Pediatr Gastroenterol Hepatol Nutr.
2022 Jul;25(4):321-331. 10.5223/pghn.2022.25.4.321.
A New Perspective on the Quality of Life of Children with Glycogen Storage Diseases
- Affiliations
-
- 1National Liver Institute, Menoufia University, Menoufia Governorate, Egypt
- 2Department of Pediatrics, Faculty of Medicine, Cairo University, Cairo, Egypt
- 3Department of Pediatrics, Faculty of Medicine, AL-Fayoum University, AL-Fayoum Governorate, Egypt
- KMID: 2531168
- DOI: http://doi.org/10.5223/pghn.2022.25.4.321
Abstract
- Purpose
This study aimed to assess the quality of life (QoL) of children with glycogen storage disease (GSD) and their parents and to determine the impact of myopathies.
Methods
A prospective case-control study was conducted at the Cairo University Children’s Hospital and National Liver Institute, Menoufia University. A promising new style of questionnaire called the Stark Quality of Life Questionnaire was used to assess the quality of life.
Results
Fifty-two children diagnosed with GSD (cases) and 55 age- and sex-matched healthy children (controls) were included. A statistically significant difference was found between cases and controls regarding food intake; mental behavior parameters such as mood, energy, and social contact; and physical behavior parameters such as running and tying shoelaces. Children with myopathies had significantly lower QoL scores in most of the parameters.
Conclusion
GSDs alter children and their parents’ mental and physical abilities. Lower QoL scores were detected in children with both skeletal myopathy and cardiomyopathy, but the difference was not statistically significant when compared with the children without myopathies.
