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. CarterAmanda Walker, Joshua Kausman, David Martinez-Martin, Talia Gutman, Jonathan C. Craig

Research output: Contribution to journalArticlepeer-review

2 Citations (Scopus)



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 informpatient-centered care


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.


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).


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.

Original languageEnglish
Number of pages10
JournalNephrology Dialysis Transplantation
Publication statusE-pub ahead of print - 2021


  • Blood pressure
  • children
  • chronic kidney disease
  • kidney replacement therapy
  • patient-centered care


Dive into the research topics of 'Patient and caregiver perspectives on blood pressure in children with chronic kidney disease'. Together they form a unique fingerprint.

Cite this