-17, emerging adults ages 18-23, and 'younger' (ages 24-32) and 'older' young adults (ages 33-39). No sociodemographic or psychosocial variables meaningfully shifted these recommendations. DISCUSSION: Our results suggest that three developmental subgroups remain appropriate for on-treatment survivors, but a second young adult subgroup (ages 33-39) emerged for off-treatment survivors. Therefore, development disruptions may be more likely to occur or manifest in post-treatment survivorship.

Cancer Resource and Information Support (CRIS) for Bladder Cancer Survivors and Their Caregivers: Development and Usability Testing Study.

BACKGROUND: Bladder cancer survivors and their caregivers face profound practical (eg, use of stoma appliances and care for urinary diversion methods) and psychosocial (eg, depression and anxiety) challenges after surgical treatment with cystectomy. OBJECTIVE: To improve the health-related quality of life and postsurgical outcomes of both bladder cancer survivors and their caregivers, the team, in collaboration with Sourcetop, Inc (software design) and Dappersmith (graphic design), developed the Cancer Resource and Information Support (CRIS) software. The purpose of this manuscript is to report on the development and usability testing of the CRIS software. METHODS: The development of the CRIS software was guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for developing behavioral treatments for chronic diseases. The ORBIT model is unique in that it proposes a flexible and progressive process with prespecific clinically significant milestones for forward movement and returns to earlier stages for refinement, and it facilitates communication among diverse groups by using terminology from the drug development model. This paper focuses on 2 phases of the ORBIT model: phase IA: define and IB: refine. During phase IA, the study team developed solutions for the stated clinical problem-adjustment to life post cystectomy-by reviewing the literature and collecting feedback from clinicians, professional organizations, bladder cancer survivors, and their caregivers. During Phase IB, the study team focused on tailoring content in the CRIS software to the user as well as usability testing with 7 participants. RESULTS: The finished product is CRIS, a web-based software for survivors of bladder cancer and their caregivers to serve as a health management and lifestyle resource after surgery. Overarching themes from phase IA (participant feedback) included how to use new medical equipment, tips and tricks for easier living with new medical equipment, questions about health maintenance, and questions about lifestyle modifications. To accommodate our target population, we also incorporated recommendations from the Americans with Disabilities Act for website design, such as large text size, large paragraph spacing, highly contrasting text and background colors, use of headings and labels to describe the purpose of the content, portrait orientation without the need for horizontal scrolling, multiple ways to access a web page within a set of pages, ability to navigate web pages in sequential order, and in-text links that are descriptive. Usability participants evaluated CRIS very positively, indicating that it was easy to use, the functions were well-integrated, and if available, they would use CRIS frequently. CONCLUSIONS: CRIS, developed over the course of 18 months by integrating feedback from experts, literature reviews, and usability testing, is the first web-based software developed for bladder cancer survivors and their caregivers to help them adjust to life following cystectomy. The efficacy of CRIS in improving patients' and caregivers' quality of life is currently being evaluated in a randomized controlled trial.

Patient-reported quality of life in adolescents and young adults with cancer who received radiation therapy.

BACKGROUND: Radiation therapy (RT) is a common treatment for adolescents and young adults (AYAs, 15-39 years old) with cancer; however, it may cause toxicities that affect health-related quality-of-life (HRQOL). Thus, we assessed HRQOL in AYAs before, during, and after RT. METHODS: We identified 265 AYAs who completed HRQOL PROMIS® surveys before (n = 87), during (n = 84), or after (n = 94) RT. Higher PROMIS® score represents more of the concept. Mean scores were compared to the general US population and minimally important differences (MIDs) were used to evaluate the impact of cancer on HRQOL. Linear regression modeling was used to evaluate the effect of clinical and demographic factors on PROMIS scores. RESULTS: Median [IQR] age was 26 [20-31] years. Cancer types varied; most had sarcoma (26%) or CNS malignancy (23%). Compared to the general US population, the before RT cohort had worse anxiety (mean score 55.2 vs. 50, MID 3, p < 0.001) and the during RT cohort had worse global physical health (mean score 44.9 vs. 50, MID 5, p < 0.001). In the during RT cohort, patients with regional/distant disease had significantly worse pain (B = 15.94, p < 0.01) and fatigue (B = 14.20, p = 0.01) than patients with localized disease. In the after RT cohort, adolescents (15-18 years) and young adults (26-39 years) had worse global physical health (B = -6.87, p < 0.01, and B = -7.87, p < 0.01, respectively) and global mental health (B = -6.74, p < 0.01, and B = -5.67, p = 0.01, respectively) than emerging adults (19-25 years). CONCLUSIONS: AYAs with cancer receiving RT experience impairments in various domains of HRQOL. Advanced cancer stage may contribute to poorer short-term HRQOL and developmental stage may contribute to differing long-term HRQOL.

Association of Patient-Reported Health-Related Quality of Life With Physician-Reported Toxicities in Adolescents and Young Adults Receiving Radiation Therapy for Cancer.

