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. 2024 Dec;37(9):2561-2568.
doi: 10.1007/s40620-024-02136-x. Epub 2024 Nov 18.

Internet use and health literacy among pediatric chronic kidney disease patients and their caregivers

Eleanor Bold  1 , Kelsey L Richardson  2 , Amira Al-Uzri  2 , Sarah F Craven  2 , Kira Clark  3 , Kimberly Grzesek  4 , Seiji Koike  2 , Kurt A Freeman  2
Affiliations

Internet use and health literacy among pediatric chronic kidney disease patients and their caregivers

Eleanor Bold et al. J Nephrol. 2024 Dec.

Abstract

Background: Management of pediatric chronic kidney disease (CKD) is complex for affected youth and their families. Treatment requires a high level of family engagement to successfully manage medical appointments, inpatient hospital stays, and daily medication regimens. Health literacy has been identified as a possible contributor to health inequities and unsuccessful chronic disease management. This study sought to explore the perceived health literacy, health-related internet use, and provider trust of children with CKD and their caregivers compared to those without chronic health conditions to inform clinical care.

Methods: Caregivers and children completed self-report surveys during routine specialty nephrology and general pediatrics clinic visits. In total, 85 caregivers and 46 youth participated. Statistical analyses included exploration of distributional properties, population differences, and group differences based on self-reported perceived health literacy.

Results: Caregiver demographics did not significantly vary across samples. Patient demographics varied significantly across samples with regard to ethnicity. Internet use to find health information was low across samples, and caregivers of children without chronic health conditions endorsed significantly higher perceived health literacy compared to caregivers of children with CKD.

Conclusions: Implications for practice include consideration of health literacy when treating children with CKD and patient preparedness for transition to adult care.

Keywords: Chronic disease management; Chronic kidney disease; Health literacy; Pediatrics.

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Conflict of interest statement

Declarations. Conflict of interest: The authors did not receive financial support from any organization for the submitted work. The authors have no competing interests to declare that are relevant to the content of this article. Ethical approval: This study was performed in line with the principles of the Declaration of Helsinki. The questionnaire and methodology for this study were approved by the Human Research Ethics committee, Institutional Review Board (IRB), of the Oregon Health and Science University, STUDY00017366. Consent to participate: Informed consent was obtained from all legal guardians, and verbal assent was obtained from children ages 7 and above, regardless of whether the children completed a survey.

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