Nurses and Genetic Counseling and Testing in Nigeria
Transcript of Nurses and Genetic Counseling and Testing in Nigeria
Prisca Olabisi Adejumo RN, PhD.
Nurses and Genetic
Counseling and Testing in
Nigeria
University of Ibadan/University College Hospital, Ibadan
Disclosure
• None
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Outline
• Background• Introduction• Why Nurses?• Lived experience• Towards achieving the
goal• Gen_CT project • What is being done?• A typical session• Genetic Testing
• Capacity Building : UI, UCH, LASUTH, LUTH and FMC video clip.
• The foreseeable future • Conclusion • Acknowledgements • Picture speaks• GEN_CT team members• Appreciation• References
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MY COUNTRY (UCH) FACILITY (UI) 4
http://www.actgenomics.com/en/service/actrisk
Introduction• Genetic disorders’ significant contribution to the world's
burden
• Advances in human genetics and genomic research- prevention,- diagnosis and- treatment
• Genetic Counseling and Testing pathway to personalizedcare in the continuum of human health and illness.
Introduction Cont.• Lack of healthcare professionals in Medical Genetics,
Genomic Medicine, Genetic Nursing etc.
• Compounding problem with
- Lack of genomic research with
- Gap in health profession’s graduate curricular.
• Hence, the need for innovative approaches to fill the gap as the Nurse is expected to be skillful in providing genomics and genetic services to meet growing patient needs.
Genetics/Genomics: Why
Nurses?
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The Guide Essential Nursing Competencies and Curricula lines for Genetics and Genomics states:
To care forpersons/families/communitiesand/or populations throughout thelife span, registered nurses will needto demonstrate proficiency withincorporating genetic and genomicinformation into their practice
Nurses in the healthcare
servicesNurses represent thelargest contingent ofhealth care providersin the world and playa pivotal role indelivering qualityhealth care services
Scott-Emuakpor (2010)
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Nigerian Nurseso Training
o Experience
o Specialty
o Number
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They play important
role as patient
advocate and
compassionate
support system
and
…
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Counselling is part
of the nursing
fabric
Why Nurses cont.?
Lived experience and personal
observation• No formal accredited oncology nursing education
• Lack of of an integrated cancer genetic counseling services
• Late cancer presentation
• Personal experience : Best Nurse Award in a medical unit.Yet, never heard of pedigree drawing or offered cancergenetic counseling to any patient or relative.
• Journey toward a 2nd PhD and the ‘woo’ of my everdynamic mentor.
Towards achieving the goal
• 2013 NIH D43 Training Grant
• GC Shadowing
• 2014 NIH re-entry grant.
• Translational Research
• Gen _CT project• Involvement of HOD Clinical,
Education and Public health)• Debriefing: CMD & CMAC.• Team members :
-Nurse: D43 and re-entry grant
• CoH 2020 cohort 12
Gen_CT Project• It is a Nurse-led multi disciplinary project comprising
professional nurses, a pharmacist, public health professionals,epidemiologists as well as physicians from Radiation oncology,Radiology and Surgical Oncology all with exposure to diversecancer genetics training.
• Evolved from the 2014 study with the aim of building nurses’capacity and expanded to other oncology care providers to:
- provide basic cancer genetics information for patient/relative;- facilitate genetic testing;- offer genetic counseling pre and post genetic testing and
• Enhance the provision of personalized cancer care.The team has reached out to diverse ethnic groups in the countryand has a plan to reach beyond Nigeria.
