journey to transplant: how patients facing organ failure get on the transplant waiting list

Journey to Transplant:Journey to Transplant:How Patients Facing Organ How Patients Facing Organ

Failure Get on the Transplant Failure Get on the Transplant Waiting ListWaiting List

Christine Lee, RN, BSN, CCTC

Leeanne Shinn, RN

UCLA Kidney and Pancreas Transplant Program

““How To Be”How To Be”

Being in Action!

The Answers Are In the Room

“Report out” on Questions to Run-on: – Scribe – Spokesperson

All Teach / All Learn

Question to Run on?Question to Run on?

What can you do to educate your patients or community on the Journey to Transplant?

IntroductionsIntroductions

Christine Lee

Leeanne Shinn

ObjectivesObjectives

Understand the referral, evaluation and listing process for organ transplant – kidney transplantation

Provide overview of the national wait list and review various deceased donor options

Discuss living donor transplant options

Treatment OptionsTreatment Options

– Heart/Lung/Liver failure: Organ transplant Heart - LVAD as bridge to transplant

– End stage renal disease (ESRD): Dialysis Kidney Transplant

– Type 1 diabetes: Insulin therapy Pancreas alone (PA), kidney/pancreas

transplant (SPK)

What is the goal of kidney transplant?What is the goal of kidney transplant?

Freedom from dialysis Better quality of lifeProlongs life compared to dialysisTo maximize survival

Fig. 1. Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patients

Mazzuchi, N. et al. Nephrol. Dial. Transplant. 1999 14:2849-2854; doi:10.1093/ndt/14.12.2849

Kidney TransplantKidney Transplant

Cons:– Not for everyone: compliance, health– Long wait time due to organ shortage– Require strict adherence to daily

medications– Transplant medications for life

Referral ProcessReferral Process

For kidney transplant - Referral made by physician, dialysis social worker, insurance case manager or patient

Find a local transplant program Necessary documents:

– H&P, Social worker note, most recent lab, cardiac tests, imaging studies, ABO

– Medicare Entitlement Form (2728 form)

Schedule an appointment with the transplant team for evaluation

Selecting a Transplant ProgramSelecting a Transplant Program The experience of the transplant team Insurance coverage Geographical proximity to the program

– The travel time to the transplant center is important when patient is waiting for an organ and is a key factor considered in organ distribution.

The quality and availability of pre- and post-transplant services.

Availability of friends and family for assistance

Evaluation ProcessEvaluation Process

Patient Education Orientation Consultation with the transplant team

– Transplant Physician– Surgeon– Transplant Nurse Coordinator– Social Worker– Dietician


Other consultation as needed– Cardiology, Hepatology, Infectious Disease, Psychiatry,

Hematology, Dermatology, Oncology, etc Pending tests

– Lab: Blood type x2, HLA, PRA, serology– Cardiac tests: EKG, Stress test, Echocardiogram, Coronary

angiogram– Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI– Screening tests: PSA, pap smear, mammogram,

colonoscopy

Patient Selection CriteriaPatient Selection Criteria Must be accepted as a candidate before listing Selection Criteria

– In general, all end-stage renal failure patients who, after having been informed of the risks of the transplant surgery and the inevitable chronic immunosuppressive therapy, still express a clear desire for this modality of treatment, will be accepted as candidates for evaluation.

Exclusion criteria– Presence of disseminated or recent malignancy– Active infection– Severe coronary artery disease and/or peripheral vascular disease– Underlying disease states such as multiple myeloma, scleroderma, oxalosis, sickle-

cell anemia– Serious psychosocial problems– Squamous cell skin cancer– Renal cell carcinomas– BMI > 35– Partial insurance coverage– Patients that are wheelchair bound, require oxygen, or are severely disabled– Patients who are unwilling to accept blood transfusions under any circumstances while

taking anticoagulations

Patient Selection CriteriaPatient Selection Criteria

After completion of the workup, Selection Committee will review the case

The Committee is made up of Transplant Nephrologists, Surgeons, Nurse Coordinators, Social workers, dietician, pharmacist and other consultants

