The EDITH project: What is it and what do the first results show?
Dr. Vianda Stel, Netherlands, ERA-EDTA Renal Registry
EDITH stands for “The Effect of Differing Kidney Disease Treatment Modalities and Organ Donation and Transplantation Practices on Health Expenditure and Patient Outcomes”.
EDITH started on 1 January 2017 with funding from the 3rd Health Programme of the EU.
The EDITH consortium consists of 10 partners from all over Europe together with collaborating stakeholders including the EKHA as well as renal registries, ERA-EDTA, the European Kidney Patients Federation, the French Agence de la Biomédecine and national kidney foundations.
In Europe we see significant variation in the management of end stage kidney disease and in access to dialysis and kidney transplantation. Therefore EDITH is examining the effect of this variation on patient outcomes and health expenditure. The EDITH project is composed of several Work Packages (WP). The ERA-EDTA Registry participates in WP 4 entitled: Treatment modalities choices, outcomes and costs for ESKD in the EU and associated countries. This work package that will address the epidemiology and costs of different treatment modalities for end-stage kidney disease.
WP5 and WP6 look at setting up a European Living Donor Registry and a European Kidney Transplant Registry for the follow-up of living donors and transplant recipients, respectively. As part of WP6, 24 of 28 countries replied on suggested dataset (donor data, recipient data, transplantation data, follow up data), 4 Member States have indicated the interest in a national registry, and Quality of Life datasets are to be defined.
To understand the reasons for the international differences in the number of patients with a particular form of dialysis or kidney transplant, one of the aims of the EDITH project is to examine factors that influence the choice of treatment modalities made by patients and nephrologists. To this end, an EDITH kidney patient survey on treatment modality choice is currently being distributed among dialysis and kidney transplant patients in almost all Member States and associated countries. A questionnaire for nephrologists is currently being developed.
The patients questionnaire seeks to gather opinion from dialysis and kidney transplant patients’ on treatment modality choice. More specifically, the questionnaire aims to look at the following aspects:
- Information provision (also on conservative care)
- Involvement in decision making
- Factors influencing choice
- Satisfaction with choice
The EDITH kidney patient survey has been translated in 20 languages (translation ongoing for another 9 languages) and is being distributed as an online questionnaire via patient associations (email), nephrologists, links on facebook/newsletters/websites, etc. (see link here: https://www.era-edta-reg.org)
1535 patients from 13 Member States have replied so far and 30 countries have indicated they are willing to participate in the survey – more responses are thus to come.
Preliminary results indicate strong variations across countries as to if and when patients received information on treatment modalities: while less than 10% UK patients mention having never received information on treatment modalities, more than 30% of patients in Greece condemn the lack information on treatment modalities.
When looking at from whom information was mostly received, it is clear that the main information is nephrologists but in some countries nurses play a big role too (Denmark, Finland, Ireland, UK) while their role is very limited in others (Greece, Romania, Austria).
An interesting preliminary outcome in on home dialysis for which a high number of patients in most Member States admit having received no information. As regards how the decision on treatment was made, it comes out of the survey that it is usually made by doctors and patients together, a process that most patients seem to be satisfied with in all participating Member States.
Quality of life and survival chances are the most important criteria considered by patients. An interesting outcome so far is also that the main reasons for not getting a transplant is not only unavailability of kidneys, but concerning living donation that patients do not want to ask family and friends…
All this and following data gathered in the framework of the patients’ survey feeds into the EDITH project which may ultimately help improving access to the most suitable and cost-effective treatment modality.
Download Dr Vian Stel presentations slides here.