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

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.

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).

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.

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.

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.

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.

A systematic review of health-related quality of life outcomes in psychosocial intervention trials for adolescent and young adult cancer survivors.

Background: The National Cancer Institute has catalyzed research in adolescent and young adult (AYA) oncology by identifying the need for supportive care intervention studies and psychometrically robust health-related quality of life (HRQOL) measures. We evaluated progress toward these goals (1) examining changes in the number of registered psychosocial intervention trials being conducted with AYAs over time; (2) determining what domains of HRQOL were assessed across these intervention trials; and (3) identifying the most frequently used measures of HRQOL.

Methods: We conducted a systematic review of psychosocial intervention trials for AYAs registered on ClinicalTrials.

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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).

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.

Health Care Discrimination, Sex Behavior Disclosure, and Awareness of Pre-Exposure Prophylaxis Among Black Men Who Have Sex With Men.

Background: Perceived healthcare-related discrimination and disclosure of same-sex sex behaviors to healthcare providers may act as barriers to awareness of pre-exposure prophylaxis (PrEP) for Black/African-American men who have sex with men (BMSM). Given the elevated rates of HIV transmission among young BMSM in particular, age is likely an important factor for determining the correlates of PrEP awareness unique to BMSM of different ages.

Method: 147 BMSM ( age = 30.

The Patient-Provider Relationship in Adolescent Oncology: AnExploratory Factor Analysis of a Thirteen-Item Self-Report Measure.

Purpose: The patient-provider relationship has been understudied in adolescents with cancer. The currentstudy describes an exploratory factor analysis of a patient-provider relationship self-report measure developed for use in adolescent oncology.

Methods: A self-report measure was included in an iPad/tablet survey delivered to 102 adolescent cancer patients (diagnosed between the ages of 10 and 20).

Adolescent cancer patients' perceived quality of cancer care: The roles of patient engagement and supporting independence.

Objectives: A lack of focus on variation in engagement among cancer populations of differing developmental stages led us to examine the associations between patient engagement, the patient-provider relationship, cognitive development, readiness to transition to adulthood (transitional readiness) and perceived quality of care.

Methods: A sample of 101 adolescent cancer patients (diagnosed 10-20 years) completed survey items concerning patient engagement, dimensions of the patient-provider relationship, cognitive development, transitional readiness, and demographic characteristics using an iPad/tablet during a routine clinic visit.

Results: Patient engagement was not significantly associated with perceived quality of care (b = .

Linking Reminders and Physician Breast Cancer Screening Recommendations: Results From a National Survey.

Purpose: Physician reminders have successfully increased rates of mammography. However, considering recent changes to breast cancer screening guidelines that disagree on the optimal age to start and stop mammography screening, we sought to examine the extent to which reminders have been deployed for breast cancer screening targeting younger and older patients.

Methods: A mailed survey was sent to a national sample of 2,000 primary care physicians between May and September 2016.

A Comparison of HIV-Related Risk Factors Between Black Transgender Women and Black Men Who Have Sex with Men.

Rates of HIV infection among transgender women (TW) are higher than rates observed among men who have sex with men (MSM), and black or African American individuals are at a disproportionately higher risk for HIV than individuals of other races. Limited information, however, is available regarding the needs of black TW and their risk for HIV. Numerous scholarly works and surveillance reports have combined TW with MSM, which has stymied our ability to understand the unique needs of black TW.

Sexual Health, Mental Health, and Beliefs About Cancer Treatments Among Women Attending a Gynecologic Oncology Clinic.

Introduction: Sexual health is an important, yet overlooked, aspect of quality of life for gynecologic oncologic patients. Although patients with gynecologic cancer frequently report sexual health concerns, there are limited efforts to address these problems. A comprehensive understanding of the relationship between mental health and sexual health needs to be prioritized.