Once decision is made, the patient and physician will be notified in writing

Listing ProcessListing Process

Medical clearance by the Selection Committee

Financial clearance Eligibility for wait time accrual

– On maintenance dialysis– GFR 20 or less

Notification within 10 days to the patient, physician and dialysis social worker

UNOS Wait ListUNOS Wait List

National Wait List - United Network for Organ Sharing (UNOS)

107,337 patients are waiting for all organs

84,000+ patients are waiting for kidney transplant

U.S. Waiting List Candidates by OrgansU.S. Waiting List Candidates by Organs

Based on current OPTN data as reported on May 7, 2010. Data subject to change based on future data submission or correction.


About 16,000 transplants per year– 6,000 living donor transplant (doubled over

15 yrs)– 10,000 deceased donor

California Wait List– 16,250+ patients are waiting for kidney– Average wait time: 7 to 10 years

Allocation StrategiesAllocation Strategies

Dialysis Wait Time: – wait time starts as initial dialysis start date

Dual organ transplant – kidney/pancreas– Liver/Kidney– Heart/Kidney

Multiple listing

Is there a way to reduce the Is there a way to reduce the waiting time? waiting time?

Expanded Criteria Donor (ECD) kidney– A kidney from a donor age over 60 years or over age 50 with a history of HTN, cause of death due to

CVA, or a terminal creatinine greater than 1.5 mg/d

Hepatitis C list– Only for the patients with hepatitis C

Donation after cardiac death (DCD)– A kidney from a donor who was declared dead based on a lack of a heartbeat. – These kidneys are less likely to function immediately & may have a greater risk of rejection

The Centers for Disease Control (CDC) increased risk – Higher risk for the transmission of viral disease including HIV & Hepatitis

Donation Point

Living Donor Transplant

Living Donor Transplant Living Donor Transplant OptionsOptions

Compatible Recipient-Donor pairs Desensitization Protocols Blood Type incompatible Kidney Exchange Program

– AKA Paired Exchange or Chain Transplant

ESRD Patient

Living Donor

No Yes

Deceased DonorWaiting List

Standard CriteriaWaiting List

Transplant

HCV+

HCV + List

Transplant

>50

ECD List

Transplant

Blood TypeCompatible Incompatible

Crossmatch-

DonorWorkup

Transplant

+

Investigate Other Donors

+

Crossmatch+ -

Transplant

-

DesensitizationProtocol

Transplant

Evaluate Anti-A/B Titers

Low

Crossmatch

ABOiProtocol

Transplant

High

Paired ExchangeProgram

Crossmatch

Transplant

Low titer but donor ptinterested in paired

exchange

Single dose

Transplant

Multi-dose

MCS

Algorithm of UCLA Renal Failure Patients Awaiting Transplantation

Patient Preference

(Patient remains on deceased donor list)

AltruisticDonor

G. Lipshutz 3/2008

Living DonationLiving Donation

Related vs. UnrelatedRequirements

– Age 18 ~ 65– Health Concerns (diabetes, high

blood pressure, cancer, hepatitis, weight issue)

– Lifestyle: substance abuse

Blood type compatibility chartBlood type compatibility chart

Candidate’s Blood Type

O

A

B

AB

Donor’s Blood Type

O

A or O

B or O

A, B, AB or O

Compatible Recip-Donor PairsCompatible Recip-Donor Pairs

Blood types are compatibleCross match testing indicates low risk of

early rejectionDonor can donate directly to recipient

But…But…

What if the donor and the recipient

are not compatible?

