Patients' perceptions of information and education for renal replacement therapy: an independent survey by the European Kidney Patients' Federation on information and support on renal replacement therapy

Wim Van Biesen, Sabine N van der Veer, Mark Murphey, Olga Loblova, Simon Davies, Wim Van Biesen, Sabine N van der Veer, Mark Murphey, Olga Loblova, Simon Davies

Abstract

Background: Selection of an appropriate renal replacement modality is of utmost importance for patients with end stage renal disease. Previous studies showed provision of information to and free modality choice by patients to be suboptimal. Therefore, the European Kidney Patients' Federation (CEAPIR) explored European patients' perceptions regarding information, education and involvement on the modality selection process.

Methods: CEAPIR developed a survey, which was disseminated by the national kidney patient organisations in Europe.

Results: In total, 3867 patients from 36 countries completed the survey. Respondents were either on in-centre haemodialysis (53%) or had a functioning graft (38%) at the time of survey. The majority (78%) evaluated the general information about kidney disease and treatment as helpful, but 39% did not recall being told about alternative treatment options than their current one. Respondents were more often satisfied with information provided on in-centre haemodialysis (90%) and transplantation (87%) than with information provided on peritoneal dialysis (79%) or home haemodialysis (61%), and were more satisfied with information from health care professionals vs other sources such as social media. Most (75%) felt they had been involved in treatment selection, 29% perceived they had no free choice. Involvement in modality selection was associated with enhanced satisfaction with treatment (OR 3.13; 95% CI 2.72-3.60). Many respondents (64%) could not remember receiving education on how to manage their kidney disease in daily life. Perceptions on information seem to differ between countries.

Conclusions: Kidney patients reported to be overall satisfied with the information they received on their disease and treatment, although information seemed mostly to have been focused on one modality. Patients involved in modality selection were more satisfied with their treatment. However, in the perception of the patients, the freedom to choose an alternative modality showed room for improvement.

Conflict of interest statement

Competing Interests: Wim Van Biesen has received travel fees on different occasions from Baxter, Fresenius and Gambro, and serves as a steering committee member of a Fresenius sponsored study (IPOD-PD). Olga Löblová has been employed by A&R Edelman and has received consultancy fees from A&R Edelman and Baxter. Simon Davies has received research funding and honoraria for lecturing and advisory board participation from Baxter and Fresenius. This does not alter the authors' adherence to all PLOS ONE policies on sharing data and materials.

Figures

Figure 1. Respondents’ scores on how helpful…
Figure 1. Respondents’ scores on how helpful different information sources on kidney disease have been.
Abbreviations: HD, haemodialysis, PD, peritoneal dialysis.
Figure 2. Respondents’ satisfaction with information they…
Figure 2. Respondents’ satisfaction with information they had on treatment options.

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