Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)

Abstract

This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was constructed from recommendations from caregivers, healthcare providers, and review of other measures. Items spanning six domains are rated on an ordinal scale. Standardized scores (0-100) are reported for each domain and in total. Primary caregivers (n = 77) of 45 males and 32 females between 5 and 18 years of age (mean age 13 y 5 mo [SD 3 y 4 mo]) with CP, categorized by the Gross Motor Function Classification System (GMFCS) level, completed the CPCHILD. Caregivers of children with severe CP (GMFCS Levels IV and V) also completed a second administration of the CPCHILD 2 weeks after the first. The mean CPCHILD score for children with severe CP was 56.2 (SD 15.7; range 24-93). The mean CPCHILD scores for children in GMFCS Levels I to V were 22.0, 38.2, 23.0, 44.5, and 59.3 respectively (p < 0.001). Reliability was tested in 41/52 caregivers who reported no change in health status between the two administrations of the CPCHILD. The intraclass correlation coefficient was 0.94 (95% confidence interval 0.90-0.97). The CPCHILD seems to be a reliable and valid measure of caregivers' perspectives on the health status, functional limitations, and well-being of these children.

A Preliminary Study to Assess Whether Spinal Fusion for Scoliosis Improves Carer-assessed Quality of Life for Children With GMFCS Level IV or V Cerebral Palsy

“…7,8,10,22 This study has shown that nonoperative treatment for children with GMFCS level IV/V CP and a significant scoliosis was associated with a small decrease in carer-assessed QoL during childhood. Spinal fusion was associated with an increase in QoL.…”

“…23 Children in our study had low baseline CPCHILD scores; worse than would be present in a representative population of children with GMFCS level IV or V CP without scoliosis. 10 Thus when compared with historical controls, 10,24 this study would suggest carer-assessed QoL for children with GMFCS level IV/V CP and scoliosis is less than for those with GMFCS level IV/V CP and no scoliosis.…”

“…10 It was developed to measure the effectiveness of interventions intended to improve or preserve these outcomes for children with severe disabilities, and particularly children with severe CP (GMFCS IV/V). The questionnaire was developed following collaboration between health care professionals, parents, and caregivers and consists of 37 items distributed over 6 sections representing the following domains: (1) activities of daily living/personal care (9 items); (2) positioning, transferring, and mobility (8 items); (3) comfort and emotions (9 items); (4) communication and social interaction (7 items); (5) health (3 items); and (6) overall QoL (1 item).…”

“…The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire was designed as a carer-assessed QoL measure for children with severe CP (GMFCS IV/V) to address this problem. 10 It is important to measure the QoL of children with significant neurodisability, as in the absence of a cure, most interventions share the common goals of preserving or improving QoL. 8,11 Systematic review data have shown minimal evidence exists to advise parents about QoL changes following spinal fusion.…”

Intrathekale Baclofentherapie

“…In Ergänzung zu den positiven Erfahrungen in der Literatur konnte mit den hier vorgestellten Ergebnissen die Wirksamkeit dieser Therapieoption auch bei Patienten mit progredienten neurodege- [4], Care and Comfort Hypertonicity Questionnaire (CCHQ) [25], Caregivers Priorities and Child Health Index of Life with Disabilities (CPCHILD) [24]). Für die vorliegende Anwendungsbeobachtung ist kritisch anzumerken, dass derartige Messinstrumente zur standardisierten Erfassung des Therapieeffektes erst im Verlauf Anwendung fanden und deshalb hier noch nicht in die Auswertung einbezogen werden konnten.…”