•At least one third of patients with a willing living donor are excluded due to incompatible blood type and positive cross match

•35% of any two people will be blood type incompatible•30 % of patients needing a kidney transplant will be sensitized because of previous transplants, pregnancies or transfusions

DesensitizationDesensitization

Advantages include increasing the donor pool and the friend or love one can donate to the intended recipient

Disadvantages include cost which averages approximately $30,000

Decreased patient survival (5yr 87% vs. 94%) AJT 2004

Unpredictable rates of accelerated rejection Decreased graft survival (1yr. 84% vs. 96% ) AJT

2004 Decreased 5 yr. graft survival (69% vs. 81%) AJT

2009

Blood Type IncompatibleBlood Type Incompatible

Living donor has different blood type No other donor available Requires analysis of antibody levels Insurance authorization for treatment Pre-operative treatment protocol over several

weeks to achieve safe window for transplantation with your living donor

ABOiABOi

Molecules present or absent on blood cells determine blood type

When blood types are mixed, these molecules act as antigens that trigger ABO incompatibility reaction

Preconditioning is done to cleanse the blood of these circulating antibodies and depends on blood type and amount of antibodies present

ABOi TherapiesABOi Therapies

Plasmapheresis- remove antibodiesImmunoglobulin-decrease antibodies

which are destructive to the graftSplenectomyAnti-CD20 Antibody (rituximab)-

depletes CD20 protein which is found on the wall of most B cells

Paired DonationPaired Donation

Initially slow to take off because 1984 NOTA “unlawful to acquire organ in exchange for valuable consideration”

2007 Senate bill “valuable consideration does not apply to paired donation”

Donor ExchangeDonor Exchange

Recipient/donor pair have incompatible blood types

Other donor/recipient pair have incompatible blood types

Donors evaluated/accepted for donation Donor/recipient pairs “exchange” donor

kidneys Exchange is anonymous until after surgery

Paired donor exchangePaired donor exchange

Pair #1

Recip blood type = A

Donor blood type = B

B to A is not compatible

Pair #2

Recip blood type = B

Donor blood type = A

A to B is not compatible

Paired Donor ExchangePaired Donor Exchange

Pair #1 Pair #2

Recipient = A Recipient = B

Donor = B Donor = A

Blood-type incompatible Recip/Donor pairs

exchange blood-type compatible kidneys

Down Side of Paired DonationDown Side of Paired Donation

If one living donor backs out then the other pair is disadvantaged

Requires simultaneous O.R. start

Donor Exchange “Chains”Donor Exchange “Chains”

Participation of multiple pairs of donors and recipients

Usually started by a non-directed or “altruistic”

One donor is “left over” to begin a new section of the chain

Donor ChainsDonor Chains

Living donor can donate local to where they live

Kidneys are shipped using established OPO protocols on commercial flights

Do not need simultaneous O.R. start times


Very time intensive, high work load for low yield

Only about 120 done to datePotential for 1,000 -2,000 additional

kidney transplants per yearIf there is a delay in donation, donor

may back out

In short, there are new optionsIn short, there are new options

“Standard” living donor transplantHighly-sensitizedBlood-type incompatiblePaired or triple exchangeDonor exchange “chains”

ConclusionConclusion

Timely referral to transplant center Communication and collaboration between

the referring physician, patient, dialysis unit and the transplant team are the key

Advances in living donation are providing patients with more opportunities for transplant



3 minutes to work at your tables and report back, Go!

Transition to Transition to Breakout Session #2Breakout Session #2

Next Breakout Session starts at 11:30

Please see your agenda for specific room locations

Enjoy the Learning!

Journey to Transplant:Journey to Transplant:How Patients Facing Organ How Patients Facing Organ

Failure Get on the Transplant Failure Get on the Transplant Waiting ListWaiting List

Christine Lee, RN, BSN, CCTC

Leeanne Shinn, RN

UCLA Kidney and Pancreas Transplant Program

““How To Be”How To Be”

Being in Action!

