Acton, Ronald T. PhD; Burst, Nickie M.; Casebeer, Linda PhD; Ferguson, Susan M. MD; Greene, Paul PhD; Laird, Beverly L.; Leviton, Laura PhD
Dr. Acton is professor, Departments of Microbiology, Medicine, and Epidemiology, Schools of Medicine, Dentistry, and Public Health; Dr. Casebeer is assistant professor and associate director, Continuing Medical Education, School of Medicine; Dr. Ferguson is assistant professor, Department of Medicine, School of Medicine; Dr. Greene is associate professor, Department of Medicine, School of Medicine; Dr. Leviton is professor, Department of Health Behavior, School of Public Health; at the time this article was written, Ms. Burst was a staff member and Ms. Laird was a graduate student; all at the University of Alabama at Birmingham.
Correspondence and requests for reprints should be addressed to Dr. Acton, Immunogenetics Program, Department of Microbiology, University of Alabama at Birmingham, 221 PAB, 1025 18th Street South, Birmingham, AL 35294-4400; e-mail: 〈Ron_Acton@.uab.edu〉.
This study was supported in part by a supplement grant to the Comprehensive Cancer Center Core Support Grant number 5 P30 CA 13148 from the National Cancer Institute, National Institutes of Health.
Purpose: To determine Alabama's primary care physicians' knowledge, attitudes, and behaviors regarding cancer genetics.
Method: A questionnaire was mailed to a random sample of 1,148 physicians: family and general practitioners, internists, and obstetrician—gynecologists.
Results: Of the surveyed physicians, 22.1% responded. Of the respondents, 63% to 85% obtained family histories of cancer from 76% to 100% of their patients. Obstetrician—gynecologists referred more patients for cancer genetic testing (p =.008) and were more confident in their abilities to tailor preventive recommendations based on the results (p =.05) than were the other physicians. Primary care physicians were more likely than were obstetrician—gynecologists to identify lack of time during the patient visit as hindering efforts to do genetic counseling (p =.01). Physicians in practice for ten years or less were more confident in explaining genetic test results than were those in practice for more than 20 years (p =.01).
Conclusion: These data validate gaps in primary care practices in obtaining family history of cancer, as well as lack of confidence in explaining genetic test results and in tailoring recommendations based on the tests.
Genetic information can help identify families and individuals at increased risk for many malignancies and inform treatment decisions for families with hereditary cancer syndromes.1,2 It is important that primary care providers make informed decisions regarding the application of cancer genetic testing, interpretation of test results, and implications for preventive or corrective interventions. Genetic testing for cancer susceptibility and curriculum guidelines for cancer genetic education programs have been published,3,4 but continuing medical education (CME) programs have done little to facilitate the dissemination among primary care physicians of cancer genetic testing and prevention guidelines. This lack of attention is particularly important in the Black Belt region of Alabama, where convergences of several social and demographic factors are associated with cancer incidence and mortality rates exceeding national norms.5,6
This report summarizes the results of a survey of primary care physicians in Alabama to inform development of a CME program on assessment and management of genetic risk for cancer.
We developed a questionnaire survey to measure physicians' attitudes about familial cancer issues and their practice patterns regarding family history, genetic testing, and counseling. The questionnaire was reviewed by medical geneticists, medical oncologists, and internists who were not members of the study team, and we revised it per their recommendations. The final questionnaire consisted of 15 questions, some multiple-choice, others using a Likert scale. Two questions asked the physicians to list questions or concerns regarding genetic testing that might affect their practices. The survey could be completed in approximately 15 minutes.
The survey period was February and March 1997. We mailed the questionnaire to a random, stratified sample of 1,148 family and general practitioners, internists, and obstetrician—gynecologists, which we had drawn from the 2,438 such physicians listed by the Alabama Medical Association. We mailed the questionnaire two additional times at intervals of two weeks to non-responders. Each mailing contained a cover letter from the director of the University of Alabama at Birmingham Comprehensive Cancer Center explaining the project and encouraging a response. Respondents received free registration at a CME course on familial cancer syndromes for which seven hours of AMA category 1 credit was offered. The survey data were entered into a Statistical Analysis System (SAS) database for analysis.
Of the surveyed physicians, 254 (22.1%) responded. The respondents included 71 (28%) family practitioners, 58 (23%) general internists, and 125 (49%) obstetrician—gynecologists. One third of the respondents had been in practice ten years or less; 51%, 11 to 30 years; and 16%, more than 30 years. Sixty percent were in group or clinic practice, 26% in solo practice, and 15% in other settings. There was no difference between respondents and non-respondents based on age, race, gender, practice type, practice location, and specialty.
Sixty-three percent of the family practice physicians, 74% of the general internists, and 85% of the obstetrician—gynecologists obtained family histories from 76% to 100% of their patients. Most (94%) of the respondents asked new patients about a family history of cancer, and 52% updated that history annually or when a family member was discovered to have cancer. When a patient was diagnosed as having cancer, 46% discussed family history of cancer with the patient. When an asymptomatic patient reported that a family member has cancer, 52% discussed family history of cancer. Although 71% of the respondents obtained family histories of cancer for four generations, they were less likely to ask about children, aunts and uncles, and great aunts and uncles than about brothers, sisters, parents, and grandparents.
