American Foundation for

Donation & Transplantation

Living Donation: Essential Donor Team Concepts

Clearwater, Florida

May 2013

Toolkit for the

Development of a KPD Program Policy & Procedure ~ Patient Education ~ Tracking Worksheets

Marie Morgievich APN.C, CNN, CCTC

Manager, Living Donor Institute

Transplant Nurse Practitioner

But a complex program with its own

Clinical

Administrative

…and Financial Implications.

Successful Exchange Programs have

strong clinical, administrative, and

financial management support.

Kidney Exchange: It‟s not just another living donor transplant…

Will Jane Succeed?…a short story:

LD coordinator is approached by her manager and

informed that in addition to her full caseload she will be

responsible for kidney exchange:

MANAGER: “Oh Jane…we feel you are the perfect

person to work on kidney exchange – it‟s going to be so

exciting! Dr. John is going to be the surgeon – can you

speak with him about it when you have a chance?…”

JANE: “Really?”

MANAGER: “Let me know how‟s its going and if you need anything.

JANE: „gulp‟

Consider › Clinical

RN, MDs (Nephrologists & Surgeons), SW

Identifying/Educating/Consenting/Match Reviews

Peri-operative support

› Administrative Manager/Director

Policy/Procedures & supporting resources for program: esp. staff time

› Finance Needs understanding of payment system

Communicates with other centers

› OPO / LAB Cross-matches

Packaging/Shipping

Registry data support

Transplant Team & Staffing

Key to success: Total Team Support

Exchange Coordinator: importance of nurse expert

Transplant Team needs to buy into Kidney Exchange

No eye rollers allowed

One coordinator needs to be kidney exchange expert

Need dedicated physician/surgeon to support that

nurse & work closely on program

Management needs to support

½ - 1 FTE RN time and ¼ FTE assistant time

Time may increase/decrease as exchanges increase

Exchange Coordinator: importance of nurse expert

Has to believe in exchange and want to become expert

Reaches out to other experienced coordinators for advice/help/develop rapport

Point person for all communication Physician/surgeons, registry, admin & financial managers, peri-operative

group, OPO, couriers, other centers

Coordinates all aspects of the exchange Available 24/7 during exchange

Has developed relationship with donor & recipient

STAFFING Saint Barnabas Living Donor Institute

Manager & Nurse Practitioner

Living Donor RN Coordinators Donna Walton Ethel Patino

LD Recipient RN Sol Acuna

Transplant Assistant (2) Alyson Thorward Elena Nieves

Social Worker (2)

Shared with department

Financial Coordinator (1) shared with department

Living Donor Advocate

Physicians Dr. Shamkant Mulgaonkar Dr. Anup Patel

LD Recipient Coordinator caseload assignment flow

Recipient Category 1

Fast Track

Minimal Workup

10%

Recipient Category 2

Routine Workup

40%

Recipient Category 4

No possible Donors

25%

Recipient Category 3

Labor Intensive

Multiple problems

25%

Donor Category 1

Donors declared

themselves

Donor Category 2

Intent & possibilities

Seem real

Donor Category 3

-Vague but possible

or

-Out of Country

Donor identified

after pt listed Deceased

Donor

Coordinator

LD Recipient

Coordinator

Exchange Policy & Procedure

PURPOSE: To establish standards for the

evaluation, registration, and transplantation of

patients through the Living Donor Kidney

Exchange Program (LDKEP).

The goal: to increase the supply of kidneys

available for transplantation safely and

ethically.

NATCO website for attendees:

Find P&P from Barnabas Health, Cornell, UCLA,

University Wisconsin

Exchange Policy & Procedure Definitions

Living Donor Kidney Exchange Program: An exchange involving living

donors who are incompatible with their intended recipients so that

each donates to compatible recipients.

Intended Recipient: The recipient that the donor initially intended to

donate to but was found to be incompatible.

Intended Pair: The recipient/donor pair that was originally intended for

donation/transplantation.

Matched Pairs: The exchanged recipient donor pairs that are

compatible to each other.

Exchange Registry: A confidential data base that contains the names,

blood types, ages, medical profiles, and other significant information of

the recipient/donor pairs who have agreed to be listed in such a data

base awaiting compatibility matching with another incompatible

recipient/donor pair.

Exchange Policy & Procedure vital components:

Who/when/how patients are educated

Site tools used

Who is responsible for all aspects of exchange from identification pair to transplantation

Pairs satisfy the same medical, psychosocial & ethical selection criteria

Evaluation of donors

no out of state workups

Confidentiality & anonymity issues

Exchange Policy & Procedure vital components:

Registry, Match procedures, uses of Data

Shipping of living donor kidneys Risks

Logistics Simultaneous vs. bridge donation

What to do if a deceased donor becomes available for your recipient who has an exchange match …

Case Study: What would you do?

