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

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

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

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

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.

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.

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

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

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

Patients Pursue Living Donation When Pros Outweigh Cons Average

Transplant Study: 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

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

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

How Can We Help Dialysis Providers Better Educate Their Patients?

We Created…

Video and Print Education

Video and Print Education (Spanish)

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

Goal: Generate Transplant & Living Donation Discussion Within Families

An Invitation to Learn

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

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

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

Training an Army of Dialysis Providers to be Transplant Educators

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

Before Training (% Correct) After Training (% Correct) A living donor kidney lasts years, on average.* 19%86% Dialysis is equivalent to the work of % 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

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

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

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

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:

So We Created…

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

Explore Living Donation for Kidney Patients

“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

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

“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.

“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.

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

Explore Living Donation for Family & Friends

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

Living Donation America

Published in AJT

Thank You. Bryan Stewart Chief Executive Officer A Nonprofit Corporation