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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

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

Authors

Wim Van Biesen

Sabine N. van der Veer

Mark Murphey

Olga Loblova



Contributors

Giuseppe Remuzzi
Editor

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.

Citation

Van Biesen, W., van der Veer, S. N., Murphey, M., Loblova, O., & Davies, S. (in press). 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. PloS one, 9(7), Article e103914. https://doi.org/10.1371/journal.pone.0103914

Journal Article Type Article
Acceptance Date Jul 3, 2014
Online Publication Date Jul 31, 2014
Deposit Date Nov 29, 2023
Journal PloS one
Print ISSN 1932-6203
Publisher Public Library of Science
Peer Reviewed Peer Reviewed
Volume 9
Issue 7
Article Number e103914
DOI https://doi.org/10.1371/journal.pone.0103914
Keywords Multidisciplinary