Perspectives of adolescent and young adult cancer survivors: review of community-based discussion boards

Abstract

Purpose: Given the overall increase in the number of adolescent and young adult (AYA) cancer survivors, there has been a growing interest in identifying and implementing effective care for this patient population. To date, there are remaining gaps in research, partly due to challenges in reaching AYA survivors. Our study aimed to assess AYA cancer survivors’ concerns using postings from the American Cancer Society Cancer Survivors Network, an online, publicly available forum. Methods: Using qualitative methods, posts from AYA survivors and/or their family/friends in the “Young Cancer Survivors” discussion board from January 2010 to October 2020 were systematically assessed using a previously published cancer survivorship care framework. Results: We identified 158 individuals (145 AYA and 13 family or friends), aged 15 to 39 years old, who contributed to 181 posts with concerns regarding cancer survivorship. A majority of posts pertained to surveillance and management of psychosocial effects. Less than half related to concerns about the surveillance and management of physical effects and a few regarding surveillance for recurrence and new cancers. Psychological challenges, including coping and depression, as well as interpersonal topics, including community support and non-family relationships, were the most prevalent psychosocial concerns. Some issues across multiple domains were mentioned. Concerns pertaining to contextual healthcare delivery domains, such as communication, care coordination, and care experience, were less common. Conclusions: Our study found that AYA cancer survivors and their family/friends expressed concerns in several survivorship care domains. Physical and psychosocial issues were most prevalent. Implications for Cancer Survivors: Interventions tailored towards identifying and addressing the continued unmet needs of AYA cancer survivors are needed. Use of social media may provide opportunities to access this patient population for both clinical and research interventions.