종양유전 간호사의 역할 Nursing Roles

in Genetic Health Care Service, Research & Education

2007.2.24 고신대 강의전명희 (jun7710@dju.ac.kr)

www.e-dju.ac.kr/brca

학습목표

• 종양유전상담의 정의를 말할 수 있다 .• 종양유전상담간호사의 credentialing system 에

대하여 진술할 수 있다 .• 종양유전상담의 유형을 말할 수 있다 .• 종양유전 상담 모형을 이해한다 .• 한국형 종양유전상담 모형을 논의할 수 있다 .

“Nurses have long provided care to patients and families with genetic conditions” Bottorff, 2005, p. 97; Anderson, 1998).

In the 1990s, cancer genetics was a rapidly evolving field that became an integral part of every cancer patient's intake assessment. New roles in cancer genetics prevention requires nurses to keep abreast of a rapidly growing body of genetic knowledge.

Cancer genetics unites nursing, medicine, and counseling psychology with the science of oncology and genetics (Calzone & Tranin, 2003).

Introduction

유전상담• 유전상담과정은 위험요인 사정 , 커뮤니케이션 ,

교육과정 등으로 구성되며 개인과 가족에게 유전자 검사의 본질과 한계점 , 유기성 , 위험 , 비용 , 검사 결과의 의미 등에 대한 정보를 제공하는 것을 주요 업무로 한다 .

• 유전자 검사 결과와 관련지은 상담과 지지가 유전 상담에서 가장 핵심적인 내용이 될 것이다 .

• 대상자는 그들의 건강과 관련된 결정 시 적절한 정보를 제공받아야 하며 , 검사 시 사정동의를 해야만 한다 . 이런 과정을 반드시 밟은 뒤 유전자 검사를 실시해야 하므로 , 유전자 검사는 반드시 유전 상담을 병합하고 운영해야 한다 (Reiger, 2000).

Genetic Counseling

• The process of collecting genetic information and communicating, in a supportive environment, the implications of that information to a client and his or her family.(Greco,K.,2003).

• Non directive, not imperative/presents options

• Counselors take special care to be sensitive to the emotional and psychosocial needs, culture, and healthcare beliefs of the client and his or her family.

Model of Delivering Genetic Services

(Long Beach Memorial Hospital)

CANCER RISK AND PREVENTION PROGAM : Sample Report(Pre test)

• INITIAL CONSULTATION:• DATE: February 19, 2004• HISTORY: Ms. XXX is a 45- year-old female referred by Dr. *** for genetic cancer risk assessment

due to her personal history of breast cancer and a family history of breast cancer. Ms. XXX presents to the clinic concerned about the possibility of her cancer being of hereditary nature and the implications of this for her future healthcare. She is motivated to understand more about her risk for other cancers, especially her risk for developing ovarian cancer.

• PAST MEDICAL HISTORY: • On 7/23/02 Ms. XXX had a suspicious mammogram which ultimately led to the diagnosis of Stag

e IIA (T1N1MX) invasive carcinoma of the right breast. Histopathology revealed 2 separate foci each measuring .2cm. spanning 1.9cm with a DCIS component. Her tumors were ER+, PR+, Her2/neu neg; 1/7 nodes were positive for disease. She was treated with neoadjuvant chemotherapy, partial mastectomy, radiation, and high dose chemotherapy. She is currently taking tamoxifen.

• • PAST SURGICAL HISTORY: 2 C-sections • REPRODUCTIVE HISTORY: Menarche age 12. G3P2. First live birth at age 26. She breast fed for a

total of 41/2 months. She never used oral contraceptives or HRT.• ALLERGIES: NKA

• CURRENT MEDICATIONS: Tamoxifen, Vioxx, Zoloft, Multivitamin, and Calcium. s • SOCIAL HISTORY: Ms. XXX is an instructor at Coast Community College. She and her husband Jeff

are the parents of 2 children, a boy age 15 and a girl age 20. She does not drink alcohol. She has a 15 pack year history of smoking.

