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Kidney Week

Abstract: TH-PO269

The EDITH Kidney Patient Survey on Modality Choice Among More Than 8000 European Dialysis and Transplant Patients

Session Information

Category: Dialysis

  • 701 Dialysis: Hemodialysis and Frequent Dialysis

Authors

  • de Jong, Rianne W., ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands, Amsterdam, Netherlands
  • Stel, Vianda S., ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands, Amsterdam, Netherlands
  • Vanholder, Raymond C., University Hospital Gent, Gent, Belgium
  • Massy, Ziad, Ambroise Pare University Hospital and Inserm U1018 Eq5, Boulogne Billancourt/ Paris cedex, France
  • Jager, Kitty J., ERA-EDTA Registry, Department of Medical Informatics, Amsterdam Public Health Research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands, Amsterdam, Netherlands
Background

Renal replacement therapy (RRT) modality selection may be challenging for both patients and nephrologists. Within the EDITH project we surveyed adult European dialysis and kidney transplant patients on factors influencing modality choice and their satisfaction with the modality choice made.

Methods

The EDITH kidney patient survey (online and on paper) was translated into 30 languages. European adults with end-stage kidney disease treated by dialysis or kidney transplantation were eligible to participate between November 2017 and November 2018.

Results

8133 patients from 40 European countries participated. Age, gender and modality characteristics (56% male, mean age 59 years (SD 14), 66% on haemodialysis (HD), 6% on peritoneal dialysis (PD), 29% on transplantation (Tx)) reflected the European RRT population in the ERA-EDTA Registry.
A quarter of the patients did not receive any information on any modality before the start of RRT. 44% received no information on home haemodialysis (HHD), 24% nothing on PD and resp. 23% and 20% nothing on living and deceased kidney donor Tx. The majority of those who received information, were (very) satisfied with the information (range 57% for HHD to 86% for deceased kidney donor Tx).
Two-thirds of the patients reported that decision making was shared with their doctor and most patients (83%) were satisfied with way the decision was made.
The main reasons for patients not having a particular treatment are listed in Table 1. Most important factors influencing modality choice were quality of life, survival and safety (resp. 97.3%, 96.6% and. 92.2% rated as (very) important). Results were similar by age group, sex, educational level and start of RRT time period.

Conclusion

Though most patients seem to be satisfied with the information provision and modality choice, there remains room for improvement as a quarter of all patients did not receive any information on treatment modalities before start of RRT. Better education may also influence patients to choose a home-based form of dialysis or empower them to find a living donor.

Table 1 Main reasons not to have a certain treatment
HHD
Don't want treatment at home (34%)
Treatment is not available in my hospital (26%)
Discomfort with no supervision (24%)
PD
Don't want treatment at home (34%)
Dislike of abdominal catheter (23%)
Fear of peritonitis (22%)
Living Tx
No living kidney donor available (37%)
Don't want to ask potential donors (31%)
Concerns about the health of the donor (18%)
Deceased donor Tx
Not healthy enough (25%)
Currently on waiting list (22%)
Too old (18%)

Funding

  • Government Support - Non-U.S.