Transition of Care to Adult Neuroimmunology

Narula, Sona

doi:10.1016/j.spen.2023.101052

Cited by 1 publication

(1 citation statement)

References 34 publications

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“…Numerous studies urge the early involvement of adolescents in the transition process, as it has been shown to improve patient outcomes post-transition (Brown et al, 2016;Crowley et al, 2011;Davidson & Doyle, 2021;Davies et al, 2011;Demaille-Wlodyka et al, 2011;Koziarska et al, 2018;Morsa, 2018;Narula, 2023;O'Mahony et al, 2019;Prestidge et al, 2012;The National Alliance to Advance Adolescent Health, n.d.;van Staa et al, 2011;Zhou et al, 2016). Specifically, our participants felt the need to acquire the skills earlier than their peers of the same age (Table 2) but also identified an initial timeframe when that was not possible.…”

Section: Assessing Current Medical Care Services and Preparedness For...mentioning

confidence: 83%

No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis

Thoby,

Veras,

Nallapati

et al. 2024

Child

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AimWe 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.BackgroundAdolescents 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.ResultsThrough 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.ConclusionsAutonomy 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.

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