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© 2002 American Society for Clinical Oncology Identification and Referral of Families at High Risk for Cancer SusceptibilityByFrom the Clinical Cancer Genetics and Human Cancer Genetics Programs, Comprehensive Cancer Center, and Division of Human Genetics, Department of Internal Medicine, The Ohio State University, Columbus, OH. Address reprint requests to Kevin Sweet, MS, James Cancer Hospital, 410 West 10th Ave, 303 East Doan, Columbus, OH 43210-1228; email: sweet-3{at}medctr.osu.edu
PURPOSE: Obtainment of family history and accurate assessment is essential for the identification of families at risk for hereditary cancer. Our study compared the extent to which the family cancer history in the physician medical record reflected that entered by patients directly into a touch-screen family history computer program. PATIENTS AND METHODS: The study cohort consisted of 362 patients seen at a comprehensive cancer center ambulatory clinic over a 1-year period who voluntarily used the computer program and were a mixture of new and return patients. The computer entry was assessed by genetics staff and then compared with the medical record for corroboration of family history information and appropriate physician risk assessment. RESULTS: Family history information from the medical record was available for comparison to the computer entry in 69%. It was most often completed on new patients only and not routinely updated. Of the 362 computer entries, 101 were assigned to a high-risk category. Evidence in the records confirmed 69 high-risk individuals. Documentation of physician risk assessment (ie, notation of significant family cancer history or hereditary risk) was found in only 14 of the high-risk charts. Only seven high-risk individuals (6.9%) had evidence of referral for genetic consultation. CONCLUSION: This study demonstrates the need to collect family history information on all new and established patients in order to perform adequate cancer risk assessment. The lack of identification of patients at highest risk seems to be directly correlated with insufficient data collection, risk assessment, and documentation by medical staff.
FAMILY HISTORY IS an essential tool for cancer risk assessment. At least 5% to 10% of all cancers have a hereditary basis. Identification of families demonstrating a hereditary cancer pattern is important for presymptomatic cancer screening and detection, including the provision of genetic consultation and testing if appropriate. With the advent of molecular testing for cancer predisposition syndromes, the use of a multigenerational family tree to quantify risk becomes ever more important. Recognition of familial susceptibility to cancer allows the use of gene testing to identify carriers before the onset of disease and to reduce unnecessary screening for noncarriers. Decisions about cancer prevention, detection, and treatment can be balanced against potential cancer risks for family members. The cancer family history should be taken as part of routine patient care by both primary care physicians and oncologists and at a minimum should consist of first-degree relatives (parents, children, and siblings) and second-degree relatives (grandparents, aunts, uncles, nieces, and nephews).1 Details such as the site of the primary tumor, the age of onset, type of treatment, and the diagnosis of additional primary tumors should be collected. It is recognized that health care providers have a medicolegal duty to obtain sufficient family history information to provide a cancer risk assessment.2 In turn, those families who are thought to have hereditary cancer must be appropriately informed and offered a choice of intervention options, including genetic counseling. Documentation of risk assessment and the patient’s choice of intervention is necessary. Counseling and any subsequent gene testing should be conducted in accordance with established guidelines.3,4 Often, however, the capture of family history information and cancer risk assessment fails to meet the medicolegal standard. Recent studies have documented insufficient collection of family history information by primary care providers.5-7 Suggested barriers include inadequate time and failure on the part of the providers to realize the importance of the family history for cancer prevention. This lack of capture of family history information, in turn, limits accurate risk assessment and appropriate intervention. Even more surprising has been the incomplete documentation of family cancer history and lack of risk assessment in the specialty oncology setting. Oncology professionals should recognize that family history is a necessary part of comprehensive cancer risk assessment and as appropriate as asking about other personal risk or environmental factors as contributors to the patient’s cancer.4,8 However, insufficient use of family history information and provision of risk assessment in the oncology setting has been a longstanding problem. Warthin,9 the first to describe hereditary nonpolyposis colorectal cancer, demonstrated that less than 1% of oncology patients seen in the surgical setting had family history information taken in 1931. Almost 50 years later, Lynch et al10 identified an improved but still low attainment rate (38%) of charted family history information in the oncology setting. Limited family history and inadequate risk assessment affect the high-risk cancer patients and their families, who would most benefit from additional intervention, such as genetic consultation. Moreover, recent legal opinion on the identification of hereditary cancer families and the duty of the physician to warn not only the patient but also extended family members suggests that appropriate hereditary risk assessment should be part of standard oncology care.11 The purpose of this study was to review the medical records of a subset of patients who were seen at a comprehensive cancer center ambulatory clinic and who voluntarily entered their family history information into a touch-screen family history computer program (Jameslink) over a 1-year time period (n = 362). Medical record information and the Jameslink entry were compared for documentation of family history and risk assessment. The number of high-risk patients who were recommended for genetic consultation was ascertained as an indirect measure of the initiation of intervention. Impediments to the assessment and referral process were identified. Practical implications of this data for both the high-risk cancer patient and the physician are emphasized.
