{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T04:58:20Z","timestamp":1789448300036,"version":"build-2803163510"},"reference-count":32,"publisher":"Public Library of Science (PLoS)","issue":"1","license":[{"start":{"date-parts":[[2024,1,18]],"date-time":"2024-01-18T00:00:00Z","timestamp":1705536000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007776","name":"Deanship of Academic Research, University of Jordan","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007776","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"\nBackground and purpose<\/jats:title>\nManagement strategies for children with congenital health diseases (CHDs) should encompass more than just the medical aspect of the disease and consider how heart diseases affect their everyday activities and, subsequently, their quality of life (QoL). Global studies witnessed a greater emphasis on studying the QoL associated with CHD. However, there is still a great lag in such data in the Arab region. The purpose of this study was to evaluate QoL in children with CHD using an Arab sample from Jordan. The specific objectives were twofold: (1) to contrast the assessments of children\u2019s QoL reported by their parents with those reported by the children themselves, and (2) to assess the factors that influence the QoL of children with CHD.<\/jats:p>\n<\/jats:sec>\n\nMethods<\/jats:title>\nA total of 79 children aged 2\u201318 with a confirmed diagnosis of CHD were included in the study, along with their mothers. Of them, 38.0% were girls, 67.1% were diagnosed with non-cyanotic CHD, 58.2% had a severe CHD, 92.4% had undergone at least one operation, 81.0% had repaired defects, 13.9% underwent palliated procedures, and 24.1% were admitted to a neonatal intensive care unit after delivery. The Pediatric Quality of Life Inventory was used to assess QoL of children with CHD. Both children\u2019s and parents\u2019 reports of QoL were analyzed using paired-sample t<\/jats:italic>-tests, ANOVAs, and multiple linear regression.<\/jats:p>\n<\/jats:sec>\n\nResults<\/jats:title>\nOlder children reported significantly lower QoL scores, whereas there were no differences in parents-reported QoL scores across different children age groups. There was a divergence in perceptions of QoL between parents-reported and children-reported scores with parents reporting significantly lower scores. The children-reported QoL in this study seemed to be significantly associated with their gender, age, and the presence of learning difficulties, whereas the parent-reported QoL was only associated with the presence of learning difficulties.<\/jats:p>\n<\/jats:sec>\n\nConclusions<\/jats:title>\nResponses from both children and parents need to be considered to understand the similarities and differences between them and to provide further insight into the optimal way to help children with CHD effectively navigate the transition into adulthood. Future research studies of outcomes for survivors of children with CHD are needed to identify high-risk survivors for worse psychosocial functioning and assess prevention measures and treatment interventions to improve their QoL.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0290306","type":"journal-article","created":{"date-parts":[[2024,1,18]],"date-time":"2024-01-18T18:32:52Z","timestamp":1705602772000},"page":"e0290306","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":7,"title":["Quality of life in Arab children with congenital heart disease"],"prefix":"10.1371","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5437-4778","authenticated-orcid":true,"given":"Latefa Ali","family":"Dardas","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Wei","family":"Pan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ahmad Imad","family":"Hamdan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raghed Abdel Hay","family":"Abu Jabeh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ahmad","family":"Eid Ashakhanba","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Omar","family":"Sami Abdelhai","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mohammad","family":"Naim Abid","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hashim","family":"Ahmad Mohammad","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Iyad","family":"Al-Ammouri","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2024,1,18]]},"reference":[{"key":"pone.0290306.ref001","volume-title":"U.S. Department of Health & Human Services","author":"Centers for disease control and prevention (CDC), U.S","year":"2023"},{"issue":"3\u20134","key":"pone.0290306.ref002","doi-asserted-by":"crossref","first-page":"243","DOI":"10.2298\/SARH1404243M","article-title":"The Incidence of Congenital Heart Disease: Previous Findings and Perspectives","volume":"142","author":"V. Miranovic","year":"2014","journal-title":"Srpski Arhiv Za Celokupno Lekarstvo"},{"issue":"2","key":"pone.0290306.ref003","first-page":"175","article-title":"Incidence of congenital heart disease among neonates in a neonatal unit of a tertiary care hospital","volume":"64","author":"S Hussain","year":"2014","journal-title":"J Pakistan Med Assoc"},{"issue":"5","key":"pone.0290306.ref004","first-page":"294","article-title":"Incidence and evolution of congenital heart disease in Spain from 2003 until 2012.","volume":"89","author":"JPL Picarzo","year":"2019","journal-title":"Anales De Pediatria."