Collection and Use of a Cancer Family History for Oncology Providers.

© 2014 by American Society of Clinical Oncology

American Society of Clinical Oncology Expert Statement: Collection and Use of a Cancer Family History for Oncology Providers

Karen H. Lu, Marie E. Wood⇑, Molly Daniels, Cathy Burke, James Ford, Noah D. Kauff, Wendy Kohlmann, Noralane M. Lindor, Therese M. Mulvey, Linda Robinson, Wendy S. Rubinstein, Elena M. Stoffel, Carrie Snyder, Sapna Syngal, Janette K. Merrill, Dana Swartzberg Wollins and Kevin S. Hughes

+
Author Affiliations

Karen H. Lu, Molly Daniels, and Cathy Burke, MD Anderson Cancer Center, Houston; Linda Robinson, Simmons Comprehensive Cancer Center, Dallas, TX; Marie E. Wood, University of Vermont, Burlington, VT; James Ford, Stanford University Medical Center, Stanford, CA; Noah D. Kauff, Memorial Sloan-Kettering Cancer Center, New York, NY; Wendy Kohlmann, Huntsman Cancer Institute, University of Utah, Salt Lake City, UT; Noralane M. Lindor, Mayo Clinic, Scottsdale, AZ; Therese M. Mulvey, Southcoast Centers for Cancer Care, Fall River; Sapna Syngal, Dana-Farber Cancer Institute, Brigham and Women's Hospital; Kevin S. Hughes, Avon Comprehensive Breast Evaluation Center, Massachusetts General Hospital, Boston, MA; Wendy Rubinstein, National Center for Biotechnology Information, National Library of Medicine, National Institutes of Health, Bethesda, MD; Elena M. Stoffel, University of Michigan, Ann Arbor, MI; Carrie Snyder, Creighton University, Omaha, NE; and Janette K. Merrill and Dana Swartzberg Wollins, American Society of Clinical Oncology, Alexandria, VA.

Corresponding author: Marie Wood, MD, University of Vermont, Hem/Onc, Given E214, 89 Beaumont, Burlington, VT 05405, e-mail: marie.wood@uvm.edu.

K.H.L. and M.E.W. contributed equally to this work.



INTRODUCTION

Approximately 5% to 10% of cancers are attributable to a hereditary cancer predisposition syndrome.
Identifying those patients with cancer who have an inherited cancer predisposition syndrome has significant benefit both to the patient and to at-risk relatives.

In addition, oncology patients' short- and long-term management can be personalized based on their genetic status.
For example, in the short term, BRCA1/BRCA2-positive genetic test results can affect surgical decisions and may soon have an impact on systemic treatment options.
In the long term, oncology patients' survivorship plans can be tailored to incorporate surveillance and prevention for their increased risk of second malignancies.

Furthermore, the ability to perform predictive genetic testing on patients' family members results in a more precise risk assessment and initiation of appropriate screening and prevention strategies.

Family history is key to the identification of those individuals who have an inherited predisposition to malignancy or who are at increased risk for additional primary cancers.
The goals of any cancer family history should be to provide enough information to make a preliminary determination of the risk of a familial predisposition and to develop a preliminary management plan.

A cancer family history taken at the first visit with the oncology provider can raise the suspicion of a hereditary cancer syndrome and prompt further investigation.

After the initial visit, the ongoing relationship between the oncologist and the patient provides multiple opportunities for reassessment and updating of family history. This can prompt changes in recommended cancer screening.

Additionally, the field of hereditary cancer predisposition is advancing rapidly. The long-term relationship between the oncologist and cancer survivor affords repeated opportunities for reassessment and recognition of newly defined cancer susceptibility genes and new opportunities for more advanced genetic testing that may apply to patients who have previously undergone genetic testing.1

Not only is hereditary risk assessment part of good oncology care, but there is also an increasing focus on the area of quality improvement with regard to the provision of genetic testing and counseling services.

For example, the American College of Surgeons Commission on Cancer (CoC) grants accreditation only to facilities that are committed to excellence in cancer care and are able to comply with established CoC standards.
The 2012 CoC program standards require that cancer risk assessment, genetic counseling, and testing services be provided to patients either on site or by referral by a qualified genetics professional.
Furthermore, the American Society of Clinical Oncology (ASCO) Quality Oncology Practice Initiative (QOPI) includes measures regarding the collection and interpretation of cancer family histories and whether appropriate testing was ordered.

ASCO has taken a lead in providing guidance and education regarding identification and management of individuals with inherited predisposition to malignancy.
In 1996, ASCO published a policy statement on genetic testing for cancer susceptibility to foster expanded access to medical care for at-risk patients and their families, as well as to enhance continued advances in the quality of that care.2

This statement was updated in 2003 and again in 2010.3,4 Over the last two decades, ASCO has developed two editions of an educational syllabus (ASCO Curriculum: Cancer Genetics and Cancer Susceptibility Testing), has held numerous workshops and symposia, and has fostered a growing number of online education modules at ASCO University (http://university.asco.org/).

Over the last several years, ASCO has assisted oncology professionals in responsibly integrating genetic testing into clinical oncology practice.
A primary objective of this work has been to increase oncologists' core knowledge about hereditary cancer susceptibility syndromes, methods of cancer risk assessment and risk management, and risks and benefits of genetic testing.
A challenge in developing guidance for practicing oncologists in this area is that there is no clear evidence base from which to define how a family history should be taken or what constitutes the right amount of information for an initial cancer screening family history.
To address this need, the ASCO Cancer Genetics Subcommittee, under the auspices of the Cancer Prevention Committee, has developed this statement for oncology providers to

Define a minimum cancer family history

Provide guidance regarding interpretation and next steps

Identify current barriers to accurate family history taking and interpretation

To be clear, this consensus statement does not formulate specific guidelines for referral but seeks to provide clarification to the practicing oncology provider and other specialists on how and what to collect for a cancer family history and how to interpret the family history in the context of other information.

To develop this statement, the Cancer Genetics Subcommittee convened a group of 15 experts in the areas of oncology, cancer genetics, and genetic counseling. A consensus conference was held in February 2012, and the deliberations from this meeting were used by the Cancer Genetics Subcommittee to generate this statement.