PURPOSE: Radiation therapy (RT) may cause toxicities in adolescents and young adults (AYAs, age 15-39 years) with cancer. However, the range of RT-related toxicities in AYAs and the affect on health-related quality of life (HRQOL) has not been well studied. We performed a cross-sectional study in AYAs with cancer who received RT to identify RT-related toxicities and examine their impact on HRQOL. MATERIALS AND METHODS: A total of 178 AYAs received RT and completed PROMIS HRQOL instruments from 2018 to 2022. Acute and late physician-graded Common Terminology Criteria for Adverse Events RT-related toxicities were extracted and described. Multivariable linear regression was used to evaluate the association of RT-related toxicity with HRQOL scores during and post-RT. Minimally important differences were used to evaluate the clinical relevance of relationships. RESULTS: Eighty-four AYAs completed HRQOL surveys during RT and 94 post-RT. In the during-RT cohort, 75 AYAs (89%) had acute RT-related toxicities, a majority of which were grade 1 (n = 49, 65%). AYAs who experienced acute grade 2 or greater toxicities reported worse global mental health (B = -7.35, P < .01) and worse pain (B = 5.25, P = .01) than those with acute grade 1 or no toxicities. In the post-RT cohort, the median (IQR) time from RT to survey completion was 24 (14-27) months. Forty-eight AYAs (51%) had late RT-related toxicities, a majority of which were grade 1 (n = 37, 77%). AYAs who experienced late grade 2 or greater toxicities reported worse global mental health (B = -8.07, P = .01), worse social roles (B = -9.96, P < .01), and greater sleep disturbance (B = 10.75, P < .01) than those with late grade 1 or no RT toxicities. CONCLUSION: The presence of acute and late grade 2 or greater RT-related toxicities may contribute to worse HRQOL, especially global mental health, in AYAs. Screening and early interventions to mitigate RT-related toxicities are needed to improve AYA HRQOL.

Barriers and Facilitators to Adolescent and Young Adult Cancer Trial Enrollment: NCORP Site Perspectives.

Background: Although it is well documented that adolescents and young adults (AYAs) with cancer have low participation in cancer clinical trials (CCTs), the underlying reasons are not well understood. We used the National Cancer Institute Community Oncology Research Program (NCORP) network to identify barriers and facilitators to AYA CCT enrollment, and strategies to improve enrollment at community-based and minority and/or underserved sites. Methods: We performed one-on-one semistructured qualitative interviews with stakeholders (NCORP site principle investigators, NCORP administrators, physicians involved in enrollment, lead clinical research associates or clinical research nurses, nurse navigators, regulatory research associates, patient advocates) in the AYA CCT enrollment process. NCORP sites that included high and low AYA-enrolling affiliate sites and were diverse in geography and department representation (eg, pediatrics, medical oncology) were invited to participate. All interviews were recorded and transcribed. Themes related to barriers and facilitators and strategies to improve enrollment were identified. Results: We conducted 43 interviews across 10 NCORP sites. Eleven barriers and 13 facilitators to AYA enrollment were identified. Main barriers included perceived limited trial availability and eligibility, physician gatekeeping, lack of provider and research staff time, and financial constraints. Main facilitators and strategies to improve AYA enrollment included having a patient screening process, physician endorsement of trials, an "AYA champion" on site, and strong communication between medical and pediatric oncology. Conclusions: Stakeholders identified several opportunities to address barriers contributing to low AYA CCT enrollment at community-based and minority and/or underserved sites. Results of this study will inform development and implementation of targeted interventions to increase AYA CCT enrollment.

Healthcare providers' discussions of physical activity with older survivors of cancer: Potential missed opportunities for health promotion.

OBJECTIVES: Physical activity (PA) promotes physical functioning and health-related quality of life in older survivors of cancer. Using a population-based sample of Medicare Advantage beneficiaries, we aimed to characterize the survivors who reported discussing PA with their healthcare provider. MATERIALS AND METHODS: Data from the Surveillance, Epidemiology, and End Results (SEER) cancer registries was linked with the 2008-2014 Medicare Health Outcomes Survey (MHOS). Older survivors diagnosed with localized- or regional-stage female breast, prostate, or colorectal cancer ≥24 months prior to survey and had visited a healthcare provider in the previous year were included in the multiple logistic regression model. Best-fitting models were identified using the Hosmer and Lemeshow Goodness-of-Fit test. RESULTS: The final sample (N = 5630) included 3006 survivors who reported discussing PA and 2624 survivors who did not report discussing PA. Older survivors of cancer were significantly more likely to report discussing PA if they had a history of cardiovascular disease (p < .001), diabetes (p < .001), or musculoskeletal disease (p < .001); had a history of fall(s) in the previous twelve months (p = .003); or were obese (p < .001). DISCUSSION: PA is an important aspect of the management of cancer, other comorbid conditions, and maintenance of physical functioning in older adulthood. The results suggest that PA discussions are not occurring consistently across survivors, and key opportunities for health promotion are being missed. Future work should identify ways to encourage these conversations in all cancer follow-up appointments.

A Systematic Literature Review of HPV Vaccination Barriers Among Adolescent and Young Adult Males.

The human papillomavirus (HPV) causes several cancers and genital warts among sexually active adolescent and young adult (AYA) males. Quadrivalent HPV vaccines were approved for use in the AYA male population in 2010, but vaccination rates have plateaued at around 10%-15%. A better understanding of the barriers AYA male patients, their parents, and their health care providers (HCPs) experience with respect to vaccination uptake is necessary for tailoring interventions for this population. A literature search was conducted through the PubMed and PsycINFO databases in October 2017. Studies were included if they specified at least one barrier to vaccination uptake in AYA males. Studies were excluded if they did not focus on AYA males, their parents, or their HCP; were conducted outside the United States; or were published before 2010. A total of 23 studies were reviewed, and analysis found that these three groups (i.e., AYA males, parents, and HCPs) had significantly different concerns regarding vaccination. The identified themes included the lack of HPV vaccine awareness/information, misinformation about HPV, lack of communication, financial issues relating to uptake, demographic/perceived social norms, and sexual activity. Health care professionals working directly with AYA males and their parents should provide an open route of communication regarding these sensitive issues, and further educate families on the importance of HPV vaccines in reducing the incidence of certain cancers among men in later adulthood.