Preferences of patients undergoing hemodialysis – results from a questionnaire-based study with 4,518 patients

Abstract

BackgroundChronic 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.Patients and methodsWithin 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.ResultsQuestionnaires 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.ConclusionOutcomes 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.

Exploring experiences of the quality of nursing care among patients, nurses, caregivers and physicians in a haemodialysis department

“…they generally expected to receiv­e high‐quality, safe and satisfying treatment (Janssen et al . ). Patient safety during HD means providing the foundation of high quality health care.…”

Importance of hemodialysis-related outcomes: comparison of ratings by a self-help group, clinicians, and health technology assessment authors with those by a large reference group of patients

“…Outcomes for inclusion in the questionnaire were identified using patient input; details are described elsewhere 10. In short, a group discussion was held with patients from a self-help group to identify the important outcomes.…”

“…The results from the QiN survey10 were used as a reference to which the other groups were compared (reference group). Comparisons with this group were performed in the following 2 different ways:

In the first analysis, we compared the 7 top-ranked outcomes.

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“…We had previously conducted a survey of 4518 CKD patients treated by hemodialysis to investigate the relative importance that patients assign to various outcomes and found that the 3 most important ones were the safety of treatment, HRQoL and satisfaction with care 10. However, the involvement of such a large patient sample in outcome prioritization in clinical research or HTA would not normally be feasible in practice.…”

The care preferences of patients under hemodialysis

“…Chronic renal failure (CRF) is a globally increasing conditions that is most commonly treated with hemodialysis (1). CRF patients undergo dialysis for at least 18 hours per week (2).…”