},{"issue":"12","key":"pone.0290306.ref005","doi-asserted-by":"crossref","first-page":"1890","DOI":"10.1016\/S0735-1097(02)01886-7","article-title":"The incidence of congenital heart disease","volume":"39","author":"JI Hoffman","year":"2002","journal-title":"J Am Coll Cardiol"},{"issue":"16","key":"pone.0290306.ref006","doi-asserted-by":"crossref","first-page":"1956","DOI":"10.1016\/j.jacc.2016.01.062","article-title":"Emerging Research Directions in Adult Congenital Heart Disease: A Report From an NHLBI\/ACHA Working Group","volume":"67","author":"M Gurvitz","year":"2016","journal-title":"J Am Coll Cardiol"},{"issue":"22","key":"pone.0290306.ref007","doi-asserted-by":"crossref","first-page":"2264","DOI":"10.1161\/CIRCULATIONAHA.110.946343","article-title":"Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium.","volume":"122","author":"P Moons","year":"2010","journal-title":"Circulation"},{"issue":"6","key":"pone.0290306.ref008","doi-asserted-by":"crossref","first-page":"285","DOI":"10.14238\/pi57.6.2017.1026","article-title":"Quality of life in children with congenital heart disease after cardiac surgery","volume":"57","author":"S Atmadja","year":"2017","journal-title":"Paediat. 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Saudi Med J."},{"issue":"1","key":"pone.0290306.ref019","doi-asserted-by":"crossref","first-page":"183","DOI":"10.1186\/s12955-019-1249-z","article-title":"Assessment of quality of life among parents of children with congenital heart disease using WHOQOL-BREF: a cross-sectional study from Northwest Saudi Arabia","volume":"17","author":"S Khoshhal","year":"2019","journal-title":"Health Qual Life Outcomes"},{"issue":"6","key":"pone.0290306.ref020","doi-asserted-by":"crossref","first-page":"329","DOI":"10.1367\/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2","article-title":"The PedsQL\u2122* 4.0 as a pediatric population health measure: feasibility, reliability, and validity","volume":"3","author":"JW Varni","year":"2003","journal-title":"Ambulatory pediatrics"},{"issue":"2","key":"pone.0290306.ref021","doi-asserted-by":"crossref","first-page":"126","DOI":"10.1097\/00005650-199902000-00003","article-title":"The PedsQL: measurement model for the pediatric quality of life inventory.","volume":"37","author":"JW Varni","year":"1999","journal-title":"Med Care."},{"issue":"1","key":"pone.0290306.ref022","first-page":"e2","article-title":"Quality of life and its associated factors in children with congenital heart disease: A multicenter study","volume":"29","author":"S. Y. Lee","year":"2014","journal-title":"Journal of Pediatric Nursing"},{"issue":"2","key":"pone.0290306.ref023","first-page":"e050237","article-title":"Quality of life in children with congenital heart disease: A review of the literature","volume":"5","author":"I. Stankovic","year":"2016","journal-title":"Journal of Pediatric and Neonatal Individualized Medicine"},{"issue":"2","key":"pone.0290306.ref024","doi-asserted-by":"crossref","first-page":"527","DOI":"10.1016\/j.athoracsur.2021.06.022","article-title":"The Use of Public Reporting to Guide Referrals in Congenital Heart Surgery: Results of a Survey","volume":"114","author":"N Schreiter","year":"2022","journal-title":"The Annals of Thoracic Surgery"},{"key":"pone.0290306.ref025","doi-asserted-by":"crossref","first-page":"874700","DOI":"10.3389\/fcvm.2022.874700","article-title":"Exercise Capacity in Children and Adolescents With Congenital Heart Disease: A Systematic Review and Meta-Analysis.","volume":"9","author":"Y Villaseca-Rojas","year":"2022","journal-title":"Front Cardiovasc Med"},{"issue":"1","key":"pone.0290306.ref026","doi-asserted-by":"crossref","first-page":"27","DOI":"10.1186\/s43054-021-00074-y","article-title":"Psychosocial assessment and quality of life assessment in children with congenital heart in a developing country","volume":"69","author":"AA Mohsen","year":"2021","journal-title":"Egyptian Pediatric Association Gazette"},{"issue":"10","key":"pone.0290306.ref027","doi-asserted-by":"crossref","first-page":"734","DOI":"10.1111\/j.1365-2788.2005.00742.x","article-title":"Cross-cultural study of person-centred quality of life domains and indicators: a replication","volume":"49","author":"C Jenaro","year":"2005","journal-title":"Journal Of Intellectual Disability Research"},{"issue":"5","key":"pone.0290306.ref028","doi-asserted-by":"crossref","first-page":"272","DOI":"10.12968\/bjon.2021.30.5.272","article-title":"Adolescence: physical changes and neurological development","volume":"30","author":"O Best","year":"2021","journal-title":"Br J Nurs"},{"key":"pone.0290306.ref029","article-title":"Early developmental outcome in children with Hypoplastic Left Heart Syndrome and related anomalies: The Single Ventricle Reconstruction Trial","author":"J. W. Newburger","year":"2012","journal-title":"Circulation"},{"issue":"7","key":"pone.0290306.ref030","first-page":"1306","article-title":"Quality of life of Malaysian children with CHD Cardiol Young.","volume":"27","author":"LC Ong","year":"2017"},{"issue":"1","key":"pone.0290306.ref031","doi-asserted-by":"crossref","first-page":"e12204","DOI":"10.1111\/jspn.12204","article-title":"Parental perceptions of disease-severity and health-related quality of life in school-age children with congenital heart disease","volume":"23","author":"KM Ruggiero","year":"2018","journal-title":"J Spec Pediatr Nurs"},{"issue":"6","key":"pone.0290306.ref032","doi-asserted-by":"crossref","first-page":"1027","DOI":"10.1017\/S1047951115000086","article-title":"Determinants of quality of life in children and adolescents with CHD: a systematic review","volume":"25","author":"M. 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