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

摘要: BACKGROUND Over 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk cardiovascular and progression to failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed describe the perspectives CKD parental caregivers on pressure, inform patient-centered care. METHODS Secondary thematic analysis was conducted qualitative data from Standardized Outcomes in Nephrology-Children Adolescents initiative, encompassing 16 focus groups, an international Delphi survey, two consensus workshops. analyzed responses (aged 8-21 years) (of aged 0-21 years) pertaining pressure. RESULTS Overall, 120 patients 250 22 countries participated. identified five themes: invisibility normalization (reassured apparent normotension, absence symptoms, expected links CKD); confused ambiguity (hypertension indistinguishable disease, questioning need for prophylactic intervention, frustrated inconsistent messages, struggling technical skills measurement); enabling monitoring maintaining health (gauging wellbeing, preventing vascular complications); constraining daily living (provoking anxiety agitation, helpless powerless, limiting life activities); burden (overwhelmed quantity tablets, distress unexpected side effects). CONCLUSIONS For caregivers, important heath indicator, but uncertainty around its implications treatment hampered management. Providing educational resources track minimizing symptoms burden, improve outcomes CKD.