Jameslink The clinical cancer genetics staff developed a touch-screen family history computer program (Jameslink) for self-reported family history data acquisition. A summary of the experiences and data from the first year has been published.12 The automated questionnaire consists of a series of branched-point decision-making screens. The patient is asked to enter his or her name and mailing address at the beginning of the questionnaire in order to receive a cancer-risk assessment letter specifically tailored to his or her family history information. Subsequent screens allow the patient to enter a personal and/or family history of cancer. Risk assessments are based solely on the information entered. All users of the computer program receive a tailored letter within 10 days stating a qualitative level of risk and appropriate recommendations for screening. Patients classified as high risk [hereditary cancer syndrome or early-onset cancer] receive a recommendation to seek cancer genetic counseling.
Risk Assignment
The high-risk group was designed to identify individuals or families that meet or exceed a 10% likelihood of finding a germline genetic mutation in a cancer susceptibility gene. This 10% figure was initially established by the American Society of Clinical Oncology and remains a consistent risk threshold used to generate discussion of available presymptomatic genetic testing.4 The following criteria for hereditary cancer syndromes were used: those published by the managed care organization Kaiser Permanente; the American College of Medical Genetics criteria; the NCCN guidelines for genetics/familial high-risk cancer screening; and "The Concise Handbook of Family Cancer Syndromes."3,13-15 Additional high-risk individuals were defined as families with a proband with breast or colon cancer before age 45. Although the majority of breast cancers diagnosed before age 45 are not due to a hereditary susceptibility, recent data collected by Myriad Genetics Laboratories indicate a 9.7% risk for a BRCA1 or BRCA2 mutation for a non-Jewish woman with breast cancer under age 50 with no family history of breast or ovarian cancer.16 Previous population studies suggest somewhat lower estimates, although these studies were based on risk for BRCA1 mutation alone.17,18 Individuals of Jewish descent with breast cancer diagnosed before age 50 are also considered early-onset cancer patients and are offered genetic counseling.13 For users with colon cancer diagnosed before age 45, our criteria were based on the Bethesda guidelines, which recent evidence suggests to be the most sensitive criteria for detecting individuals and families suspected of having a hereditary colon cancer syndrome.19,20 General criteria used to determine possible indications for referral for cancer genetic counseling for high-risk individuals in our program were as follows:
Complete referral algorithms developed by our center are being published separately (Hampel et al, manuscript submitted for publication). The occurrence of one or two cases of specific cancers (ie, colon, breast, melanoma, and thyroid) in a family can increase the risk for certain family members to such a degree that additional screening is recommended. These individuals were placed in the second category, moderate risk. This category included individuals with a relative risk of 2.0 or greater for the development of any cancer (Hampel et al, manuscript submitted for publication). These moderate-risk individuals received recommendations in their tailored letter for increased cancer surveillance appropriate for the given family history. The third group contained individuals at average risk or the same risk for developing cancer as the general population and for whom the American Cancer Society screening recommendations apply. The final group included the Jameslink entries that had inadequate information entered to provide risk assessment and were thus considered incomplete.
