Discrepancies between mothers and clinicians in assessing functional capabilities and performance of children with cerebral palsy

Res Dev Disabil. 2013 Nov;34(11):3746-53. doi: 10.1016/j.ridd.2013.07.036. Epub 2013 Sep 7.

Abstract

The current study is a cross-sectional study that aimed to investigate the concordance between health care professionals (HCPs) and mothers in rating capabilities and performance of children with cerebral palsy (CP), and the impact of CP gross motor severity on concordance. Seventy-three children with mild-to-severe CP (mean age 8.8 ± 2.10 years) and their mothers participated in this study. Two modes of Pediatric Evaluation Disability Inventory (PEDI) administration were used: mothers' interview by a social worker and HCPs' actual evaluation. Differences between raters were assessed by paired t-tests and intra-class correlation coefficients (ICCs). Agreement was defined as mean absolute difference of less than or equal to six points. The results indicated that in spite of excellent overall ICCs in PEDI (ICC>0.8), disagreement between raters was observed in all PEDI sub-domains: 38%, 56%, 72% and 59% disagreement in Functional Skills-Mobility, Functional Skills-Self Care, Caregiver Assistance-Mobility (CA-MO) and Caregiver Assistance-Self Care (CA-SC), respectively. In CA-SC and CA-MO disagreement mainly consisted of mothers rating their children lower in performance than HCPs. CP severity effected the agreement mostly in children with moderate CP severity. The implications of these results are that raters perceive child's activity differently, hence revealing hidden disability perceptions, with significant consequences for intended interventions.

Keywords: Cerebral palsy; Function; Proxy assessments; Proxy-therapist agreement.

MeSH terms

  • Activities of Daily Living
  • Cerebral Palsy / diagnosis
  • Cerebral Palsy / physiopathology*
  • Child
  • Cross-Sectional Studies
  • Disability Evaluation*
  • Female
  • Health Personnel*
  • Humans
  • Male
  • Mothers*
  • Observer Variation
  • Severity of Illness Index