title: 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.
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.
authors: Renal Division, Ghent University Hospital, Ghent, Belgium.
authors: Wim
authors: W
authors: Van Biesen
authors: Department of Medical Informatics, Academic Medical Center, Amsterdam, The Netherlands.
authors: Sabine N
authors: SN
authors: van der Veer
authors: Irish Kidney Association, Dublin, Ireland.
authors: Mark
authors: M
authors: Murphey
authors: A&R Edelman, London, United Kingdom; Department of Public Policy, Central European University, Budapest, Hungary.
authors: Olga
authors: O
authors: Loblova
authors: Department of Nephrology, University Hospital of North Staffordshire, Stoke on Trent, United Kingdom.
authors: Simon
authors: S
authors: Davies
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003657:Decision Making; D005060:Europe; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007676:Kidney Failure, Chronic / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D017582:Renal Replacement Therapy; D011795:Surveys and Questionnaires; D055815:Young Adult