Patient and provider attitudes toward genomic testing for prostate cancer susceptibility: a mixed method study

Abstract

BackgroundThe strong association between family history and prostate cancer (PCa) suggests a significant genetic contribution, yet specific highly penetrant PCa susceptibility genes have not been identified. Certain single-nucleotide-polymorphisms have been found to correlate with PCa risk; however uncertainty remains regarding their clinical utility and how to best incorporate this information into clinical decision-making. Genetic testing is available directly to consumers and both patients and healthcare providers are becoming more aware of this technology. Purchasing online allows patients to bypass their healthcare provider yet patients may have difficulty interpreting test results and providers may be called upon to interpret results. Determining optimal ways to educate both patients and providers, and strategies for appropriately incorporating this information into clinical decision-making are needed.MethodsA mixed-method study was conducted in Utah between October 2011 and December 2011. Eleven focus group discussions were held and surveys were administered to 23 first-degree relatives of PCa patients living in Utah and 24 primary-care physicians and urologists practicing in Utah to present specific information about these assessments and determine knowledge and attitudes regarding health implications of using these assessments.ResultsData was independently coded by two researchers (relative Kappa = .88; provider Kappa = .77) and analyzed using a grounded theory approach. Results indicated differences in attitudes and behavioral intentions between patient and provider. Despite the test’s limitations relatives indicated interest in genetic testing (52%) while most providers indicated they would not recommend the test for their patients (79%). Relatives expected providers to interpret genetic test results and use results to provide personalized healthcare recommendations while the majority of providers did not think the information would be useful in patient care (92%) and indicated low-levels of genetic self-efficacy.ConclusionsAlthough similarities exist, discordance between provider and patient attitudes may influence the effective translation of novel genomic tests into clinical practice suggesting both patient and provider perceptions and expectations be considered in development of clinical decision-support tools.

Primary care providers’ cancer genetic testing-related knowledge, attitudes, and communication behaviors: A systematic review and research agenda

“…53 Ten studies examined PCPs' self-reported subjective or perceived knowledge. 33,37,[42][43][44][45]47,50,51,55 Although there was no overlap in measures, studies consistently reported a lack of PCPs' confidence in their genetic testing-related knowledge. For example, in a cross-sectional survey of 1311 family practitioners, 54% were not confident in their knowledge of genetic testing in primary care including testing for breast cancer risk.…”

“…45 In another cross-sectional survey of 1209 Oregon clinicians, 83% of primary care providers and 76% of obstetricians/gynecologists reported that they were Bnot at allô r Bsomewhat^(vs. Bmoderately^or Bvery^) confident in their knowledge of colorectal cancer genetics. 37 Seven studies also evaluated PCPs' knowledge in terms of their comfort level with discussing aspects of cancer genetic testing with patients, 33,40,43,44,46,53,56 with results suggesting that PCPs rarely felt prepared for the task of counseling patients about genetic testing. For example, a survey of 50 obstetricians/ gynecologists found that 74% did not feel comfortable counseling patients about available genetic testing for Lynch syndrome, and 76% did not feel comfortable counseling patients about such testing criteria.…”

“…33,34,[41][42][43][44][45]51,52,55,56 Of these, five studies examined PCPs' views about ethical, legal, or social implications of testing. 33,41,43,44,55 These studies noted varying beliefs about the effect of genetic testing on patients' anxiety.…”

“…33,34,[41][42][43][44][45]51,52,55,56 Of these, five studies examined PCPs' views about ethical, legal, or social implications of testing. 33,41,43,44,55 These studies noted varying beliefs about the effect of genetic testing on patients' anxiety. Specifically, whereas a cross-sectional survey of 351 family practitioners, internists, and obstetrician/gynecologists found that only 14% of respondents believed that information about breast cancer risk creates unnecessary anxiety for many women, 41 a mixed-method assessment of 24 family practitioners, urologists, and urology residents found that 74% of participants were concerned that increased-risk results could unnecessarily increase patient anxiety.…”

“…Specifically, whereas a cross-sectional survey of 351 family practitioners, internists, and obstetrician/gynecologists found that only 14% of respondents believed that information about breast cancer risk creates unnecessary anxiety for many women, 41 a mixed-method assessment of 24 family practitioners, urologists, and urology residents found that 74% of participants were concerned that increased-risk results could unnecessarily increase patient anxiety. 33 Concerns about privacy issues and discrimination were also documented; for instance, a cross-sectional survey of 220 family practitioners and internists found that 27% were Bvery concerned^about genetic privacy, 43 and qualitative data collected from 24 family practitioners, urologists, and urology residents highlighted concerns that test results could put patients at risk for discrimination by insurance companies and employers. 33 Furthermore, a cross-sectional survey featuring a vignette of a hypothetical low-risk patient found that among 284 family physicians, 65% believed that refusing to refer the patient to genetic services would harm the provider-patient relationship.…”