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Slide 1
Spread the Word - Hear Ye! Hear Ye!
Donor Champion Program
Macey L. Henderson, JD, PhD
Johns Hopkins University Donor Advocate Symposium
Dallas, Texas
November 10, 2017
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Slide 2
What are the biggest challenges/barriers to live kidney
donation in your center/institution—from a transplant
candidate perspective; from a live donor perspective?
2
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Slide 3 Multiple Barriers to Live Kidney
Donation Exist
Identifying potential willing live donors
• Reluctance to ask somebody for a kidney1,2
• Lack of knowledge about live donation and process1,3
Ensuring a healthy live donor
• Health status of donor4
Utilizing a willing, healthy live donor
• HLA sensitization and ABO incompatibility5-7
• Recipient guilt2
• Recipient fear2
• Recipient concern for the live donor1
Factors impacting live kidney donation
1. Rodrigue JR et al. Prog Transplant. 2008;18(1):25-31. 2. Barnieh L et al. Nephrol Dial Transplant. 2011;26(2):732-738. 3. Coorey
GM et al. Am J Nurs. 2009;109(11):28-37. 4. Rodrigue JR et al. Transplantation. 2013;96(9):767-773. 5. Warren DS et al. Am J
Transplant. 2004;4(4):561-568. 6. Montgomery RJ et al. Transplantation. 2012;93(6):603-609. 7. Wiebe C et al. Am J Transplant.
2012;12(5):1157-1167.3
HLA, human leukocyte antigen.
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Slide 4 Reluctance to Ask Someone to Donate
Is a Major Barrier to Live Kidney Donation
*Eligible study participants were adults on the kidney transplant waiting list who were enrolled in a randomized, single-center
clinical trial evaluating the effectiveness of 2 educational programs to increase rates of live donor kidney transplantation; N=132.†A validated questionnaire was administered to adults active on the transplant waiting list, identified from the Southern Alberta
Renal Program database; N=145.
1. Rodrigue JR et al. Prog Transplant. 2008;18(1):25-31.
2. Barnieh L et al. Nephrol Dial Transplant. 2011;26(2):732-738.4
of kidney transplant candidates (56%) admit to having
a low willingness to discuss live donation with someone1,*
Not knowing how to ask someone for a kidney
is the most frequently reported barrier to live kidney donation2,†
of transplant candidates report feelings of guilt
either for asking for an organ or for needing the transplant2,†
OVER
1/2
?
~60%
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Slide 5 Educational Deficits Surrounding Live
Donation Among Kidney Transplant
Candidates Can Be Significant
• In a study conducted by Rodrigue et al to examine 132
candidates’ knowledge about live donation, results showed the
mean score for knowledge about live donation was 8.8 (on a
scale of 1 to 15);
for example*:
– Approximately one-third of candidates incorrectly thought that only
blood relatives of the patient could be live donors
– Nearly half (45%) of candidates incorrectly thought that a live
donor’s blood and tissue must be a perfect match with the patient
– A majority (52%) of candidates were not aware of the fact that
kidneys from live donors survive longer than kidneys from
deceased donors
*Eligible study participants were adults on the kidney transplant waiting list who were enrolled in a randomized, single-center
clinical trial evaluating the effectiveness of 2 educational programs to increase rates of live donor kidney transplantation; N=132.
Rodrigue EJ et al. Prog Transplant. 2008;18(1):25-31.5
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Slide 6 Long-Term Mortality for Live Kidney Donors
Compared to Nondonor Controls
a Long-term follow-up was 12 years.b Matched controls were identified among participants in the third National Health and Nutrition Examination Survey (NHANES III) conducted between 1988 and 1994. Of
20,024 adults in the NHANES III, following exclusion of adults with recorded comorbidities or other factors that would have deemed them ineligible at most transplant
centers (or whose information was missing), a total of 9364 NHANES III participants were without contraindications to live donation. Because the population of live
donors was larger than that of available NHANES III participants, matching was performed with replacement.c Data for live kidney donors is from the entire cohort of live kidney donors, reported to the OPTN through the United Network for Organ Sharing between April 1, 1994,
and March 31, 2009; N=80,347.
