{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,1]],"date-time":"2025-11-01T08:18:52Z","timestamp":1761985132913,"version":"build-2065373602"},"reference-count":12,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2015,3,1]],"date-time":"2015-03-01T00:00:00Z","timestamp":1425168000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2015,3,1]],"date-time":"2015-03-01T00:00:00Z","timestamp":1425168000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"DOI":"10.13039\/100000030","name":"Centers for Disease Control and Prevention","doi-asserted-by":"publisher","award":["1U01DD000776- 1"],"award-info":[{"award-number":["1U01DD000776- 1"]}],"id":[{"id":"10.13039\/100000030","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Research in Developmental Disabilities"],"published-print":{"date-parts":[[2015,3]]},"DOI":"10.1016\/j.ridd.2014.12.009","type":"journal-article","created":{"date-parts":[[2015,1,9]],"date-time":"2015-01-09T00:47:08Z","timestamp":1420764428000},"page":"288-300","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":4,"special_numbering":"C","title":["Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability"],"prefix":"10.1016","volume":"38","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8860-6095","authenticated-orcid":false,"given":"Chelsea B.","family":"Deroche","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5037-3647","authenticated-orcid":false,"given":"Margaret M.","family":"Holland","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suzanne","family":"McDermott","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie A.","family":"Royer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James W.","family":"Hardin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joshua R.","family":"Mann","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Deborah","family":"Salzberg","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Orgul","family":"Ozturk","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lijing","family":"Ouyang","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"78","reference":[{"year":"2011","series-title":"Spina bifida","author":"Centers for Disease Control and Prevention (CDC)","key":"10.1016\/j.ridd.2014.12.009_bib0005"},{"year":"2012","series-title":"Fragile X syndrome (FXS)","author":"Centers for Disease Control and Prevention (CDC)","key":"10.1016\/j.ridd.2014.12.009_bib0010"},{"year":"2012","series-title":"Muscular dystrophy","author":"Centers for Disease Control and Prevention (CDC)","key":"10.1016\/j.ridd.2014.12.009_bib0015"},{"key":"10.1016\/j.ridd.2014.12.009_bib0020","doi-asserted-by":"crossref","first-page":"533","DOI":"10.1097\/PHM.0b013e3181aa41d4","article-title":"Mobility, assistive technology use, and social integration among adults with spina bifida","volume":"88","author":"Dicianno","year":"2009","journal-title":"American Journal of Physical Medicine & Rehabilitation"},{"key":"10.1016\/j.ridd.2014.12.009_bib0025","doi-asserted-by":"crossref","first-page":"286","DOI":"10.1097\/00002060-199905000-00022","article-title":"Measuring quality of life: Methodological issues","volume":"78","author":"Dijkers","year":"1999","journal-title":"American Journal of Physical Medicine & Rehabilitation"},{"issue":"6","key":"10.1016\/j.ridd.2014.12.009_bib0030","doi-asserted-by":"crossref","first-page":"666","DOI":"10.1038\/ejhg.2008.61","article-title":"Fragile X syndrome","volume":"16","author":"Garber","year":"2008","journal-title":"European Journal of Human Genetics"},{"key":"10.1016\/j.ridd.2014.12.009_bib0035","doi-asserted-by":"crossref","first-page":"1232","DOI":"10.1001\/jama.1997.03540390062037","article-title":"How to use articles about health-related quality of life","volume":"277","author":"Guyatt","year":"1997","journal-title":"The Journal of the American Medical Association"},{"issue":"1","key":"10.1016\/j.ridd.2014.12.009_bib0040","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1352\/1944-7558-116.1.16","article-title":"Exploring the adult life of men and women with fragile X syndrome: Results from a national survey","volume":"116","author":"Hartley","year":"2011","journal-title":"American Journal of Intellectual Developmental Disability"},{"issue":"6","key":"10.1016\/j.ridd.2014.12.009_bib0045","first-page":"646","article-title":"A Preliminary study of the development, validity, and reliability of a caregiver questionnaire for the health-related quality of life in children with cerebral palsy","volume":"33","author":"Liu","year":"2010","journal-title":"Chang Gung Medical Journal"},{"key":"10.1016\/j.ridd.2014.12.009_bib0050","series-title":"Quality of life and pharmacoeconomics in clinical trials","article-title":"Measuring health related quality of life in pediatric populations: Conceptual issues","author":"Rosenbaum","year":"1996"},{"key":"10.1016\/j.ridd.2014.12.009_bib0055","doi-asserted-by":"crossref","first-page":"732","DOI":"10.1007\/s11606-014-2925-7","article-title":"Use of state administrative data sources to study adolescents and young adults with rare conditions","volume":"3","author":"Royer","year":"2014","journal-title":"Journal of General Internal Medicine"},{"issue":"3","key":"10.1016\/j.ridd.2014.12.009_bib0060","doi-asserted-by":"crossref","first-page":"697","DOI":"10.1016\/S0889-857X(05)70353-7","article-title":"Success on the road to adulthood: Issues and hurdles for adolescents with disabilities","volume":"23","author":"White","year":"1997","journal-title":"Rheumatic Disease Clinics of North America"}],"container-title":["Research in Developmental Disabilities"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0891422214005149?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0891422214005149?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T00:05:56Z","timestamp":1760141156000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0891422214005149"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,3]]},"references-count":12,"alternative-id":["S0891422214005149"],"URL":"https:\/\/doi.org\/10.1016\/j.ridd.2014.12.009","relation":{},"ISSN":["0891-4222"],"issn-type":[{"type":"print","value":"0891-4222"}],"subject":[],"published":{"date-parts":[[2015,3]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability","name":"articletitle","label":"Article Title"},{"value":"Research in Developmental Disabilities","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.ridd.2014.12.009","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"Copyright \u00a9 2014 Elsevier Ltd. Published by Elsevier Ltd. All rights reserved.","name":"copyright","label":"Copyright"}]}}