Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) – article summary
Zalmstra T, Elema A, Huizing K, Reinders MH, v.d. Putten A. Longitudinal validation of the Caregiver Priorities and Child Health Index of Life with Disabilities in a Dutch sample of nonambulatory children with severe disabilities. Child: Care, Health & Development. 2019;45(3):409-416. doi:10.1111/cch.12663
Purpose: The purpose of this study was to determine the validity long term of the Dutch translation of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD) in order to determine if it is an effective outcome measure. While the CPCHILD has been validated across language translations, sometimes exact translations, to maintain validity, might not always reflect cultural, community, or social differences and might vastly alter caregiver responses.
Study Population: Caregivers of 38 non-ambulatory Dutch children (ages 4 – 18 years old) categorized as an individual with severe disabilities as a result of cerebral palsy were recruited for the study.
Methods/Outcome Measures: Zalmstra et al., compared the scores of 3 outcome measures: CPCHILD Dutch translation (CPCHILD-DV), the Pediatric Quality of Life Inventory (PedsQL), and a questionnaire of the caregivers’ perceived change of quality of life of the child before and after two common interventions consisting of Botox injections in hip musculature (to reduce pain) and placement of a percutaneous endoscopic gastrostomy (to provide feeding if oral intake is not sufficient) over 3 and 6 month periods. Paired t tests were used to observe a change in the three outcomes scores. Spearman’s rank correlation coefficient was used to compare the change in scores of the CPCHILD-DV and PedsQL with the scores of the caregivers’ perceived change questionnaire and establish correlations.
Intervention: Botox injections in hip musculature and placement of a percutaneous endoscopic gastrostomy in between responses on CPCHILD-DV, PedsQL, and caregiver’s perceived change in quality of life of the child questionnaire.
Results: Zalmstra et al., found that there is good longitudinal validity for the CPCHILD-DV both at 3 and 6 month intervals. Furthermore, changes in CPCHILD-DV scores appear to correlate with other external outcome measurement score changes such as the PedsQL and the caregivers’ perceived quality of life of the child outcome.
Limitations: The limited sample size was a limitation in the study and would affect the power of the study. Also, the CPCHILD-DV was only utilized for two intervention strategies and should be validated for a variety of intervention strategies to truly establish its validity.
Strengths: A strength of the study was that it was conducted over different centers around the Netherlands showing that a region specific population did not produce any biases. Another strength was that the study was conducted over a similar length in time compared to previous studies that did establish longitudinal validity in the CPCHILD-DV with a different outcome.
Conclusion: Overall, the CPCHILD-DV does have longitudinal validity to be a valid and reliable clinical outcome measure in non-ambulatory children with severe disabilities from cerebral palsy.
3 responses to “Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) – article summary”
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Very interesting study! I appreciate that it’s looking at populations across Europe and not just dutch-focused populations. I also found it interesting that they decided to take a measurement before and after intervention vs. just having them fill out the outcome measure once and compare it to other outcome measures at that given point and time. Good find!
This article makes me curious to see if there might be other influencing factors, as well, when it comes to translation of tests. I would extend that cultural differences may play a large role in how universal an outcome measure is, too. For example, some cultures may weigh parts of this outcome differently in importance, or may even have completely different expectations for what it means to be living with a disability, and how that affects their role in their relationships and society. This could then potentially lead to more positive/negative outlooks, affecting their mental state and general happiness.
I find it interesting that this translation correlated very well with the PedsQL. This definitely added an additional layer of validity to the study and generalizability to the outcome measure. Testing this measure with a larger sample size would be interesting to see how the validity of the measure would be affected and if it would still be as generalizable. Well done!