MEASURING QUALITY-OF-LIFE IN THE PARENTS OF CHILDREN WITH ASTHMA

Parents and primary caregivers of children with asthma are limited in normal daily activities and experience anxieties and fears due to the child's illness. We have developed the Paediatric Asthma Caregiver's Q uality of Life Questionnaire (PACQLQ) to measure these impairments. Th e objective of this study was to evaluate the measurement properties o f the PACQLQ. A 9-week single cohort study was conducted with assessme nts at 1, 5 and 9 weeks. Participants in the study were primary caregi vers of 52 children (age 7-17 years) with symptomatic asthma, recruite d from notices in the local media and paediatric asthma clinics. Careg ivers completed the PACQLQ, Impact-on-family Scale and Global Rating o f Change Questionnaires. Patients completed the Paediatric Asthma Qual ity of Life Questionnaire and an asthma control questionnaire. Spirome try and beta-agonist use were recorded. The PACQLQ was able to detect quality of life changes in those caregivers who changed (p < 0.001) an d to differentiate these from the caregivers whose quality of life rem ained stable (p < 0.0001). The PACQLQ is reproducible in subjects who are stable (ICC=0.84), and showed acceptable levels of longitudinal an d cross-sectional correlations with the child's asthma status and heal th-related quality of life and with other measures of caregiver health -related quality of life. The PACQLQ functions well as both an evaluat ive and a discriminative instrument.