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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 l.jpg

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 l.jpg

“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 l.jpg

Question to Run on?

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


Introductions l.jpg

Introductions

  • Christine Lee

  • Leeanne Shinn


Objectives l.jpg

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 l.jpg

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 l.jpg

What is the goal of kidney transplant?

  • Freedom from dialysis

  • Better quality of life

  • Prolongs life compared to dialysis

  • To maximize survival


Slide8 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

Evaluation Process

  • Patient Education Orientation

  • Consultation with the transplant team

    • Transplant Physician

    • Surgeon

    • Transplant Nurse Coordinator

    • Social Worker

    • Dietician


Evaluation process14 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

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 l.jpg

Living Donor Transplant Options

Compatible Recipient-Donor pairs

Desensitization Protocols

Blood Type incompatible

Kidney Exchange Program

AKA Paired Exchange or Chain Transplant


Living donation l.jpg

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 l.jpg

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 l.jpg

Compatible Recip-Donor Pairs

  • Blood types are compatible

  • Cross match testing indicates low risk of early rejection

  • Donor can donate directly to recipient


Slide30 l.jpg

But…

What if the donor and the recipient

are not compatible?


Slide31 l.jpg

  • 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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    In short, there are new options

    • “Standard” living donor transplant

    • Highly-sensitized

    • Blood-type incompatible

    • Paired or triple exchange

    • Donor exchange “chains”


    Conclusion l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    “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 l.jpg

    Question to Run on?

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


    Introductions52 l.jpg

    Introductions

    • Christine Lee

    • Leeanne Shinn


    Objectives53 l.jpg

    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 l.jpg

    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 l.jpg

    What is the goal of kidney transplant?

    • Freedom from dialysis

    • Better quality of life

    • Prolongs life compared to dialysis

    • To maximize survival


    Slide56 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    Evaluation Process

    • Patient Education Orientation

    • Consultation with the transplant team

      • Transplant Physician

      • Surgeon

      • Transplant Nurse Coordinator

      • Social Worker

      • Dietician


    Evaluation process62 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    Living Donor Transplant Options

    Compatible Recipient-Donor pairs

    Desensitization Protocols

    Blood Type incompatible

    Kidney Exchange Program

    AKA Paired Exchange or Chain Transplant


    Living donation75 l.jpg

    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 l.jpg

    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 l.jpg

    Compatible Recip-Donor Pairs

    • Blood types are compatible

    • Cross match testing indicates low risk of early rejection

    • Donor can donate directly to recipient


    Slide78 l.jpg

    But…

    What if the donor and the recipient

    are not compatible?


    Slide79 l.jpg

    • 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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    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 l.jpg

    In short, there are new options

    • “Standard” living donor transplant

    • Highly-sensitized

    • Blood-type incompatible

    • Paired or triple exchange

    • Donor exchange “chains”


    Conclusion94 l.jpg

    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 l.jpg

    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 l.jpg

    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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