Level of Parent–Asthmatic Child Agreement on Health-Related Quality of Life

Abstract

Background. Direct assessment of health-related quality of life (HRQοL) is necessary to understand the impact of a disease on patients' well-being and to evaluate clinical interventions. There is substantial debate in the literature on pediatric health outcomes concerning who is the most appropriate respondent when assessing children's HRQoL. Objective. To evaluate the level of agreement between child self-reports and parent proxy-reports concerning HRQoL in children with asthma. Methods. A total of 504 children with asthma and their parents who were referred to outpatient asthma clinic participated in this study. Subjects were divided into two age groups (4–7- and 8–14-year-olds). The DISABKIDS chronic generic measure—long form (DCGM-37), the DISABKIDS smiley measure (DSM), and the DISABKIDS condition-specific modules for asthma were used. The level of agreement between children and parents was evaluated using intra-class correlation coefficients and Bland–Altman analysis. Results. A satisfactory level of agreement between younger children and their parents except those with severe asthma with both methods was observed; the level of agreement in the older ones was moderate with the exception of general subscale. Asthmatic children's mean HRQoL scores were significantly lower than their parents for all subscales, except children with severe asthma in the older group, who stated lower HRQoL than their parents in most of the domains except those of Impact and Worry that were in close agreement. Fathers' assessment of HRQoL score was closer to their children's self-assessment in both groups. Families with higher family income showed a greater level of agreement. Conclusions. Our study illustrated that parents overestimate HRQoL of their children with asthma even though moderate agreement between child self-reports and parent proxy-reports on HRQoL was noticed. Fathers seem to be better proxy-reporters than mothers. Any evaluation of current approaches to measuring children's HRQoL needs to allow both parent and child to give their own perspective.

• asthma
• children
• parents
• proxy agreement
• quality of life

Acknowledgements

The DISABKIDS project was supported by the European Commission (QLG5-CT-2000-00716) within the Fifth Framework Program “QoL and Management of Living Resources.” The European Union has granted this project for the development of a modular questionnaire to assess HRQoL in children and adolescents with chronic health conditions. *****

Declaration of Interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.