title: Assessment of health status in patients with cerebral palsy: what is the role of quality-of-life measures?
abstract: Measuring quality of life (QOL) in a population with a functional range as large as that of the pediatric cerebral palsy population is challenging. This study assessed the utility of two common QOL instruments in this population: the Child Health Questionnaire (CHQ) and the Pediatric Outcomes Data Collection Instrument (PODCI). The goal was to determine the efficacy of these questionnaires in detecting subtle differences in the QOL among children with cerebral palsy and to demonstrate the need for dynamic assessment when evaluating QOL within this group. There were 180 subjects between the ages of 5 and 18 years, split into three diagnostic groups-diplegic, hemiplegic, and quadriplegic. The PODCI was more sensitive to differences in the diplegic and hemiplegic groups, but quadriplegics exhibited a floor effect (50% or more scored at most 15 out of 100) in three of the five domains. The CHQ was more effective for the quadriplegic group, but the diplegic and hemiplegic diagnostic groups exhibited a ceiling effect on 2 of the 12 domains in that questionnaire. Because an instrument that uses dynamic assessment bases subsequent questions on the patient's response to the first ones, dynamic assessment would help to avoid ceiling and floor effects by asking questions more pertinent to the patient's actual condition, and it would save time that would have been wasted answering irrelevant questions about function and QOL.
authors.affiliation: International Center for Health Outcomes and Innovation Research. Mgv1@columbia.edu
authors.forename: Michael G
authors.initials: MG
authors.lastname: Vitale
authors.forename: Emily A
authors.initials: EA
authors.lastname: Roye
authors.forename: Julie C
authors.initials: JC
authors.lastname: Choe
authors.forename: Joshua E
authors.initials: JE
authors.lastname: Hyman
authors.forename: Francis Y
authors.initials: FY
authors.lastname: Lee
authors.forename: David P
authors.initials: DP
authors.lastname: Roye
mesh_terms: D000293:Adolescent; D002547:Cerebral Palsy / Q000145:classification / Q000503:physiopathology*; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D006304:Health Status; D006305:Health Status Indicators; D006429:Hemiplegia / Q000503:physiopathology; D006801:Humans; D008297:Male; D011446:Prospective Studies; D011782:Quadriplegia / Q000503:physiopathology; D011788:Quality of Life; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires / Q000592:standards*