Parents' assessments of disability in their children using WHO ICF-CY joined body functions and activity codes related to everyday life

Abstract

Objective: To help parents assess disability in their own children using WHO ICF-CY code qualifier scoring and to assess the validity and reliability of the datasets obtained. Methods: Parents of 162 children with spina bifida, spinal muscular atrophy, muscular disorders, cerebral palsy, visual impairment, hearing impairment, mental disability or disability following brain tumours performed scoring for 26 body functions qualifiers (b codes) and activities and participation qualifiers (d codes). Scoring was repeated after 6 months. Psychometric and Rasch data analysis were undertaken. Results: The initial and repeated data had a Cronbach’s alpha of 0.96 and 0.97, respectively. Inter-code correlation was 0.54 (range 0.23–0.91) and 0.76 (range 0.20–0.92). The corrected code total correlations were 0.72 (range 0.49 –0.83) and 0.75 (range 0.50–0.87). When repeated, the ICF-CY code qualifier scoring showed a correlation R of 0.90. Rasch analysis of the selected ICF-CY code data demonstrated a mean measure of .00 and .00, respectively. Code qualifier infit MNSQ had a mean of 1.01 and 1.00. The mean corresponding outfit MNSQ was 1.05 and 1.01. ICF- CY code τ thresholds and category measures were continuous when assessed and reassessed by parents. The child code map showed coherence of ICF-CY codes at each level. Conclusion: Parents can assess their own children in a valid and reliable way, and the WHO ICF-CY second-level code dataset is functioning in a clinically sound way. It can be employed as a tool for identifying the severity of disabilities and for monitoring changes in those disabilities over time. The ICF-CY codes selected in this study might be one cornerstone in forming a set of ICF-CY codes for the benefit of children with disabilities, and their parents and caregivers.