| Measuring what matters in cerebral palsy: a breadth of important domains and outcome measures. | |
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MedLine Citation:
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PMID: 19969173 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
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Vargus-Adams JN, Martin LK. Measuring what matters in cerebral palsy: a breadth of important domains and outcome measures. OBJECTIVE: To establish domains of importance for evaluating therapeutic effects in childhood cerebral palsy (CP) and the best means of evaluating those domains. DESIGN: Delphi iterative survey. SETTING: Tertiary pediatric hospital with assessments conducted via mail or Internet. PARTICIPANTS: Youth with CP (n=21), parents of children with CP (n=23), and medical professionals (n=39). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Identification of "the things you find most important to consider when you evaluate the effects of an intervention for yourself/your child/your patient with cerebral palsy" as domains of concern, followed by the best outcome measures to assess each of the domains, including preference rankings of those measures. RESULTS: Eight domains of importance were identified: impairment, general health, gross motor skills, self-care/fine motor skills, speech/communication, integration/participation, quality of life, and caregiver issues. All domains were viewed as important with no clear demarcation to allow reduction in number. Only quality of life emerged as being most important. Medical professionals suggested 10 to 27 different outcome measures for assessing each domain. Few of these measures, including the Gross Motor Function Measure and the Cerebral Palsy Quality of Life Questionnaire, were broadly endorsed by the medical professionals. CONCLUSIONS: Parents, youth, and medical professionals identify a wide range of arenas that they would like to see impacted by interventions for CP. These arenas can be consolidated into 8 domains. Although many outcome measures are available to evaluate these domains, few of the measures are widely preferred. Further work may determine optimal assessment strategies and provide guidance for therapeutic decisions. |
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Authors:
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Jilda N Vargus-Adams; Lauren K Martin |
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Publication Detail:
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Type: Journal Article; Research Support, N.I.H., Extramural |
Journal Detail:
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Title: Archives of physical medicine and rehabilitation Volume: 90 ISSN: 1532-821X ISO Abbreviation: Arch Phys Med Rehabil Publication Date: 2009 Dec |
Date Detail:
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Created Date: 2009-12-08 Completed Date: 2010-01-26 Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 2985158R Medline TA: Arch Phys Med Rehabil Country: United States |
Other Details:
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Languages: eng Pagination: 2089-95 Citation Subset: AIM; IM |
Affiliation:
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Departments of Pediatrics and Physical Medicine and Rehabilitation, Cincinnati Children's Hospital Medical Center, University of Cincinnati School of Medicine, Cincinnati, OH, USA. jilda.vargus-adams@cchmc.org |
Export Citation:
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| MeSH Terms | |
Descriptor/Qualifier:
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Adolescent Cerebral Palsy / physiopathology, rehabilitation* Child Communication Delphi Technique Disability Evaluation Health Personnel Health Status Humans Interpersonal Relations Motor Skills Outcome Assessment (Health Care)* Parents Quality of Life Questionnaires Self Care Speech |
| Grant Support | |
ID/Acronym/Agency:
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K23 HD049552/HD/NICHD NIH HHS |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
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