Prisca Olabisi Adejumo RN, PhD.

Nurses and Genetic

Counseling and Testing in

Nigeria

University of Ibadan/University College Hospital, Ibadan

bisiandbayo@yahoo.com

Disclosure

• None

2

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

3

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?

7

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)

8

Nigerian Nurseso Training

o Experience

o Specialty

o Number

9

They play important

role as patient

advocate and

compassionate

support system

and

…

10

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,

14

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

16

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

17

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)

18

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

19

Genetic Counseling Educational Materials

20

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

21

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)

23

Genetic

testing

with

Color

GenomicsGenetic testing forHBOC - ongoingcollaboration withColor Genomics Inc

24

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

26

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

27

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

28

29

Capacity building at the

Department of Nursing,

University of Ibadan

At the University College

Hospital (UCH)

30

Lagos State University Teaching Hospital (LASUTH) Session

31

Lagos University Teaching

Hospital (LUTH) Session

32

Federal Medical Center,

Abeokuta (FMC)

33

Video of one of the Training

Sessions

34

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

36

37

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 …

38

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.

•

39

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

40

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

44

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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