Predictors of quality of life in parents of children with rare diseases: a tertiary care center cross-sectional study in Saudi Arabia.
WHY IT MATTERS
If you're a parent of a child with CF, CAH, or DMD, this research identifies specific factors affecting your quality of life—such as employment status and family support—that healthcare providers can now address to improve your family's well-being.
Researchers in Saudi Arabia studied how different factors affect the stress and well-being of parents who have children with three rare genetic diseases: cystic fibrosis, congenital adrenal hyperplasia, and Duchenne muscular dystrophy. They surveyed 107 parents and found that things like whether parents work, family income, and cultural factors all play a role in how well parents cope with having a sick child. Understanding these factors can help doctors and support services better help families dealing with rare diseases.
Predictors of quality of life in parents of children with rare diseases: a tertiary care center cross-sectional study in Saudi Arabia. Abstract: This research aims to investigate the medical, socioeconomic, and cultural factors influencing the quality of life (QoL) in parents of children with cystic fibrosis (CF), congenital adrenal hyperplasia (CAH), and Duchenne muscular dystrophy (DMD). This cross-sectional single-centered study included parents of children diagnosed with CF, CAH, or DMD at King Faisal Specialist Hospital and Research Center, Riyadh, Saudi Arabia. The QoL was assessed using the PedsQL™ Family Impact Module. A total of 107 parents participated (response rate: 77%), including CF ( n  = 40), CAH ( n  = 26), and DMD ( n  = 41). Fathers comprised 59.8% of respondents. 85% of fathers were employed compared to 15% in mothers. Consanguinity was reported in 77.6% of famili Authors: Alkhani et al. Journal: Frontiers in public health MeSH: Humans, Quality of Life, Cross-Sectional Studies, Saudi Arabia, Female, Male, Adult, Parents, Tertiary Care Centers, Child