1. Living Donation Education For Kidney Patients, Their Family and Friends A Nonprofit Corporation Bryan Stewart Chief Executive Officer

2. AST Consensus Conference on Living Donation – June 2014, Chicago  Approx. 75 representatives from U.S. transplant centers with high rates of living donor kidney transplants (LDKT) attended  Discussed why living donation has decreased and what could be done to improve the situation

3. AST Consensus Conference on LD: 5 Priority Areas  Transplant Candidate LDKT Educational Processes  Potential Living Donor Educational Processes  Strategies to Optimize Efficiencies in LKD Evaluation  Strategies to Reduce Disparities in LKD  Strategies to Reduce Systemic Barriers to LKD

4. The Five Stages of Readiness to Take Any Behavior Precontemplation I won’t do this. I am not going to do this.

5. The Five Stages of Readiness to Take Any Behavior Precontemplation Contemplation I may do this in the next 6 months. I am thinking about it.

6. The Five Stages of Readiness to Take Any Behavior Precontemplation Contemplation Preparation I will do this in one month. I am planning how to do this.

7. The Five Stages of Readiness to Take Any Behavior Precontemplation Contemplation Preparation Action I am currently doing this

8. The Five Stages of Readiness to Take Any Behavior Precontemplation Contemplation Preparation Action Maintenance I am already doing this (for over 6 months)

9. Transplant-Eligible Dialysis Patients’ Readiness to Pursue Transplant Deceased Donation (N=293) Living Donation (N=293)

10. Patients Pursue Living Donation When Pros Outweigh Cons Average

11. Transplant Study: 2004-2010 At the beginning of evaluation, patients who:  had received better education from community nephrologists/in dialysis centers  were more knowledgeable about transplant  were more motivated to pursue DDKT and LDKT …were 2 to 3 times more likely to complete transplant evaluation successfully and receive LDKTs. 1 Waterman, et al. Clin J Am Soc Nephrol; Mar 21 2013.

12. US Dialysis Centers must:  Provide evidence of transplant education (V458, V554)  Track patients’ transplant referrals and their status on wait list (V561)  Communicate with transplant facilities regarding patient status annually and when there is a change in transplant status (V561) CMS Conditions for Coverage for Dialysis Facilities

13. Transplant Education Practices in Dialysis Centers Providers engaging in this practice: Orally recommend patients learn more about transplant themselves 72% Orally recommend being evaluated for transplant 69% Refer patients to an external transplant educational program 44% Distribute transplant center phone numbers37% Detailed discussion about advantages/risks of DDKT 21% Detailed discussion about advantages/risks of LDKT 21% N=1544

14. How Can We Help Dialysis Providers Better Educate Their Patients?

15. We Created…

16. Video and Print Education

17. Video and Print Education (Spanish)

18. Amy Waterman, PhD & Ervin Ruzics, MD 1. Life On Dialysis 2. Consider Deceased Donation 3. Consider Living Donation 4. Deciding What to Do DVD with 4 Self-Guided Videos

19. Goal: Generate Transplant & Living Donation Discussion Within Families

20. An Invitation to Learn

21.  Barriers to transplant education in dialysis centers  What transplant education approaches might help Training in Action: Peer-to-Peer Discussion

22.  Being a Kidney Recipient or Living Donor  Risks/benefits, evaluation process, out-of-pocket costs Training in Action: Transplant Center Expert Panel

23.  7 Patient Education Packets in English/Spanish  Posters, response cards, education tools for facilities Training in Action: Equipping Providers to Educate

24. Training an Army of Dialysis Providers to be Transplant Educators

25. 95 Explore Transplant Training Seminars to Date 3200 dialysis centers 4000 dialysis providers

26. Before Training (% Correct) After Training (% Correct) A living donor kidney lasts 15-20 years, on average.* 19%86% Dialysis is equivalent to the work of 10- 15% of one functioning kidney.* 23%82% Living donors have a risk of high blood pressure after donating.* 27%87% 90% of transplanted kidneys function for at least 1 year.* 41%92% Overall Knowledge*42%92% Transplant Knowledge Change *p<.001, N=1544

27. Before Training (% Agree) After Training (% Agree) I am sufficiently knowledgeable about transplant that I could answer most patients’ questions. * 46%82% I am confident in my ability as a transplant educator. 41%77% Transplant Attitude Change *p<.001; N=1544

28. How Explore Transplant Works Train providers Educate kidney patients Engage family, friends and living donors Evaluate for transplant Enjoy a better quality-of-life Distribute patient education

29. How Explore Transplant Works Train providers Educate kidney patients Engage family, friends and living donors Evaluate for transplant Enjoy a better quality-of-life Distribute patient education

30. Transplant Education Practices at Transplant Centers  Emphasis on medical facts about living donor evaluation, surgery and recovery  Limited time discussing the advantages of living donation or strategies how to find living donors 15%70%15% During EvaluationBeforeAfter  Typically, one total hour of living donation education:

31. So We Created…

32. One Program, Two Audiences FOR KIDNEY PATIENTS FOR FAMILY & FRIENDS + Sample Letter to Family & Friends + Sheet: Online Resources + Sheet: Kidney Failure and Dialysis + Sheet: Online Resources

33. Explore Living Donation for Kidney Patients

34. “Explore Living Donation” DVD DVD features real-life patients, living donors and professionals. (TRT 43 min.) Two videos: 1. Inside Living Donation 2. Finding a Living Donor

35. “Why People Donate Their Kidneys” Trifold brochure: Provides reasons why living donors decide to donate a kidney to someone in need.

36. “Living Donation: What You Need to Know” 16-page booklet offers facts about the benefits & risks of living donation and the living donation evaluation & surgery process. Included in both packets.

37. “How to Find a Living Donor” 16-page booklet features success stories, practical tips and language to help kidney patients communicate about their interest in living donation.

38. Information Sheets Sample letter to send with Family & Friends packet List of online resources

39. Explore Living Donation for Family & Friends

40. Applications to Clinical Practice  Supplement current education practices  Mail before/during evaluation  Present during evaluation  Distribute at education days  Mail annually to waitlisted patients  Use to train champions  Recommend multiple Family & Friends packets per patient

41. Living Donation America

42. Published in AJT

43. Thank You. Bryan Stewart Chief Executive Officer bryan@exploretransplant.org 626-390-9665 A Nonprofit Corporation