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Open Access 01-12-2024 | Duchenne Muscular Dystrophy | Review

Quality of life assessment instruments in children and adolescents with neuromuscular diseases: a systematic scoping review

Authors: Karoliny Lisandra Teixeira Cruz, Isadora Cristina Sousa Santos, Cyntia Rogean de Jesus Alves de Baptista, Ana Claudia Mattiello-Sverzut

Published in: Health and Quality of Life Outcomes | Issue 1/2024

Abstract

Objective

(1) To identify instruments used to assess quality of life (QoL) in children and adolescents with neuromuscular diseases; (2) To identify the psychometric properties contained in these instruments.

Methods

This is a scoping review in which the electronic databases Embase, Scielo, Scopus, Pubmed and Lilacs were used as well as grey literature. The following terms were used in the search for articles published in the last 10 years: children, adolescents, neuromuscular disease, and quality of life.

Results

In total, 15 articles were included and evaluated, indicating 7 instruments used to assess QoL (PedsQL™ Inventory 3.0 Neuromuscular Module, the PedsQL™ 4.0, the PedsQL DMD Module, the PedsQL ™ MFS, the SOLE, the KIDSCREEN and the LSI-A). The number of items ranged from 17 to 45. In addition, 6 instruments showed psychometric properties, but only 2 showed good and high quality, either in internal reliability or reproducibility.

Conclusion

Our results were able to map the main QoL assessment instruments of children and adolescents with neuromuscular disease and the most cited instrument was the PedsQL™ Inventory 3.0 Neuromuscular Module. Larger studies that assess psychometric properties and that are validated for most diseases are needed.

Available only for authorised users

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Title: Quality of life assessment instruments in children and adolescents with neuromuscular diseases: a systematic scoping review
Authors: Karoliny Lisandra Teixeira Cruz
Isadora Cristina Sousa Santos
Cyntia Rogean de Jesus Alves de Baptista
Ana Claudia Mattiello-Sverzut
Publication date: 01-12-2024
Publisher: BioMed Central
Keywords: Duchenne Muscular Dystrophy
Spinal Muscular Atrophy
Published in: Health and Quality of Life Outcomes / Issue 1/2024
Electronic ISSN: 1477-7525
DOI: https://doi.org/10.1186/s12955-024-02232-3

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Quality of life assessment instruments in children and adolescents with neuromuscular diseases: a systematic scoping review

Abstract

Objective

Methods

Results

Conclusion

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Objective

Methods

Results

Conclusion

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