living donation education for kidney patients, their family and friends a nonprofit corporation...

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

Thank You.

Bryan StewartChief Executive Officer

bryan@exploretransplant.org626-390-9665

A Nonprofit Corporation