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

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)
17%
13%
23%
9%
14%
29%
18%
Precontemplation
Contemplation
Preparation
Action
Maintenance
74%

Average
Patients Pursue Living Donation
When Pros Outweigh Cons
Pros
Cons
PC C Prep A/M

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.

CMS Conditions for Coverage for Dialysis Facilities
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)

Transplant Education Practices in Dialysis Centers
Providers engaging in this practice:
Orally recommend patients learn more about transplant themselves
Orally recommend being evaluated for transplant
Refer patients to an external transplant educational program
Distribute transplant center phone numbers
Detailed discussion about advantages/risks of
DDKT
Detailed discussion about advantages/risks of
LDKT
N=1544
72%
69%
44%
37%
21%
21%

How Can We Help Dialysis Providers
Better Educate Their Patients?

We Created…

Video and Print Education

Video and Print Education
(Spanish)

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

Goal: Generate Transplant & Living
Donation Discussion Within Families

An Invitation to Learn

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

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

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

Training an Army of Dialysis Providers to be Transplant Educators

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

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

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

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

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

Transplant Education Practices at Transplant Centers
 Typically, one total hour of living donation education:
15%
Before
70%
During Evaluation
15%
After
 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

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

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