Your patient Bob Clifford – exchange wait time 3 years

55 y.o. male BG „O‟ , PRA 80%

In multi-center/state exchange txp date Mon Oct 4th

Exchange donor: 22 y.o. male in California, cxm negative

Est. CIT 12-14 hours

All final cxms pending

Deceased donor offer today Friday Sept 17th

48 y.o. local donor , cxm negative

Creatinine stable, died of asthma attack

Gestational DM 20 years ago

Case Study: What was done.

On-Call RN, Exchange RN & Transplant Physician discuss

situation

Exchange RN: “90% sure exchange will happen..but not 100%

Physician called pt and explained risks/benefits

Pt given choice

Conversation carefully documented

Pt chose to wait for exchange

Exchange Policy & Procedure vital components:

To avoid deceased donor offer from decimating an exchange:

Put pt. „on hold‟ in OTTR or your EMR within 3 weeks of exchange OR date

○ “Call Dr. ______ with any organ offers before notifying pt. “

In P&P & Education ○ Pt. will only be notified if offer is a 0 MM

Patient Education: High Risk Behavior

• Completed

• Initial RN educ/eval.

• Then SW & MD evaluations

• High risk behavior is identified?

• Hold evaluation

• Pt. scheduled for MD eval.

• Issue & Options discussed

• If donor does not want recip.

to know high risk behavior

exists- then donor is helped to

d/c evaluation.

Summary of Steps to Exchange:

Identify Incompatible Pair

Educate

Consent

Verify & maintain recipient health status

Workup Donor

Registry Listing

Advanced Matching Strategies

Match offers & acceptance

Cross-matches

Finalize recipient & donor

preadmission testing

Surgical date &

logistic agreements

Donation/Transplant

Identify & Track Pairs Early & repetitive education of alternative programs

Incompatible does not mean „goodbye‟

Educate recipients to alternative programs at first evaluation visit

Educate donors to alternative programs before cxm

○ esp. when recip sensitized

Flowchart to guide patient & decision pathway

Does everyone know what the next step is

Educate the LD Team with tools needed

give pairs basic info

System to communicate pair to exchange expert RN

Develop record keeping method

Regular meetings to review incompatible pairs

Identify & Track Pairs

Follow up with incompatible pairs immediately

Too much time – lose donor

Donor offered option of alternative program by exchange/incompatible expert RN

If donor agreeable to learn more, recip notified

If pair receives incompatibility info from confused staff member:

may lose pair and/or

pair is frightened of program/lose trust in process

Important to:

call all incompatible pairs to review incompatibly

meet with them for in-depth education session

inspire confidence/reasonable hope

Patient Educational Materials

KPD Educational Tools

UNOS Consents: 3 Forms

KPD Educational Consents

Center Specific

Education Tools: Fact Sheet

Pathways & Protocols

Education & Consenting Review your plan:

Standard education program for donors & recipients

Exchange Program Fact Sheet/Brochures

Center KPD Educational Consent

UNOS KPD Consents (if in UNOS registry)

Patient Education: What does Incompatible mean?

Blood Group ‘1st step’

Recipient Donor Blood group A A or O

Blood group B B or O

Blood group O O & maybe A2

Blood group AB A or B or AB or O

A: 20% are A2 subtype

80% are A1 subtype

Patient Education: What does Incompatible mean?

Crossmatch ‘2nd step’

Basics of HLA: Human Leukocyte Antigens

Unique protein markers on almost all cells of our body

○ Make you who you are

○ That‟s how your body knows it not your kidney even

though same blood group

When kidney connected blood goes through and like a

credit card swipe immune system records the new proteins

○ Make antibodies

○ Will be incompatible with another human who has those proteins

you have been exposed to before

PRA %: „line up 100 people with same blood type…‟

Patient Education „basics‟ Blood Groups: New Science

We have antibodies against other blood groups

O‟s have Anti-A and Anti-B antibodies

A‟s have Anti B-antibodies & B‟s have Anti-A antibodies

Measured in titers

Titer 1:2, 1:4, 1:8, 1:16, 1:32 doubles each time…

1:32 stronger then 1:16

How many times does it take to wash out that stain?

Antibodies removed by plasmapheresis & IVIG

Typically 4 pre-op and 3 post-op

A2 blood group very similar to O blood group

Almost a compatible transplant in some cases

Patient Education Kidney Exchange or Incompatible Transplant ?

