{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,3,19]],"date-time":"2025-03-19T14:40:53Z","timestamp":1742395253175,"version":"3.37.3"},"reference-count":26,"publisher":"Georg Thieme Verlag KG","issue":"03","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Neuropediatrics"],"published-print":{"date-parts":[[2024,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n          Background\u2003The Pediatric Quality of Life Inventory\u2122 (PedsQL\u2122) Neuromuscular Module (PedsQL\u2122 3.0 NM) evaluates the health-related quality of life in children who are affected by neuromuscular diseases. This study's aim is to assess the adaptation of the PedsQL\u2122 3.0 NM Turkish version (PedsQL\u2122 3.0 NM-TR) for 2- to 4-year-olds in spinal muscular atrophy (SMA).<\/jats:p><jats:p>\n          Methods\u2003The procedure of translating the PedsQL\u2122 3.0 NM into Turkish was conducted in accordance with the translation methodology outlined by the PedsQL\u2122 measurement model. The PedsQL\u2122 3.0 NM-TR was administered to 54 parents of children with SMA aged 2 to 4 years. The test\u2013retest reliability and intraclass correlation coefficient (ICC) were measured for reliability analysis. Cronbach's \u03b1 coefficient and item score correlations were calculated for internal consistency. Concurrent construct validity was evaluated by Pearson correlations between the outcomes of the PedsQL\u2122 4.0 Generic Core Scale (PedsQL\u2122 4.0 GCS) and the PedsQL\u2122 3.0 NM.<\/jats:p><jats:p>\n          Results\u2003The PedsQL\u2122 3.0 NM-TR total score shows excellent reliability. The Cronbach's \u03b1 values for the PedsQL\u2122 3.0 NM ranged between 0.871 and 0.906, while those for the PedsQL\u2122 4.0 GCS ranged between 0.843 and 0.897. Test\u2013retest ICC values for the PedsQL\u2122 3.0 NM-TR ranged between 0.812 and 0.917, and for the PedsQL\u2122 4.0 GCS ranged between 0.773 and 0.899. The relationship between the PedsQL\u2122 3.0 NM-TR and the subscores of the PedsQL\u2122 4.0 GCS demonstrated a range of correlations from excellent to fair, indicating the interplay between two scales.<\/jats:p><jats:p>\n          Conclusion\u2003This study established the PedsQL\u2122 3.0 NM-TR as reliable, valid, and feasible for use in children aged 2 to 4 years with SMA.<\/jats:p>","DOI":"10.1055\/a-2288-6383","type":"journal-article","created":{"date-parts":[[2024,3,16]],"date-time":"2024-03-16T00:00:36Z","timestamp":1710547236000},"page":"171-177","source":"Crossref","is-referenced-by-count":1,"title":["Reliability and Validity of the Turkish Translation of the PedsQL\u2122 3.0 Neuromuscular Module for 2-to 4-Year-Olds in Spinal Muscular Atrophy"],"prefix":"10.1055","volume":"55","clinical-trial-number":[{"clinical-trial-number":"nct05539456","registry":"10.18810\/clinical-trials-gov"}],"author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9120-7071","authenticated-orcid":false,"given":"Seval","family":"Kutlut\u00fcrk Y\u0131k\u0131lmaz","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy and Rehabilitation, Faculty of Hamidiye Health Sciences, University of Health Sciences, Istanbul, Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7770-9718","authenticated-orcid":false,"given":"M\u00fcberra","family":"Tanr\u0131verdi","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Bezmialem Vak\u0131f University, \u0130stanbul, Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sedat","family":"\u00d6ktem","sequence":"additional","affiliation":[{"name":"Department 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Neurol"},{"issue":"12","key":"ref10","doi-asserted-by":"crossref","first-page":"805","DOI":"10.1016\/j.nmd.2009.09.009","article-title":"The PedsQL in pediatric patients with Spinal Muscular Atrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module","volume":"19","author":"S T Iannaccone","year":"2009","journal-title":"Neuromuscul Disord"},{"volume-title":"Constitution of the World Health Organization Basic Document","year":"1948","author":"World Health Organization","key":"ref11"},{"issue":"02","key":"ref12","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":"J W Varni","year":"1999","journal-title":"Med Care"},{"issue":"01","key":"ref13","doi-asserted-by":"crossref","first-page":"37","DOI":"10.1016\/S1054-139X(03)00249-0","article-title":"Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content","volume":"34","author":"L Rajmil","year":"2004","journal-title":"J Adolesc Health"},{"key":"ref14","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1186\/1477-7525-5-43","article-title":"Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories\/severities utilizing the PedsQL 4.0 Generic Core Scales","volume":"5","author":"J W Varni","year":"2007","journal-title":"Health Qual Life Outcomes"},{"issue":"02","key":"ref15","doi-asserted-by":"crossref","first-page":"307","DOI":"10.1007\/s11136-007-9303-4","article-title":"Validity and reliability of Pediatric Quality of Life Inventory for 2- to 4-year-old and 5- to 7-year-old Turkish children","volume":"17","author":"O S Uneri","year":"2008","journal-title":"Qual Life 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