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Differences in health-related quality of life in children with chronic kidney disease as reported by children and parent proxies

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Abstract

Background

Correlation between reports of children and parent for health-related quality of life (HRQOL) is not well studied. This study aims to assess the degree of agreement between child self- and parent proxy-rated HRQOL and to identify factors associated with discordance at baseline and during follow-up in Taiwanese children with chronic kidney disease (CKD).

Methods

This study includes pediatric patients aged 5–18 years with confirmed CKD. Participants completed the generic version of the Pediatric Quality of Life Inventory (PedsQL) at baseline and every 6 months during follow-up. Child–parent agreement on HRQOL reports was assessed using intraclass correlation coefficient (ICC). Multivariate regression models were used to determine factors associated with child–parent discordance.

Results

Of the 112 child–parent dyads included in the analysis, 97 dyads with 640 patient visits were assessed in 4.5 years. Children reported higher total scores on the physical and psychosocial domains as compared to their parent proxies. ICC was low (< 0.5) for the psychosocial domain and moderate for the physical health domain at initial assessment and slightly increased for the physical health (0.62) and for school functioning (0.51) during follow-up. Development of mineral bone disorder/anemia (β, 11.75 [3.77–19.72]) and proteinuria (β, 8.48 [1.15–15.81]) in the follow-up were associated with increased discordance in school functioning, and fathers with chronic disease were associated with increased discordance in social functioning (β, 4.21 [0.68–7.74]).

Conclusions

Parent proxy consistently estimated lower PedsQL score compared to self-reports of children. Child self-rated psychosocial health domains should be evaluated whenever possible to better elucidate treatment outcome over time.

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Acknowledgements

The authors thank the families and children for their participation in the study. The authors also acknowledge Ms. Chiung-Yu, Lin, and Ms. Pei-Wen, Liao, for their assistance with data coordination and to all the staff at the outpatient setting of the Kaohsiung Chang Gung Memorial Hospital who helped us with this study.

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Authors and Affiliations

  1. Division of Pediatric Nephrology, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung, 833, Taiwan

    You-Lin Tain & Pei-Chen Lu

  2. College of Medicine, Chang Gung University, Taoyuan, 333, Taiwan

    You-Lin Tain

  3. Department of Pharmacy, Kaohsiung Chang Gung Memorial Hospital, Kaohsiung, 833, Taiwan

    Hsiao-Ching Kuo & Chien-Ning Hsu

  4. School of Pharmacy, Kaohsiung Medical University, Kaohsiung, 807, Taiwan

    Chien-Ning Hsu

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  1. You-Lin Tain
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Correspondence to Chien-Ning Hsu.

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Tain, YL., Lu, PC., Kuo, HC. et al. Differences in health-related quality of life in children with chronic kidney disease as reported by children and parent proxies. Pediatr Nephrol 38, 519–528 (2023). https://doi.org/10.1007/s00467-022-05621-2

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  • DOI: https://doi.org/10.1007/s00467-022-05621-2

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