INNV-34. A NOVEL APPROACH TO ADDRESSING THE UNIQUE NEEDS OF ADOLESCENT AND YOUNG ADULT (AYA) BRAIN TUMOR PATIENTS: A FRAMEWORK FOR A VIRTUAL PEER-LED YOUNG ADULT SUPPORT GROUP

Adolescent and young adult (AYA) patients (age 15-39) constitute 14.3% of new brain tumor diagnoses annually. While navigating cognitive and physical challenges from their tumor, these patients are also pursuing social independence, education, careers, relationships, and family planning. These patients have unique, and often unmet, psychosocial needs compared to older patients, requiring a new approach for comprehensive care.

Three YA neuro-oncology patients from UCSF volunteered to facilitate a monthly virtual support group. Facilitators were trained in peer support mentorship and support group facilitation by a licensed psychologist. A program planning committee consisted of: a social worker, nurse practitioner, program manager, communications specialist, two neuro-oncologists, and the peer facilitators. Promotion was done through flyers, the UCSF and ABTA websites, and word-of-mouth. Feedback was collected via anonymous survey and informal discussions, and the planning committee met monthly to adapt to evolving group needs. Participants used a video chat app to stay connected between meetings.

Over one year, 73 patients registered, and 40 total participated (average 15/session). Participant age range was 19–44, and age at diagnosis was 10–43. From 19 survey responses, 84% preferred a mix of open and topic-driven discussions. Key topics desired for peer discussion included meditation/mindfulness (68%), cognitive changes (58%), symptom management (58%), relationships/sexual health (58%), exercise (58%), and anxiety (58%). By contrast, participants wanted healthcare providers to address tumor treatment (37%), cognitive challenges (37%), symptom management (32%), seizures (26%), nutrition (26%), and integrative health (21%). Qualitative feedback highlighted community and social support from similarly-aged peers facing similar challenges amongst the most valuable aspects.

AYA patients have different information and support needs from peers versus providers. Peer-led support groups effectively provide social support for AYA brain tumor patients. Successful implementation involves volunteer facilitators, training, regular planning committee meetings, and participant feedback.