Patients Helping Patients Learn About Kidney Care Choices Chanell McCain, MSW, Community Outreach Coordinator May 23, 2018 1
Overview of IPRO ESRD Network 6 2
IPRO ESRD Program Mission Statement The Mission of the End Stage Renal Disease Network of the South Atlantic is to promote health care for all ESRD patients that is safe, effective, efficient, patient-centered, timely and equitable . 3
ESRD Network Role/Responsibilities • Improve quality of care for ESRD patients. • Promote patient engagement / patient experience of care. • Provide technical assistance to ESRD Patients, Dialysis facilities and Transplant Centers. • Support emergency preparedness and disaster response. • Support ESRD data systems and data collection, analysis and monitoring for improvement. 4
ESRD Networks 5
IPRO ESRD Network 6 Service Area by Facility Ownership Ownership Patients Facilities FKC 20,483 277 222 Facilities 17,890 Patients DaVita 16,105 251 5 Transplant Ctrs 222 Facilities DCI 2,390 40 17,890 Patients 151 Facilities 5 Transplant Ctrs 9,958 Patients ARA 2,140 29 151 Facilities 1 Transplant Ctrs 9,958 Patients US Renal Care 1,690 32 1 Transplant Ctrs 355 Facilities 355 Facilities DSI 985 17 21,024 Patients 21,024 Patients 4 Transplant Ctrs 4 Transplant Ctrs Wake Forest 1,660 15 Independents 3,419 67 Totals 48,872 728 6
Patient Peer Mentorship Program 7
Impact of Peer Mentoring in Patients with Chronic Kidney Disease • Often times treatment decisions are made without active patient involvement. • More attention should be given to providing patient-level information and psychosocial and practical support. • In a study of 676 patients with CKD. 35% reported very limited or no knowledge about their kidney disease or any therapeutic modality for ESRD. More than half of the respondents had no knowledge of their transplant options. Ghahramani N. (2015). Potential Impact of Peer Mentoring on Treatment Choice in Patients with Chronic Kidney Disease: A Review. 8 Archives of Iranian Medicine; 18(4): 239 – 243
Impact of Peer Mentoring in Patients with Chronic Kidney Disease • Patients who are actively engaged in their own care experience improved health outcomes. • Shared decision making (SDM) allows patients and providers to partner to make decisions that align with patients values and preferences. • SDM has been associated with improved outcomes among patients with various chronic diseases. • Mentoring by trained peer mentors has been an approach to enhance SDM and provide a patient-centered approach to educating patients. Ghahramani N. (2015). Potential Impact of Peer Mentoring on Treatment Choice in Patients with Chronic Kidney Disease: A Review. 9 Archives of Iranian Medicine; 18(4): 239 – 243
Mentors Assisting with Transplant Education • Transplant Recipients as “Navigators” • Evaluated the effect of navigators on the completion of transplant steps • Split patients into an Intervention (92) and Control (75) group. • Patients followed for up to 24 months. • Patients with “Navigators” completed more than twice as many steps as control participants Sullivan, C., Leon,, J. B., Sayre,, S. S., Marbury,, M., Ivers,, M., Pencak ,, J. A., … Sehgal, A. R. (2012). Impact of Navigators on Completion of Steps in the Kidney Transplant Process: A Randomized, Controlled Trial. Clinical Journal of the American Society of Nephrology : CJASN, 7(10), 1639 – 1645. 10
Patient Choices A newly diagnosed kidney patient faces many important questions, including: • How do I adapt my lifestyle to deal with my treatment needs? • What treatment choice is best for me? • Is transplant an option for me? • How will I balance my treatment and my career? • What impacts will my treatment have on my family? Many of these decisions can affect your quality of life and experience of care. 11
Why Do Peer Mentors Help? Your peers may get support from friends and family, but connecting with others who have similar experiences can offer added support. 12
Importance of Mentoring “Tell me and I forget, teach me and I may remember, involve me and I learn.” Benjamin Franklin “If you cannot see where you are going, ask someone who has been there before.” J. Loren Norris 13
Benefits for Peer Mentors • Building Patient • Increased patient Confidence engagement • Better health outcomes • Patient Empowerment • Feeling connected with • Increased patient facility staff education and knowledge 14
