Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study.

ABSTRACT:

Background

Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China.

Methods

We recruited 101 children aged 0-17 years with SMA and their caregivers from a children's hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child's QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child's caregivers. The caregiver's QoL was measured by the Pediatric Quality of Life Inventory Family

SUBMITTER: Yao M 

PROVIDER: S-EPMC7789582 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature