Measuring quality of life in the parents of children with asthma

Springer Science and Business Media LLC - Tập 5 Số 1 - Trang 27-34 - 1996
Juniper, E. F.1, Guyatt, G. H.1,2, Feeny, D. H.1,3, Ferrie, P. J.1, Griffith, L. E.1, Townsend, M.1
1Department of Clinical Epidemiology and Biostatistics, McMaster University Medical Centre, Hamilton, Canada
2Department of Medicine, McMaster University Medical Centre, Hamilton, Canada
3Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Canada

Tóm tắt

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.

Tài liệu tham khảo

citation_journal_title=Annals Allergy; citation_title=Evaluation of the burden of illness for pediatric asthmatic patients and their parents; citation_author=M Townsend, DH Feeny, GH Guyatt, WJ Furlong, AE Seip, J Dolovich; citation_volume=67; citation_publication_date=1991; citation_pages=403-408; citation_id=CR1 citation_journal_title=J Chron Dis; citation_title=A methodological framework for assessing health indices; citation_author=B Kirshner, GH Guyatt; citation_volume=38; citation_publication_date=1985; citation_pages=27-36; citation_id=CR2 citation_title=How to develop and validate a new quality of life instrument; citation_inbook_title=Quality of Life and Pharmacoeconomics in Clinical Trials; citation_publication_date=1995; citation_pages=49-56; citation_id=CR3; citation_author=EF Juniper; citation_author=GH Guyatt; citation_author=R Jaeschke; citation_publisher=Raven Press Ltd citation_journal_title=Qual Life Res; citation_title=Measuring quality of life in children with asthma; citation_author=EF Juniper, GH Guyatt, DH Feeny, PJ Ferrie, LE Griffith, M Townsend; citation_volume=5; citation_publication_date=1996; citation_pages=35-46; citation_id=CR4 citation_journal_title=Med Care; citation_title=The development of an impacton-family scale: Preliminary findings; citation_author=REK Stein, CK Riessman; citation_volume=18; citation_publication_date=1980; citation_pages=465-472; citation_id=CR5 citation_journal_title=Am Rev Respir Dis; citation_title=Long-term effect of inhaled corticosteroid (budesonide) on airway hyperresponsiveness and clinical asthma severity in nonsteroid-dependent asthmatics; citation_author=EF Juniper, PA Kline, MA Vanzeileghem, EH Ramsdale, PM O'Byrne, FE Hargreave; citation_volume=142; citation_publication_date=1990; citation_pages=832-836; citation_id=CR6 citation_journal_title=J Clin Epidemiol; citation_title=Should study subjects see their previous responses? Data from a randomised control trial; citation_author=GH Guyatt, M Townsend, JL Keller, J Singer; citation_volume=42; citation_publication_date=1989; citation_pages=913-920; citation_id=CR7 citation_journal_title=J Clin Epidemiol; citation_title=Determining a minimal important change in a disease-specific quality of life instrument; citation_author=EF Juniper, GH Guyatt, A Willan, LE Griffith; citation_volume=47; citation_publication_date=1994; citation_pages=81-87; citation_id=CR8 citation_journal_title=Annals Int Med; citation_title=Measuring health-related quality of life: Basic Science Review; citation_author=GH Guyatt, DH Feeny, DL Patrick; citation_volume=70; citation_publication_date=1993; citation_pages=225-230; citation_id=CR9 citation_journal_title=J Chron Dis; citation_title=Measuring change over time: assessing the usefulness of evaluative instruments; citation_author=GH Guyatt, S Walter, G Norman; citation_volume=40; citation_publication_date=1987; citation_pages=171-178; citation_id=CR10 citation_journal_title=J Clin Epidemiol; citation_title=Measuring health status: What are the necessary measurement properties; citation_author=GH Guyatt, B Kirshner, R Jaeschke; citation_volume=45; citation_publication_date=1992; citation_pages=1341-1345; citation_id=CR11 citation_journal_title=J Allergy Clin Immunol; citation_title=Should we monitor peak expiratory flow rates or record symptoms with a simple diary in the management of asthma?; citation_author=JL Malo, J L'Archeveque, C Trudeau, C d'Aquino, A Cartier; citation_volume=91; citation_publication_date=1993; citation_pages=702-709; citation_id=CR12