Research Information System
KIDNEY INTERNATIONAL REPORTS, vol.10, no.12, pp.4252-4263, 2025 (SCI-Expanded, Scopus)
Introduction: Managing mineral and bone disorder in children with chronic kidney disease (CKD) requires control of serum phosphate levels. However, hyperphosphatemia is common, particularly in adolescents, reflecting suboptimal adherence to phosphate-binder medications and a reduced phosphate diet. We explored phosphate-related knowledge and adherence barriers in children, and their caregivers, using a sequential explanatory mixed-methods study design. Methods: Children aged 8 to 18 years with CKD stages 4 and 5, on dialysis or post-transplantation, and caregivers, were recruited from 3 UK pediatric kidney centers. The Phosphate Understanding and Knowledge Assessment questionnaire was used to assess knowledge. Online focus groups explored real-world challenges to phosphate control. Results: Forty-eight children and 43 caregivers were recruited; 44 (92%) children and 33 (75%) caregivers completed the questionnaire. Median knowledge scores were 64.3% (interquartile range, 55.3-78.6) for children and 72.7% (interquartile range, 64.3-85.7) for caregivers (P = 0.04). Older children scored higher (P = 0.01, R 2 = 0.13), but knowledge did not correlate with serum phosphate. Dietary restriction was perceived as more challenging than using phosphate-binders (59% children; 71% caregivers). Forty-six participants, including 30 child-caregiver dyads, joined focus groups. The following 5 themes were identified encapsulating the experiences of families: practical advice and support are valued; personalized strategies are preferred to facilitate sense-making; the social environment of the child and family is disrupted; education and self-management skills can influence success; and the journey requires acceptance, adaptation, and perseverance. Conclusions: In pediatric CKD, poor adherence to phosphate advice originates more from social and practical barriers than knowledge deficits. Our findings can inform personalized strategies to improve adherence in real-world settings.