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Better Care and Outcomes for Dialysis Patients: Dissemination of PCORI Findings Using ESRD Networks Kick-Off Call: January 23, 2019 @ 2 ET This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington


  1. Better Care and Outcomes for Dialysis Patients: Dissemination of PCORI Findings Using ESRD Networks Kick-Off Call: January 23, 2019 @ 2 ET This project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (12149-MTPPI)

  2. AGENDA 1. Welcome 2. Introductions 3. Project Overview 4. Summary of FOUR Dissemination Projects 5. Study Activities & Timeline 6. Dissemination Strategies 7. Dissemination Venues 8. Dissemination Goals & Outcomes 9. Patient & Stakeholder Engagement Plan 2

  3. INTRODUCTIONS PATIENT & STAKEHOLDER DISSEMINATION TEAM ❑ MTPPI Staff (Mae, Dennis & Yi) ❑ Network 5 reps (Brandy, Lori, & Renee) ❑ Patient Advisory Members (Patrick, David, Richard & Nieltje) 3

  4. PROJECT OVERVIEW • Background/rationale: Increase knowledge and uptake of new PCORI ESRD findings via 18 ESRD Networks • Selected studies: Align with Network 5 CMS and internal quality improvement efforts • Start & end date: January 1, 2019 – December 31, 2020 • Goal: Disseminate four large PCORI-funded dialysis study findings into ESRD Network 5 & create scalability to other networks 4

  5. PROJECT OVERVIEW • PRIMARY TARGET AUDIENCE: Dialysis patients • SECONDARY TARGET AUDEINCES: ESRD Network leadership, nephrologists, medical directors, dialysis facility staff, nurses, social workers, technicians, family members & caregivers, others with care for and treat dialysis patients 5

  6. PCORI PRIORITIES PCORI conducts research to answers patient-centered questions, such as: “Given my personal characteristics, conditions, and preferences, what should I expect will happen to me?” “What are my options, and what are the potential benefits and harms of those options?” “What can I do to improve the outcomes that are most important to me?” “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and health care? 6

  7. SUMMARY OF FOUR DISSEMINATION PROJECTS STUDY 1: Does an Online Decision Aid Help People with Advanced Kidney Disease Choose between Two Treatment Options: Hemodialysis and Peritoneal Dialysis Principal Investigator — Lalita Subramanian, Arbor Research Collaborative for Health, MI Study design — 140 pre-dialysis patients randomized to decision aid or usual care Results — Decision aid increased knowledge about CKD and treatment options, confidence in modality selection and rationale for modality selection Relevance — Patients with CKD may consider using decisions aids to learn more about dialysis options and help decide which treatment best matches their needs and preferences. Potential impact on Network 5 — Currently in the US overall and in Network 5 specifically, rates of home dialysis are very low, 13.6% and 12.0%, respectively. Use of an online decision modality choice – highlighting the advantages of home dialysis – could increase the proportion of home patients in Network 5 to 16%, the initiative goal identified by CMS to be achieved by 2020. 7

  8. SUMMARY OF FOUR DISSEMINATION PROJECTS STUDY 2: Treatment Options for Depression in Patients Undergoing Hemodialysis: Psychotherapy versus Drug Therapy Principal Investigator — Rajnish Mehrotra, Harborview Medical Center, University of Washington, Seattle, WA Study design — RCT of 400 patients to examine influence of interview to diagnose depression and RCT of 180 patients to examine psychotherapy vs. drug therapy Results — This study will: 1) Determine if an engagement interview leads to dialysis patients accepting treatment for depression; and 2) Determine if sertraline vs. cognitive behavioral therapy leads to decrease in depressive symptoms & sleep & fatigue. Relevance — Findings will bridge a large knowledge gap in the management of psychosocial health of dialysis patients by providing dialysis patients, caregivers and other stakeholders with information to make evidence-based decisions about depression to improve outcomes relevant to them. Potential impact on Network 5 — Although depression affects 25% of all dialysis patients, few receive treatment. 8