Study Participants Table 1 shows the distribution of new and returning high-risk patients by year initially seen. Some of these patients were first seen in this oncology setting starting in 1990. Most patients were seen at least annually at the clinic. Due to an emphasis on breast disease, 92% of the patients in this cohort were female. In all, 72 (20%) of 362 of these patients were initially seen by oncology staff before 1996, the year that an active cancer genetic service became available on a clinical basis at our Comprehensive Cancer Center. Therefore, the majority of these patients (80%) were seen for their initial oncology evaluation at this ambulatory clinic after availability of cancer genetic consultation services at this institution. During the 10-year time period, 22 different surgical and medical oncologists were managing the patient care of the study cohort.
Chart Review The medical records of the cohort of 362 Jameslink users were reviewed for family cancer history documentation. Documentation from the record was noted that was pertinent to hereditary cancer risk assessment, patient risk, or referral for genetic consultation. This included a review of all data acquisition forms used, history and physical examination notes, physician notes, and consultation notes. Records were categorized based on available family cancer history information. Category A was defined as records with no family history information. Category B contained records with family history documentation only in physician notes. Category C contained all records that utilized an intake questionnaire to capture family cancer information. The medical record and the Jameslink entry were compared for family history information and risk assessment. Referrals for genetic consultation were noted as a measure of discussion of additional intervention options and compared with the level of risk assessment assigned by the clinical cancer genetics staff. For those patients with a personal cancer history who met high-risk criteria by Jameslink assessment, the pathology report was also reviewed. This study was approved by the institutional review board.
Of the 362 Jameslink entries, 165 were assigned to an increased-risk category (high or moderate risk) due to personal or family cancer history (Fig 1). Fifty-seven (16%) of 362 entries were consistent with a hereditary cancer syndrome. Forty-three entries met criteria for early-onset breast cancer. An additional patient met criteria for early-onset colon cancer. Lastly, 64 entries were classified at moderate risk because of an affected first-degree relative or multiple cancer occurrences in the family. Of the 101 Jameslink entries assigned to the high-risk category, the clinical records confirmed the family cancer history for 69 individuals (28 with hereditary cancer syndrome and 41 with early-onset cancer). Of these, only 14 individuals had documentation in the medical record for being at increased risk based on personal or family history information (12 with hereditary cancer syndrome and two with early-onset cancer). Only seven (6.9%) had documentation of a referral for genetic consultation in the medical record (five with hereditary cancer syndrome and two with early-onset cancer). Each of these seven individuals received a full genetic consultation. Significant differences were noted in comparing the Jameslink entry and findings in the medical record. The majority of records (308 of 362, or 85%) had some entry, however brief, of family history information. There was no documentation of cancer family history in 54 (15%) of the charts (category A). Fifteen of these patients were categorized as high risk by Jameslink criteria (Table 2), with the remaining 36 patients at moderate or average risk. An additional three were found to be incorrectly assigned by genetics staff when reviewed. One individual had the diagnosis of neurofibromatosis and had been recently treated for papillary thyroid cancer. Neurofibromatosis is a well-known hereditary condition that predisposes to malignancy and was included here as a hereditary cancer syndrome although it is not included in the NCCN guidelines. There have been no referrals of category A patients to the clinical cancer genetics staff. Without family history evidence or risk information in the medical record to compare, these individuals’ cancer risk remains uncorroborated.
