2024/07/01 by Estherline Thoby, Julissa Veras, Spandana Nallapati +2 · 9 citations
paper · doi:10.1111/cch.13304
published in Child: Care, Health and Development 50(4) (Wiley)
crossref issued 2024/07/01 · crossref published 2024/07/01 · crossref published-print 2024/07/01 · crossref published-online 2024/07/10 · crossref created 2024/07/10 · crossref deposited 2024/07/22 · crossref indexed 2026/08/06
Abstract Aim We sought to explore the experiences and perceptions of the quality of life of adolescents with pediatric‐onset multiple sclerosis and assess their readiness for academic, employment and/or health care‐related transitions. Background Adolescents with pediatric‐onset multiple sclerosis face unique challenges in managing a chronic illness while navigating future scholastic, social and occupational goals. We conducted a qualitative study with in‐depth, semi‐structured interviews from July 2017 to March 2019. Adolescents with pediatric‐onset multiple sclerosis were recruited from a pediatric neurology subspeciality practice until reaching data saturation. A total of 17 interviews were completed via telephone with participants ages 15 through 26. Results Through content analysis of the interviews, we identified five major themes: (1) receiving a new diagnosis; (2) adapting to life with pediatric‐onset multiple sclerosis; (3) evaluating education/career transition preparedness; (4) adjusting within family life and establishing support systems; and (5) assessing current medical services and preparedness for adult medical care. Conclusions Autonomy in health care management, adequate control of physical symptoms and sufficient family support impacted perceptions of quality of life. Implementing a dedicated transition visit, including the parent(s) of those with pediatric‐onset multiple sclerosis, early in adolescence may provide an avenue for appropriate anticipatory guidance regarding available services, independent medical management and continuity of care.