The Answers Are In the Room

“Report out” on Questions to Run-on: – Scribe – Spokesperson

All Teach / All Learn

IntroductionsIntroductions

Christine Lee

Leeanne Shinn

ObjectivesObjectives

Understand the referral, evaluation and listing process for organ transplant – kidney transplantation

Provide overview of the national wait list and review various deceased donor options

Discuss living donor transplant options

Treatment OptionsTreatment Options

– Heart/Lung/Liver failure: Organ transplant Heart - LVAD as bridge to transplant

– End stage renal disease (ESRD): Dialysis Kidney Transplant

– Type 1 diabetes: Insulin therapy Pancreas alone (PA), kidney/pancreas

transplant (SPK)

What is the goal of kidney transplant?What is the goal of kidney transplant?

Freedom from dialysis Better quality of lifeProlongs life compared to dialysisTo maximize survival

Fig. 1. Overall unadjusted actuarial survival probabilities for transplanted recipients and haemodialysis patients

Mazzuchi, N. et al. Nephrol. Dial. Transplant. 1999 14:2849-2854; doi:10.1093/ndt/14.12.2849

Kidney TransplantKidney Transplant

Cons:– Not for everyone: compliance, health– Long wait time due to organ shortage– Require strict adherence to daily

medications– Transplant medications for life

Referral ProcessReferral Process

For kidney transplant - Referral made by physician, dialysis social worker, insurance case manager or patient

Find a local transplant program Necessary documents:

– H&P, Social worker note, most recent lab, cardiac tests, imaging studies, ABO

– Medicare Entitlement Form (2728 form)

Schedule an appointment with the transplant team for evaluation

Selecting a Transplant ProgramSelecting a Transplant Program The experience of the transplant team Insurance coverage Geographical proximity to the program

– The travel time to the transplant center is important when patient is waiting for an organ and is a key factor considered in organ distribution.

The quality and availability of pre- and post-transplant services.

Availability of friends and family for assistance


Patient Education Orientation Consultation with the transplant team

– Transplant Physician– Surgeon– Transplant Nurse Coordinator– Social Worker– Dietician


Other consultation as needed– Cardiology, Hepatology, Infectious Disease, Psychiatry,

Hematology, Dermatology, Oncology, etc Pending tests

– Lab: Blood type x2, HLA, PRA, serology– Cardiac tests: EKG, Stress test, Echocardiogram, Coronary

angiogram– Radiology: CXR, renal/abdominal ultrasound, CT scan, MRI– Screening tests: PSA, pap smear, mammogram,

colonoscopy

Patient Selection CriteriaPatient Selection Criteria Must be accepted as a candidate before listing Selection Criteria

– In general, all end-stage renal failure patients who, after having been informed of the risks of the transplant surgery and the inevitable chronic immunosuppressive therapy, still express a clear desire for this modality of treatment, will be accepted as candidates for evaluation.

Exclusion criteria– Presence of disseminated or recent malignancy– Active infection– Severe coronary artery disease and/or peripheral vascular disease– Underlying disease states such as multiple myeloma, scleroderma, oxalosis, sickle-

cell anemia– Serious psychosocial problems– Squamous cell skin cancer– Renal cell carcinomas– BMI > 35– Partial insurance coverage– Patients that are wheelchair bound, require oxygen, or are severely disabled– Patients who are unwilling to accept blood transfusions under any circumstances while

taking anticoagulations

Patient Selection CriteriaPatient Selection Criteria

After completion of the workup, Selection Committee will review the case

The Committee is made up of Transplant Nephrologists, Surgeons, Nurse Coordinators, Social workers, dietician, pharmacist and other consultants

Once decision is made, the patient and physician will be notified in writing

Listing ProcessListing Process

Medical clearance by the Selection Committee

Financial clearance Eligibility for wait time accrual

– On maintenance dialysis– GFR 20 or less

Notification within 10 days to the patient, physician and dialysis social worker


National Wait List - United Network for Organ Sharing (UNOS)

107,337 patients are waiting for all organs

84,000+ patients are waiting for kidney transplant