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Improving Lifelong Comprehensive Care Coordination in Nephropathic Cystinosis: Multidisciplinary Perspectives
Ladan Golestaneh1, Elizabeth G Ames2, Maya H Doyle3,4
1Department of Internal Medicine, Section of Nephrology, Yale School of Medicine, New Haven, Connecticut, USA.
Kidney International Reports
|January 26, 2026
Summary
Nephropathic cystinosis, a rare disorder, now has improved life expectancy, transforming into a chronic condition. This review explores optimizing care delivery and understanding factors influencing long-term outcomes for patients.
Area of Science:
- Rare diseases
- Lysosomal storage disorders
- Nephrology
Background:
- Nephropathic cystinosis involves cellular cystine accumulation and multiorgan damage.
- Historically fatal in pediatrics, advances have extended life expectancy into the 50s.
- The disease now presents a chronic condition with adult extrarenal manifestations.
Purpose of the Study:
- To explore care delivery optimization for cystinosis patients across their lifespan.
- To enhance understanding of factors influencing treatment adherence and long-term outcomes.
- To address gaps in managing care fragmentation and interdisciplinary collaboration.
Main Methods:
- Literature review on care delivery models for rare diseases.
- Analysis of disease-, patient-, provider-, and system-related factors.
- Exploration of strategies to improve patient and clinician experiences.
Main Results:
- Nephrologists play a central role in coordinating multidisciplinary care.
- Increased life expectancy necessitates managing extrarenal complications.
- Gaps exist in strategies for reducing care fragmentation and enhancing collaboration.
Conclusions:
- Optimizing care delivery is crucial for improving long-term outcomes in cystinosis.
- Addressing care fragmentation and enhancing collaboration are key challenges.
- Further research is needed to refine management strategies for this chronic condition.
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