ABSTRACT
OBJECTIVE: Many outcome measures assess function of children with cerebral palsy (CP), but establishing meaningful clinical change remains challenging. This study explored correlations between subjective status ratings in several functional domains, made by children, parents, and medical professionals. The ratings were compared with three outcome measures in preparation for longitudinal work to establish minimal clinically important change. METHOD: Children were assessed with the Gross Motor Function Measure (GMFM), Pediatric Evaluation of Disability Inventory (PEDI), and Cerebral Palsy Quality of Life Questionnaire for Children (CP-QOL). Respondents provided Likert scale and Linear Analogue Scale ratings of gross motor function, self care, social function, quality of life, and overall function. Correlations were calculated for outcome measure scores and ratings. RESULTS: 122 children with CP across all GMFCS and MACS levels, 79 male, aged 8.1 ± 2.9 years generated status ratings by 27 child reports, 122 parent reports, and 110 medical professional reports. Most ratings were moderately to highly correlated between parents and medical professionals. Outcome measure scores were frequently significantly correlated with pertinent ratings from medical professionals and parents but usually not with child ratings. CONCLUSIONS: Parents and medical professionals have similar perceptions of gross motor, self-care, quality of life, and overall status for children with CP and these perceptions correlate with standard outcome measures, but often do not agree with children's ratings. Longitudinal use of subjective status ratings from parents and professionals should contribute to establishing minimal clinically important differences for CP outcome measures.
Subject(s)
Cerebral Palsy/physiopathology , Health Personnel , Health Status , Motor Skills/physiology , Outcome Assessment, Health Care , Quality of Life , Surveys and Questionnaires , Cerebral Palsy/psychology , Cerebral Palsy/rehabilitation , Child , Child, Preschool , Disability Evaluation , Female , Follow-Up Studies , Humans , Male , ParentsABSTRACT
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.
