Utilizing Discrepancy Theory to Quantitate Quality of Life in Chronically Ill Children
BACKGROUND: Quality of Life (QoL) is a ubiquitous yet poorly defined concept in clinical medicine. Many widely used instruments to measure QoL lack a theoretical basis and therefore may not provide accurate assessment. Multiple discrepancy theory advocates that net satisfaction is determined by evaluating the difference or gap between current life circumstances and a standard of comparison. A QoL instrument based on discrepancy theory has been developed by our research group to evaluate children with chronic diseases. OBJECTIVE: To evaluate the parent-child agreement for discrepancy theory items on the GAP QoL Questionnaire for children with chronic illness. DESIGN/METHODS: Children and parents were recruited for this pilot study when attending regularly scheduled appointments in a variety of outpatient clinics at The Hospital for Sick Children (SickKids). Trained interviewers administered the GAP Questionnaire to parents- and to their children if older than age 10. Children and parents answered the questionnaire blind to each other's answers. RESULTS: 77 participants (28 children, 49 parents: 24 parent/child pairs) were enrolled. The most important items for determining QoL generated by the GAP Questionnaire differed for children and parents (See Table). The overall weighted Kappa value for parent-child agreement on the GAP Questionnaire was 0.349 indicating moderate agreement. Items with the highest agreement were having pets (0.6962), getting along with brothers/sisters (0.5886), and the place religion has in your life (0.549).