No one really plans to have multiple sclerosis: Transition readiness and quality of life in paediatric multiple sclerosis.
Child Care Health Dev
; 50(4): e13304, 2024 Jul.
Article
em En
| MEDLINE
| ID: mdl-38984424
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.Palavras-chave
Texto completo:
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Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
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Pesquisa Qualitativa
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Transição para Assistência do Adulto
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Esclerose Múltipla
Idioma:
En
Ano de publicação:
2024
Tipo de documento:
Article