Fifty-nine (16%) of 362 charts were in the category B group. The physician’s note served as the single record of family history information, many times only noting if the family history was positive or negative. Of these 59 charts, there were 15 confirmed Jameslink assessments of high risk (25.4%). Three additional assessments were found to be incorrectly assigned by the genetics staff. Of the eight assessed as a potential cancer syndrome, only four had sufficient family history in the chart to corroborate the Jameslink assessment (Table 2). This included six entries that met criteria for hereditary breast-ovarian cancer syndrome, and one of the six had documentation of referral for genetic consultation by the surgical oncologist. Personal and family history of breast cancer was the primary referral reason, but acknowledgement of Jewish ethnicity was absent in the physician record although stated in the computer entry. This individual was found to carry the Jewish founder mutation of the BRCA2 gene. In all, 10 of the 18 high-risk individuals had sufficient information in the chart to confirm their risk. Only three were documented by the physician as high risk in the records, with one documented referral. In the majority of records (249 of 362, or 69%), a family history data acquisition form was used (category C). Twenty-seven patients met criteria for a hereditary cancer syndrome in this group. The family cancer history was confirmed in 23 (85%) of the 27 on record review (Table 2). One record indicated a known BRCA2 gene mutation status in the proband’s sister. This information was found only in medical records received from an outside institution, with no indication of high-risk status in the intake forms or physician notes and no documentation of referral for genetic consultation. An additional 31 patients in category C met criteria for early-onset cancer, of whom 30 were confirmed on record review. Only 11 individuals in the high-risk group of 58 were noted as high risk by the physician in the medical records. Four individuals with confirmed risk for hereditary cancer and two with confirmed risk for early-onset breast cancer status from category C had documentation of referral for genetics consultation. A number of data acquisition forms were used by the oncology staff over the 10-year period (1990 to 2000) to collect personal and family history information (Table 3). Some records contained multiple family history forms. With one exception, these forms did not prompt for specific types of cancer or age at cancer diagnosis. Fundamental indicators of hereditary cancer syndromes, such as multiple primary tumors, ethnicity, and history of second-degree relatives, were not addressed, most likely reflecting the general state of knowledge at the time. For example, the surgical oncology staff used three separate forms during this time period for family history collection (Table 3). Form 1 was used from 1990 to 1996. Form 2 was primarily used from 1996 into 1999. In early 1999, a comprehensive form was developed collaboratively by surgical oncology, medical oncology, and clinical cancer genetics staff for use in this clinical setting and reflects the advancing knowledge of cancer genetics. The comprehensive form (Fig 2) collects data on ethnicity (including Jewish ancestry) and allows one page for family history. It queries for relatives diagnosed with specific cancers (breast, ovarian, uterine, cervical, prostate, colorectal, lung, stomach, liver, pancreatic, melanoma, sarcoma, leukemia, and lymphoma) and asks age at diagnosis for each family member with cancer. In all, 21 out of the 127 new patient records contained the comprehensive form. Of these, two records had sufficient family cancer history on the data form to meet criteria for hereditary breast-ovarian cancer syndrome; one record was consistent with Amsterdam criteria for hereditary nonpolyposis colorectal cancer; an additional record met criteria for early-onset breast cancer. There were no referrals for genetic consultation in any of the patient records that contained the comprehensive form.
