Questionnaire survey on core outcomes to improve Quality of Life of patients on hemodialysis therapy, and awareness gap between doctors and patients

Abstract

To improve the quality of life (QoL) of patients on chronic dialysis therapy, it is crucial to identify the core outcomes for those patients. The present survey aimed to examine the main outcomes that are recognized as crucially important by doctors and patients and to identify the differences between these two groups. A voluntary survey was conducted via mail among doctors (specialists in dialysis therapy) and chronic hemodialysis patients (at outpatient clinics). The respondents were required to make subjective evaluations (on a Likert scale) about the importance of 45 keywords associated with 4 hemodialysis-related dimensions (disease and prevention, dialysis therapy, subjective symptoms, and lifestyle-related). Responses were obtained from 184 doctors (recovery rate: 36.8％) and 898 patients (89.8％). The 20 keywords that were most highly prioritized by each group included 14 items relating to disease and prevention or dialysis therapy, while the remaining 6 items chosen by the patients all related to subjective symptoms (chronic fatigue, being washed out after dialysis) or lifestylerelated issues (travel, impact on family/friends, financial impact, impact on work and employment). Regarding subjective symptoms, the leading item for patients was “being washed out after dialysis”, followed by “chronic fatigue”. Among all the keywords, the largest gap in outcome significance between patients and doctors was seen for “chronic fatigue”, followed by “travel” and “being washed out after dialysis”. Regarding the measures employed for “chronic fatigue” and “being washed out after dialysis”, 19.2％, and 12.1％ of doctors, respectively, responded that these measures were “sufficient”. The core outcomes for dialysis patients were “being washed out after dialysis” and “chronic fatigue”. Conversely, doctors considered these outcomes to be less significant, despite recognizing that the associated countermeasures are insufficient, indicating the presence of clinical inertia. Dialysis therapy-related fatigue needs to be targeted by a multidiscipline approach in order to improve patientsʼ QoL.