Patient and Caregiver Perspectives on Blood Pressure in Children With Chronic Kidney Disease

Justin Guang-Ao Wu; Allison Tong; Nicole Evangelidis; Karine E Manera; Camilla S. Hanson; Amanda Baumgart; Noa Amir; Aditi Sinha; Allison Dart; Allison A. Eddy; Chandana Guha; Debbie S. Gipson; Detlef Bockenhauer; Hui-Kim Yap; Jaap Groothoff; Michael Zappitelli; Stephen I. Alexander; Susan L. Furth; Susan Samuel; Simon A. Carter; Amanda Walker; Joshua Kausman; David Martinez-Martin; Talia Gutman; Jonathan C. Craig


Nephrol Dial Transplant. 2022;37(7):1330-1339. 

In This Article

Abstract and Introduction


Background: More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care.

Methods: Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology—Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8–21 years) and caregivers (of children ages 0–21 years) pertaining to blood pressure.

Results: Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects).

Conclusions: For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD.


Approximately 54–70% of children with chronic kidney disease (CKD) have inadequately or uncontrolled hypertension,[1–4] which is a major risk factor for cardiovascular mortality and morbidity, cerebrovascular disease, visual deficits and neurocognitive delay.[2,5] Hypertension is associated with the progression of CKD toward kidney failure requiring kidney replacement therapy.[2,6] Intradialytic hypotension or acute hypertensive episodes may cause debilitating symptoms and anxiety in children receiving dialysis.[7–9] Moreover, in children with a kidney transplant, hypertension increases the risk of graft loss.[10]

The management of blood pressure (BP) in children with CKD is often complicated by uncertainty and anxiety around monitoring and treatment side effects. While anti-hypertensive therapy is renoprotective in children with CKD Stages 2–4,[11] there are limited data on the real-world efficacy of treatment plans or whether they improve patient-related outcome measures.[6,10,12] Anti-hypertensive medications in children can also cause hypotension, hyperkalemia or even worsening of kidney function.[13] Studies have found that adult patients with CKD felt incapacitated by intradialytic hypotensive episodes, that their concerns about BP were dismissed and were overwhelmed by polypharmacy and the responsibilities of self-management.[14,15] However, there are scarce data on the perspectives of children with CKD and their caregivers regarding BP.

The complexities in monitoring and treating BP in children with CKD highlight the need for patient-centered management.[12] Parents of children with CKD often assume the role of healthcare interpreters, advisers and technicians to monitor their child's BP and assist with prescribed therapies.[16] Children with CKD also have unique priorities that they may not express in clinical settings.[17] The aim of this study was to describe the perspectives of children with CKD and their caregivers on all aspects of BP to inform strategies that address their concerns, preferences and needs.