The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study.

BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.

Implications of the End-Stage Renal Disease Treatment Choices Model among U.S. Dialysis Providers.

The End Stage Renal Disease Treatment Choices (ETC) Model is a mandatory payment model designed to encourage greater use of home dialysis and kidney transplantation among Medicare beneficiaries with kidney failure and to reduce Medicare expenditures while enhancing the quality of care offered to patients with kidney failure. The ETC model will run for six years, from January 1, 2021, to June 30, 2027. This article provides an overview of the ETC Model and analyzes its implications for dialysis providers.

Integrating Care Coordination and Mental Health Research Into Dialysis Practice: Stakeholder Perspectives, Methods, and Outcomes.

Rationale & Objective: Despite many studies suggesting beneficial innovations for patients, few make it into clinical practice. This study aims to enhance patient care by facilitating effective dissemination of patient-centered outcomes research to health care workers in outpatient dialysis facilities, aided by the Patient-Centered Outcomes Research Institute's (PCORI) dissemination and implementation framework. Study Design: Dissemination and implementation project. Setting & Population: Outpatient hemodialysis facilities in the United States. Methods: We brought together panels of key stakeholders, which included researchers, patient subject matter experts, and dialysis personnel. Their role was to provide guidance on the content and methods for disseminating research findings. With a focus on 2 critical patient safety areas-care coordination or care transitions and mental or behavioral health-we developed virtual education modules. These modules were then made available to outpatient dialysis facilities by the national 5-Diamond Patient Safety Program. Results: In 2022, the training was used by more than 2,500 dialysis facilities and approximately 40,000 dialysis staff in the care coordination module, and by more than 300 dialysis facilities and 5,000 staff for the mental health module. Cumulatively, the modules affected more than 179,000 patients. Evidence of efficacy was the significant increase in trainee knowledge of research findings and implementation considerations (P ≤ 0.05). Limitations: Potential selection bias because dialysis facilities that did not participate in the program may differ significantly from those that did, which may affect generalizability. In addition, variable timing in release of the different modules may have influenced uptake by facilities. Conclusions: By using key stakeholder guidance and accessible virtual education modules, the implementation framework shows promise in effectively disseminating research findings within outpatient dialysis settings. This method potentially carries implications for broader health care settings as well. Plain-Language Summary: Our study addresses a common health care challenge-many promising ideas for improving patient care never actually reach the patients. We aimed to bridge the dissemination gap by sharing research with health care workers in outpatient dialysis, promoting evidence-based practice. We collaborated with experts, patients, and dialysis personnel to develop easy-to-understand educational materials focused on 2 critical topics: care coordination and mental health. In 2022, our training benefited more than 2,500 facilities and 40,000 staff for care coordination, and 300 facilities with 5,000 staff for mental health, positively affecting more than 179,000 patients. We found that the training significantly increased knowledge among staff. Our approach shows promise for sharing research effectively in dialysis centers and potentially in other health care settings.

Pathways Project: Development of a Multimodal Innovation To Improve Kidney Supportive Care in Dialysis Centers.

Current care models for older patients with kidney failure in the United States do not incorporate supportive care approaches. The absence of supportive care contributes to poor symptom management and unwanted forms of care at the end of life. Using an Institute for Healthcare Improvement Collaborative Model for Achieving Breakthrough Improvement, we conducted a focused literature review, interviewed implementation experts, and convened a technical expert panel to distill existing evidence into an evidence-based supportive care change package. The change package consists of 14 best-practice recommendations for the care of patients seriously ill with kidney failure, emphasizing three key practices: systematic identification of patients who are seriously ill, goals-of-care conversations with identified patients, and care options to respond to patient wishes. Implementation will be supported through a collaborative consisting of three intensive learning sessions, monthly learning and collaboration calls, site data feedback, and quality-improvement technical assistance. To evaluate the change package's implementation and effectiveness, we designed a mixed-methods hybrid study involving the following: (1) effectiveness evaluation (including patient outcomes and staff perception of the effectiveness of the implementation of the change package); (2) quality-improvement monitoring via monthly tracking of a suite of quality-improvement indicators tied to the change package; and (3) implementation evaluation conducted by the external evaluator using mixed methods to assess implementation of the collaborative processes. Ten dialysis centers across the country, treating approximately 1550 patients, will participate. This article describes the process informing the intervention design, components of the intervention, evaluation design and measurements, and preliminary feasibility assessments. Clinical Trial registry name and registration number: Pathways Project: Kidney Supportive Care, NCT04125537.

Correlates of change in health care worker seasonal influenza vaccination rates among dialysis facilities.

We conducted a campaign to increase seasonal influenza vaccination of dialysis health care workers (HCWs) in the District of Columbia, Maryland, Virginia, and West Virginia. Between the 2010-2011 and 2011-2012 influenza seasons we examined the correlates of change. HCW vaccination rates improved significantly (P < .01) from a mean ± standard deviation of 64.5 ± 27.4 to 72.7 ± 23.1. Evidence-based practices were in wide use and although we did not find an association between these and improvement, we did find that lower-performing facilities tended to improve more (P < .01) and there was a positive relationship between patient influenza vaccination rates and improvement in HCW rates (P < .01), with the mean ± standard deviation patient rate of 88.3 ± 7.9 exceeding the HCW rate during the 2011-2012 season (P < .01).