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

UNLABELLED

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.