%0 Journal Article
%T No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis.
%A Thoby E
%A Veras J
%A Nallapati S
%A Jimenez ME
%A Bhise V
%J Child Care Health Dev
%V 50
%N 4
%D 2024 Jul
%M 38984424
%F 2.943
%R 10.1111/cch.13304
%X <B>OBJECTIVE: </B>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.<BR><B>BACKGROUND: </B>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.<BR><B>RESULTS: </B>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.<BR><B>CONCLUSIONS: </B>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.