Segev DL et al. JAMA. 2010;303(10):959-966.
Although 90-day death rates were higher for live kidney donors, long-term mortality was similar or lower for live kidney donors than for matched nondonor controls throughout the 12-year follow-up
(5-year follow-up: 0.4% vs 0.9%; 12-year follow-up: 1.5% vs 2.9% [P<.001])
Kaplan-Meier estimates of cumulative mortalitya
80,347 67,966 54,998 19,259 5896 12780,347 68,230 55,282 29,657 18,960 10,436
Years
10
Mo
rtality
, %
Matched controlsLive donors
No. at Risk
8
6
4
2
00 2 4 6 8 10 12
41,67942,154
Matched controlsb
Live donors (entire cohort)c
Log-rank P<.001
6
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Slide 7 Live Kidney Donors Have an Increased Risk
of Long-term ESRD vs Nondonors
7
Shaded areas in the graph indicate 95% CI.
CI, confidence interval; ESRD, end-stage renal disease.a A healthy, screened nondonor population was derived from adult NHANES III participants by excluding those with identified contraindications to kidney
transplantation. Nondonors were individually matched with replacement to live donors using iterative expanding radius matching.
Muzaale AD et al. JAMA. 2014;311(6):579-586.
Estimated cumulative incidence of ESRD at 15 years postdonation was 30.8 per 10,000
(95% CI: 24.3-38.5) in donors and 3.9 per 10,000 (95%CI: 0.8-8.9) in healthy nondonors (P<.001)
0 3 6 9 12 15
96,217 77,587 58,979 39,231 21,573 8781
96,217 95,930 95,422 94,734 94,199 50,124
Years
0
10
20
30
40
ES
RD
per
10,0
00
Live donors
Nondonorsa
No. at Risk
P<.001
Nondonorsa
Live donors
Cumulative incidence of ESRD
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Slide 8
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Slide 9
Dorry Segev, MD, PhD Jacqueline Garonzik Wang, MD, PhD
Live Donor Champion Program
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Slide 10 Live Donor Champion Program
• Hypothesis – Separation of the advocacy
role from the patient will help to overcome
communication related barriers associated
with identifying a live donor.
• Live Donor Champion – Friend, family or
community member or stranger trained to
advocate on behalf of the transplant
candidate and spread awareness
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Slide 11 Champion Skills
• Knowledge about ESRD, kidney
transplantation,
and live donation
• Willingness to discuss these topics and the
candidate’s illness
• Effective communication skills
• Confidence to initiate the conversation
• Awareness of potential social network
• Creative ideas for spreading awareness
11Garonzik-Wang JM et al. Transplantation. 2012;93(11):1147-1150.
