Surveys Reveal Wide Gaps in Knowledge of Genetic Mutation Testing Exist Between Oncologists, Nurses and Cancer Patients
RIDGEFIELD, Conn., Nov. 16, 2011 /PRNewswire/ — Despite guidelines calling for genetic mutation testing in certain patients with lung cancer, three new surveys fielded by Harris Interactive reveal a disconnect in the understanding of and communication about genetic mutation testing among healthcare professionals and cancer patients. Results of the surveys were announced today by Boehringer Ingelheim Pharmaceuticals, Inc., which sponsored the surveys in partnership with the Association of Community Cancer Centers (ACCC), ONS:Edge and the National Lung Cancer Partnership (NLCP).
Surveys of 95 community oncologists, 522 oncology nurses and 436 lung cancer patients across the U.S. were collected in October 2011 to measure perceptions and knowledge of genetic mutation testing and to identify unmet needs and gaps in education.
Cancer researchers are increasing their understanding of how certain mutations to cell DNA can cause cells to grow abnormally and form cancers, including lung cancer. Genetic mutation testing has the potential to identify these mutations and can aid in informed treatment decisions, but since the field is relatively new, knowledge of genetic mutation testing remains low and the practice has not been widely adopted.
The surveys found that while 94 percent of physicians responded that they discuss genetic mutation testing with their patients, only 17 percent of lung cancer patients surveyed were aware of genetic mutation testing. Nearly half of oncology nurses (44 percent) did not discuss genetic mutation testing with patients, primarily because they felt that they lacked the knowledge to discuss it (56 percent) or didn’t have the proper resources to share with their patients (33 percent). These findings highlight the need for a greater understanding of genetic mutation testing.
“Boehringer Ingelheim is committed to exploring the potential of personalized medicine and is excited by the possibility of being able to tailor an individual patient’s treatment based on genetic information,” said Christopher Corsico, M.D., M.P.H., Sr. Vice President, Medicine and Regulatory, Boehringer Ingelheim Pharmaceuticals, Inc. “Knowledge of genetic mutation testing among the medical and patient communities will help ensure that patients are receiving the most appropriate care as early as possible.”
Community Oncologists Focused on Testing, Face Barriers
The vast majority of community oncologists surveyed responded that they discuss genetic mutation testing with their peers during tumor boards (88 percent) and with their cancer patients (94 percent), and that patient discussions were driven by their desire for patients to be informed about all aspects of their treatment (89 percent) and for patients to have access to personalized therapies (78 percent). Despite this, respondents identified a number of issues related to testing, including cost, concerns regarding tissue acquisition and delays in initiating treatment.
“Community oncologists treat an estimated 60 percent of cancer patients nationwide, but as these results show, cost challenges, likely related to reimbursement, as well as issues including lack of tissue and multiple labs involved in testing create structural barriers to use of genetic mutation testing and establishing a treatment plan based on those results,” said Christian G. Downs, JD, MHA, Executive Director, Association of Community Cancer Centers, the leading education and advocacy organization for the cancer team.
Oncology Nurses Lack Resources for Patients
About half of the oncology nurses surveyed discuss genetic mutation testing (56 percent) and personalized medicine (46 percent) with their patients; 59 percent of their patients were very receptive or receptive to testing. However, because the nurses felt that they lacked the knowledge to discuss genetic mutation testing or didn’t have the proper resources, 69 percent were somewhat or not at all comfortable with having this discussion with patients. These findings point to a need for a greater understanding of genetic mutation testing among nurses, including latest practices, particularly because 52 percent of oncology nurses are involved in ordering or obtaining tests or results and they play a major role in helping cancer patients navigate their way through diagnosis and treatment.
“Oncology nurses are pivotal in educating patients about test results and treatment options,” said Keightley Amen, BA, AMWA, Project Manager, ONS:Edge, a subsidiary of the Oncology Nursing Society. “But as these survey results show, nurses need deeper knowledge and better tools to communicate effectively with cancer patients about this relatively new concept in their care.”
Lung Cancer Patients Need Education
Despite the development of personalized therapies that specifically address genetic mutations in lung cancer, only 8 to 10 percent of lung cancer patients surveyed were aware of each of the three primary mutations: epidermal growth factor receptor (EGFR), anaplastic lymphoma kinase (ALK) and KRAS. Just 16 percent of lung cancer patients surveyed reported that their healthcare professionals discussed genetic mutation testing with them. Only 12 percent indicated that they had a tumor tested for a genetic mutation, with just 10 percent saying that they had requested a genetic mutation test for their lung cancer.
