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  • Article
    Barriers to and Facilitators of Phosphate Control in Children with CKD
    (Elsevier Science Inc, 2025) Mcalister, Louise; Shaw, Vanessa; Pugh, Pearl; Joyce, Triona; Snauwaert, Evelien; Bathgate, Fionna; Lambert, Kelly
    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.
  • Article
    Randomized Controlled Trials in Europe: A Call to Action to Protect National Healthcare Systems from the Upcoming Tsunami of Kidney Failure
    (Oxford University Press, 2026) Ortiz, Alberto; Arici, Mustafa; Goumenos, Dimitrios S.; Adamczak, Marcin; Eller, Kathrin; Ferreira, Ana Carina; Torra, Roser
    Kidney diseases are among the fastest-growing global health burdens, with chronic kidney disease projected to become the third leading cause of death by 2050. Despite this, therapeutic innovation remains limited: no European Medicines Agency-approved treatment exists for acute kidney injury, and no drugs have demonstrated survival benefits in patients on dialysis. Randomized controlled clinical trials, although pivotal for advancing care, face persistent challenges in nephrology, including patient heterogeneity, multimorbidity, high dropout rates and small populations in rare diseases. In Europe, these intrinsic obstacles are compounded by fragmented implementation of the Clinical Trials Regulation (536/2014), excessive safety reporting demands and lack of nephrology-specific guidance, discouraging academic-led initiatives and limiting pragmatic research. The Coalition for Reducing Bureaucracy in Clinical Trials, a broad alliance of medical societies and patient advocates, has recently published the 'Clinical research in Europe: putting quality and patient safety first' recommendations calling for regulatory harmonization, simplified safety reporting and patient-centred consent. The European Renal Association, a member of the Coalition and contributor to the report, fully supports these recommendations. Implementing such measures is critical to fostering efficient, high-quality nephrology trials in Europe and delivering urgently needed, evidence-based, life-saving and safe therapies for patients with kidney disease.