What is
being done
…
Junglen, Pestik, Clawson, Fisher,
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What Nurses do (1)o Pedigrees are valuable tools in
determining the care neededfor each patient and thepatient’s family members
o Nurses perform verbal autopsyin family history taking forpedigree, particularly in ourcountry where many die after a‘brief illness’ and causes ofdeaths go undocumented
o Obtain consent from patientsfor genetic testing 15
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What Nurses do (2)
• Take a comprehensive family history• Document the family history information from the
consultant/proband, focusing on details and Cancer History
• Draw a 3-4 generation pedigree from the family history using standard pedigree nomenclature and symbols with a pen/pencil and paper
• Identify questionable or incomplete information that will need further verification to assess cancer risk in the family
• Identify sporadic, familial, and hereditary cancer patterns using the adapted genetic counseling album
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Genetic Album in Yoruba. Akojopo okun ajogunba
(ChromosomesOkun ajogunba ati Jejere
Eyi ti o n …
Eyi ti o n jeyo ninu …
Aisan ajogunba…
A
C
G
T
C
G
A
T
C
GAkojǫpǫ awonokun ajogunba
(Chromosome)
Okun ajogunba(Gene) Atokun okun
ajogunba
(DNA)
A
C
G
T
C
G
A
T
C
G
Akosileijogunba ninu
eje
(Genetic
Code)
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What Nurses do• Identify the need for testing with appropriate explanation
on methods, benefits and limitations of the available Color genomic testing
• Collect sample and enter into platform for data capturing • Store for shipment in normal room temperature• Arrange for shipment and send samples for testing • Obtain results and engage in post test counseling• Disclose results recognizing approaches to variant
interpretation and reporting • Review the NCCN guidelines for high-risk cancer screening
and management• Apply ethical principles to counseling challenges
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Genetic Counseling Educational Materials
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Eligibility and Activities
Requires knowledge of:
• Basic Genetics Knowledge and interest• Oncology background in patient care• Patient and family counseling skills competencies
Activities• Cancer risk counseling • Risk assessment• Genetic testing • Capacity building
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What approach?22
•Combination approaches within a
medical practice and a Primary
Health Care setting from where we
receive referral as well as from
medical colleagues within the team
• We use group model to overcome
the challenge of space and direct face
to face for individual counseling and
testing but the sample is sent to the
US for testing with Color.
A Typical Session
Pre-test Consultation embedded within existing clinics in oncologyunits at the Radiation Oncology, Radiology and Surgical Outpatient departments in selected hospitals.
•Engage patient & assess concerns/motivations• Document patient and family cancer history• Explain principles of heredity and cancer genetics• Facilitate informed consent and filling of a questionnaire;• Initiate testingColor Genomics Hereditary Cancer Panel Test• 30 genes tested known to be linked to 8 different hereditary
cancers: Breast, Ovarian, Prostate, Pancreatic, Stomach,Melanoma, Uterine and Colorectal.
• Saliva sample (non-invasive test)
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Genetic
testing
with
Color
GenomicsGenetic testing forHBOC - ongoingcollaboration withColor Genomics Inc
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Color Genomics – Testing: Genes and Cancers25
Genetic Testing
UCH LASUTH LUTH
Surgical Oncology Surgical Oncology Cancer centre
Gynae Oncology Radiation Oncology
Radiation Oncology
Radiology
169 tested 90 tested 60 tested
TOTAL SAMPLES SENT SO FAR (319), PROCESSED (299), EXPIRED (20),
RESAMPLING (22) AND RESULTS OBTAINED (277), MUTATIONS (52)
FMC
Cancer Genetics Education Workshop for healthcare workers (Nurses, Doctors, Social Workers, Nutritionists and so on)
NO GENETIC COUNSELING AND TESTING YET
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28% (19)
15% (10)
9% (6)7% (5)1% (1)
40% (27)
Recorded mutations at the 3 sites
BRCA 1 BRCA 2 ATM PALB 2 BRIP VUS
* VUS not reported in patients from LASUTH and LUTH and the latter shipment from UCH but among the
first 100 samples.
LASUTH LUTH UCH
BRCA 1 6 4 9
BRCA 2 2 0 8
ATM 0 3 3
PALB 2 0 1 4
BRIP 0 0 1
VUS 0 0 27
8 8 52
Genetic mutations by site
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Communicating Genetic
Test Results Disclosure Results Disclosure • Description of the test• Interpret the meaning and communicate implication of the genetic test results
• Facilitate adaptation and coping with impact of result
• Provide personalized risk management recommendations and resources• Deal with Ethical, legal and social issues (“ELSI”) that may arise.
• Assist patient with plan for communication of results/recommendations with at-risk family members
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Capacity building at the
Department of Nursing,
University of Ibadan
At the University College
Hospital (UCH)
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Lagos State University Teaching Hospital (LASUTH) Session
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Lagos University Teaching
Hospital (LUTH) Session
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Federal Medical Center,
Abeokuta (FMC)
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Video of one of the Training
Sessions
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The Foreseeable Future 135
The Foreseeable Future 2• Establish patient Navigation system in our facility• Integrate genetic counseling into tumor board meeting• Complete and publish validation of the Yoruba Genetic Album• Expand capacity building to other hospitals and other
diseases• Upgrade from paper and pencil pedigree drawing to progeny• Transform hard copy genetic album to electronic tablet
platform• Expand Genetic testing to other hospitals and patients’ proxy• Encourage nursing research in the area of genetics and
genomics• Seek fund for further research and dissemination findings• Integrate cancer genetics/genomics to nursing curricular
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Adejumo et
al (2018)
made a
reasonable
case for
investing in
clinical
cancer
genetics
services in
Nigeria
-
Ginsburg & Narod (2018)https://doi.org/10.1200/JGO.17.00158
Herculean task, right?
