{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,3]],"date-time":"2026-05-03T10:35:03Z","timestamp":1777804503939,"version":"3.51.4"},"reference-count":44,"publisher":"SAGE Publications","issue":"14","license":[{"start":{"date-parts":[[2019,8,6]],"date-time":"2019-08-06T00:00:00Z","timestamp":1565049600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/501100008038","name":"NeRAB","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100008038","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["J Child Neurol"],"published-print":{"date-parts":[[2019,12]]},"abstract":"<jats:p>This cross-sectional study assessed health-related quality of life (HRQOL) in ambulant and nonambulant patients with Duchenne muscular dystrophy, and explored the association between health-related quality of life and clinically assessed motor function. The Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale and PedsQL Neuromuscular module were completed by 34 parent-child dyads. Association between PedsQL scores and overall motor abilities and the transfers and standing posture domain measured by the Motor Function Measure were examined. Child self-reported and parent proxy-reported mean PedsQL scores for children with Duchenne muscular dystrophy were lower than those for healthy children for the physical and psychosocial health-related quality of life. Fifty-six percent of patients reported clinically impaired psychosocial health-related quality of life scores. Several aspects of the generic and disease-specific health-related quality of life in patients with Duchenne muscular dystrophy were positively associated to overall motor function and transfers and standing posture domain. Associations remained stable when adjusted for age and corticosteroid use. The Motor Function Measure is clinically meaningful in the context of a patient\u2019s day-to-day life.<\/jats:p>","DOI":"10.1177\/0883073819865681","type":"journal-article","created":{"date-parts":[[2019,8,6]],"date-time":"2019-08-06T08:32:31Z","timestamp":1565080351000},"page":"873-885","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":9,"title":["Association Between Health-Related Quality of Life and Motor Function in Ambulant and Nonambulant Duchenne Muscular Dystrophy Patients"],"prefix":"10.1177","volume":"34","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0929-2532","authenticated-orcid":false,"given":"Vanya","family":"Gocheva","sequence":"first","affiliation":[{"name":"Division of Neuropediatrics and Developmental Medicine, University Children\u2019s Hospital of Basel (UKBB), University of Basel, Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Simone","family":"Schmidt","sequence":"additional","affiliation":[{"name":"Division of Neuropediatrics and Developmental Medicine, University Children\u2019s Hospital of Basel (UKBB), University of Basel, Basel, Switzerland"},{"name":"Department of Neurology, General Hospital Hietzing with Neurological Center Rosenh\u00fcgel, Vienna, Austria"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anna-Lena","family":"Orsini","sequence":"additional","affiliation":[{"name":"Division of Neurology, University Hospital Basel, University of Basel, Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Patricia","family":"Hafner","sequence":"additional","affiliation":[{"name":"Division of Neuropediatrics and Developmental Medicine, University Children\u2019s Hospital of Basel (UKBB), University of Basel, Basel, Switzerland"},{"name":"Division of Neurology, Medical University Clinic, Kantonsspital Baselland, Bruderholz, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sabine","family":"Schaedelin","sequence":"additional","affiliation":[{"name":"Department of Clinical Research, Clinical Trial Unit, University Hospital Basel, Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicole","family":"Rueedi","sequence":"additional","affiliation":[{"name":"Division of Neuropediatrics and Developmental Medicine, University Children\u2019s Hospital of Basel (UKBB), University of Basel, Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter","family":"Weber","sequence":"additional","affiliation":[{"name":"Division of Neuropediatrics and Developmental Medicine, University Children\u2019s Hospital of Basel (UKBB), University of Basel, Basel, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dirk","family":"Fischer","sequence":"additional","affiliation":[{"name":"Division of Neuropediatrics and Developmental Medicine, University Children\u2019s Hospital of Basel (UKBB), University of Basel, Basel, Switzerland"},{"name":"Division of Neurology, Medical University Clinic, Kantonsspital Baselland, Bruderholz, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2019,8,6]]},"reference":[{"key":"bibr1-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/S1474-4422(09)70271-6"},{"key":"bibr2-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1002\/ana.23528"},{"key":"bibr3-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/0092-8674(87)90579-4"},{"key":"bibr4-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1046\/j.1524-4733.2003.65309.x"},{"key":"bibr5-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1002\/mus.20686"},{"issue":"235","key":"bibr6-0883073819865681","first-page":"65132","volume":"74","author":"Food and Drug Administration","year":"2009","journal-title":"Fed Regist"},{"key":"bibr7-0883073819865681","volume-title":"Basic Documents","author":"World Health Organization","year":"1948"},{"key":"bibr8-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1111\/j.1524-4733.2007.00293.x"},{"key":"bibr9-0883073819865681","doi-asserted-by":"publisher","DOI":"10.3233\/JND-150071"},{"key":"bibr10-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1097\/CND.0b013e3181c5053b"},{"key":"bibr11-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2009.09.009"},{"key":"bibr12-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-10-43"},{"key":"bibr13-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12938"},{"key":"bibr14-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1177\/0883073810371509"},{"key":"bibr15-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2012-0858"},{"key":"bibr16-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1177\/0883073815627879"},{"key":"bibr17-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1177\/0883073810389043"},{"key":"bibr18-0883073819865681","first-page":"5","author":"Henricson E","year":"2013","journal-title":"PLoS Curr"},{"key":"bibr19-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.200503-322OC"},{"key":"bibr20-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1177\/0883073813506490"},{"key":"bibr21-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1590\/S0004-282X2011000100005"},{"key":"bibr22-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2016.01.003"},{"key":"bibr23-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0147634"},{"key":"bibr24-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1186\/s13063-016-1503-1"},{"key":"bibr25-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-5-43"},{"key":"bibr26-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2005.03.004"},{"key":"bibr27-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-199902000-00003"},{"key":"bibr28-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1367\/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2"},{"key":"bibr29-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780199231881.001.0001"},{"key":"bibr30-0883073819865681","volume-title":"Statistical Methods for Rates and Proportions","author":"Fleiss JL","year":"2013"},{"key":"bibr31-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1177\/0883073809357624"},{"key":"bibr32-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejpn.2010.07.006"},{"key":"bibr33-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/0163-8343(79)90028-8"},{"key":"bibr34-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1002\/1097-4679(199201)48:1<11::AID-JCLP2270480103>3.0.CO;2-4"},{"key":"bibr35-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1177\/000992280204100206"},{"key":"bibr36-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-0789"},{"key":"bibr37-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1111\/j.1442-200X.2010.03094.x"},{"key":"bibr38-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1111\/jpc.13407"},{"key":"bibr39-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejpn.2006.04.004"},{"key":"bibr40-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsn067"},{"key":"bibr41-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1016\/j.neubiorev.2013.03.016"},{"key":"bibr42-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1097\/00004703-200612000-00003"},{"key":"bibr43-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2018-0333L"},{"key":"bibr44-0883073819865681","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-008-9350-5"}],"container-title":["Journal of Child Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0883073819865681","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/0883073819865681","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0883073819865681","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T20:40:21Z","timestamp":1777495221000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/0883073819865681"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,8,6]]},"references-count":44,"journal-issue":{"issue":"14","published-print":{"date-parts":[[2019,12]]}},"alternative-id":["10.1177\/0883073819865681"],"URL":"https:\/\/doi.org\/10.1177\/0883073819865681","relation":{},"ISSN":["0883-0738","1708-8283"],"issn-type":[{"value":"0883-0738","type":"print"},{"value":"1708-8283","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,8,6]]}}}