Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.

Care Experience, by Site of Care, for Adolescents and Young Adults With Cancer.

PURPOSE: Most of the 77,000 adolescents and young adults (AYAs) 15-39 years of age diagnosed with cancer annually in the United States are treated at community rather than academic centers. Little is known about their healthcare experience. METHODS: A cross-sectional, anonymous, online survey was conducted with a convenience sample of AYAs treated for cancer at US academic (n = 112) or community centers (n = 64). RESULTS: Clinical trials were offered more frequently to respondents treated at academic centers (26.8% v 7.8%; P = .005). Eighty percent of all those offered a clinical trial chose to enroll. Over three-fourths reported awareness of community-based or online AYA oncology support services; however, significantly more respondents from academic centers reported awareness of services provided by the institution itself (40.2% v 7.8%; P < .001). Significantly more respondents from academic centers reported receiving information relevant to their age group (41.1% v 15.6%; P < .001). Respondents treated at academic centers were significantly more satisfied with support, communication, and overall treatment. Odds of respondents treated at an academic center reporting that their healthcare team knew enough about AYAs were 3.12-fold higher than those treated at community centers (95% CI, 1.6 to 6.4; P = .002). Odds of overall satisfaction were significantly higher for respondents who reported that their healthcare team "knew enough about AYAs" (aOR, 9.7, 95% CI, 2.4 to 53.9; P = .003). CONCLUSION: Cancer treatment for AYAs at both academic and community centers can be optimized by improving healthcare providers' understanding of the key issues facing AYAs with cancer and by increasing AYA-specific institutional resources and support services.

Putting Adolescents and Young Adults in a Room Together: Launching an Adolescent and Young Adult Oncology Council.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.