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BMT Preparative Phase: Finding The Way

Pat Groff, RN, BMTCM 10/30/17

Objectives

Discuss the patient experience prior to deciding to proceed to BMT

Describe the patient and donor medical evaluation prior to BMT

Discuss patient and caregiver education during the preparative phase

Identify significance of HLA typing and Donor selection

Before Arrival to SCCA….

Identify the SCCA/FHCRC as their transplant center, often after visiting other places (Consult)

Access the SCCA system (Intake)

Obtain Financial Clearance for the work-up (but not the transplant)

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Preparing For Transplant manual sent to help plan their time in Seattle

Allogeneic patients must have a suitable donor identified

Autologous transplant patients may have collected and stored their cells

OR arrive ready to collect

More Concerns

Identify caregivers, one or many

Non-local patients leave home, job, family, school, children, pets, aged parents

Locate temporary housing for 2-6 months within a 30 minute radius

Local patients try to juggle it all

Worry of life-threatening illness and treatment

After all this, there is no guarantee of success

Commitment to Stay • Allogeneic (donor other than self)—expect a 4 month stay

• 2-4 weeks prior to transplant, • 3 months after transplant—100 days

• Autologous (self donor)—can be up to 6 months

• Two weeks for Collect on Arrival • Can have multiple rounds of chemo prior to collection

and transplant • One month for mobilization of cells & recovery • 2 weeks assessment/conditioning • One month for post-transplant care

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Intake

• Communicates with Home MD

• Talks with Patient & Caregiver

Time commitment, housing, finances, plan of care

• Talks with Donor

Time commitment, two trips to donate, what to expect from both types of donation if plan is unknown

Gathers all pertinent medical data & records

Sends information and schedule to patient

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Choosing Treatment Plan

• Attending physician chooses Treatment via CCO Book

Based on diagnose, age, inclusion criteria, priority protocol

Leaving Home

Yakima, WA 2016 Pop. 91,067, 142 miles to…..

Coming Here

…“the Mercer Mess” Seattle 2016 Pop. 704,352

The Preparative Phase at SCCA

Two to three week period

Patient evaluated for Transplant

Learning about Caregiving

Insurance approval

Blood and Marrow Transplant Clinic

BMT clinic is open 365 days a year; Lab and Infusion room

Triage Area—short term care for acute issues, prelude to hospital admission or stabilize for home care

Daily Team Rounds

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Transplant Teams

Team Members • Attending: Physician-Scientist Transplant Specialist rotates • Provider: (APRN or PA-C) rotates Q 1-3 months • RN: consistent 4 days, one day regular sub

Allogeneic Adult Teams

Autologous Adult Teams

Pediatric Teams

Ongoing Care BMT Teams Adult TTC—Transplant Transition Clinic (too sick to be

handled completely by local MD—can share the patient)

Adult LTFU—Long Term Follow-Up—returning for assessment and treating chronic problems (years)

Pediatric CC—Continuing Care including LTFU (55 and growing yearly) returning for assessment and treating chronic problems (years)

It Takes a Village to do an Outpatient Transplant

• Patient, family and caregivers form the core

• Clinical Pharmacist—Transplant specialists cover 2-3 teams

• Team coordinators—responsible for ALL scheduling

• Dietitians—researchers specializing in Transplant

• Social Worker—assess every Transplant patient/family • Transition RN’s—insurance, discharges from hospital and to

hospice, home care needs, education for home care

• Child Life—for Peds and children of adult patients

• Chaplaincy

• Palliative Care & Pain Team

• Physical Therapy

• Shuttle Driver

• Staff at Pete Gross and SCCA House

• Volunteers

More Villagers

Arrival Visit First Time in clinic for Patient, Family, and Caregivers

• Patient Registration--register and consented for care/blood

draw

• Alliance Lab--Adult blood draw; pediatric patients clinic first (weight and EMLA)

• Outpatient Primary provider (APP) completes H & P--at least an hour)

• Team Nurse--at least an hour+ for Adults, 2 for kids & translator Orient to the system—names, numbers, people Transplant Resource Manual Consent packet (binder) Tour the building (time permitting)

• Arrival Conference the following day + Consent signing

Extensive work-up over the next several days to weeks (shuttling between SCCA, UWMC, SCH)