Blood group incompatible transplants

It is may be now possible to overcome in the blood group

barrier

○ Especially A2 donor to O recipient

Crossmatch incompatible transplants

some Positive crossmatches can be overcome

Kidney Exchange for Compatible transplant

What is the right treatment option?

Incompatible or Exchange?

A Painful Case Study A lesson in education & timing

Lori: 29 y.o. BG „O‟ PRA 47%

1st txp from Mom at age 15

Chronic allograph nephropathy

after 14 years with 1st txp – back on HD

Friend donor BG „O‟

+ crossmatch Needs full High Risk Incompatible Treatments

Formal incompatible education delayed –

donor started workup

A Case Study: A lesson in education & timing

In meeting – I realize Exchange is more

ideal -I call recipient to discuss ○ She‟s excited

Donor calls me the next day ○ She‟s furious

Formal incompatible education

scheduled ASAP with recipient & donor

A Case Study: A lesson in education & timing

Recipient realizes extent of desensitization &

wants exchange

Donor wants to directly donate via

incompatible transplant

Friendship in turmoil

Donor changes mind on donation

Transplant cancelled

Education:

Anonymity & Confidentiality

Pairs remain anonymous prior to kidney donation Avoid non medical based opinions

Anonymity cannot be guaranteed Safety over anonymity

Unidentifiable patient data compiled for future analysis

for purposes of understanding processes and improving

exchange transplantation.

Donor Workup in Kidney Exchange:

Donor medical record scrutinized by receiving ctr.

Variations exist on donor clearance

Nephrolithiasis – kidney stones

Microscopic hematuria

Hypertension

Hepatitis B core +

Renal anatomy

○ Multiple arteries

○ Right nephrectomy

Size of Txp Program

○ Low volume center more conservative

Educate with visualization: Exchange confusing without pictures

Traditional Paired Exchange Chains

Two Pair Exchange

Three Pair Exchange

Non Directed

Altruistic Donor

D D

R R

D D D

R R R

D R

D R

D R

D R

D

Cluster

#1

Cluster

#2

R

R

R

D

D

Etc.

Cluster

#3

What is Kidney Exchange?

How does it work?

In the first pair, Recipient 1 is not compatible with Donor 1, and in the second pair, Recipient 2 is not compatible with Donor 2.

However, Donor 1 is compatible with Recipient 2 and Donor 2 is compatible with Recipient 1.

Education: Registry & Matching Info:

What is a Kidney Exchange Registry?

Which ones do we utilize

What info does it contain?

You will likely be matched with a donor/recipient

in another state

What will you be told about your match donor or

recipient

Your donor medical record – when is it sent to the

other center?

Education: Exchange and Incompatible Transplantation

Incompatible kidney exchange:

May be their best option

Unable to find a completely compatible exchange

For incompatible txp

An additional educational session & consent

Specific to treatments & risk of that incompatible txp

Has personalized protocol

Education: Surgery Schedule & Travel Information:

When possible kidney donations will occur

simultaneously or as close to the same time as possible

to ensure that no donor reneges.

There are some exceptions

Time zone changes

The donated kidneys are sent via ground or air

transportation.

Education: Risks of Shipped Kidney:

The following risks exist any time organs are

shipped for transplant:

Possible delay in function of organ caused by the extra

time it takes to transport a kidney between donor and

recipient institutions.

Accidental complete loss of organ due to transportation

accident between donor and recipient institutions.

It is the discretion of only the Transplant Surgeon and Team

to proceed with or stop surgical removal or

transplantation No recourse with UNOS

No Recourse with UNOS

Education: Transporting Kidneys What we do to keep them safe?

Specialized Courier: Arranges flights/backup flights

○ Charter flight in emergency

Transport kidney to/from airport

○ Communicates pickup/in transit/arrival ETA

Knows airport logistics –tendering kidney

Proprietary Hot Line to Airlines Control Centers & Management to:

○ pre-alert airlines, request lifeguard status and obtain real time information

GPS Kidney Tracking

Larger U.S. Registries:

Geographical location

NEPKE/New England Region

Philosophy/Methodology

APD/Ohio

NKR /New York

PDN/Mid-West

UNOS Exchange Pilot

Utilizing Multiple Exchange Registries

Centers typically work with one registry

As gain experience – add another

registry

Matching is highly correlated with the

number of pairs within a matching

system/registry

NEPKE 3 Pair Exchange 2007 kidney shipped: radical!