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Slide 12 Program Goals
• Increase education on ESRD, kidney
transplantation,
and live donation1,2
• Emphasize understanding donor risks2
• Build communication skills and confidence1,2
• Conduct anti-coercion training2
• Support creative outreach efforts2
• Create a forum for group discussion and
share success stories1,2
121. Garonzik-Wang JM et al. Transplantation. 2012;93(11):1147-1150.
2. Data on file. Expert statement. Novartis Pharmaceuticals Corp; 2014.
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Slide 13 Conceptual Framework
PATHWAY
Exploration of Social Network for Potential Donors
Effective Discussions with Potential Donors
Donor Inquiries and Evaluations
Identification of Healthy, Willing
Live Donor
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Slide 14 Conceptual Framework
PATHWAY
Exploration of Social Network for Potential Donors
Effective Discussions with Potential Donors
Donor Inquiries and Evaluations
Identification of Healthy, Willing
Live Donor
NECESSARY SKILLS
AND KNOWLEDGE
•Awareness of
potential social
network
•Creative ways to
reach social network
•Knowledge about ESRD
and transplantation
•Knowledge about live
donation process
•Willingness to discuss
illness and need for KT
•Comfort initiating
conversations
•Communication skills
•Comfort accepting
donation (donor risk)
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Slide 15 Conceptual FrameworkPATHWAY
Exploration of Social Network for Potential Donors
Effective Discussions with Potential Donors
Donor Inquiries and Evaluations
Identification of Healthy, Willing
Live Donor
INTERVENTION
COMPONENTS**
•Support for creative
outreach programs
•Share successful
patient experiences
•Share successful
champion
experiences
•Education about ESRD, KT,
risks/benefits of live kidney
donation
•Share inspiring stories of
successful experiences
•Communication skill building
•Anti-coercion training
•Speaking on someone else's
behalf
•Education about live
donor risks
•Encourage candidate
self-efficacy
** Live Donor Champion provides instrumental support and reinforcement of patient’s
skills and efforts
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Slide 16 The Six Sessions
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Slide 17 Session One
Session Title: Introduction to Kidney
Transplantation and the Live Donor Champion
Intervention
Education about kidney failure and live donation
Participant Requirements of LDC Intervention
Intervention Schedule
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Slide 18 Session One: Packet Materials
• Educational Materials
– Quiet Heroes
– Letter from the administration
– National living donor
assistance brochure
– How to become a living donor
– Advances in living donation
brochure
– Clinical evaluation of potential
live donors
– Pre-Operative instructions
– Preparing for transplantation
– Understanding matching and
tissue typing
– Kidney paired donation
– Inktp brochure
– Live donor agreement
– Informed consent
– KPD Agreement
– Mentoring Program Flyer
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Slide 19 Advances in Living Donation
Classic - Open New - Laparoscopic
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Slide 20 Business Cards
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Slide 21 Brochures
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Slide 22
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Slide 23
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Slide 24 Session Two
Session Title: Initiating a Conversation With
Potential Live Donors
Conversation Starters
Sample Conversation Material
Role-Playing
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Slide 25 Beginning the Conversation…
• Identify yourself as a donor champion
• Tell them why you are doing this
• Share information about kidney disease
• Share information about donation
• Share information about the patient
• Do not expect people to agree right away
• If people can’t donate, encourage them to help spread the word
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Slide 26 Potential Openers
• “I’d like to talk to you about something personal. Do you have
some time right now?
• “I’ve accepted the job of talking with people about kidney
donation and providing people with information so they can
decide if this is something they are able to do”
• “You know John Doe. He actually has renal failure and is on
dialysis. He has been waiting for a kidney transplant for quite
sometime”
• “I love John Doe and just want to spread awareness of his
condition and of kidney failure in general, just in case someone
might get inspired to help him or the half million others like him
in this country”
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Slide 27 If You Sense They are
Uncomfortable……
• “Asking for kidney donation is very difficult. I
apologize if this conversation is awkward.”
• “I sense that you may be a little uncomfortable
with this conversation. Why don’t you look
over these materials and then just contact me
if this is something you might be interested in.”
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Slide 28 Things You CAN’T Do….
• You cannot pressure anyone
• You cannot use force
• You can not bribe or offer anyone any
financial incentives….YOU CAN NOT PAY
SOMEONE FOR THEIR KIDNEY
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Slide 29 Session Three
Session Title: Spreading the Word
Utilization of media to spread the word on a larger
scale including email, internet and local
publications
Samples of previously successful campaigns
Tell your story
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Slide 30 Community Flyers/Local Newspapers
• Community Circular
• Local Newspapers
• City/County Newspapers
• Group e-mail lists
• Blogs/Forums
• Craigslist
• Individual WebsitesNovember 9, 2017 30
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Slide 31
Pastor Richard Michael is in need of a kidney.
Johns Hopkins has just launched a new program which is a true inspiration.
