Abstract
BackgroundPatients reaching end-stage renal disease must make a difficult decision regarding renal replacement therapy (RRT) options. Because the choice between dialysis modalities should include patient preferences, it is critical that patients are engaged in the dialysis modality decision. As part of the Empowering Patients on Choices for RRT (EPOCH-RRT) study, we assessed dialysis patients’ perceptions of their dialysis modality decision-making process and the impact of their chosen modality on their lives.MethodsA 39-question survey was developed in collaboration with a multi-stakeholder advisory panel to assess perceptions of patients on either peritoneal dialysis (PD) or in-center hemodialysis (HD). The survey was disseminated to participants in the large US cohorts of the Dialysis Outcomes and Practice Patterns Study (DOPPS) and the Peritoneal DOPPS (PDOPPS). Survey responses were compared between PD and in-center HD patients using descriptive statistics, adjusted logistic generalized estimating equation models, and linear mixed regression models.ResultsSix hundred fourteen PD and 1346 in-center HD participants responded. Compared with in-center HD participants, PD participants more frequently reported that they were engaged in the decision-making process, were provided enough information, understood differences between dialysis modalities, and felt satisfied with their modality choice. PD participants also reported more frequently than in-center HD participants that partners or spouses (79% vs. 70%), physician assistants (80% vs. 66%), and nursing staff (78% vs. 60%) had at least some involvement in the dialysis modality decision. Over 35% of PD and in-center HD participants did not know another dialysis patient at the time of their modality decision and over 60% did not know the disadvantages of their modality type. Participants using either dialysis modality perceived a moderate to high impact of dialysis on their lives.ConclusionsPD participants were more engaged in the modality decision process compared to in-center HD participants. For both modalities, there is room for improvement in patient education and other support for patients choosing a dialysis modality.
Highlights
Patients reaching end-stage renal disease must make a difficult decision regarding renal replacement therapy (RRT) options
Some of the factors participants identified were independence, flexibility in daily lives, concerns about looks, and quality and quantity of life [14]. For this part of the EPOCH-RRT study, we developed a survey partly based on the information gained from interviews, and we administered the survey to the large, national United States (US) samples of participants in the Dialysis Outcomes and Practice Patterns Study (DOPPS) and the Peritoneal DOPPS (PDOPPS)
Study participants Out of 807 peritoneal dialysis (PD) and 1683 in-center HD participants approached for participation, 614 (76.1%) PD participants from 55 facilities and 1346 (80.0%) HD participants from 80 facilities responded to at least one question in the survey (Fig. 1)
Summary
Patients reaching end-stage renal disease must make a difficult decision regarding renal replacement therapy (RRT) options. Over 120,000 patients reaching end-stage renal disease (ESRD) every year in the United States (US) are faced with a complex and difficult decision regarding renal replacement therapy (RRT) modality options [1]. The choice between modalities should center on patient preferences, and it is critical that patients are included and engaged in the dialysis modality decision [3, 4] This is supported by increasing evidence that aligning treatment with patient preferences may improve adherence to therapy, quality of life, and better medical outcomes [5,6,7,8]
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