Benefits for the Facility • Improved Mental Health • Increased patient engagement and • Improved clinical empowerment measures for patients • Improved skills (following • Increased socialization a specified diet, exercise, medication adherence • Improved SDM with • Improved quality of life clinical team 15
Roles of a Peer Mentor Discussing Providing kidney care Be a positive educational choices role model information Listening to Offering concerns encouragement Sharing Relieving PEER common anxiety MENTORS experiences 16
Who is an Ideal Peer Mentor ? Has a positive outlook in dealing with kidney disease. Is achieving his/her treatment goals and Likes to connect with A PERSON FROM ANY would like to take a peers and use that leadership role in connection to engage BACKGROUND OR helping others do the and educate. same. EXPERIENCE LEVEL WHO: Is comfortable helping Is open to learning patients talk with their about available care teams and take an resources on kidney active role in their care care choices. plans. 17
Getting your Facility started with Peer Mentorship 18
Identify your unique patient and facility needs • New patients with limited understanding of and information about end- stage renal disease (ESRD) and dialysis. • Patients and/or staff have requested more patient-education sessions and/or opportunities for patients to interact with each other. • Some patients are missing treatments and/or not adhering to their treatment plans and could use guidance from someone else experiencing daily life with ESRD and dialysis. • Help our facility meet certain patient engagement requirements of Centers for Medicare & Medicaid Services (CMS) Quality Incentive Programs (QIPs). 19
Discuss the Proven Benefits Mentee increases in: Mentor increases in: Knowledge Knowledge Self-efficacy Dialysis social support Perceived social support Dialysis self-management Dialysis social support Treatment attendance 20
Limited Cost of Implementing a Program • The training program is free and provides ready-to-go materials in a comprehensive toolkit. • Initial some staff time at the onset of the program; however staff commitments decrease over time. • Financial costs include printing and copying. Optional financial costs include refreshments and program incentives • The resulting benefits to patients far outweigh the costs. Research based on similar peer mentorship programs show that mentees missed fewer treatments, and mentors reported improved self-management. 21
How is the program led? • Identify one staff member, or a small group of staff (i.e., planning committee) to serve as program leads • Preparation time for launching the program is minimal, and one staff member or a small team could implement for your facility. • Eventually, as more patients participate in the program, they can begin to take on some of the program leadership responsibilities, making the program less time-intensive for staff and even more peer-focused. • Ongoing commitment is approximately two hours a week to oversee the program includes monitoring mentors and mentees, addressing any issues that arise, keeping staff and management updated on the program progress, and collecting assessment and evaluation instruments 22
Recruitment and Program Support Materials 23
Patient Peer Mentorship Training Modules 24
This training course will help patients to: Understanding Learning how to Understand peer how with Access become a leader mentoring and communicate educational at the facility and how their role as with peers and resources on the importance a peer will make keeping kidney care of patient a difference. information choices. engagement. confidential. 25
Talking Effectively with Another Patient • What is a peer mentor and their role? • What are the benefits of peer mentorship? • What are the rules to follow in becoming a peer mentor? HIPAA, Confidentiality, Ethics, Cultural Diversity, Language Barriers • Skills to help peer mentors succeed • Communication/Leadership development 26
Mentoring to Support Choices Content • Encouraging patient to be involved in their care. • The role of peer mentors in encouraging their peers to be involved. • How patients can make a difference at their facility? • How does the program work? 27
Discussing Transplant as an Option Content • Learning the basics of Kidney Transplantation • Review and become familiar with the transplant resource toolkit • Understand how to use the toolkit when talking to other patients 28
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