Background
Health system performance assessment helps identify areas for improvement and guides policy initiatives. Although well-validated indicators exist for measuring organ donation and transplantation performance at the facility level, consensus on indicators for assessing national programmes is lacking. The aim of this study was to develop a comprehensive scorecard for evaluating national organ donation and transplantation programmes.
Methods
A three-step approach was used. First, a targeted literature review identified potential indicators from regulatory documents, national transplant organization reports, and databases. Second, indicators were mapped to an established transplant system framework and refined through preliminary expert consultations. Third, a modified Delphi consensus process validated the indicators. The Delphi panel comprised international experts in health policy, organ donation, transplantation, and patient representation. Participants rated 168 indicators using a five-point Likert scale across two rounds (24 experts completed round 1 and 22 experts completed round 2). Consensus for inclusion required 80% agreement.
Results
Of 168 indicators evaluated, 103 achieved consensus for inclusion. After consolidation of organ-specific indicators, the final set contained 84 indicators across seven domains: monitoring and reporting (8 indicators), prevention and need (9 indicators), waiting lists (11 indicators), consent (4 indicators), donation (28 indicators), transplantation (14 indicators), and follow-up (10 indicators). The indicator set incorporates established metrics such as waiting list statistics, donation rates, and complication rates alongside novel system-level indicators addressing structural factors, patient-centredness, and equity in care delivery.
Conclusion
This validated indicator set provides a standardized tool for assessing and comparing transplant system performance across European countries, supporting performance benchmarking and evidence-informed policy development.
Simon Streit, George Wharton, Jasmine Mah, Robin van Kessel, Apostolos Prionas, Charlotte Johnston-Webber, John Boletis, Beatriz Domínguez-Gil, Anna Forsberg, Ana França, Dale Gardiner, Patrick Jeurissen, Irene Papanicolas, Oliver Pearcey, Allan Rasmussen, Jacopo Romagnoli, Elias Mossialos, Vassilios Papalois
Disease Category: Effective practice/health systems
Disease Name: N/A
Age Range: 0 - 120
Sex: Either
Nature of Intervention: Management of care
- Clinical experts
- Patient/ support group representatives
- Researchers
- Core indicator set
- Delphi process
- Literature review