• FAMILY HISTORY: A three-generation pedigree was obtained and is detailed on a separate sheet. There is no known breast cancer in her family. Her maternal grandmother died of throat cancer at age 90; her maternal grandfather died of lung cancer at age 64. There is a paucity of females on the paternal side to ascertain for hereditary breast/ovarian cancer syndrome. The paternal and maternal lineage is of Ashkenazi-Jewish descent.

• CANCER SCREENING HISTORY: Ms. XXX has yearly mammograms, clinical breast exams, pap smears and pelvic exams—most recently on 6/2003. She had had a colonoscopy in her 30 because of abdominal pain. She has never had chest x-ray.

• IMPRESSION: Ms. XXX is a 47-year-old female of Ashkenazi-Jewish heritage who has a personal history of early onset breast cancer which raises suspicion for hereditary breast and ovarian cancer (HBOC) syndrome. HBOC syndrome is typically associated with BRCA1 and BRCA2 gene mutations.

• Using tables derived form more than 10,000 women who underwent genetic analysis of the BRCA genes; we estimate a 13.7% probability that Ms. XXX carries a deleterious BRCA mutation. There are three specific mutations in the BRCA gene that account for about 95% of BRCA-related hereditary breast and ovarian cancers in persons of Ashkenazi-Jewish ancestry. Approximately 1/40 individuals of Ashkenazi-Jewish descent carry one of these three founder mutations. A family who has breast or ovarian cancer increases the probability of carrying one of these mutations.

• The estimated lifetime risk for breast cancer in patients who have a Jewish founder mutation in the BRCA1 or BRCA2 genes is between 40-72% and their risk for ovarian cancer is up to 30%. This is in contrast to the general population risk of 11% for breast and 1.6% lifetime risk for ovarian cancer.

• SUMMARY AND RECOMMENDATION:• An extended visit (1 1/2 hours) was carried out to construct and analyze a

comprehensive family tree, discuss genetic principles and hereditary cancer patterns. The majority of the time was spent in discussing the risks, benefits and limitations of genetic testing and various risk estimation models. We also briefly discussed options for risk reduction in those patients found to have a deleterious mutation and what options are available to Ms. Hollander if she were found to have a deleterious mutation.

• Ms. XXX expressed understanding of the information provided to her today. We have drawn a blood sample and will submit this along with paperwork for preauthorization for testing to her insurance company. We have invited her to contact us in the interim should she have any questions.

• _____________________________________• ###, MPH• Surgical Oncology • Director, Cancer Risk and Prevention Program• ____________________________________• ###, RN, MSN, APNG• Cancer Risk Counselor

What is Genetic Nursing?

Basic Nursing Practice Roles Involving Genetics

• Assess family history

• Identify a concern about genetic inheritance

• Referral to a genetic expert

• Give basic information about genetic and non-genetic risk factors

Advanced Practice Nursing Roles Involving Genetics

• CNS, NP, GNC,

• Experts in genetic risk assessment and counseling

• Case Management/

Education of Pt. & Family

• Collaboration with MDs to provide comprehensive genetic services

Oncology nursing practice related to cancer genetics includes three levels of practice—

1. the general oncology nurse2. the advanced practice oncology nurse3. the advanced practice oncology nurse with specialty

training in cancer genetics

Nurses providing comprehensive cancer genetic risk counseling must be advanced practice oncology nurses with specialized education in hereditary cancer genetics.

Credentials for Nurse Specialists in Genetics

In 2001, ISONG approved formation of the Genetic Nursing Credentialing Commission (GNCC) and in 2002, GNCC was incorporated. The GNCC provides recognition for clinical nursing practice with a genetics component through a credentialing process. Since 2001, nurses who are prepared with the master in nursing may qualify for the Advanced Practice Nurse in Genetics (APNG) credential. Credentialing for the APNG is based on submitting a portfolio of accomplishments documenting the nurse’s genetic expertise. As of late 2004, 28 APNs had received the APNG credential. .

Credentials for Nurse Specialists in Genetics

Registered nurse (RN) with at least a master’s degree in nursing or equivalent.1. At least 3 years experience as a genetic nurse with 50% genetic practice

component.2. Documentation of 50 cases where the APN has provided health care services

with a genetic component in the past 5 years. 3. Minimum of 50 contact hours of genetic content (acquisition of genetics

content through classes, workshops or continuing education) in the past 5 years.