Multiple Blood Draws additional labs

Chest X-Ray follow-up CT and Pulmonary Consult delay

Bone Marrow Aspirate & Biopsy (if indicated)relapse or

remission? Decision time

Lumbar Puncture (disease specific)Positivetreatment delay

Oral Medicine Exam dental issues delay

Gynecologic Exam (if indicated) hormone control/fertility issues

Work-up and More

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Scans (CT, MRI, PET)more extensive disease delay

Additional Consults: o ID infectious issues-delay o Immunologysupportive services o GI + guaiac w/udelay o Fertility uncommon o Psych long delays for assessment o Pain management

Cardiac Studies r/o additional problems

Pulmonary Function Test may not meet standards

Work-up…

and yet MORE Work-up

Nutrition malnourishment may need treatment

Physical Therapy rehab

Spiritual Assessment lack of support

Social Work Inadequate Caregiver plan means delay

or denial if Competency is in question

Financial Insurance must be adequate. Transplants are not charity care eligible--family may also need assistance for daily living expenses

What’s happening with the Donor during delay?

Education for Caregivers/Patients

Medication Teach

Food Safety

Managing Care at Home

Caregiver 101—hands on with line

Review of Caregiver Manual

Preparative Phase Ends “Data Review” Conference

Attending discusses the findings of the work-up and the plan for transplant

They may not be a transplant candidate (don’t usually wait this long) The plan for treatment may change—better transplant prep Insurance issues—could delay or deny Donor confirmation

Patient signs treatment consents/assents (for their “protocol” and many others) Line placement the following day Team nurse chemotherapy teach for outpatient or inpatient conditioning

Line Placement Prior to transplant patients will have a double-lumen,

tunneled Central Venous Catheter placed

Adults will have their line placed in the SCCA Procedure Suite or at UWMC PICC or other lines (not ports) will be removed

Pediatric patients will have their lines placed at SCH

Patients and caregivers will have individual nursing

instruction about how to care for the line Not all patients will change the dressing or flush lines,

but do need shower protection teach

Caregivers Non-Patient Care Activities

Navigate the system

Communicate with family and friends

Provide transportation Manage finances

Grocery shop and prepare food

Clean apartment and do laundry daily

Manage their home life from afar

BE AN ADVOCATE for patient and themselves

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Taking Care of the Patient

Learn how to care for their loved one (or not so loved one) Can be a role reversal & stressful Independent person can become dependent Adult children and older parents Teens trying to make their way in the world

Learn how to make, track, and change appointments Study the Caregiver Manual—English not their language

only Spanish guide available*

Central Line Care Shower care Line flush Daily cleaning

There’s More to Do Manage medications both IV and PO, and their frequent

changes Give IV fluids Give antibiotics and antivirals Track pain, anti-nausea meds Change Cyclosporine/Tacrolimus/Sirolimus dosing

Track oral intake Provided multiple small meals throughout the day

Provide for daily hygiene

Daily shower, towel and bedding wash

Track symptoms Monitor temperature Call clinic or after-hours

Be cheerleader, task-master and manager of all

Allogeneic Donor

Complexity of finding the

Best Donor

Increases likelihood of successful Transplant

Improves Engraftment rates

Less Graft vs Host Disease

Provides Better Long Term Survival

The Best Donor

Finding the Best Donor

#1: Matched sibling—25% chance of matching

#2: Matched unrelated donor—depends on ethnicity

#3: Mismatched unrelated donor (9 out of 10)

#4: Cord Blood--UCB

#5: Haploidentical (related half match)

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How is a Donor Chosen? HLA Basics

• HLA = Human Leukocyte Antigen

• Located on Chromosome 6

• Protein or “marker” that the immune system uses to

identify self from non-self

• Inherit half from your mother and your father

• Chromosomes are inherited in groups

• Ethnic groups share common chromosome

markers

Inherited as a group *most of the time

Matching and Mismatching HLA sites identified as: A, B, C, DRB1, DQB1, and DP

4/6 sites = A, B, C (cord blood standard) 8 sites = A, B, C + DRB1 (majority standard) 10 sites = A, B, C, DRB1 + DQB1 (FH minimum) 12 sites = A, B, C, DRB1, DQB1 + DP (preferred at FH)