“Approaches to cancer treatment are changing rapidly, and it is important for patients to be educated and feel empowered when interacting with their healthcare team,” said Regina Vidaver, Ph.D., Executive Director, National Lung Cancer Partnership, an advocacy organization dedicated to raising public awareness of the disease and generating funding for lung cancer research. “The more patients, physicians and nurses know about genetic mutation testing, the easier it will be to properly diagnose and establish a treatment plan for the patient.”
About Lung Cancer
Lung cancer is the second most common cancer and kills more people than any other cancer. In 2011, approximately 221,130 new cases of lung cancer will be diagnosed in the United States, with 156,940 Americans dying from the disease. Non-small cell lung cancer (NSCLC) is the most common form, accounting for about 85 percent of all lung cancers.(i) Lung cancer remains an area of high unmet need, especially in its advanced stages where it is particularly aggressive and patients have limited treatment options.
While there are a wide variety of genetic mutations that can lead to lung cancer, the three most common mutations seen in lung cancer are: anaplastic lymphoma kinase (ALK) mutation, which occurs in 5 percent of lung cancer patients; epidermal growth factor receptor (EGFR)-mutation, which occurs in 40 percent of Asians and 10-15 percent of Caucasians with lung cancer; and KRAS mutation, which occurs in 10 percent of Asians and 30 percent of Caucasians with lung cancer.(ii)
About the Association of Community Cancer Centers (ACCC)
Since 1974, the Association of Community Cancer Centers (ACCC) has served as the leading national multidisciplinary organization that sets the standard for quality care for patients with cancer. ACCC is dedicated to promoting professional learning opportunities and to providing a forum for members to network and enhance their skills in the business, clinical and management aspects of care for the cancer community. Nearly 17,000 cancer care professionals from approximately 900 hospitals and more than 1,200 private practices are affiliated with ACCC. The organization’s unique membership includes all members of the cancer care team: medical and radiation oncologists, surgeons, cancer program administrators and medical directors, pharmacists, oncology nurses, oncology social workers, and cancer program data managers. For more information, visit ACCC’s website at www.accc-cancer.org.
ONS:Edge, a subsidiary of the Oncology Nursing Society, is a healthcare intelligence company formed with the explicit purpose of bringing nursing knowledge and research deeper into the business of healthcare. ONS:Edge specializes in a core group of services: healthcare advisory boards, ancillary events at oncology nursing conferences, speaker bureau programs, strategic planning and marketing support, market research, and communications and awareness campaign development and support.
As the for-profit subsidiary of the Oncology Nursing Society (ONS), ONS:Edge’s competitive advantage is unparalleled access to key opinion leaders and the more than 37,000 members of ONS, whose commitment to evidence-based practice and dedication to excellence in patient care put them at the forefront of leading change in oncology care.
About the National Lung Cancer Partnership (NLCP)
The National Lung Cancer Partnership is a 501(c)(3) non-profit organization made up of leading doctors, researchers, patient advocates and lung cancer survivors dedicated to raising public awareness of the disease and generating funding for lung cancer research. For more information please visit www.NationalLungCancerPartnership.org.
About Boehringer Ingelheim Pharmaceuticals, Inc.
Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, CT, is the largest U.S. subsidiary of Boehringer Ingelheim Corporation (Ridgefield, CT) and a member of the Boehringer Ingelheim group of companies.
The Boehringer Ingelheim group is one of the world’s 20 leading pharmaceutical companies. Headquartered in Ingelheim, Germany, it operates globally with 145 affiliates and more than 42,000 employees. Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel products of high therapeutic value for human and veterinary medicine.
As a central element of its culture, Boehringer Ingelheim pledges to act socially responsible. Involvement in social projects, caring for employees and their families, and providing equal opportunities for all employees form the foundation of the global operations. Mutual cooperation and respect, as well as environmental protection and sustainability, are intrinsic factors in all of Boehringer Ingelheim’s endeavors.
In 2010, Boehringer Ingelheim posted net sales of approximately $16.7 billion (about 12.6 billion euro) while spending almost 24 percent of net sales in its largest business segment, Prescription Medicines, on research and development.
(i) American Cancer Society. Cancer Facts and Figures: 2011. Available at: http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-029771.pdf. Last accessed October 13, 2011.
(ii) Quest Diagnostics. Lung Cancer Mutation Panel (EGFR, KRAS, ALK). Available at: http://questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=Lung/TS_LungCancerMutation_Panel.htm. Last accessed October 13, 2011.
SOURCE Boehringer Ingelheim Pharmaceuticals, Inc.