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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.Electronic supplementary materialThe online version of this article (10.1186/s12882-018-1096-x) contains supplementary material, which is available to authorized users.

Peritoneal dialysis (PD) is a home-based kidney replacement therapy used by a growing number of patients with kidney failure. This qualitative study explores the impact of remote management technologies on PD treatment priorities of patients, their care partners, and clinicians. Study Design: Qualitative study, designed and conducted in collaboration with a stakeholder panel that included patients, patient advocates, care partners, and health care professionals. Setting & Participants: 13 health care providers, 13 patients, and 4 care partners with at least 3 months experience with PD were recruited from the United States and United Kingdom through postings in PD clinics, websites, and social media. Methodology: Semi-structured telephone interviews with a purposive sample of participants. Analytical Approach: Inductive thematic development adapted from a grounded theory approach through analysis of interview transcripts by 3 independent coders. Results: 4 main themes about PD treatments emerged that enabled evaluation of remote management: (1) impact of PD on everyday life, (2) simplifying treatment processes, (3) awareness and visibility of at-home treatments, and (4) support for managing treatments. The relative importance of these themes differed between patients/care partners and health care providers and by use of remote management cyclers. Complete author and article information provided before references.

US patients face the difficult choice between the most common dialysis types, in-center hemodialysis and peritoneal dialysis. This study evaluated the value of a new decision aid to assist in the choice of dialysis modality. Study Design: A parallel-group randomized controlled trial to test the efficacy of the decision aid on decision-making outcomes. Setting & Participants: English-speaking US adults with advanced chronic kidney disease and internet access enrolled in 2015. Intervention: Participants randomly assigned to the decision aid intervention received information about chronic kidney disease, peritoneal dialysis, and hemodialysis and a value clarification exercise through the study website using their own electronic devices. Participants in the control arm were only required to complete the control questionnaire. Questionnaire responses were used to assess differences across arms in decision-making outcomes. Outcomes: Treatment preference, decisional conflict, decision self-efficacy, knowledge, and preparation for decision making. Results: Of 234 consented participants, 94 (40.2%) were lost to follow-up before starting the study. Among the 140 (70 in each arm) who started the study, 7 were subsequently lost to follow-up. Decision aid users had lower decisional conflict scores (42.5 vs 29.1; P < 0.001) and higher average knowledge scores (90.3 vs 76.5; P < 0.001). Both arms had high decisional self-efficacy scores independent of decision aid use. Uncertainty about choice of dialysis treatment declined from 46% to 16% after using the decision aid. Almost all (>90%) users of the decision aid reported that it helped in decision making. Limitations: Limited generalizability from the study of self-selected study participants who had to have internet access, speak English, and have computer literacy. High postrandomization loss to follow-up. Evaluation of only short-term outcomes. Conclusions: The decision aid improves decision-making outcomes immediately after use. Implementation of the decision aid in clinical practice may allow further assessment of its effects on patient engagement and empowerment in choosing a dialysis modality.