  9. SUMMARY OF FOUR DISSEMINATION PROJECTS STUDY 3: Improving Patient Quality of Life & Caregiver Burden by Peer-Led Mentoring Program for Patients with Chronic Kidney Disease and Their Caregivers Principal Investigator — Nasrollah Ghahramani, Penn State College of Medicine, Hershey, PA Study design — RCT that randomly assigns patients to 1) face-to-face peer mentoring; 2) online peer mentoring; and 3) information-only control group Results — Expect face to face and online peer mentoring is anticipated to result in improved quality of life for dialysis patients and decreased burden among caregivers. Relevance — Decision to include online peer mentoring is based on patient suggestions regarding convenience for those in rural areas or hard to ambulate. Potential impact on Network 5 — The complexities of decisions regarding dialysis care and treatment are multifarious and life-altering. Mentoring, particularly by trained peers, is an effective model to provide individualized, patient-centered information, decision and self- management support to improve outcomes for patients with chronic conditions. 9

  10. SUMMARY OF FOUR DISSEMINATION PROJECTS STUDY 4: Shared Decision-Making and Renal Supportive Care: Identifying Patient and Care-giver End-of-Life Preferences Principal Investigator — Lewis Cohen & Michael Germain, Baystate Medical Center, MA Study design — Created a tool for predicting early mortality after dialysis initiation among elderly patients and, building on preliminary results from Massachusetts, improved this risk tool and demonstrated its effect on additional clinics in New Mexico. Results — Use of the risk tool led to increased use of hospice services in MA dialysis clinics Relevance — SDM Renal Supportive Care Communication intervention intends to improve discussions about prognosis and end-of-life care with ESRD patients. Potential impact on Network 5 — Uptake of a SDM renal supportive care tool is anticipated to increase discussions around prognosis which is a key step in end-of-life planning, enhance preference-concordant care (patients goals are achieved), increase the frequency and timing of hospice referrals, and allow for death at home rather than the hospital. 10

  11. STUDY ACTIVITIES AND TIMELINE Phase I (first 15 months) focus on Network 5 Phase II (next 6 months) focus on Networks 3 & 4 Phase III (final 3 months) focus on remaining 15 Networks and 2 large LDO 11

  12. STUDY ACTIVITIES AND TIMELINE Mon Mon Mon Mon Mon Mon Mon Mon Milestones and Major Activities 1-3 4-6 7-9 10-12 13-15 16-18 19-21 22-24 x Kick-off meeting with MTPPI staff, Network 5 reps, and Patient Advisory Committee members x x Development of initial dissemination tools and evaluation forms — educational and training materials Conduct dissemination activities in Network 5 x x x ( Phase I ) Revise dissemination materials based on evaluation of x Phase I Conduct dissemination activities in Networks 3 & 4 x x ( Phase II ) Revise dissemination materials based on evaluation of x Phase II Scale up dissemination activities to all 18 Networks x ( Phase III ) 12

  13. DISSEMINATION STRATEGIES ❖ INCREASE THE REACH OF EVIDENCE — Social media, webinars or in-person visits to Patient Advisory Committee meetings ❖ INCREASE MOTIVATION TO USE AND APPLY EVIDENCE — Use of champions (cheerleaders), opinion or thought leaders, social networks ❖ INCREASE ABILITY TO USE AND APPLY EVIDENCE — Provision of “ how to ” materials, skill training, capacity building, and problems solving 13

  14. DISSEMINATION STRATEGIES ❖ Design both educational workshops as well as training “hands on” workshops ❖ Training workshops/webinars will be smaller interactive events held to get feedback from users on each study 14

  15. DISSEMINATION VENUES ➢ Patient-led Support Groups ➢ Patient Advisory Committee Meetings ➢ Involvement of Subject Matter Experts (SME) ➢ LDO – Fresenius & DaVita chain representatives ➢ Patient Engagement Learning & Action Network (PELAN) ➢ National ESRD NCC Home Learning and Action Network (monthly calls) * To ensure that PCORI dialysis study findings are presented in a broader evidence context, we propose to develop introductory webinar or workshops that present the current studies in context of existing literature base in each of the four areas. 15

  16. DISSEMINATION GOAL REACH GOALS – o Reach 60% patients in Network 5 (~15,000 patients), and all 420 dialysis facilities o Disseminate to sister Networks 3 & 4 (all 236 facilities in New Jersey, Puerto Rico, and the US Virgin Islands and all 339 facilities in Delaware and Pennsylvania, respectively), o Introduce major findings to all 18 networks across the US 16

  17. DISSEMINATION GOAL & OUTCOMES KT GOALS – ❑ raise awareness of and interest in these studies; ❑ share knowledge about the main findings; ❑ inform behavior change related to study findings; ❑ (lead to) change in Network protocols and dialysis facility practice patterns that reflect new findings; and ❑ (lead to) future implementation of study findings throughout Networks and affiliated dialysis facilities 17

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