In 2017 EKHA launched a multi-country survey to explore and address the issue of kidney patient choice of treatment (or lack thereof) in different Member States and look at how it relates in the context of the sustainability of kidney care, economic impact on health systems, and outcomes impact on the patient and his/her quality of life was the aim of the initiative which took place in 2017.
The survey was carried out in 9 countries (UK, France, Netherlands, Slovenia, Lithuania, Spain, Greece, Portugal and Poland) – in form of two online questionnaires, one for patients and one for healthcare professionals.
Main findings:
- Amongst transplantation options, living donation is often discriminated
- Low patient awareness of possible options due to the lack of patients education
- Free choice is hampered by financial drivers and lack of trained staff
- The opinions of the patients and their families are often neglected
The survey results were presented during the 2017 European Kidney Forum, and further discussed at the ERA/EDTA 2017 Congress in Madrid during the meeting of the EDITH project. Findings will feed into the EDITH project work. Data will also be submitted to further analysis for eventual publication by the team of the ERA-EDTA registry.