{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,6]],"date-time":"2025-12-06T08:48:37Z","timestamp":1765010917029,"version":"3.46.0"},"reference-count":30,"publisher":"BMJ","issue":"9","license":[{"start":{"date-parts":[[2021,9,6]],"date-time":"2021-09-06T00:00:00Z","timestamp":1630886400000},"content-version":"unspecified","delay-in-days":5,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2021,8,17]]},"published-print":{"date-parts":[[2021,9]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Early-onset scoliosis (EOS) is a rare spinal deformity affecting children under the age of 10. Both the condition and its treatment have associated morbidity and can impact quality of life. Understanding this impact can be achieved by using appropriate patient-reported and\/or carer-reported outcome measures. The aim of the review described in this protocol is to evaluate the evidence on measurement properties relevant to health-related quality of life outcomes in the EOS population. The focus will be on outcome measures relevant to patients undergoing treatment of EOS under the age of 10.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods\/analysis<\/jats:title>\n                    <jats:p>This protocol is reported in line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol and COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology. The MEDLINE, EMBASE, EMCARE, PubMed, PsychINFO and CINAHL databases will be searched using a two-stage search strategy. The first stage will identify measures of HRQoL used in EOS through screening of titles and abstracts. The second stage will assess the measurement properties of those measures identified through screening of full-text articles. The measurement properties of interest are the \u2018reliability\u2019, \u2018validity\u2019 and \u2018responsiveness\u2019 of the instrument. Only English language articles will be considered. Two reviewers will independently review the search results against the eligibility criteria, perform data extraction and assess for risk of bias, with disputes handled by a third reviewer. Data will be quantitatively pooled where possible or reported as a narrative synthesis. The summarised results for each measurement property will be rated against the criteria for good measurement properties following the COSMIN methodology. Two reviewers will assess the body of evidence for each measurement property using modified Grading of Recommendations, Assessment, Development and Evaluation guidelines.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>No ethical approval is required for this review and the results will be submitted for publication in peer-reviewed publications.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>PROSPERO registration number<\/jats:title>\n                    <jats:p>CRD42020219721.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2021-048956","type":"journal-article","created":{"date-parts":[[2021,9,6]],"date-time":"2021-09-06T12:30:58Z","timestamp":1630931458000},"page":"e048956","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":3,"title":["Outcomes evaluating quality of life and their measurement properties in early-onset scoliosis: protocol for a systematic review"],"prefix":"10.1136","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6351-7208","authenticated-orcid":false,"given":"Charles","family":"Baird","sequence":"first","affiliation":[{"name":"Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"James","family":"Archer","sequence":"additional","affiliation":[{"name":"Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Adrian","family":"Gardner","sequence":"additional","affiliation":[{"name":"Royal Orthopaedic Hospital NHS Foundation Trust, Birmingham, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8114-7669","authenticated-orcid":false,"given":"Alison B","family":"Rushton","sequence":"additional","affiliation":[{"name":"School of Physical Therapy, Western University Faculty of Health Sciences, London, Ontario, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7599-3674","authenticated-orcid":false,"given":"Nicola R","family":"Heneghan","sequence":"additional","affiliation":[{"name":"School of Sport, Exercise and Rehabilitation Sciences, University of Birmingham, Birmingham, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2021,9,6]]},"reference":[{"key":"2025120600433552000_11.9.e048956.1","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1097\/00003086-197707000-00006","article-title":"Scoliosis prevalence: a call for a statement of terms","volume":"126","author":"Kane","year":"1977","journal-title":"Clin Orthop Relat Res"},{"key":"2025120600433552000_11.9.e048956.2","doi-asserted-by":"crossref","unstructured":"Skaggs D , Guillaume T E-H . Early onset scoliosis consensus statement, SRS growing spine committee spine deformity, 2015. Available: https:\/\/www.srs.org\/about-srs\/quality-and-safety\/position-statements\/early-onset-scoliosis-consensus-statement","DOI":"10.1016\/j.jspd.2015.01.002"},{"key":"2025120600433552000_11.9.e048956.3","doi-asserted-by":"publisher","DOI":"10.2106\/JBJS.M.00253"},{"key":"2025120600433552000_11.9.e048956.4","unstructured":"The Burden of Musculoskeletal Diseases in the United States . Spinal deformity. Available: https:\/\/www.boneandjointburden.org\/fourth-edition\/iib0\/spinal-deformity [Accessed 07 Jan 2021]."