Forty-eight percent of the respondents discussed hereditary cancer with fewer than 25% of their patients, 22% with 26% to 50%, 15% with 51% to 75%, and 15% with 76% to 100%. Within the year leading up to the survey, 79% of the respondents had not referred any patient for genetic testing, 19% had referred one to five patients, and 2% had referred more than five patients. Obstetrician—gynecologists had referred more patients for cancer genetic testing than had the other physicians (p =.008).
Most respondents felt that genetic testing provides useful information about the risk of cancer and can help tailor screening and preventive surgery recommendations. However, 69% of the respondents felt that genetic test results might be used by employers or insurers to discriminate against those at risk. Sixty-seven percent felt that informing patients of test results might have a negative effect on emotional well-being or quality of life. We observed no significant difference in the ways the physicians valued genetic testing, based either on specialty or on years in practice.
The factors that the respondents felt most facilitate genetic counseling in the practice setting were counseling skills and genetic knowledge, followed by a patient's interest in genetic testing and cancer prevention. As for factors that hinder genetic counseling, lack of time during the patient visit was the most often cited. This was especially true for the physicians who had been practicing more than 30 years (p =.045) and for the primary care physicians (p =.01).
Physicians in practice ten years or less were more confident than were those practicing more than 20 years in explaining genetic test results to patients (p =.01) and in tailoring recommendations for screening based on genetic test results (p =.02). Obstetrician—gynecologists were more confident in their abilities to tailor recommendations for preventive surgery based on genetic test results (p =.05).
Most of the physicians (92.2%) were interested in learning more about: (1) the influence of genetic factors on cancer risk, (2) guidelines for screening and surgical prevention based on genetic test results, (3) helping patients make informed decisions about screening and prevention, and (4) helping patients cope with fears and concerns about cancer.
This study's response rate of 22.3% is similar to the 30% response rate to a survey of cancer genetics attitudes and practices sent to 350 primary care physicians in Texas.7 We sampled more physicians (1,148) and obtained a larger sample (254), which provided more statistical power. Both are less than the 34% response rate to a survey on utilization and perceptions of genetics services by primary care physicians in the Pacific Northwest.8
A detailed family history of cancer is key to genetic risk assessment, screening, and prevention.1,9 The majority of the respondents (71%) reported obtaining family histories from new patients, but nearly half did not update them at annual physical examinations or when family members had cancer, and less than optimal information was obtained about various generations. More than 95% of the Pacific Northwest physicians reported taking family histories of cancer.8
In our sample, 21% of the respondents had, during the previous year, referred at least one patient for cancer genetic testing and evaluation, compared with 19% of the physicians in the Texas survey.7 Genetic consultation for a family history of cancer was rarely sought by the Pacific Northwest physicians.8 These data suggest that a majority of primary care physicians are missing opportunities to identify familial and hereditary cancer syndromes and to refer their patients for additional genetic assessment. The low number of referrals in our sample may reflect the physicians' lack of knowledge as expressed by (1) lack of confidence in explaining test results and in tailoring recommendations and/or (2) extreme interest in learning more about genetic issues. This may reflect the attitude of 67% of our respondents that informing patients of genetic test results might have negative effects on emotional well-being or quality of life. This was reflected in the responses of 40.6% of physicians in the Texas study. In our survey, 79% felt that genetic test results might be used by employers or insurers to discriminate against individuals with increased risks for hereditary cancer, compared with 60.4% in the Texas survey. Others10 have observed that one of the most significant predictors of knowledge of genetics is practicing in primary care specialties in which exposure to genetic problems is likely. This finding was echoed in our results. The larger number of obstetrician—gynecologists who responded to the survey suggests that awareness of genetic prenatal issues has sensitized this group to overall genetic issues. They may also be prompted by patients' concerns.
Recency of graduation from medical school has been identified as a predictor of knowledge of genetics and genetic tests.10 It was correlated in our sample with significantly greater confidence in explaining genetic test results to help patients understand the risk of cancer and in tailoring recommendations for screening. Physicians in practice more than 30 years reflected less confidence in these areas and higher perceptions of barriers to genetic counseling in the practice setting.
In our survey 92.2% of the respondents indicated interest in learning more about guidelines for screening and surgical prevention based on genetic testing, compared with 68.8% of the Texas physicians.
These survey data validate gaps in current primary care practices in obtaining family histories of cancer information, as well as lack of confidence in explaining genetic test results and in tailoring recommendations based on these results. Primary care physicians are unlikely to refer patients for genetic testing, although obstetrician—gynecologists see more use for such tests. Many respondents were interested in learning more about cancer genetics. These data support the need for implementation and evaluation of cancer genetics curriculum and adapting that curriculum to the needs of primary care clinicians.
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