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What matters in cerebral palsy: a breadth of domains of importance

JN VARGUS-ADAMS MD MSC 1, 2, 3, LK MARTIN 1

1. Division of Pediatric Rehabilitation, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA;
2. Center for Epidemiology & Biostatistics, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA;
3. Department of Physical Medicine & Rehabilitation, University of Cincinnati College of Medicine, Cincinnati, OH, USA

Background/Objectives: Cerebral palsy (CP) has wide ranging effects across the spectrum of disability. Clinicians struggle to understand which effects are most significant and the best ways to direct therapy. The objective of this study was to employ a consensus formation technique to establish the domains of concern when anticipating outcomes of therapeutic interventions for CP.

Design: Delphi technique iterative survey.

Participants and Setting: 17 youth with CP and 19 parents of children or youth with CP recruited from a tertiary care pediatric hospital, as well as 39 medical professionals with CP expertise from varying disciplines and settings.

Materials/Methods: Participants were asked to complete surveys either via online methods or via mailed questionnaires. The first survey asked `What are 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?’ and each respondent provided as many answers as they wished. The second survey listed the domains that were identified from the first survey and asked the respondents to rank them in order of importance. The third survey again addressed these domains and asked the respondents to demonstrate the relative value of each domain by distributing 100 points amongst the domains.

Results: The first survey resulted in an average of 5.6 different responses per participant. These responses were largely in the domains of body structure and function and activity/participation. When the first survey responses were aggregated into domains, eight areas were identified: impairment, general health, gross motor skills, self-care/fine motor skills, speech/communication, integration/participation, quality of life, and caregiver issues. The second survey demonstrated that all domains were viewed as important with no clear demarcation or cut-off point to allow reduction in the number of items. The third survey produced similar results. None of the initial eight domains could be eliminated with the possible exception of caregiver issues for ambulatory children with CP. Only quality of life emerged as being of greater importance than the other domains.

Conclusions/Significance: Families, youth, and medical professionals identify a wide range of arenas that they would like to see impacted by interventions for CP. These concerns can be consolidated into eight domains. Despite employing two different techniques to reduce the number of pertinent domains, all eight areas were deemed important. These findings demonstrate the breadth of impact of CP and also illuminate the wide ranging goals of therapeutic interventions for CP. Further work should address the best means to evaluate the domains of importance so as to determine optimal assessment strategies and to provide guidance for therapeutic decisions.

 
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