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Paediatric Multiple Sclerosis: A Scoping Review of Patients' and Parents' Perspectives

Autores

Luca, Maria , ORTEGA CASTRO, NEREA, Patti, Francesco

Publicación externa

No

Medio

Children-Basel

Alcance

Article

Naturaleza

Científica

Cuartil JCR

Cuartil SJR

Impacto JCR

2.4

Impacto SJR

0.504

Fecha de publicacion

15/12/2022

ISI

000758781000001

Scopus Id

2-s2.0-85121856077

Abstract

Dealing with paediatric-onset multiple sclerosis is particularly challenging for the young patients and their families, due to its unpredictable symptoms and uncertain outcome. This review aimed at synthesising the qualitative evidence regarding the perspectives about paediatric-onset multiple sclerosis, as expressed by the patients and/or their parents. A literature search was conducted on PubMed and CINAHL. The advanced multi-field search allowed to perform an abstract/title search in both databases, using keywords, combined through Boolean operators. Additional search strategies were adopted: searching the reference list of the selected papers; searching for key authors in the field. All the relevant papers were thoroughly revised using The Joanna Briggs Institute's data extraction form for qualitative evidence as a guidance. Eight papers were selected. The analysis of these papers allowed to identify some common issues pertaining paediatric-onset multiple sclerosis: (1) onset of symptoms, (2) diagnostic process, (3) reaction to the diagnosis, (4) management and acceptance of multiple sclerosis. The burden of multiple sclerosis was confirmed. However, the young patients and their parents can adjust to the disease. Both the community and the health care professionals must strive to prevent the families dealing with multiple sclerosis from experiencing solitude and rejection.

Palabras clave

paediatric multiple sclerosis; patients; parents; perspectives; review