Parent-child agreement on health-related quality of life: the role of perceived consequences of the child’s chronic illness

Abstract

Objective

We aimed to assess the parent-child agreement on various domains of health-related quality of life (HRQoL) in a Hungarian pediatric sample. We examined the associations of demographic, illness-specific factors and the perceived consequences of the illness with the parent-child disagreement.

Design

A cross-sectional study was carried out with child-parent pairs in a heterogeneous pediatric sample (n = 259).

Outcome Measures

Child and parent versions of Kidscreen-52 and the consequences scale of the Revised Illness Perception Questionnaire (IPQ-R) were applied. We used intraclass correlation coefficients to measure agreement. We computed directional discrepancies as dyadic indexes and applied them in multinomial regression analysis to identify factors influencing agreement.

Results

Agreement between children and parents on the KIDSCREEN-52 instrument was moderate to good (ICC = 0.41 to 0.66). Significant (p < 0.005) parent-child disagreement was observed on 6 out of 10 dimensions of HRQoL: Parents rated their children’s well-being lower on Physical Well-being, Psychological Well-being, Parent Relations and Home Life, Social Support and Peers, and Financial Resources scales and rated higher on Moods and Emotions compared to child-reported HRQoL. Both parent’s and child’s higher perceived illness consequences made disagreement significantly more likely on various domains.

Conclusions

Direction of disagreement may draw attention to potentially vulnerable domains of the child’s well-being, like moods and emotions and self-perception.

Keywords:

• HRQoL
• proxy
• illness perception
• pediatric cancer
• diabetes
• JIA

Acknowledgements

The authors acknowledge Camp of Courage Foundation for granting permission to conduct this research project, and the camp staffs for their dedication and commitment to helping children cope with their illnesses. We are especially thankful for the work of Andrea Békési who as medical director and head of the research team at Camp of Courage Foundation conducted the research, led the recruitment of participants and the data collection. The authors are deeply grateful to all the children as well as their parents for their participation in this study.

Authors’ contribution

The initial idea of this study was by ST and GK. AS, DH, ST and GK conceptualized the study design and acquired data. GK and ZKP performed data analysis and interpretation. ZKP drafted the manuscript. ST, AS, DH and GK reviewed and modified the manuscript draft. All authors read and approved the final manuscript.

Availability of data and materials

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Consent for publication

Not applicable.

Declarations

Ethics approval and consent to participate: The study protocol received ethical approval from the Board of the Camp of Courage Foundation and the Program Advisory Committee. Participation in the study was entirely voluntary, anonymous for the children and their parents. Informed consent was obtained from parents.

Disclosure statement

The authors declare that they have no competing interests.

Additional information

Funding

The preparation of this article for GK was supported by the Hungarian National Research, Development and Innovation Office (Grant No. FK128614) and by the MTA-SE-NAP B Genetic Brain Imaging Migraine Research Group, Hungarian Academy of Sciences, Semmelweis University (Grant No. KTIA_NAP_13-2-2015-0001); Hungarian Brain Research Program (Grant No. 2017-1.2.1-NKP-2017-00002). ZKP received funding during the preparation of the article from Semmelweis University (Grant No. EFOP-3.6.3-VEKOP-16-2017-00009).