Measuring what matters in cerebral palsy: a breadth of important domains and outcome measures.
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.


METHODS
Delphi iterative survey.


METHODS
Tertiary pediatric hospital with assessments conducted via mail or Internet.


METHODS
Youth with CP (n=21), parents of children with CP (n=23), and medical professionals (n=39).


METHODS
Not applicable.


METHODS
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.
Vargus-Adams
Jilda N
JN
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
Martin
Lauren K
LK
D000293:Adolescent; D002547:Cerebral Palsy / Q000503:physiopathology / Q000534:rehabilitation*; D002648:Child; D003142:Communication; D003697:Delphi Technique; D004185:Disability Evaluation; D006282:Health Personnel; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D009048:Motor Skills; D017063:Outcome Assessment, Health Care; D010290:Parents; D011788:Quality of Life; D012648:Self Care; D013060:Speech; D011795:Surveys and Questionnaires