Access to Online Patient Portals for Adolescents With Cancer: Benefits, Concerns, and Challenges

OBJECTIVE: To identify perceived benefits, concerns, and challenges to adolescents with cancer accessing online patient portals. STUDY DESIGN: Semi-structured, qualitative interviews with 48 dyads of adolescents with cancer (12-17 years) and their parents. Interviews explored parental and adolescent experiences, motivations, and concerns to accessing the portal. Three team members analyzed interview transcripts using thematic analysis. RESULTS: Most adolescents (41/48, 85%) and parents (42/48, 87.5%) believed that adolescents should have access to their electronic health information (EHI), but that access should depend on certain factors, such as the adolescent's age, maturity level, or ability to understand portal content. Although most parents reported having accessed the portal (42/48, 88%), only 12 adolescents (25%) had previously accessed the portal. We identified seven themes related to both real-life and hypothetical benefits and concerns of adolescent portal access: promoting communication between adolescents, caregivers, and clinicians; providing reassurance to adolescents; supporting adolescent engagement and responsibility; supporting adolescent knowledge and understanding; creating confusion or misunderstanding; creating worry or fear; and potential for misuse. CONCLUSION: In our qualitative study, most adolescents with cancer and their parents believed that teens should have access to their EHI but expressed a diversity of opinions on when and under what circumstances teens should have access. Both parents and teens recognized that portals had the potential to both alleviate and contribute to anxiety and worries related to cancer care and prognosis. Our study found novel areas of concern relating to the potential for portal use to negatively impact adolescent mental health.