Health-Related Quality of Life Among Adolescents and Young Adults Living with Chronic Hepatitis B: An Exploration of Family Context and Stigma

PROJECT SUMMARY Children living with chronic hepatitis B (CHB) must actively manage their disease throughout their lifetime due to the risk of progressive liver disease and hepatocellular carcinoma. Their transition to adult care complicates care management and typically occurs during adolescence and young adulthood, when health-related quality of life (HRQoL) can also diminish. The proposed mixed methods study seeks to provide insights into how family context and stigma influence care management and HRQoL among adolescents and young adults (AYAs) with CHB during their transition into adult care, with three specific aims: 1) To estimate the effects of family health risk factors on HRQoL trajectories among adolescents with CHB and to determine whether they are modified by family structure; 2) Explore care management experiences, including medical decision-making and adherence, for AYAs with CHB transitioning into adult care; and 3) Identify how key moments, such as disclosure, secrecy, and silence, from the family context form pivotal experiences that shape care management and HRQoL for AYAs with CHB. First, the quantitative phase utilizes the Hepatitis B Research Network Pediatric Cohort Study dataset, an investigation of HRQoL in youth with CHB in North America from 2010 to 2017, to examine how family context influences HRQoL trajectories among adolescents with CHB. Next, the qualitative and participatory phases involve primary data collection, leveraging the Johns Hopkins Viral Hepatitis Center. AYAs with CHB will be recruited (n=15) from the Center for in-depth interviews to explore transitioning into adult care, medical adherence, decision-making, and family communication and support. Second, all participants will be invited to participate in Collaborative Filmmaking. This participatory method involves filmmaking and discussions to identify how pivotal experiences within the family context have informed disease-related stigma and shaped care management and HRQoL. Data integration will include visual displays whereby data are visualized alongside each other. Participants will have the opportunity to incorporate their films into a composite film and share them publicly. This study is an in-depth exploration of AYA chronic disease management and HRQoL that involves public-facing work with the creation and dissemination of films. It is responsive to NICHD’s strategic plan theme to improve child and adolescent health and transitions to adulthood, including healthcare transitions for those with chronic health conditions. This research will provide foundational knowledge and actionable items for families, health providers, and public health professionals to support AYAs with CHB transitioning into adult care. The proposed research fulfills the dissertation and degree requirements for Ms. Block, PhD student at the Johns Hopkins Bloomberg School of Public Health. Training will be mentored by experts in viral hepatitis, AYA health, biostatistics, qualitative and participatory mixed methods, and translational science. With guidance from this robust mentorship team (Sponsor: Dr. Jill Owczarzak), research and training will support Ms. Block’s growth into an independent researcher dedicated to promoting the health and well-being of AYAs living with chronic disease.