Use of a Decision Aid for Patients Considering Peritoneal Dialysis and In-Center Hemodialysis: A Randomized Controlled Trial.

RATIONALE & OBJECTIVE: Annually, about 100,000 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. FUNDING: This study was funded through a Patient Centered Outcomes Research Institute (PCORI) award (#1109). TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT02488317.

Remote Management for Peritoneal Dialysis: A Qualitative Study of Patient, Care Partner, and Clinician Perceptions and Priorities in the United States and the United Kingdom.

RATIONALE & OBJECTIVE: 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. LIMITATIONS: Remote management is new to PD, mirrored in the limited penetration of use in the study sample, suggestive of findings reflecting early adoption. CONCLUSIONS: Participants welcomed technological advances such as remote management for PD, although priorities differed by stakeholder group. Remote management could potentially influence health care provider decisions about patient suitability for PD, while patients/care partners prioritized pre-emptive and early treatment adjustments. Currently, decisions about access to remote management are outside the control of patients and families, but this may change with more widespread use.

Patient-staff interactions and mental health in chronic dialysis patients.

Chronic dialysis imposes ongoing stress on patients and staff and engenders recurring contact and long-term relationships. Thus, chronic dialysis units are opportune settings in which to investigate the impact of patients' relationships with staff on patient well-being. The authors designed the present study to examine the degree to which perceptions of open communication between patients and staff affect patient mental health. A one-year, two-wave longitudinal survey assessed patient (N = 109) perceptions of the interpersonal environment and mental health. Assessments included sharing personal information (open disclosure), assisting one another (helping), staff respect for patients (respect), and hierarchical patient-staff relations (formal staff authority). Cross-sectional and longitudinal regression analyses examined how these characteristics of the interpersonal environment relate to depression and subjective well-being among patients. Multivariate analysis showed that open disclosure correlated independently with lower levels of depression at baseline (N = 109) and a predicted significant decrease in depression over time (N = 64). Other interpersonal characteristics did not correlate with depression or subjective well-being at baseline or longitudinally. The interpersonal climate in chronic dialysis units influences patient well-being. Contrary to traditional views, open disclosure in patients' relationships with staff is not detrimental and contributes to well-being.

Peer mentoring: a culturally sensitive approach to end-of-life planning for long-term dialysis patients.

BACKGROUND: This study is designed to explore the impact of peer mentoring on end-of-life decision making. METHODS: A controlled randomized intervention study with 203 patients from 21 dialysis centers across Michigan explored the impact of peer mentors, dialysis patients trained to help other patients, on end-of-life planning. RESULTS: Communicating information on advance directives (ADs) through peer mentoring significantly influenced the completion of ADs overall compared with distributing standard printed material or no specific designed intervention. However, the influence was most prominent among African Americans, not only increasing actual completion of ADs (P < 0.001) and comfort discussing ADs (P < 0.01), but also improving subjective well-being (P < 0.05) and anxiety (P < 0.05) during the study period. These effects of peer mentoring did not appear among white patients, although printed material on ADs decreased reported suicidal ideation (P < 0.05). CONCLUSION: These results suggest the importance of addressing specific cultural factors in the process of AD education. Common practice assumes that printed materials are effective in educating patients about health care and decision making. However, peer mentoring, a relationship-centered person-to-person approach, may be more effective in some cultural groups because it partakes of oral, rather than written, traditions. Acknowledging cultural differences and tailoring our approach could be powerful in enhancing trust and participation and decreasing potential disparities in health care outcomes.

Palliative care in chronic kidney disease: peer mentoring program personalizes advance directives discussions.

Medical professionals in nephrology are trained to think about improving quality and quantity of life with their patients, but only recently are they being urged to consider ways to improve end-of-life care. For many staff, this still feels contradictory. One nephrologist recently told these authors, "I was trained to help people live, not to help them die." The RWJF Promoting Excellence in End-of-Life Care work group has investigated, accumulated, and designed resources to help renal teams improve in this challenging arena. Peer mentoring is one such powerful resource, and, once in operation, is cost free. In conjunction with renal social work and the renal team, peer mentoring is a wonderful program that can decrease anxiety and preserve caring relationships in our burgeoning dialysis communities.