Abstracts

Rationale: To assess the role of family-centered care for health-related quality of life of children with epilepsy, a valid and reliable measure of family-centered care in pediatric epilepsy is required. We hypothesized that a measure initially developed for parents of children with neuro-developmental disabilities, the Measure of Processes of Care (MPOC-20), might be useful and thus adapted it for parents of children with epilepsy. The objectives of this study are to evaluate the measurement properties of the MPOC-20 and determine its feasibility for assessing parents’ perceptions of the extent to which their child’s epilepsy care is family-centered.Methods: The evaluation of the measurement properties of the MPOC-20 is a sub-study of a Canada-wide study, Health-Related Quality of Life in Children with Epilepsy Study (HERQULES). An objective of HERQULES is to prospectively investigate several potential determinants of children's health related quality of life including parents' perception of epilepsy care. A mailed survey containing a slightly modified version of the MPOC-20 was completed by parents of children (4 to 12 years old) diagnosed with epilepsy by one of 52 pediatric neurologists about one month (n1=276), six months (n2=209) and 12 months (n3=125) post-diagnosis. Parents’ responses were used to analyze face and construct validity, response variability, completeness and internal consistency. The MPOC-20 was re-administered to 23 parents to assess test-retest reliability.Results: Face Validity- The vast majority of parents did not report any difficulty completing the MPOC-20, ranging from 93% (1 month) to 99% (12 months). Construct validity- MPOC-20 scores were moderately correlated with scores on the measure Patient Perception of Patient Centeredness for each subgroup (Pearson correlations 0.48 to 0.67, α= 0.05), but not with a measure of emotional stress. Internal Consistency- High Chronbach’s alphas were observed for all three subgroups (0.93 to 0.97, α= 0.05 ). Test-retest reliability- MPOC-20 was highly stable (intraclass correlation coefficients 0.78 to 0.96, α= 0.05) Response variability- Entire range of responses was used for each MPOC-20 item in all subgroups. Missing Values-amount of missing data fell within the acceptable range for each domain of the MPOC-20, ranging from 10.8 to 24.9%.Conclusions: The MPOC-20 demonstrated acceptable measurement properties when administered to parents of children with epilepsy population during the first year after diagnosis. It may be a useful measure to assess family-centered care in the management of childhood epilepsy. (Funded by Canadian Institutes of Health Research Grant MOP-117493)