Adolescent and Young Adult Cancer Survivors & Patient Advisory Boards: An Exploratory Study for Multilevel Interpersonal Communication

Background and Purpose: There are approximately 89,000 new adolescent and young adult (AYA) cancer cases each year. The AYA cancer population faces distinct challenges in receiving age-appropriate healthcare and experiencing non-normative developmental stressors. In response to these challenges, some cancer centers have established AYA patient advisory boards, which are comprised of current and/or previous cancer patients who work with clinicians and staff, to improve the quality of care for AYA oncology. It is common for social workers to facilitate these types of boards. There is very scant literature that examines the effect of patient advisory boards as an intervention for patients who serve on these boards. This exploratory pilot study aimed to describe how participation in patient advisory boards influenced AYA cancer survivors’ interpersonal communication.

Methods: From August 2022-December 2022, data was collected from six participants who served on the AYA cancer patient advisory board at the University of Texas at Austin Livestrong Cancer Institute (LCI). Participants were between 18-40 years old and a survivor of >1 cancer(s). Participants completed in-depth, semi-structured interviews via Zoom. Thematic analysis was used to analyze transcribed, de-identified interviews using an inductive-deductive approach. Saturation was calculated and 87% of themes have been identified which is a rigorous threshold in qualitative pilot studies.

Findings: Three major themes emerged from the data related to how participating on the advisory board facilitated relationships at multiple interpersonal levels with, 1) other AYA cancer survivors, 2) healthcare providers, and 3) local and national communities. Participants expressed being motivated to join the advisory board so that they could find unique social support and participate in change-oriented initiatives with the goal of addressing stressors they experienced during their cancer diagnosis, treatment, and phases of survivorship. Common stressors included access to information about fertility care, unanticipated mental health challenges, and financial burden. Participants described how serving on the advisory board provided them an outlet to tell their stories, learn from others, and socially and emotionally connect with individuals who could understand how isolating it can be being an AYA with cancer. The advisory board facilitated communication with healthcare providers for participants, which increased accessibility to fertility care for some of them. Lastly, participants identified how the advisory board empowered them to advance awareness about AYA cancer-specific needs in local and national communities, such as with high school and college level students and with other cancer patient advocacy groups.

Conclusions and Implications: AYA cancer survivors described how being an AYA created unique developmental challenges in the context of cancer. Participants reported positive experiences with patient advisory boards that influenced interpersonal communication and engagement in advocacy efforts. This study provided valuable implications for demonstrating detailed relationship dynamics that could promote methods that target optimizing holistic patient health and quality of healthcare practices. Social work is uniquely positioned to lead the development and engagement of cancer patient advisory boards given the dynamic, advocacy-oriented goals board members share. Future studies should examine how cancer patient advisory boards relate to patients’ physical and mental health outcomes.