They understand that a person with kidney disease will not ask for someone
to donate their kidney but their friends and loved ones will ask.
The program is called Live Kidney Donor Champion Program.
The rate of success with a donation from a living donor is far greater than a
donation from a deceased donor.
The procedure for donating is so much more simple today with only one or
two days in the hospital. The surgery is now done laparoscopically using
small incisions.
Could you be a Quiet Hero?
Interested? Want more information?
Call: Johns Hopkins Live Donor Coordinator Office
410-614-9345
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Slide 32 Sample Language for E-mail, Letter, or
PostingOver 1300 people in Maryland are waiting for a kidney transplant.
Our ________ (brother, sister, father, etc), ______ (Name here)
has been diagnosed with _______ and will need dialysis ….unless
he receives a kidney transplant. The wait time for _______ to
receive a kidney transplant from a deceased donor could be over
5 years. We are reaching out to our community to explore
opportunities for living kidney donation. Living kidney donors are
usually healthy people between the ages of 18-60 who are free
from kidney disease, hypertension, diabetes, cancer and heart
disease. Many people who choose to donate a kidney do so
because they want to help others. If you would like more
information about how you can help others through living kidney
donation, please visit the website below.
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Slide 33 Session Four
Session Title: Success Stories: Transplant
Recipient and Live Donor Panel
Panel of previous transplant recipients and live
donors
Question and answer session
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Slide 34 Session Five
Session Title: Doctor Panel
Panel of surgeons and nephrologists
Question and answer session
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Slide 35 Session Six
Session Title: Program Recap
Review of previously covered material
Review of participant outcomes
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Slide 36 Live Donor Champion Pilot Study:
Patient and Champion Population
36
Live Donor Champion
Participants
(n=15)
Live Donor
Champions
(n=15)
Sex
Female 10 7
Male 5 8
Race
Caucasian 7 7
African American 7 7
Other 1 1
Relationship to participant
Spouse 10
Family 3
Friend 2
Garonzik-Wang JM et al. Transplantation. 2012;93(11):1147-1150.
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Slide 37 Results
01
23
Me
an
Com
fort
Leve
l
1 2 3 4 5Meeting
Family Member
Friend
Community Member
Religious
Stranger
Champion Comfort Approaching Various Groups About Live Donation
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Slide 38 Preliminary Data with LDC: Results
Outcomes LDC
Group
Control
Group
P-
Value
Donor Inquiries 25 0 <0.001
Controls – matched on age, gender, race, time on wait-list, blood type, diabetes, cause of
ESRD and education level
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Slide 39
Preliminary Data with LDC: Results
Outcomes LDC
Group
Control
Group
P-
Value
Donor Inquiries 25 0 <0.001
Live Donor Transplantation 4 0 <0.001
Live Donor Evaluation Pending 3 0
Controls – matched on age, gender, race, time on wait-list, blood type, diabetes, cause of
ESRD and education level
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Slide 40
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Slide 41
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Slide 42 THE DONOR APP
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Slide 43
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Slide 44
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Slide 45
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Slide 46
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Slide 47
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Slide 48
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Slide 49
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Slide 50 Pilot Test: Population
n = 54
Age [SD] 51.3 [11.0]
Female (%) 38.5
African American (%) 48.1
Months on waitlist
[SD] 5.8 [1.8]
Candidate Type (%)
Kidney 72.2
Liver 27.8
Prior Transplant (%) 1.9
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Slide 51
Smartphone (%)
iOS 46.6
Android OS 53.4
Time owning a smartphone
(%)
Less than a year 10.6
1-2 years 14.8
2-3 years 17.1
>3 years 57.5
Baseline Smartphone Use
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Slide 52 Baseline Social Media Use
Number of friends on Facebook %
0-50 42.3
51-100 17.4
101-150 9.6
>150 30.7
Use of social media
less than once a week 30.3
once a week 7.1
3-4 times a week 10.7
daily 51.9
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Slide 53
*We matched 3:1 on organ needed, age at listing, peak PRA (if waitlisted for kidney), highest MELD (if
waitlisted for liver), sex, race, ABO, and year of listing.
