Spinal muscular atrophy: health related quality of life and burden to parents

Main Article Content

Lucas Sinesio Santos
Vinicius Lopes Silva
https://orcid.org/0000-0002-7240-7745
Vanessa Ariane Neves
Emmily Santos Ribeiro
https://orcid.org/0000-0002-8920-5971
Maria Heloyse Martins de Lima Silva
https://orcid.org/0000-0002-1255-0590
Gabriela Lopes Gama
https://orcid.org/0000-0002-7352-6711

Abstract

Objective: To analyze the relationship between the quality of life (QoL) of children and adolescents with Spinal Muscular Atrophy (SMA) and the burden on their parents. Methods: A cross-sectional study with 64 parents (53 women) of children and adolescents with SMA was conducted through an online questionnaire. Health-related QoL of children and adolescents with SMA according to the parents was evaluated using PedsQL 4.0, and Zarit Burden Interview (ZBI) was used to assess the burden on the parents. Correlation and association tests evaluated the relationship between the QoL of individuals with SMA, the burden on parents, and the factors related to these variables. Results: Parents aged between 21 and 52 years (mean 36.9 ± 7.3 years) were evaluated, of which 62.5% had a moderate burden. PedsQL 4.0 total score ranged from 19.6 to 93.5 points, and ZBI from 8 to 57 points. A negative correlation was observed between these variables (r = -0.4; p = 0.001). Furthermore, ZBI scores were related to the education level of parents (rho = 0.3; p = 0.02), changes in emotional or psychological health caused by SMA diagnosis in parents (rho = -0.4; p = 0.004), and family income (rho = 0.3; p = 0.03). Conclusion: Health-related QoL in children and adolescents with SMA was related to the burden on their parents. This highlights the importance of therapeutic programs focused on individuals with SMA, as well as the needs of their parents.



Article Details

How to Cite
1.
Santos LS, Silva VL, Neves VA, Ribeiro ES, Silva MHM de L, Gama GL. Spinal muscular atrophy: health related quality of life and burden to parents. HSJ [Internet]. 2022 Dec. 10 [cited 2024 Nov. 2];12(4):35-41. Available from: https://portalrcs.hcitajuba.org.br/index.php/rcsfmit_zero/article/view/1340
Section
ORIGINAL ARTICLE
Author Biographies

Lucas Sinesio Santos, UNIFACISA University Center

Physiotherapist by the UNIFACISA University Center.

Vinicius Lopes Silva, UNIFACISA University Center

Physiotherapy Student at UNIFACISA University Center

Vanessa Ariane Neves, UNIFACISA University Center

Physiotherapist by the UNIFACISA University Center.

Emmily Santos Ribeiro, UNIFACISA University Center

Physiotherapist by the UNIFACISA University Center.

Maria Heloyse Martins de Lima Silva, UNIFACISA University Center

Physiotherapist by the UNIFACISA University Center.

Gabriela Lopes Gama, UNIFACISA University Center

PhD in Health Sciences from the Cruzeiro do Sul University – UNICSUL, with a sandwich period from the University of Maryland in Baltimore, Full Professor of the Physiotherapy Course of the Electrothermophototherapy Discipline and Supervisor of the Supervised Internship in Physiotherapy Practice I in the Gerontology sector.

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