title: Preferences of patients undergoing hemodialysis - results from a questionnaire-based study with 4,518 patients.
abstract: BACKGROUND
  Chronic kidney disease is an increasing health problem worldwide and in its final stage (stage V) can only be treated by renal replacement therapy, mostly hemodialysis. Hemodialysis has a major influence on the everyday life of patients and many patients report dissatisfaction with treatment. Little is known about which aspects of treatment are considered important by hemodialysis patients. The objective of this study was to rate the relative importance of different outcomes for hemodialysis patients and to analyze whether the relative importance differed among subgroups of patients.
  
  
  METHODS
  Within the framework of a yearly questionnaire which is distributed among patients receiving hemodialysis by the largest hemodialysis provider in Germany, we assessed the relative importance of 23 outcomes as rated on a discrete visual analog scale. Descriptive statistics were used to rank the outcomes. Subgroup analyses were performed using Mann-Whitney U or Kruskal-Wallis tests.
  
  
  RESULTS
  Questionnaires of 4,518 hemodialysis patients were included in the analysis. The three most important outcomes were safety of treatment, health-related quality of life, and satisfaction with care. Further important outcomes were hospital stays, accompanying symptoms, hemodialysis duration, and the improvement or preservation of a good emotional state. Age, profession, and education had the strongest influence on relevant differences of preferences for outcomes; no relevant influence of sex or comorbidity was observed.
  
  
  CONCLUSIONS
  Outcomes concerning the delivery or provision of care and aspects influencing quality of life are rated by patients to be at least as important as clinical outcomes. Many of the outcomes judged to be important by the patients are not regularly considered in research, evaluation studies, or quality programs.
authors.affiliation: Department of Epidemiology and International Public Health, Bielefeld University, Bielefeld, Germany.
authors.forename: Inger Miriam
authors.initials: IM
authors.lastname: Janssen
authors.affiliation: Department for Health Services Research, University of Bremen, Bremen, Germany ; Health Sciences Bremen, University of Bremen, Bremen, Germany.
authors.forename: Ansgar
authors.initials: A
authors.lastname: Gerhardus
authors.affiliation: Department of Internal Medicine II, University Hospital of Cologne, Cologne, Germany.
authors.forename: Gero D
authors.initials: GD
authors.lastname: von Gersdorff
authors.affiliation: Department of Internal Medicine II, University Hospital of Cologne, Cologne, Germany.
authors.forename: Conrad August
authors.initials: CA
authors.lastname: Baldamus
authors.affiliation: Department of Internal Medicine II, University Hospital of Cologne, Cologne, Germany.
authors.forename: Mathias
authors.initials: M
authors.lastname: Schaller
authors.affiliation: KfH Kuratorium fuer Dialyse und Nierentransplantation e.V., NeuIsenburg, Germany.
authors.forename: Claudia
authors.initials: C
authors.lastname: Barth
authors.affiliation: Department of Non-Drug Interventions, Institute for Quality and Efficiency in Health Care, Cologne, Germany.
authors.forename: Fueloep
authors.initials: F
authors.lastname: Scheibler
keywords: chronic disease; patient-centered outcomes; patient-centered research; preference elicitation; rating scale