Time-to-Live Donor Inquiry
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Slide 54
Kumar K, et al. Am J Transplant. 2016 Jul 12 (B)
HR 6.61 (2.43-17.98)
• Matched 3:1 on organ needed, age at listing, peak PRA (kidney), highest MELD (liver),
sex, race, ABO, and year of listing
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Slide 55
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Slide 56
• Potential exists: 1 in 4 would donate if
they knew someone in need
• LDC and the FB App bridge the gap
between those in need and those willing to
donate
• Inexpensive, intuitive, straightforward –
and seems to work
Conclusions
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Slide 57 Dorry Segev, MD PhD, Founder and Director
Epidemiology Research Group in Organ Transplantation
Core Faculty
Andrew Cameron, MD PhDAssociate Professor of Surgery
Christine Durand, MDAssistant Professor of MedicineJackie Garonzik-Wang, MD PhD
Assistant Professor of SurgerySommer Gentry, PhD
Professor of Mathematics (USNA)Macey Henderson, JD PhD
Assistant Professor of SurgeryAllan Massie, PhD
Assistant Professor of SurgeryMara McAdams-DeMarco, PhD MSAssistant Professor of Epidemiology
Douglas Mogul, MD MPHPediatrics
Abimereki Muzaale, MD MPHInstructor of SurgeryLauren Nicholas, PhD
Assistant Professor of Health, Policy and Management
Maria Lourdes Perez, DVMResearch Coordinator
Tanjala Purnell, PhD MPHAssistant Professor of Surgery
Residents/Postdocs
Yewande Alimi, MDRashikh Choudhury, MD
Sandra DiBrito, MDChristine Haugen, MD
Courtenay Holscher, MDIsrael Olorundare, MD MPH
Analysts
Mary Grace Bowring, MPHEric Chow, MSc
Qiong (Jenny) Huang, MHS MSXun Luo, MD MPH
Alvin Thomas, MSPHHao Ying, ScM
Sheng Zhou, MBBS ScM
Medical & Graduate Students
Sunjae Bae, KMD MPHShannon CrammTanveen Ishaque
Lauren Kucirka, ScM PhDJoseph Leanza
Hasina MarediaJessica RuckLinxuan WuRoger Zou
Research Assistants
Full-Time:Jeremy Conte
Lauren DuquetteAnnie Eno
Samantha HalpernMolly Hiller
Samuel HolecheckKomal Kumar, MPHErika Lugo Borrero
Kathryn MarksGalen Mooney
Alexandra MountfordChristiana ObengSarah Rasmussen
Savina ReidEileen RoselloJacob Russell
Prakriti ShresthaFatima WarsameCorey Wickliffe
Part-Time: Saad Anjum
Nicholas CepedaHarpreet Gill
Nathaniel GreenAlexis Mooney
Erika RiveraSumukh Shetty
Jonathan TaiMadeleine Waldram
Administration & Communications
Ndola CarlestGrants Administrative Management
Nicole ZonnenbergCommunications Coordinator
Affiliated
Fawaz Al Ammary, MDNephrology
Errol Bush, MDSurgery
Josef Coresh, MD PhDEpidemiology
Morgan Grams, MD PhDNephrology
Niraj Desai, MDSurgery
Elliott Haut, MD PhDSurgery
Jayme Locke, MDSurgery (UAB)
Lucy Meoni, ScMBiostatistics
Babak Orandi, MD PhD MScSurgery (UCSF)
Aliaksei Pustavoitau, MDAnesthesiology
Daniel Scharfstein, ScDBiostatistics
Kim Steele, MD PhDSurgery
Ravi Vardhan, PhDBiostatistics
http://www.transplantepi.org/http://www.transplantmodels.com/
@ERGOT_JH
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