Are NCI Cancer Centers Providing Adolescents and Young Adults With Cancer Focused Clinical Services? A National Survey.

BACKGROUND: This study sought to evaluate the current services and delivery models of adolescent and young adult oncology (AYAO)-specific programs at NCI-designated Cancer Centers (NCI-CCs). PATIENTS AND METHODS: NCI, academic, and community cancer centers were electronically sent surveys from October to December 2020 and administered via REDCap. RESULTS: Survey responses were received from 50 of 64 (78%) NCI-CCs, primarily completed by pediatric oncologists (53%), adult oncologists (11%), and social workers (11%). Half (51%) reported an existing AYAO program, with most (66%) started within the past 5 years. Although most programs combined medical and pediatric oncology (59%), 24% were embedded within pediatrics alone. Most programs saw patients aged 15 (55%) to 39 years (66%) mainly via outpatient clinic consultation (93%). Most centers reported access to a range of medical oncology and supportive services, but dedicated services specifically for adolescent and young adults (AYAs) were available at a much lower extent, such as social work (98% vs 58%) and psychology (95% vs 54%). Although fertility preservation was offered by all programs (100%), only two-thirds of NCI centers (64%) reported providing sexual health services to AYAs. Most NCI-CCs (98%) were affiliated with a research consortium, and a lesser extent (73%) reported collaboration between adult and pediatric researchers. Nearly two-thirds (60%) reported that AYA oncology care was important/very important to their respective institution and reported providing good/excellent care to AYAs with cancer (59%), but to a lesser extent reported good/excellent research (36%), sexual health (23%), and education of staff (21%). CONCLUSIONS: Results of this first-ever national survey to assess AYAO programs showed that only half of NCI-CCs report having a dedicated AYAO program, and that areas of improvement include staff education, research, and sexual health services for patients.

Healthcare providers' promotion of physical activity among child and adolescent cancer survivors: strategies and challenges.

PURPOSE: This study aims to investigate how healthcare providers (HCPs) promote physical activity (PA) to child and adolescent cancer survivors. METHODS: Semi-structured interviews were conducted with HCPs (n = 16; women n = 12; men n = 4) who provide care for cancer survivor youth (age 3 to 18). Participants represented 7 professions, including child life specialists, oncologists, nurse practitioners, physical therapists, and social workers. A reflexive thematic analysis was conducted to explore the techniques that HCPs use to promote PA for this patient population and ways PA promotion can improve. RESULTS: HCPs use five strategies to promote PA to cancer survivor youth: (1) broadening the definition of PA, (2) tailoring PA recommendations, (3) including families, (4) connecting patients to programming, and (5) promoting patient motivation. CONCLUSIONS: This research highlights techniques that HCPs use to promote PA to young cancer survivors and reveals the need for additional ways to support HCPs to improve PA promotion for child and adolescent cancer survivors. While HCPs emphasized the importance of PA for this patient population, they navigate barriers that limit the quality of PA discussions. IMPLICATIONS FOR CANCER SURVIVORS: Further research should explore interventions to improve PA promotion and PA participation among child and adolescent cancer survivors. By understanding the perspectives of HCPs, patients, and their families, PA promotion strategies can be improved, and more programs that support both patients and practitioners may be developed.

Guidance to Support the Implementation of Specialized Adolescent and Young Adult Cancer Care: A Qualitative Analysis of Cancer Programs.

PURPOSE: The nearly 90,000 adolescents and young adults (AYAs) diagnosed with cancer in the United States yearly have tended to occupy a no-man's land between medical and pediatric oncology, often reporting that existing models of care are misaligned with their needs and preferences. Although guidelines for optimal AYA cancer care are increasingly available, the implementation of such standards has been varied. This may be in part due to a lack of guidance for implementing specialized AYA care. In this study, we leveraged an implementation science framework to identify barriers and generate practical guidance to inform the implementation of specialized AYA cancer care. METHODS: We conducted semistructured qualitative interviews, guided by the Consolidated Framework for Implementation Research, with AYA care stakeholders (N = 32 from 14 cancer programs). Our multidisciplinary research team analyzed interview transcriptions using a template analysis approach and gleaned from interviews practical guidance for implementing specialized AYA care. RESULTS: Participants reported barriers to implementing specialized AYA care across all five Consolidated Framework for Implementation Research domains: (1) intervention characteristics (eg, costs), (2) inner setting (eg, difficulties in collaborating between pediatric and medical oncology), (3) outer setting (eg, patient-level barriers to participating in AYA services), (4) individual characteristics (eg, attitudes about AYA oncology), and (5) process (eg, lack of metrics for program evaluation). They also shared practical guidance for addressing these barriers. CONCLUSION: Emerging guidance on the core elements of AYA cancer care must be matched with guidance to support the implementation of specialized AYA care. This study contributes to the body of evidence available to inform future implementation efforts.

Empowering Adolescents and Young Adults to Support, Lead, and Thrive: Development and Validation of an AYA Oncology Child Life Program.

PURPOSE: The majority of cancer treatment programs do not focus on the unique psychosocial support needs of adolescent and young adult (AYA) patients. Recognizing this disparity, a freestanding children's hospital utilized an interdisciplinary approach to bridge the gap and develop a comprehensive program to address issues specific to new diagnosis, treatment, and survivorship in AYA oncology patients. METHODS AND INTERVENTIONS: A pediatric hospital formed a multidisciplinary team to educate, engage, and empower AYAs to participate in the development of a comprehensive program. RESULTS: The program enables peer-supported social networking and empowers patients to invest in their treatment and survivorship. The number of newly diagnosed adolescent patients accessing our program has increased 40% since the program began in 2015; attendees at AYA events increased from 99 in 2015 to 1312 in 2018, as has the number of AYA events per year. Following program implementation, our NRC Picker score of 89.3% ranks above the 90th percentile of all children's hospitals (benchmark 81.2%) on questions related to "involving teens in their care". CONCLUSIONS: AYA Programs can provide age-specific spaces, empowerment events, and specific education curriculum that meet the unique needs of adolescents and young adults and may positively impact patient satisfaction.