{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T08:33:58Z","timestamp":1775032438866,"version":"3.50.1"},"reference-count":57,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T00:00:00Z","timestamp":1775001600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Public Health"],"abstract":"<jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>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).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>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\u2122 Family Impact Module.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      A total of 107 parents participated (response rate: 77%), including CF (\n                      <jats:italic>n<\/jats:italic>\n                      \u202f=\u202f40), CAH (\n                      <jats:italic>n<\/jats:italic>\n                      \u202f=\u202f26), and DMD (\n                      <jats:italic>n<\/jats:italic>\n                      \u202f=\u202f41). Fathers comprised 59.8% of respondents. 85% of fathers were employed compared to 15% in mothers. Consanguinity was reported in 77.6% of families. Diagnostic delays exceeding 1\u202fyear occurred in 46.7% of cases, particularly in DMD (82.9%). Only 10.3% of parents participated in support groups. Multi-variate analysis using a generalized linear model showed that frequent emergency department visits (&amp;gt;6 per year) and DMD diagnosis were predictors of lower QoL (\n                      <jats:italic>p<\/jats:italic>\n                      \u202f=\u202f0.003) and (\n                      <jats:italic>p<\/jats:italic>\n                      \u202f=\u202f0.004), respectively. Higher QoL was associated with maternal status (\n                      <jats:italic>p<\/jats:italic>\n                      \u202f=\u202f0.045) and higher income (\n                      <jats:italic>p<\/jats:italic>\n                      \u202f=\u202f0.014).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Overall, the study found that parents of children with rare diseases experience a suboptimal QoL score, with parents of children with DMD faced the greatest challenges, suggesting targeted interventions like enhanced newborn screening and utilizing genetic testing for expedited diagnosis may be beneficial. The study also found that frequent emergency department visits negatively impacted QoL, suggesting that enhancing healthcare access through medical education, and the integration of telemedicine and home healthcare services might alleviate the burden faced by caregivers. Moreover, financial support to these families might play a role in enhancing their quality of life due to high prevalence of sole providers, and caregiver saturation. The low participation in support groups signals a gap in caregiver support that requires further exploration.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fpubh.2026.1767604","type":"journal-article","created":{"date-parts":[[2026,4,1]],"date-time":"2026-04-01T05:41:31Z","timestamp":1775022091000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Predictors of quality of life in parents of children with rare diseases: a tertiary care center cross-sectional study in Saudi Arabia"],"prefix":"10.3389","volume":"14","author":[{"given":"Abdullah","family":"Alkhani","sequence":"first","affiliation":[{"name":"Department of Pediatrics, King Faisal Specialist Hospital & Research Centre","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mariam M.","family":"Aleissa","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, King Faisal Specialist Hospital & Research Centre","place":["Riyadh, Saudi Arabia"]},{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi Arabia"]},{"name":"Public Health Lab, Public Health Authority","place":["Riyadh, Saudi Arabia"]},{"name":"King Khaled Eye Specialist Hospital and Research Center","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Fahad","family":"Almsned","sequence":"additional","affiliation":[{"name":"Research Program, Academic, Training, and Research Administration, Eastern Health Cluster","place":["Dammam, Saudi Arabia"]},{"name":"Research Center, King Fahad Specialist Hospital-Dammam","place":["Dammam, Saudi Arabia"]},{"name":"School of Systems Biology, George Mason University","place":["Fairfax, VA, United States"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Albara","family":"Arefi","sequence":"additional","affiliation":[{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah","family":"Alsaleh","sequence":"additional","affiliation":[{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aya","family":"Mousli","sequence":"additional","affiliation":[{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Haifa","family":"Almuhanna","sequence":"additional","affiliation":[{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nasser M.","family":"Alzain","sequence":"additional","affiliation":[{"name":"Research Program, Academic, Training, and Research Administration, Eastern Health Cluster","place":["Dammam, Saudi Arabia"]},{"name":"Department of Psychiatry, College of Medicine, Imam Abdulrahman Bin Faisal University","place":["Dammam, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sami","family":"Alhaider","sequence":"additional","affiliation":[{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi Arabia"]},{"name":"General Administration of Medical Services, Ministry of Interior","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Raghad","family":"Alhuthil","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, King Faisal Specialist Hospital & Research Centre","place":["Riyadh, Saudi Arabia"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Afaf","family":"Alsagheir","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, King Faisal Specialist Hospital & Research Centre","place":["Riyadh, Saudi Arabia"]},{"name":"College of Medicine, Alfaisal University","place":["Riyadh, Saudi 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