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Background: Hemodialysis sessions frequently become unstable from complications such as intradialytic hypotension and untoward symptoms. Previous patient safety initiatives promote prevention of treatment complications; yet, they have placed little specific focus on avoidable session instability. A patient-centered definition of session instability grounded in patient experiences, and an understanding of patient perceptions of causes and solutions to instability, may enable such efforts. Methods: Twenty-five participants participated in three focus groups and/or a survey. They were purposively sampled for variation in region of residence, and sensitivity to patient well-being. Focus group recordings were analyzed using descriptive coding, in vivo coding, and thematic analysis. Results: Patients define unstable sessions ("bad runs") as those in which they experience severe discomfort or unanticipated events that interfere with their ability to receive therapy. Bad runs were characterized primarily by cramping, low blood pressure ("crashing"), cannulation-related difficulties ("bad sticks"), and clotting of the dialysis circuit or vascular access. Patients believed that cramping and crashing could be explained by both patient and clinician behavior: patient fluid consumption and providers' fluid removal goals. Patients felt that the responsibility for cannulation-related problems lay with dialysis staff, and they asked for different staff or self-cannulated as solutions. Clotting was viewed as an idiosyncratic issue with one's body, and perceived solutions were cliniciandriven. Patients expressed concern about "bad runs" on their ability to achieve fluid balance. Conclusions: Findings point to novel priorities for efforts to enhance hemodialysis session stability, and areas in which patients can be supported to become involved in such efforts.

Objective Hemodialysis patients frequently experience dialysis therapy sessions complicated by intradialytic hypotension (IDH), a major patient safety concern. We investigate user-centered design requirements for a theory-informed, peer mentoring-based, informatics intervention to activate patients toward IDH prevention. Methods We conducted observations (156 hours) and interviews (n = 28) with patients in 3 hemodialysis clinics, followed by 9 focus groups (including participatory design activities) with patients (n = 17). Inductive and deductive analyses resulted in themes and design principles linked to constructs from social, cognitive, and self-determination theories. Results Hemodialysis patients want an informatics intervention for IDH prevention that collapses distance between patients, peers, and family; harnesses patients’ strength of character and resolve in all parts of their life; respects and supports patients’ individual needs, preferences, and choices; and links “feeling better on dialysis” to becoming more involved in IDH prevention. Related design principles included designing for: depth of interpersonal connections; positivity; individual choice and initiative; and comprehension of connections and possible actions. Discussion Findings advance the design of informatics interventions by presenting design requirements for outpatient safety and addressing key design opportunities for informatics to support patient involvement; these include incorporation of behavior change theories. Results also demonstrate the meaning of design choices for hemodialysis patients in the context of their experiences; this may have applicability to other populations with serious illnesses. Conclusion The resulting patient-facing informatics intervention will be evaluated in a pragmatic cluster-randomized controlled trial in 28 hemodialysis facilities in 4 US regions.

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Background Patients on hemodialysis receive dialysis thrice weekly for about 4 hours per session. Intradialytic hypotension (IDH)—low blood pressure during hemodialysis—is a serious but common complication of hemodialysis. Although patients on dialysis already participate in their care, activating patients toward IDH prevention may reduce their risk of IDH. Interactive, technology-based interventions hold promise as a platform for patient activation. However, little is known about the usability challenges that patients undergoing hemodialysis may face when using tablet-based informatics interventions, especially while dialyzing. Objective This study aims to test the usability of a patient-facing, tablet-based intervention that includes theory-informed educational modules and motivational interviewing–based mentoring from patient peers via videoconferencing. Methods We conducted a cross-sectional, mixed methods usability evaluation of the tablet-based intervention by using think-aloud methods, field notes, and structured observations. These qualitative data were evaluated by trained researchers using a structured data collection instrument to capture objective observational data. We calculated descriptive statistics for the quantitative data and conducted inductive content analysis using the qualitative data. Results Findings from 14 patients cluster around general constraints such as the use of one arm, dexterity issues, impaired vision, and lack of experience with touch screen devices. Our task-by-task usability results showed that specific sections with the greatest difficulty for users were logging into the intervention (difficulty score: 2.08), interacting with the quizzes (difficulty score: 1.92), goal setting (difficulty score: 2.28), and entering and exiting videoconference rooms (difficulty score: 2.07) that are used to engage with peers during motivational interviewing sessions. Conclusions In this paper, we present implications for designing informatics interventions for patients on dialysis and detail resulting changes to be implemented in the next version of this intervention. We frame these implications first through the context of the role the patients’ physical body plays when interacting with the intervention and then through the digital considerations for software and interface interaction.