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6/8/2017
1
BMT Preparative Phase: Finding The Way
Pat Groff, RN, BMTCM 6/22/17
Objectives
Highlight key steps in the Preparative Phase
Describe the importance of caregivers in the Transplant process
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)
Preparing For Transplant manual sent to help plan their time in Seattle
Identify caregivers, one or many
Locate temporary housing for 2-4 months within a 30 minute radius
More Concerns
Autologous transplant patients may have collected and stored their cells OR arrive ready to collect
Allogeneic patients must have a suitable donor identified
Non-local patients leave home, job, family, school, children, pets, aged parents
Local patients try to juggle it all
Worry of life-threatening illness and treatment
After all this, there are 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
Community Oncology nurse
SCCA General Oncology nurse
Insurance Case Manager
Intake
SCCA Transition Nurse
FHCRC Research Nurse
Preparative Phase At Home
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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
SCCA Alliance Lab LPN
SCCA Team nurse
SCCA Procedure Room
nurse
SCCA Apheresis nurse
SCCA/UWMC Rad-Onc nurse
SCCA Clinic
Provide the first
contact in the clinic,
teach, coordinate
care, provide care in
procedure, infusion
and therapy suites
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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
Active 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 -- 15-18 patients each team
• 6 teams caring for recipients and donors
Autologous Teams – 15-20 pts. per team • 4 adult teams
Pediatric Team • Active team—35-45 patients and growing
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
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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
Work-up and More 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?
Nursing Orientation/Teach Visit Evaluation of transplant patient/caregiver
educational needs
Instruct and start prophylaxis medications
Review Transplant Resource Manual
Provide central venous catheter scrub instructions & show mannequin/doll
Provide opportunity to answer questions from the Arrival Conference
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Classes for Caregivers
Food Safety
Managing Care at Home
Caregiver 101—hands on Hickman line care
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
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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
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
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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)
ALLOGENEIC DONOR SELECTION
70% of patients will not have a related match • Extended Family Search
• Unrelated Donor Search
• Cord Blood Unit Search
50% of all patients will find a match through
the NMDP Registry
• Depends on ethnic background
• 10% matched donors unavailable for donation
• About 95% of those who find a match will be UCB
*10/10 match preferred
UNRELATED DONOR SEARCH
• National Marrow Donor Program (NMDP) • 13.5 million U.S. donors and 225,000 cord blood units
• Facilitated more than 68,000 transplants since 1987
• In 2014, facilitated approximately 6300 transplants
• Over 25 million world wide donors
• Timeframe for finding URD match
– Approximately 3 months
– Donors only partially tissue typed (HLA-A, B)
AVERAGE COST OF URD SEARCH
US Donor up to $40,000
Foreign Donor up to $55,000
Stem Cells Procurement $43-68,000
Cord Blood Procurement $25-60,000
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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
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
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
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)
Matches by the Numbers
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HLA Family Worksheet
Name Relationship HLA-A HLA-B HLA-DRB1
John Self
(patient)
A2, (A2) B51, B60 DR13, DR14
Mary Sibling A2, A24 B51, B39 DR14, DR8
Ed Sibling A2, A24 B39, B60 DR15, DR8
Joe Sibling A2 B60 DR15, DR13
Chris* Sibling A2 B51, B60 DR13, DR14
Paul* Sibling A2 B51, B60 DR13, DR14
*Choice depends on availability, comorbidities. If male and female match, will choose male first.
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 < 9/10 match and GVHD
Donor Choice
• Size of patient/cord blood units difference can delay or 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
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 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
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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
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.
Questions?
pgroff@seattlecca.org
206-288-7731
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