4. Demonstrate clinical competency by submitting four in-depth genetic case histories that show the nurse’s ability to apply genetic knowledge according to the scope and standards of genetic nursing practice.

5. Submission of portfolio (including all of the above) that demonstrates the nurse’s accomplishments and competency.

6. Three professional letters of reference.

The Oncology Nursing Society (ONS) that has over 30,000 members, has a special interest group (SIG) in cancer genetics with about 259 members. Perhaps due to recent advances in cancer genetics and new gene tests, the ONS has identified genetics as a key area for cancer genetics specialization for APN oncology nurses. ONS developed a position paper on the role of oncology nurses in cancer genetic counseling which includes the following several sections.

Oncology nursing practice related to cancer genetics includes three levels of practice—

1. the general oncology nurse2. the advanced practice oncology nurse3. the advanced practice oncology nurse with specialty

training in cancer genetics

Nurses providing comprehensive cancer genetic risk counseling must be advanced practice oncology nurses with specialized education in hereditary cancer genetics.

ONCOLOGY NURSING SOCIETY Position Statements

THE ROLE OF THE ONCOLOGY NURSE IN CANCER GENETIC COUNSELING(http://www.ons.org/publications/positions/CancerGeneticCounseling.shtml)

CANCER GENETIC TESTING AND RISK ASSESSMENT COUNSELINGhttp://www.ons.org/publications/positions/CancerPredisposition.shtml

AWHONN recognizes that while registered nurses should be prepared to support clients related to genetic testing, they do not and should not be expected to fill the role of a genetics counselor or specialist. Genetic nursing is a separate clinical specialty that focuses on providing nursing care to clients who have known genetic conditions and/or birth defects, or who are at risk at develop them, or who have children with genetic conditions and/or birth defects.

RNs need to know who to refer patients to as specialists in genetic nursing, genetic counseling, and other specialists that may provide more specialized genetics-related care.

Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)

Position Statement

Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) has also taken steps to advance the recognition of nurses with special genetics competency and practice. The AWHONN executive board adopted the AWHONN position paper that relates to genetic testing in 2000.

This paper describes the roles and responsibilities of the registered nurse who is a part of a multidisciplinary team providing care for women and newborns considering or undergoing genetic testing. This paper advocates for registered nurses being adequately prepared in genetics.

Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN)

Position Statements

Position Statement on Role of Nurse in Genetic Testing http://www.awhonn.org/awhonn/?pg=873-6230-6990-4730-5400-7430

More Nursing Specialty Groups Will be Creating Positions Statements in the Future because genetic science, genomic medicine is expanding into all clinical specialties:

ISONG Nurse Specialists in Genetics

Table 4.3. Academic Degrees, by Field and Type of Degree

Degree Granting Field Nursing Other Fields Genetics-relatedBaccalaureate 81% 14% 1%Masters 71% 18% 7%Doctorate 20% 12% 7%N= 293 (Nov. 2004)N=208, individuals listed more than one degree

ISONG Nurse Specialists in Genetics Survey (2005)

Table 5.2. Primary Workplace Setting

Practice Setting Respondents

School of Nursing (college, university, educational institution) 32%Government sponsored or Federal/state/county agency/office 17%University medical center (not in a School of Nursing) 16%Hospital or hospital associated clinics 18%Private physician practice (group practice, private, etc) 4%Freestanding clinic/community health center 3%Biotechnology/pharmaceutical/genomics company 1%Other 11%N= 201 (Nov. 2004)

ISONG Nurse Specialists in Genetics Survey (2005)

Table 5.3. Primary Job Title

Primary Job Title / Description Respondents

Educator/Faculty 26%Researcher or Research Coordinator 19%Nurse Practitioner 12%Clinical Nurse Specialist 8%Supervisor/Director/Administrator 8% Genetic Counselor 5%Nurse Clinician 4%Department Head/Chair or Dean 4%Case Manager/Care Coordinator 3%Other 12%N = 196(Nov. 2004)

ISONG Nurse Specialists in Genetics Survey (2005)

Table 5. 6 Professional Income (2003)

The average or mean income was $71,000, and the median income was $66,000.

