{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,22]],"date-time":"2026-06-22T22:41:49Z","timestamp":1782168109784,"version":"3.54.5"},"reference-count":28,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2015,8,24]],"date-time":"2015-08-24T00:00:00Z","timestamp":1440374400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"name":"Boston Children's Hospital Department of Patient Services Research Grant"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Develop Med Child Neuro"],"published-print":{"date-parts":[[2016,3]]},"abstract":"<jats:sec><jats:title>Aim<\/jats:title><jats:p>The aim of this study was to evaluate changes in caregivers' perceptions of health\u2010related quality of life (<jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content>) and caregiver impact in children with severe, non\u2010ambulatory cerebral palsy after orthopedic surgery to correct hip or spine deformities.<\/jats:p><\/jats:sec><jats:sec><jats:title>Method<\/jats:title><jats:p>A prospective longitudinal cohort study (<jats:italic>n<\/jats:italic>=44) design was used to measure changes before and after surgery. Caregivers completed the Caregiver Priorities and Child Health Index of Life with Disabilities (<jats:styled-content style=\"fixed-case\">CPCHILD<\/jats:styled-content>) and the Assessment of Caregiver Experience with Neuromuscular Disease (<jats:styled-content style=\"fixed-case\">ACEND<\/jats:styled-content>). Data collection was between February 2011 and February 2014. Caregivers were included if their child was 3 to 25\u00a0years old, had cerebral palsy in Gross Motor Function Classification System levels<jats:styled-content style=\"fixed-case\">IV<\/jats:styled-content>and<jats:styled-content style=\"fixed-case\">V<\/jats:styled-content>, and was scheduled for orthopedic surgery. Analysis of variance with repeated measures was used to assess changes before and at four time points after surgery.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Forty\u2010four caregivers participated. Caregivers' perceptions of their child's<jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content>demonstrated an improvement from baseline to 12\u00a0months (<jats:italic>p<\/jats:italic>&lt;0.001). Patients who had spine surgery demonstrated a steady improvement over time, whereas patients who had hip surgery had a decrease at 6\u00a0weeks followed by steady improvement. Improvements were noted in five of six of the<jats:styled-content style=\"fixed-case\">CPCHILD<\/jats:styled-content>domains, with no changes in the quality of life domain. No changes were noted in any of the<jats:styled-content style=\"fixed-case\">ACEND<\/jats:styled-content>domains.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interpretation<\/jats:title><jats:p>Caregivers report an improvement in a variety of domains of<jats:styled-content style=\"fixed-case\">HRQOL<\/jats:styled-content>1\u00a0year after orthopedic surgery.<\/jats:p><\/jats:sec>","DOI":"10.1111\/dmcn.12872","type":"journal-article","created":{"date-parts":[[2015,8,24]],"date-time":"2015-08-24T08:06:47Z","timestamp":1440403607000},"page":"298-305","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":32,"title":["Differences in health\u2010related quality of life and caregiver burden after hip and spine surgery in non\u2010ambulatory children with severe cerebral palsy"],"prefix":"10.1111","volume":"58","author":[{"given":"Rachel L","family":"Difazio","sequence":"first","affiliation":[{"name":"Department of Orthopedic Surgery Boston Children's Hospital Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith A","family":"Vessey","sequence":"additional","affiliation":[{"name":"William F. Connell School of Nursing Boston College Chestnut Hill MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Zurakowski","sequence":"additional","affiliation":[{"name":"Departments of Anesthesia and Surgery Boston Children's Hospital Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian D","family":"Snyder","sequence":"additional","affiliation":[{"name":"Department of Orthopedic Surgery Boston Children's Hospital Boston MA USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2015,8,24]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.dhjo.2008.08.001"},{"key":"e_1_2_7_3_1","first-page":"1","article-title":"Prevalence of four developmental disabilities among children aged 8\u00a0years \u2013 Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000","volume":"55","author":"Bhasin TK","year":"2006","journal-title":"MMWR Surveill Summ"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.clp.2006.03.011"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.110.6.1220"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0012162201002675"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2008.03089.x"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.1993.tb11548.x"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.1997.tb07441.x"},{"key":"e_1_2_7_10_1","doi-asserted-by":"crossref","first-page":"369","DOI":"10.1111\/j.1469-8749.1998.tb08211.x","article-title":"Life expectancy of adults with cerebral palsy","volume":"40","author":"Strauss D","year":"1998","journal-title":"Dev Med Child Neurol"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pcl.2009.05.016"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.semperi.2007.12.007"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0b013e3181c11c0c"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/13638490500523283"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0000000000000404"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.suc.2005.10.007"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2006.tb01227.x"},{"key":"e_1_2_7_18_1","first-page":"86","article-title":"The CPCHILD questionnaire is sensitive to change following scoliosis surgery in children with cerebral palsy. Paper 62","author":"Narayanan UG","year":"2011","journal-title":"Spine: Affiliated Society Meeting Abstracts"},{"key":"e_1_2_7_19_1","first-page":"55","article-title":"Sensitivity of the CPCHILD questionnaire to change following hip reconstructive surgery in children with severe cerebral palsy","volume":"54","author":"Narayanan UG","year":"2012","journal-title":"Dev Med Child Neurol"},{"key":"e_1_2_7_20_1","doi-asserted-by":"publisher","DOI":"10.1097\/BPO.0b013e31820fc522"},{"key":"e_1_2_7_21_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1468-1331.2001.00051.x"},{"key":"e_1_2_7_22_1","first-page":"3","volume-title":"Quality of Life Assessment in Clinical Trials","author":"Berzon RA","year":"1998"},{"key":"e_1_2_7_23_1","doi-asserted-by":"publisher","DOI":"10.1097\/00002820-199806000-00001"},{"key":"e_1_2_7_24_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2702.2008.02379.x"},{"key":"e_1_2_7_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1524-4733.2004.71273.x"},{"key":"e_1_2_7_26_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.114.2.e182"},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2006.00644.x"},{"key":"e_1_2_7_28_1","first-page":"682","article-title":"Psychological distress in mothers of disabled children","volume":"136","author":"Breslau N","year":"1982","journal-title":"Am J Dis Child"},{"key":"e_1_2_7_29_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.87.6.884"}],"container-title":["Developmental Medicine &amp; Child Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fdmcn.12872","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/dmcn.12872","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/dmcn.12872","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/dmcn.12872","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,30]],"date-time":"2025-05-30T03:55:43Z","timestamp":1748577343000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/dmcn.12872"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015,8,24]]},"references-count":28,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2016,3]]}},"alternative-id":["10.1111\/dmcn.12872"],"URL":"https:\/\/doi.org\/10.1111\/dmcn.12872","archive":["Portico"],"relation":{},"ISSN":["0012-1622","1469-8749"],"issn-type":[{"value":"0012-1622","type":"print"},{"value":"1469-8749","type":"electronic"}],"subject":[],"published":{"date-parts":[[2015,8,24]]},"assertion":[{"value":"2015-07-14","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2015-08-24","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}