Donor:

Friend

Blood Group

B

Donor: Wife

Blood Group

AB

Recipient: Dialysis

Blood Group

B

Recipient: Pre HD

Blood Group

A

Donor:

Altruistic

Blood Group

A

Recipient: On Waiting List

Blood Group

AB

Boston

SBMC

Boston

SBMC

SBMC

SBMC

Donors & Recipients NDD

A

Waitlist

Recipient

AB

Exchange

Recipient

A

Exchange

Donor

AB

Exchange

Donor

B

Exchange

Recipient

B

Angela

Sung

Soon Robert Ben David

Practical Problems of Multi-Registry Participation

Data entry increased

Keeping organized Listing pair in multiple registries: how to choose?

Keeping track when activating/suspending pairs

Requirements of different registries Time consuming/Building new relationships

UNOS Pilot – new consents/additional diagnostics

Cost –some registries charge $$

Sustaining relationships: “you give the other registry all your „easy pairs‟ “

Multi-Registry Exchange:

Practical Approaches

If pair easy match

Choose registry with „local‟ txp centers

Limit data entry

Avoid matching in all registries simultaneously

List harder to match pairs in additional registries High PRA

O recipients

APD exchange April 2012

0 mm, 3rd Txp

November 2012

Compatible Pairs & Exchange

„Compatible Share‟

What compatible pairs are offered this program:

○ O donors with non-O recipients

○ No genetic advantage

Unless significant age mismatch

Why would you enter a compatible pair into the

exchange? ○ Age advantage – offer younger kidney

○ HLA advantage - improved match

○ Opportunity for Altruism to help incompatible pairs

We are still learning how to approach pairs

Very positive response

Internal matches

Why?

Non directed donor available

When have easier to match pairs

Registry „fatigue‟

Use of compatible pairs

○ Minimize risk to compatible pair

Still new concept for us

Takes time for full team buy-in

Internal matches

NDD Francis

Margherita

Cathryn

Margherita Michael

Innaccio

Kim

Innaccio Christopher

Miele

Deborah

Miele Carmen

Castro

Barbara

Mastroianni Brian

Glackin

Diane

Schmidt John

Wincz

MaryBeth

Moynihan Walter

Cockroft ( List) Juan

Castro Philip

Mastroianni

Monday Tuesday Wednesday

o

AB

B o

A A

AB

AB AB

A A

B

o o

o o

1

2

3

4

5

6

7

8

9

10

11

12

13

14

16

15

Donors Donors Donors Recipients Recipients Recipients

Barnabas Health Internal Match 2011

Internal Match December 2012

Internal matches

Response to:

More complicated national matches

Confines of registry rules

Cost of registry matches

○ $$$$ a txp – NKR & Sterling fees

Ease of internal

Minimal logistics/no shipping kidneys

No preservation/Minimal CIT

Should we do internal matches?

Facilitate more txp nationally?

Tracking Worksheets

Can be part of medical record

Barnabas Health

Chronological order of tasks

Johns Hopkins

Script of Events that need to occur

wih instructions

Johns Hopkins

LD Worksheet

specifically for

donor kidney from

outside txp ctr.

November 2012

Helpful Tool:

Center Info

Sheet

Organizational Tool:

Create folder in INBOX

For each match: examples:

○ NKR chain 66 cluster 1

Keep all INBOX emails & important SENT emails in this folder

Scan donor records/other documents

Send via secure email to recipient center

Save this „sent‟ email in your INBOX exchange folder

Can remotely send record 24/7 to recipient center via blackberry or

other web access to your work email

KPD Checklist: Johns Hopkins

Incompatible Exchange Case study

National Kidney Registry 2 to O Transcontinental Exchange Nov 2010

Leo 70 y.o. „O‟ , 0 PRA , pre-modality

Connie 67 y.o. donor, wife, „A1‟

Leo‟s A1 titer to Betty too strong 1:256

Leo‟s A2 „control‟ titers low 1:32

Registry list Leo as an „O‟ and an „A2‟

Finding an O donor will take 1-2 years

Finding A2 donor…hmm

Incompatible Exchange Case study

A2 to O Transcontinental Exchange November 2010

Match offer 2 months

Jill 59 y.o. „A2‟

UCLA to Saint Barnabas: 12-14 hours cold ischemic time

Leo‟s A2 titers against Jill 1:32

Transplant scheduled

Plasmapheresis & IVIG: Mon, Tues, Wed & Thurs pre-op

○ Titers decreased to 1:2

○ Plasmapheresis & IVIG: Fri, Sat & Mon post-op

Leo‟s transplant functioned immediately: creatinine 1.3 & stable 3 years later

Was Leo happy?

Appreciative Patient: Leo

November 2012

Questions?

Please check NATCO website next

week for copies of all P&P, Patient

Education Materials and Worksheets

Contact Information

Marie Morgievich RN, APN.C, CCTC

Manager, Living Donor Institute

Transplant Nurse Practitioner

973-322-2286

mmorgievich@barnabashealth.org