living donation education for kidney patients, their family and friends a nonprofit corporation...
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Living Donation Education
For Kidney Patients,Their Family and Friends
A Nonprofit Corporation
Bryan StewartChief 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
ContemplationI 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
ActionI 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)
74%
14%
9%23%
18%29%
13%
17%
Precontempla-tionContemplationPreparationActionMaintenance
Transplant-Eligible Dialysis Patients’
Readiness to Pursue Transplant
Deceased Donation (N=293)
Living Donation (N=293)
PC C Prep A/M
Pros
Cons
Patients Pursue Living Donation When Pros Outweigh
Cons
Average
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.
1Waterman, et al. Clin J Am Soc Nephrol; Mar 21 2013.
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 numbers 37%
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
3200dialysiscenters
4000 dialysis
providers
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
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, friendsand living donors
Evaluate fortransplant
Enjoy a betterquality-of-life
Distribute patient education
How Explore Transplant Works
Train providers Educate kidney patients
Engage family, friendsand living donors
Evaluate fortransplant
Enjoy a betterquality-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 EvaluationBefore After
Typically, one total hour of living donation education:
So We Created…
One Program, Two Audiences
FOR KIDNEY PATIENTSFOR FAMILY &
FRIENDS
+ Sample Letter to Family & Friends
+ Sheet: Online Resources
+ Sheet: Kidney Failure and Dialysis
+ Sheet: Online Resources
Explore Living Donationfor 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 Donationfor 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
