Patient-Based Health Status Measurements in Pediatric Dialysis: Expanding the Assessment of Outcome

Abstract

Children with end-stage renal disease (ESRD) are now long-term survivors of dialysis and transplantation. To define and provide optimal care for these children, clinicians must assess and appreciate the impact of renal disease and its treatment on their patients' quality of life. The purpose of this pilot project was to examine the correlates of health, family cohesion, and compliance in adolescents with ESRD. Twenty adolescents with ESRD were asked to respond to a generic self-report questionnaire designed to measure self-perceived physical and psychosocial health and family life. A separate, clinician-reported questionnaire was used to assess compliance with the therapeutic regimen. Results indicated that adolescents with ESRD report their general health to be poor. In addition, patients described as less compliant reported poorer health, less family cohesion, and less participation in family activities than their more compliant peers. Although caution must be observed in interpreting our clinical findings, this initial investigation of the health and well-being of an adolescent ESRD population underscores the important relationship between compliance, perceived health status, and family cohesion.