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Pediatric Quality of Life Inventory Cerebral Palsy Module (PedsQL-CP)
Availability
Please visit this website for more information about the instrument: Pediatric Quality of Life Inventory Cerebral Palsy Module.
Classification
Supplemental – Highly Recommended: Cerebral Palsy (CP)
Short Description of Instrument
The PedsQL™ 3.0 CP Module has parallel child self-report and parent proxy-report formats. There are 35 items with 7 scales (Daily Activities, School Activities, Movement and Balance, Pain and Hurt, Fatigue, Eating Activities, and Speech and Communication). There are a variety of age range tools – the child report forms include 5–7 years, 8–12 years, and 13–18 years. The parent proxy includes 2–4 years in addition to the same age ranges for the self report forms.This module was developed specifically for children with CP.
Comments/Special Instructions
Children and adolescents with cerebral palsy aged 2–18 years. Disease specific, used in children with CP. Has both proxy and self report. Large age range: 2–18 years. Four tools exist 1) Parent Report for Toddlers (ages 2–4) 2) Child and Parent Reports for Young Children (ages 5–7) 3) Child and Parent Reports for Children (ages 8–12) and Child and Parent Reports for Teens (ages 13–18).
Scoring
The 35-item PedsQL™3.0 CP Module encompasses seven scales: (1) Daily Activities (9 items); (2) School Activities (4 items); (3) Movement and Balance (5 items); (4) Pain and Hurt (4 items); (5) Fatigue (4 items); (6) Eating Activities (5 items); and (7) Speech and Communication (4 items) (Varni, 2014). The instructions ask how much of a problem each item has been during the past 1 month. A 5-point response scale is utilized across child self-report for ages 8 to 18 years and parent proxy-report (0=never a problem; 1=almost never a problem; 2=sometimes a problem; 3=often a problem; 4=almost always a problem). To further increase the ease of use for the young child self-report (ages 5–7y), the response scale is reworded and simplified to a 3-point scale (0=not at all a problem; 2=sometimes a problem; 4=a lot of a problem).
 
Items are reverse scored and linearly transformed to a 0–100 scale (0=100, 1=75, 2=50, 3=25, 4=0), so that higher scores indicate better HRQOL. Scale Scores are computed as the sum of the items divided by the number of items answered (this accounts for missing data) (Varni, 2014).
Rationale/Justification
This tool was developed specifically for children with CP. It incorporates the PedsQL™3.0 assessment with the CP module added to it. There is good to excellent internal consistency and good construct validity (Varni et al., 2006). The tool has  been tested exclusively with children and adolesents who have CP. Good sensitivity was demonstrated by differences in scores between different distribution of motor impairment in children with CP (Varni et al., 2006). A study incorporating adolescents and parents  demonstrated that the adolescent self-report and primary caregiver proxy report versions of the CP QOL-Teen have adequate reliability and validity (Davis et al., 2013).
References
Varni JW. Scaling and Scoring of the Pediatric Quality of Life InventoryTM PedsQLTM PEDsQLTM Cerebral Palsy Module. Lyon, France: Mapi Research Trust, 2014.
 
Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126-139.
 
Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, Chambers HG. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module. Dev Med Child Neurol. 2006;48(6):442-449.
 
Davis E, Mackinnon A, Davern M, Boyd R, Bohanna I, Waters E, Graham HK, Reid S, Reddihough D. Description and psychometric properties of the CP QOL-Teen: a quality of life questionnaire for adolescents with cerebral palsy. Res Dev Disab. 2013;34(1):344-352.
 
Davis E, Shelly A, Waters E, Davern M. Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments. Dev Med Child Neurol. 2010;52(2):174-180.
 
Maher CA, Toohey M, Ferguson M. Physical activity predicts quality of life and happiness in children and adolescents with cerebral palsy. Disab Rehab. 2016;38(9):865-869.

 

Document last updated June 2019