Father Mother

A1

B8

DR3

DQ2

A2

B44

DR7

DQ2

A3

B7

DR2

DQ1

A11

B60

DR4

DQ4

A1

B8

DR3

DQ2

A3

B7

DR2

DQ1

A1

B8

DR3

DQ2

A3

B7

DR2

DQ1

a b c d

aa cc a d

Segregation of HLA Haplotypes in Families

Human Leukocyte Antigens

b c

Identical Haploidentical Patient

With patient With parents

b d

Factors Affecting Donor Choice

• Age prefer younger than older - less risk, better collection

• Gender Sex matched – less GVHD UNLESS donor is Multiparous woman

• Blood Type Mismatch takes longer to be red cell independent

• Anti-HLA Crossmatch screening--not just mismatched but can

have antibodies to different HLA type

• Degree of Mismatch risk of too high for GVHD with < 9/10 match (except cords)

Donor Choice Considerations

• Size of patient/cord blood units: difference can delay or cause lack of engraftment

• Disease Status: aggressive disease may risk mismatch

• PBSC or BM: donor center ability, donor preference,

disease status—BM less Chronic GVHD

• CMV status donor/patient: prefer CMV neg donor for

CMV neg recipient

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Donor Issues

• URD located, asked, agrees but not evaluated until patient arrives for evaluation

• URD Donor fails evaluation—two or more donors are prepped

• Family Donor fails evaluation d/t unforeseen circumstances • Donor backs out—often have second URD donor ready

• Related donors-- demand money or backs out

• Family members alienated from each other

Donor Evaluation Similar Exclusions to Blood Donation

Basic Medical Evaluation—Heart, Lungs, Liver OK?

Normal CBC Lab values

No Active viral or bacterial infections

Exclusions for travel—Zika, recent Malaria exposure

Disqualifications can be “Justified”—donor approved based on need, identified problem, approved by recipient and/or recipient medical team

Donor Evaluation

Similar Exclusions to Blood Donation

Medical evaluation—more liberal for related donors

URD: >18 and < 60—age less concern for related donors

Negative for HIV, Hep B, exposure to Hep B good for a Hep B Positive patient

Pregnant?—surgery in second trimester if no other donor

NO to most autoimmune diseases

Does NOT have to match blood type

Peripheral Blood Stem Cell-PBSC or Bone Marrow-BM?

• Disease status—more aggressive—PBSC causes more AGvHD • Protocol specific—non-myeloablative require PBSC

• Degree of Mismatch—may not engraft with BM—fewer cells

• Haplotidentical—tested with BM first, now PBSC

• Risk of Graft vs Host Disease—worse Chronic GVHD PBSC

• Donor preference—terrified of needles or surgery

• Unrelated Donor Center practice—fewer centers can do BM

Unrelated Donor Selection 70% of patients will not have a related match

• Extended Family Search • Unrelated Donor Search • Cord Blood Unit Search

66-97% of all patients will find a match through the NMDP Registry

• Depends on ethnic background

• 10% matched donors unavailable for donation

• 80-99% will have at least one mis-matched UCB unit HLA Match Likelihoods for Hematopoietic Stem-Cell Grafts in the U.S. Registry N Engl J Med 2014; 371:339-348July 24, 2014DOI:

10.1056/NEJMsa1311707

Unrelated Donor Providers

• National Marrow Donor Program (NMDP) • 16 million U.S. donors and 238,000 cord blood units

• Facilitated more than 68,000 transplants since 1987

• In 2016, facilitated approximately 6200 transplants

• Over 25 million world wide donors (488 centers)

• Timeframe for finding URD match

– Approximately 3 months

– Donors only partially tissue typed (HLA-A, B)

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*10/10 match preferred

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Likelihood of Finding 8/8 HLA Match

Role of Cord Blood in

Transplants

by Patient Ethnic

Background

Role of Cord Blood in Transplants

by Patient Ethnic Background AVERAGE COST OF URD SEARCH

US Donor up to $40,000

Foreign Donor up to $55,000

Stem Cell Procurement $43-68,000

Cord Blood Procurement $25-60,000

URD PROGRAM CONFIDENTIALITY

• Transplant recipient only informed of donor’s

age, sex, vague geographic location, ABO

compatibility, CMV status

• URD Donor informed only of recipient’s

diagnosis, age (child/adult), chance of

survival with & without transplant

• One year must past before contact can be made

only if donor center allows

The Next Phase Begins

• There is no break for the patient and caregiver.

• The preparatory phase ends when conditioning begins.

• Patients may begin conditioning as early as the next day.

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Key Points

• Uncertainty permeates the Preparative Phase

• Successful Caregivers require both basic and ongoing teaching

• Donor Selection is complex

Questions?

pgroff@seattlecca.org

206-288-7731