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Measuring what matters in cerebral palsy: a breadth of important domains and outcome measures
Jilda N Vargus-Adams1, Lauren K Martin
1Departments 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
Insights
Parents, youth, and professionals agree on eight key domains for evaluating childhood cerebral palsy (CP) interventions. Quality of life is paramount, though few outcome measures are widely preferred for assessing these important CP domains.
Area of Science:
- Pediatric rehabilitation
- Clinical outcomes research
- Child development
Background:
- Childhood cerebral palsy (CP) management requires comprehensive evaluation of therapeutic interventions.
- Identifying key domains and validated outcome measures is crucial for assessing treatment efficacy in pediatric CP.
- A consensus on what constitutes meaningful outcomes is needed from diverse stakeholder perspectives.
Purpose of the Study:
- To establish the most important domains for evaluating therapeutic effects in childhood cerebral palsy (CP).
- To identify the optimal outcome measures for assessing these identified domains.
- To understand stakeholder preferences for outcome measures in CP intervention studies.
Main Methods:
- A Delphi iterative survey methodology was employed.
- Participants included youth with CP (n=21), parents (n=23), and medical professionals (n=39).
- Assessments were conducted via mail or internet from a tertiary pediatric hospital setting.
Main Results:
- Eight critical domains were identified: impairment, general health, gross motor skills, self-care/fine motor skills, speech/communication, integration/participation, quality of life, and caregiver issues.
- Quality of life was identified as the most important domain.
- While numerous outcome measures exist, few, such as the Gross Motor Function Measure and Cerebral Palsy Quality of Life Questionnaire, received broad endorsement from medical professionals.
Conclusions:
- Stakeholders (parents, youth, professionals) recognize a broad spectrum of outcomes important for CP interventions, consolidatable into eight domains.
- A significant gap exists between the availability of outcome measures and broad stakeholder preference.
- Further research is needed to refine assessment strategies and guide therapeutic decision-making in childhood cerebral palsy.
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.
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