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Self-versus Proxy-Reported Pain in Children with Cerebral Palsy: A Population-Based Registry Study of 3783 Children
Gunnar Hägglund1, Amanda Burman-Rimstedt1,2, Tomasz Czuba3
1Skåne University Hospital, Lund University, Lund, Sweden.
Insights
Pain reporting in children with cerebral palsy (CP) is similar whether self-reported or proxy-reported by parents, after adjusting for key factors. This suggests equal pain prevalence regardless of reporting source in this population.
Area of Science:
- Pediatric Neurology
- Rehabilitation Medicine
- Pain Management
Background:
- Cerebral palsy (CP) affects motor function in children, often accompanied by pain.
- Accurate pain assessment in children with CP is crucial for effective management.
- Discrepancies in pain reporting between self- and proxy-reports can impact clinical decisions.
Purpose of the Study:
- To compare the prevalence of pain in children and adolescents with CP based on self-reporting versus proxy-reporting.
- To identify factors influencing differences in pain prevalence between self- and proxy-reports.
- To inform best practices for pain assessment in pediatric CP populations.
Main Methods:
- Cross-sectional registry study of 3783 children (1-18 years) with CP in Sweden.
- Logistic regression analysis to compare self-reported versus proxy-reported pain.
- Adjustments for age, sex, Gross Motor Function Classification System (GMFCS), and Communication Function Classification System (CFCS) levels.
Main Results:
- Pain was reported by 44% of self-reporters and 41% of proxy-reporters (P = .04).
- After adjusting for covariates, the proportion of reported pain was nearly equal between self- and proxy-reporting.
- Significant differences in reporting were observed at specific GMFCS and CFCS levels, but not consistently across all levels.
Conclusions:
- While raw pain prevalence differed slightly, adjusted analyses suggest self- and proxy-reporting yield comparable pain prevalence in children with CP.
- The findings support the reliability of both self- and proxy-reporting for assessing pain in this population when adjusted for functional status.
- This highlights the importance of considering functional classification systems (GMFCS, CFCS) in pain assessment for children with CP.
Abstract:
Objective: To assess how the prevalence of pain in a population-based sample of children and adolescents with cerebral palsy (CP) differ based on self- or proxy reporting. Methods: This cross-sectional registry study included 3783 children (58% boys), 1 to 18 years old, enrolled in the Swedish follow-up program for CP. Logistic regression was used to regress source of reporting (self or proxy) on the presence of general pain adjusted for age, sex, Gross Motor Function Classification System (GMFCS), and Communication Function Classification System (CFCS) levels, including marginal effects between source of reporting and adjusted covariates. Results: The pain item was self-reported in 45%, proxy-reported in 51%, and information was missing in 3%. Pain was reported in 44% of those who self-reported and in 41% of those who proxy-reported (P = .04). The logistic regression showed that the average marginal effects of proxy versus self-reported pain were lower among children at GMFCS level IV (-0.14, 95% CI -0.17 to -0.03) and CFCS level I (-0.09, CI -0.16 to -0.01) and higher at CFCS level III (0.11, CI 0.00-0.22). There were no statistically significant differences in average marginal effects related to age, sex, or the other GMFCS and CFCS levels between proxy and self-reporting. Conclusions: Pain was more often reported by those who self-reported. However, after adjusting for age, sex, CFCS level, and GMFCS level, the proportion of reported pain was almost equal between self and proxy-reporting. Assuming that the self- and proxy-reported groups were not significantly different on relevant factors not controlled for the results indicate that presence of pain is equally reported by children and parents.
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