Assessment of quality of life in families affected by maple syrup urine disease: a cross sectional study
There is a paucity of data on the QoL of pediatric patients with IT-IEM, including MSUD. The methodological approaches and assessment instruments utilized in existing studies are inconsistent. Identifying the factors that affect QoL would be beneficial for improving patient care, evaluating outcomes and treatments, and planning effective social and psychological interventions to enhance the patients' QoL.
Authors
- Tilahun Ali (ORCID: https://orcid.org/0000-0003-0523-8336)
- Heba Salah Abd-Elkhalek Elabd (ORCID: https://orcid.org/0000-0002-8451-6164)
- Karen Reznik Dolins
- Mohammad Ahmad Hassan (ORCID: https://orcid.org/0000-0003-0602-5658)
- Rofaida M. Magdy (ORCID: https://orcid.org/0000-0001-7939-3406)
- Hanan Nagdy
Institutions
- Ain Shams University (EG)
- Maple Syrup Urine Disease Family Support Group (US)
- Columbia University (US)
- Sohag University (EG)
Publication Details
- Journal
- Journal of Pediatric Endocrinology and Metabolism
- Published
- 2024-11-28
- DOI
- https://doi.org/10.1515/jpem-2024-0409
- Primary Topic
- Metabolism and Genetic Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00