A large proportion of nurses (42%) had incomes in the $50,000-$74,999 range. About (25%) of respondents earned between $75,000 and $99,999. Only a small number (12%) earned more than $100,000.

N = 196(Nov. 2004)

ISONG Nurse Specialists in Genetics Survey (2005)

Table 5.8. ISONG Nurses as Educators – The Student Groups Student Groups Respondents

Graduate level nursing students (nurse practitioners, midwives) 47%Continuing education for practicing nurses 45%Baccalaureate degree level nursing students 40%The public 46%Other health professionals/trainees 38%Medical students/Residents/ Fellows 26%Physicians 20%Genetic counselors/students 10%Physician assistants/students 7%Social workers/students 6%

N = 176 (Nov. 2004)

ISONG Nurse Specialists in Genetics Survey (2005)

Professional Income (2003)

Table 5.7. Aggregate Professional Work Time in Various Professional Activities

Professional Activities Weekly Work Time

Education/Teaching 39% Patient care 20% Research 19% Administration 16% Community health / Public health 7% Other 0%

N = 199(Nov. 2004)

Table 5.9 Research AreasISONG Members (2003)

Area of Research Respondents

Patient/family decision-making, learning, and coping

27%

Patient functional and health outcomes 25%

Special populations (family studies, women's health, gerontology)

23%

Educational research 22%

Clinical trials 19%

Biomedical laboratory based research

17%

Bioethics/ethical issues 9%

Health services research (access, organization of care, financing)

9%

Palliative care/end of life 3%

Mental health or psychosocial issues 3%

Other 8%

Total n = 160 100%

104 nurses working on non biomedical /clinical trial research

Need for a Conceptual Model to guide Education/ Curriculum Development, Education and Research

Why???

• Maximize Efficient Use of Scarce Resources

• Foster Programs of Research

• Directions for Mentoring Faculty and Students

• Systematic Advance of Knowledge Development in Genetic Nursing

• Foster International Collaboration

• Impact Health Policy Development

FINAL REPORTADVANCED PRACTICE NURSES IN GENETICS:

A SURVEY OF ISONG MEMBERSPrepared by

Genetics Health Services Research CenterDepartment of Epidemiology and Preventive Medicine

University of Maryland School of Medicine660 West Redwood Street

Baltimore Maryland 410-706-1277

Copyright April 2005

Interdisciplinary team work

• Comprehensive genetics nursing practice is a dynamic process that involves interdisciplinary collegiality and collaboration with medical genetics and other healthcare professionals to serve a shared mission to improve health potential for people at risk to a hereditary deleterious gene mutation.

American breast cancer counseling model : Analytic

tool• goal of the service, clinical setting, patient population, process/even

ts, role of physician, role of genetic counselor, team structure and interactions, negotiation and delegation, who is the expert, impact on patients’ autonomy of the patient, how the patient shows their feelings, and whether they volunteer unsolicted information there extra discussion ? How to manage the postmenopausal problem, how the patient understand the genetic test meaning ? how to manage the conflict between mother had had breast surgery-daughter suspecting HBOC. Solution of counselee’s uncertainty about possibilities of the HBOC

• How about patient’s ability of decision making ?• How transdiciplinary teamwork was happen ?

Three Expert Model (Jun & Anderson, 2007)

1.Specialized Expert Model: Strong Binding, mostly controlled by the Dr.

(Parallel model)2. Egalitarian Co-supportive Expert Model3. Generalist Expert Model4. Suggestion for Korea: Expert, Co-

supportive, and Autonomous Role Model

Affiliated network model

Conclusion(Jun & Anderson, 2007)

• The goal should be to design patient care services with a view to provide the best model of care for the patient and not merely focus on models that are ideal for clinicians or genetic researchers. Quality Assurance means that services are evaluated for their effect on patients and families. That recognizes a patient-centered perspective of quality assurance.