Abstract
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 Quality of Life Questionnaire (PACQLQ) to measure these impairments. The objective of this study was to evaluate the measurement properties of the PACQLQ. A 9-week single cohort study was conducted with assessments at 1, 5 and 9 weeks. Participants in the study were primary caregivers of 52 children (age 7–17 years) with symptomatic asthma, recruited from notices in the local media and paediatric asthma clinics. Caregivers completed the PACQLQ, Impact-on-Family Scale and Global Rating of Change Questionnaires. Patients completed the Paediatric Asthma Quality of Life Questionnaire and an asthma control questionnaire. Spirornetry and β-agonist use were recorded. The PACQLQ was able to detect quality of life changes in those caregivers who changed (p<0.001) and to differentiate these from the caregivers whose quality of life remained stable (p<0.0001). The PACQLQ is reproducible in subjects who are stable (ICC=0.84), and showed acceptable levels of longitudinal and cross-sectional correlations with the child's asthma status and health-related quality of life and with other measures of caregiver health-related quality of life. The PACQLQ functions well as both an evaluative and a discriminative instrument.
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References
Townsend M, Feeny DH, Guyatt GH, Furlong WJ, Seip AE, Dolovich J. Evaluation of the burden of illness for pediatric asthmatic patients and their parents. Annals Allergy 1991; 67: 403–408.
Kirshner B, Guyatt GH. A methodological framework for assessing health indices. J Chron Dis 1985; 38: 27–36.
Juniper EF, Guyatt GH, Jaeschke R. How to develop and validate a new quality of life instrument. In: Spilker B, ed. Quality of Life and Pharmacoeconomics in Clinical Trials. Second Edition. New York: Raven Press Ltd, 1995: 49–56.
Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in children with asthma. Qual Life Res 1996; 5: 35–46.
Stein REK, Riessman CK. The development of an impacton-family scale: Preliminary findings. Med Care 1980; 18: 465–472.
Juniper EF, Kline PA, Vanzeileghem MA, Ramsdale EH, O'Byrne PM, Hargreave FE. Long-term effect of inhaled corticosteroid (budesonide) on airway hyperresponsiveness and clinical asthma severity in nonsteroid-dependent asthmatics. Am Rev Respir Dis 1990; 142: 832–836.
Guyatt GH, Townsend M, Keller JL, Singer J. Should study subjects see their previous responses? Data from a randomised control trial. J Clin Epidemiol 1989; 42: 913–920.
Juniper EF, Guyatt GH, Willan A, Griffith LE. Determining a minimal important change in a disease-specific quality of life instrument. J Clin Epidemiol 1994; 47: 81–87.
Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life: Basic Science Review. Annals Int Med 1993; 70: 225–230.
Guyatt GH, Walter S, Norman G. Measuring change over time: assessing the usefulness of evaluative instruments. J Chron Dis 1987; 40: 171–178.
Guyatt GH, Kirshner B, Jaeschke R. Measuring health status: What are the necessary measurement properties. J Clin Epidemiol 1992; 45: 1341–1345.
Malo JL, L'Archeveque J, Trudeau C, d'Aquino C, Cartier A. Should we monitor peak expiratory flow rates or record symptoms with a simple diary in the management of asthma? J Allergy Clin Immunol 1993; 91: 702–709.
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Juniper, E.F., Guyatt, G.H., Feeny, D.H. et al. Measuring quality of life in the parents of children with asthma. Qual Life Res 5, 27–34 (1996). https://doi.org/10.1007/BF00435966
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DOI: https://doi.org/10.1007/BF00435966