Patient and caregiver perspectives on blood pressure in children with chronic kidney disease.

Background Over 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 (aged 8-21 years) and caregivers (of children aged 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, expected links with CKD); confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning need for prophylactic intervention, frustrated by inconsistent messages, struggling with technical skills in measurement); enabling monitoring and maintaining health (gauging wellbeing, preventing vascular complications); debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless, limiting life activities); and burden of medications (overwhelmed by quantity of tablets, 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.