},{"key":"2025120600433552000_11.9.e048956.5","doi-asserted-by":"publisher","DOI":"10.1136\/adc.46.249.623"},{"key":"2025120600433552000_11.9.e048956.6","doi-asserted-by":"publisher","DOI":"10.1016\/j.spinee.2007.04.020"},{"key":"2025120600433552000_11.9.e048956.7","doi-asserted-by":"publisher","DOI":"10.1097\/00007632-199209000-00014"},{"key":"2025120600433552000_11.9.e048956.8","doi-asserted-by":"publisher","DOI":"10.1001\/jama.289.5.559"},{"key":"2025120600433552000_11.9.e048956.9","first-page":"21","article-title":"Natural history of early onset scoliosis","volume":"89 Suppl 1","author":"Fernandes","year":"2007","journal-title":"J Bone Joint Surg Am"},{"key":"2025120600433552000_11.9.e048956.10","doi-asserted-by":"crossref","first-page":"567","DOI":"10.1097\/BPB.0000000000000711","article-title":"Burden of care in families of patients with early onset scoliosis","volume":"29","author":"Campbell","year":"2020","journal-title":"J Pediatr Orthop B"},{"key":"2025120600433552000_11.9.e048956.11","unstructured":"Scoliosis Research Society . Early onset scoliosis. Available: https:\/\/www.srs.org\/patients-and-families\/conditions-and-treatments\/parents\/scoliosis\/early-onset-scoliosis [Accessed 07 Jan 2021]."},{"key":"2025120600433552000_11.9.e048956.12","doi-asserted-by":"crossref","first-page":"648","DOI":"10.1302\/0301-620X.54B4.648","article-title":"Progressive and resolving infantile idiopathic scoliosis","volume":"54-B","author":"Ferreira","year":"1972","journal-title":"J Bone Joint Surg Br"},{"key":"2025120600433552000_11.9.e048956.13","doi-asserted-by":"crossref","first-page":"287","DOI":"10.1302\/2058-5241.3.170051","article-title":"Treatment strategies for early-onset scoliosis","volume":"3","author":"Helenius","year":"2018","journal-title":"EFORT Open Rev"},{"key":"2025120600433552000_11.9.e048956.14","unstructured":"World Health Organisation . Whoqol: measuring quality of life. Available: https:\/\/www.who.int\/healthinfo\/survey\/whoqol-qualityoflife\/en\/ [Accessed 19 Jun 2020]."},{"key":"2025120600433552000_11.9.e048956.15","unstructured":"World Health Organization . ICF. International classification of functioning, disability and health. Geneva, 2001."},{"key":"2025120600433552000_11.9.e048956.16","doi-asserted-by":"publisher","DOI":"10.3109\/17518421003620525"},{"key":"2025120600433552000_11.9.e048956.17","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-118-8-199304150-00009"},{"key":"2025120600433552000_11.9.e048956.18","doi-asserted-by":"crossref","first-page":"195","DOI":"10.1007\/s00586-012-2352-6","article-title":"Outcome instruments to assess scoliosis surgery","volume":"22","author":"Bag\u00f3","year":"2013","journal-title":"Eur Spine J"},{"key":"2025120600433552000_11.9.e048956.19","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2017.12.020"},{"key":"2025120600433552000_11.9.e048956.20","unstructured":"Prinsen CAC , Mokkink LB , Bouter LM . 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James Lind Alliance. Available: http:\/\/www.jla.nihr.ac.uk\/priority-setting-partnerships\/scoliosis\/priority-2-from-the-scoliosis-psp.htm [Accessed 07 Jan 2021]."},{"key":"2025120600433552000_11.9.e048956.25","first-page":"148","article-title":"Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement","volume":"20","author":"Moher","year":"2016","journal-title":"Rev Esp Nutr Humana y Diet"},{"key":"2025120600433552000_11.9.e048956.26","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-009-9528-5"},{"key":"2025120600433552000_11.9.e048956.27","doi-asserted-by":"publisher","DOI":"10.1186\/s13643-016-0384-4"},{"key":"2025120600433552000_11.9.e048956.28","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.04.026"},{"key":"2025120600433552000_11.9.e048956.29","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2010.07.015"},{"key":"2025120600433552000_11.9.e048956.30","doi-asserted-by":"crossref","first-page":"324","DOI":"10.1097\/BRS.0b013e31826c6743","article-title":"Mortality and morbidity in early-onset scoliosis surgery","volume":"38","author":"Phillips","year":"2013","journal-title":"Spine"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2021-048956","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,6]],"date-time":"2025-12-06T08:43:45Z","timestamp":1765010625000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2021-048956"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,9]]},"references-count":30,"journal-issue":{"issue":"9","published-online":{"date-parts":[[2021,9,6]]},"published-print":{"date-parts":[[2021,9]]}},"alternative-id":["10.1136\/bmjopen-2021-048956"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2021-048956","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"type":"print","value":"2044-6055"},{"type":"electronic","value":"2044-6055"}],"subject":[],"published":{"date-parts":[[2021,9]]}}}