A DYAD APPROACH TO QUALITY OF LIFE MEASUREMENT IN CHILDREN WITH ASTHMA
Author(s)
Mirabelli C, Cousins M, Boydell K, Ungar WJThe Hospital for Sick Children, Toronto, ON, Canada
OBJECTIVES: The assessment of health-related quality of life (HRQOL) is an essential component of evaluations of health status, physical functioning, response to treatment and disease progression. The measurement of HRQOL in children with asthma often relies on parents as proxy respondents. Yet, several studies have shown poor to moderate correlations between parent and child responses, questioning the validity of the parent proxy response. This pilot study tests a dyad approach, where parent and child are interviewed together. It was hypothesized that the dyad interview, by bringing parent and child perspectives together, would create a more detailed and accurate picture of HRQOL in children with asthma. METHODS: Children clinically diagnosed with asthma aged 8 to 15 and their primary caregivers were recruited from the Hospital for Sick Children Asthma Clinic. Sixteen parent and child dyads consented and were administered the Health Utilities Index Mark II & III (HUI II/III), the Pediatric Asthma Quality of Life Questionnaire (PAQLQ), and the Pediatric Quality of Life Inventory (PedsQL). A qualitative approach was used wherein parents and children were encouraged to discuss each question together. Interviews were audiotaped and transcripts were analyzed thematically. RESULTS: Consistent with Grounded Theory methodology, observations were indexed according to a priori and a posteriori categories and subcategories. Theoretical saturation was achieved. The data showed that parents were a valuable resource in overcoming problems associated with inaccurate recall, respondent bias, frustration, psychic discomfort, anxiety and comprehension. CONCLUSIONS: A dyad approach provided children with access to their parent as an important information resource, as an enabler and as an extension of the child's cognitive skills. Pilot data suggested that the dyad is more likely to capture multi-factorial aspects of pediatric HRQOL than independent assessments of parent or child.
Conference/Value in Health Info
2005-05, ISPOR 2005, Washington, DC, USA
Value in Health, Vol. 8, No. 3 (May/June 2005)
Code
PAS8
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Pediatrics, Respiratory-Related Disorders