Abstracts

Rationale: Patient-centered care is widely advocated as a preferred model of clinical care. Positive interaction with physicians may be an important aspect influencing family adjustment to chronic disease. To understand the extent to which patient-centered care is practiced and its impact on patient outcomes, it is essential that the measures used to assess this construct are reliable and valid. This study assesses the psychometric properties of the Patient Perceptions of Patient-Centeredness (PPPC) questionnaire as administered to parents of a sample of children newly diagnosed with epilepsy. Methods: Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a national prospective cohort study of children 4-12 years old with new-onset epilepsy. Mailed questionnaires were completed by parents at baseline (n=374), 12 months (n=304) and 24 months (n=295) later. Internal consistency reliability was assessed at each time point using Cronbach s alpha. Test-retest reliability was assessed using an intraclass correlation coefficient on a subsample of n=21 paired questionnaires. Construct validity was assessed by testing hypotheses regarding the expected relationships of perception of patient-centered care with parent concerns about their child, and with physician s gender. Results: Cronbach s alpha coefficients for the PPPC showed acceptable internal consistency reliability at all time points (?>0.70). Test-retest reliability was moderate (ICC=0.679). Spearman correlations between parental concern about emotional well-being and patient-centered care were stronger at 24 months than at baseline (r_baseline=0.108, r_{24 months}=0.191, p>0.1). Parents rated female physicians care as significantly more patient-centered than that of male physicians at 12 months and 24 months (t_{12 months}=-2.08, t_{24 months}=-2.04, p<0.05). Conclusions: The Patient Perceptions of Patient-Centeredness (PPPC) questionnaire demonstrated good internal consistency reliability and test-retest reliability when administered to parents of children newly diagnosed with epilepsy. The PPPC also demonstrated reasonable construct validity in this population. If further assessments of the psychometric properties of the PPPC questionnaire within the context of pediatric epilepsy are consistent with the current results, it may be a valuable research and clinical tool for measuring the extent to which health care provided to children with epilepsy is perceived by parents as patient-centered.