Truly complex but …
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Conclusion• Nurses who are knowledgeable about genetics/genomics
and skilled at obtaining and assessing risk in a familyhave great potential to help avert genetic disorders andtheir associated morbidity and mortality
• It may be easier for countries with resource constraintsto build capacity of nurses as genetic counselors thanraising new crop of professionals.
• This is ongoing in Nigeria and with this evidence, it isfeasible. Slowly but steadily, a little drop of watereventually becomes a mighty ocean.
• The greatest hurdle to fly over is that of starting andwhen we start slow as we have done and remain steadyas we are determined, we will get there and the pain oftransition will not be unbearable.
•
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Acknowledgements• Prof. Olufunmilayo Olopade• Prof. Sola Olopade• Prof. Oladosu Ojengbede• Prof. Peace Babalola • Late Prof. Jonathan Osiki• Dr. Abimbola Oluwatosin• Prof. Rebecca Hamilton• Prof. Frank Hicks• Dr. Lydia Usha • Dr. Dianne Chapman.• Dr. Janice Phillips• Mrs. Nkem Chineme• Mrs Cassey Cassandra Gulden• Mr. Daniel Trans/corte• Mrs Gloria Needlman• Mrs Judith Heineman
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Acknowledgments
All the Nurses and
recruiters on the Project
All our patients who
participated in the
Genetic counseling and
Testing
Staff of Funmi Olopade’s Lab.
GEN-CT Team Members
NURSES: - Prof Prisca O. Adejumo
- Mrs Toyin I. G. Aniagwu
- Mrs Omolara Fagbenle
- Mrs Olubunmi Ajayi - Mrs Abiodun Oni
- Mrs Oluyemi Olajide -Dr Adeyoola Oluwamotemi - Mrs Funmilayo Olatoye-Wahab.
DOCTORS - Prof. Temitayo Ogundiran
- Dr Popoola
- Dr Tunde Adedokun
- Dr Olutosin Awolude
- Dr Tunde Odukogbe
PHARMACIST : - Dr Olayinka Kotila
EPIDEMIOLOGISTS AND PUBLIC HEALTH EXPERTS. GLOBAL HEALTH INTERNS
- Dr Stella Odedina - Makayla Kochheiser
- Mrs Imaria Agwai - Kaothar Oladoja
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References
Adejumo, P., Aniagwu, T., Oluwatosin, A., Fagbenle, O., Ajayi, O., Ogungbade, D., … Olopade, O. (2018). Knowledge of Genetic Counseling Among Patients With Breast Cancer and Their Relatives at a Nigerian Teaching Hospital. Journal of global oncology, 4, 1–8. doi:10.1200/JGO.17.00158
Badzek, L Turner, M & Jenkins, J. F (2008) Genomics and Nursing Practice: Advancing the Nursing Profession The Online Journal of Issues in Nursing Vol 2No1 Jan 2008
Calzone, K. A., Cashion, A., Feetham, S., Jenkins, J., Prows, C. A., Williams, J. K., & Wung, S. F. (2010). Nurses transforming health care using genetics and genomics. Nursing outlook, 58(1), 26–35. doi:10.1016/j.outlook.2009.05.001
Consensus Panel on Genomic Nursing Competencies (2006). Essential nursing competencies and curricula guidelines for genetics and genomics. Silver Spring, MD: American Nurses Association.
Lea, D. H., (February 17, 2009) "Basic Genetics and Genomics: A Primer for Nurses" OJIN: The Online Journal of Issues in Nursing; Vol. 14 No.2
"Economic Impact of the Human Genome Project – Battelle" (PDF) http://hihg.med.miami.edu/code/http/modules/education/Design/Print.asp?Course
Num=1&;LessonNum=3 "Nigerian Constitution". Nigeria Law. Retrieved 17 July 2015.
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"Nigeria Fact Sheet" (PDF). United States Embassy in Nigeria. Retrieved 23 September 2018.
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