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Journey to Transplant: How Patients Facing Organ Failure Get on the Transplant Waiting List. Christine Lee, RN, BSN, CCTC Leeanne Shinn, RN UCLA Kidney and Pancreas Transplant Program. “How To Be”. Being in Action! The Answers Are In the Room “Report out” on Questions to Run-on: Scribe

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

Journey to Transplant:How Patients Facing Organ Failure Get on the Transplant Waiting 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?
introductions
Introductions
  • Christine Lee
  • Leeanne Shinn
objectives
Objectives
  • 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 options
Treatment 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 life
  • Prolongs life compared to dialysis
  • To maximize survival
slide8
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 transplant
Kidney 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 process
Referral 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 program
Selecting 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 process
Evaluation Process
  • Patient Education Orientation
  • Consultation with the transplant team
    • Transplant Physician
    • Surgeon
    • Transplant Nurse Coordinator
    • Social Worker
    • Dietician
evaluation process14
Evaluation Process
  • 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 criteria
Patient 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 criteria16
Patient 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 process
Listing 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 list
UNOS 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 organs
U.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.
unos wait list20
UNOS Wait List
  • 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 strategies
Allocation 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 waiting time
Is there a way to reduce the 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 options

Living Donor Transplant Options

Compatible Recipient-Donor pairs

Desensitization Protocols

Blood Type incompatible

Kidney Exchange Program

AKA Paired Exchange or Chain Transplant

living donation
Living Donation
  • Related vs. Unrelated
  • Requirements
    • Age 18 ~ 65
    • Health Concerns (diabetes, high blood pressure, cancer, hepatitis, weight issue)
    • Lifestyle: substance abuse
blood type compatibility chart
Blood 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 pairs
Compatible Recip-Donor Pairs
  • Blood types are compatible
  • Cross match testing indicates low risk of early rejection
  • Donor can donate directly to recipient
slide30
But…

What if the donor and the recipient

are not compatible?

slide31

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
desensitization
Desensitization
  • 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 incompatible
Blood 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
slide34
ABOi
  • 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 therapies
ABOi Therapies
  • Plasmapheresis- remove antibodies
  • Immunoglobulin-decrease antibodies which are destructive to the graft
  • Splenectomy
  • Anti-CD20 Antibody (rituximab)- depletes CD20 protein which is found on the wall of most B cells
paired donation
Paired 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 exchange
Donor 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 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 exchange
paired donor exchange39
Paired 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 donation
Down 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 chains
Donor 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
donor chains44
Donor Chains
  • Very time intensive, high work load for low yield
  • Only about 120 done to date
  • Potential for 1,000 -2,000 additional kidney transplants per year
  • If there is a delay in donation, donor may back out
in short there are new options
In short, there are new options
  • “Standard” living donor transplant
  • Highly-sensitized
  • Blood-type incompatible
  • Paired or triple exchange
  • Donor exchange “chains”
conclusion
Conclusion
  • 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
question to run on47
Question to Run on?
  • What can you do to educate your patients or community on the Journey to Transplant?
  • 3 minutes to work at your tables and report back, Go!
transition to breakout session 2
Transition to Breakout Session #2

Next Breakout Session starts at 11:30

Please see your agenda for specific room locations

Enjoy the Learning!

journey to transplant how patients facing organ failure get on the transplant waiting list49

Journey to Transplant:How Patients Facing Organ Failure Get on the Transplant Waiting List

Christine Lee, RN, BSN, CCTC

Leeanne Shinn, RN

UCLA Kidney and Pancreas Transplant Program

how to be50
“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 on51
Question to Run on?
  • What can you do to educate your patients or community on the Journey to Transplant?
introductions52
Introductions
  • Christine Lee
  • Leeanne Shinn
objectives53
Objectives
  • 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 options54
Treatment 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 transplant55
What is the goal of kidney transplant?
  • Freedom from dialysis
  • Better quality of life
  • Prolongs life compared to dialysis
  • To maximize survival
slide56
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 transplant57
Kidney 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 process58
Referral 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 program59
Selecting 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 process60
Evaluation Process
  • Patient Education Orientation
  • Consultation with the transplant team
    • Transplant Physician
    • Surgeon
    • Transplant Nurse Coordinator
    • Social Worker
    • Dietician
evaluation process62
Evaluation Process
  • 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 criteria63
Patient 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 criteria64
Patient 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 process65
Listing 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 list66
UNOS 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 organs67
U.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.
unos wait list68
UNOS Wait List
  • 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 strategies71
Allocation 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 waiting time72
Is there a way to reduce the 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 options73

Living Donor Transplant Options

Compatible Recipient-Donor pairs

Desensitization Protocols

Blood Type incompatible

Kidney Exchange Program

AKA Paired Exchange or Chain Transplant

living donation75
Living Donation
  • Related vs. Unrelated
  • Requirements
    • Age 18 ~ 65
    • Health Concerns (diabetes, high blood pressure, cancer, hepatitis, weight issue)
    • Lifestyle: substance abuse
blood type compatibility chart76
Blood 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 pairs77
Compatible Recip-Donor Pairs
  • Blood types are compatible
  • Cross match testing indicates low risk of early rejection
  • Donor can donate directly to recipient
slide78
But…

What if the donor and the recipient

are not compatible?

slide79

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
desensitization80
Desensitization
  • 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 incompatible81
Blood 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
slide82
ABOi
  • 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 therapies83
ABOi Therapies
  • Plasmapheresis- remove antibodies
  • Immunoglobulin-decrease antibodies which are destructive to the graft
  • Splenectomy
  • Anti-CD20 Antibody (rituximab)- depletes CD20 protein which is found on the wall of most B cells
paired donation84
Paired 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 exchange85
Donor 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 exchange86
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 exchange
paired donor exchange87
Paired 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 donation88
Down Side of Paired Donation
  • If one living donor backs out then the other pair is disadvantaged
  • Requires simultaneous O.R. start
donor exchange chains89
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 chains90
Donor 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
donor chains92
Donor Chains
  • Very time intensive, high work load for low yield
  • Only about 120 done to date
  • Potential for 1,000 -2,000 additional kidney transplants per year
  • If there is a delay in donation, donor may back out
in short there are new options93
In short, there are new options
  • “Standard” living donor transplant
  • Highly-sensitized
  • Blood-type incompatible
  • Paired or triple exchange
  • Donor exchange “chains”
conclusion94
Conclusion
  • 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
question to run on95
Question to Run on?
  • What can you do to educate your patients or community on the Journey to Transplant?
  • 3 minutes to work at your tables and report back, Go!
transition to lunch
Transition to Lunch

Lunch is from 12:30 – 1:30

In the Crystal Ballroom, on the main level of the hotel

Open seating

Bon Appétit!

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