We found that in the high-risk category C group, there was no significant difference between which data acquisition forms were used and the presence of physician risk assessment in the medical record. Specifically, family cancer history was corroborated in 53 out of 58 of these high-risk records but assessed by the physician as high risk in 11 of the patient charts (Table 2). The majority of these records (39 of 58) were for return patients, ie, patients seen at least once before May 1999. A single data acquisition form was used only at the time of the initial oncology consult in 29 of the return patient records. Only 10 records (17%) had more than one history form in the chart, signifying family history was also taken on return visits. Of the 10 records with multiple forms, one patient first seen in 1996 had three data acquisition forms in the chart, including the comprehensive form. Twenty-two different physicians were involved in the patient care of the study cohort of 362. The clinical records corroborated the computer entry of family cancer history for 69 high-risk individuals. Of these, 14 individuals had assessments noting their high-risk status as recorded by seven different physicians. Five surgical oncologists identified 11 of these high-risk individuals, with the remaining three patients recognized by two medical oncologists. Of the seven patients given the additional intervention of referral for cancer genetic consultation, the medical oncologists referred all three of their recognized patients while three surgical oncologists referred four of their 11 recognized high-risk individuals. All of the five genetic referrals with hereditary cancer were return patients. Both patients referred for early-onset cancer were new patients. Eleven individuals were incorrectly placed in the high-risk classification by genetics professionals. These individuals were all incorrectly identified as being at risk for a hereditary cancer syndrome and did not meet algorithm criteria for a hereditary classification. Genetic staff had overassessed the entries, due to a desire not to underestimate risk. Because the algorithms were already constructed as a screening tool rather than a diagnostic tool, additional leniency was not desirable. An additional two entries were incorrectly assigned because of assessment based on the patient’s self-report of breast cancer as compared with the verified pathologic diagnosis of ductal carcinoma-in-situ. Genetic risk assessment models are based solely on invasive cancer occurrences.
Several findings from this study have implications for practitioners. First, a significant number of individuals (31%) had little or no family history information documented in their medical record. While this 69% completion rate is a considerable improvement over Lynch’s 38% completion rate in 1979,10 it is still below a desired goal of 95% to 100%. When family history was taken, it was generally completed on new patients only, and it was not routinely updated. This was most evident in category C, where only 17% of the charts of high-risk patients revealed that family history was re-evaluated at follow-up sessions with the use of a data acquisition form. This suggests that if the initial family history was considered negative for hereditary cancer, it was not updated or reviewed on subsequent visits. Previous studies with family physicians in community practice reveal a similar pattern, with family history taken more often during new patient visits (51%) than established patient visits (22%).5,21 For 254 practicing physicians in Alabama, family history uptake was fairly good (71%) on new patients. However, only 52% took family history on an annual basis and they rarely updated when other family members developed cancer.22 Insufficient time to take family history information has been cited as a problem.6 Recently, Acheson et al5 noted that less than 2.5 minutes were given to discussion of family history in the average community family practice setting. As family history is dynamic, it may be misleading and incomplete if only taken once when the patient is new and not pursued over time.7 Obtaining a thorough family history and providing periodic updates during subsequent visits not only empowers the patient to become more actively involved in this process but allows for continued risk assessment by the physician. A second finding was the lack of detail recorded on family members of patients in regard to the types of cancers and ages of onset. In our study, family history of a single index cancer of concern (ie, breast cancer in a breast disease clinic) was most often noted, while other relevant cancer history (ovarian, colon, melanoma) was infrequently documented. For category B, this was often done with notation of the history as positive or negative for the particular index cancer. For category C, the record contained evidence to corroborate the computer entry but usually only as a listing of the cancers in the family and was infrequently accompanied by ages at diagnosis. Adequate information about generations beyond the immediate family was usually absent in the record. Since a single case of hereditary cancer is likely to seem similar to the more common sporadic version, additional family history may be the only means available to identify the underlying nature of the cancers in a family. The narrowed focus of the physician in asking for family cancer history information may be a direct reflection of the data acquisition forms used to prompt this information. It was evident that when an intake form was used, the family history was usually noted by the physician in the record. This led to more available data in category C charts to compare to the Jameslink entry for risk assessment. No direct correlation was found between the type of data acquisition form used and subsequent documentation by the physician of high-risk status or initiation of intervention, such as referral for genetics consultation. The older forms used were inadequate for capturing family history information suitable to complete a risk assessment (Table 3). However, they did serve as a historical reflection of the changing understanding in the oncology field as to what constitutes hereditary cancer risk. This suggests an effort by the oncology staff to keep current with the advances in the field of cancer genetics and the use of family history in risk assessment. A collaboratively developed form enables the capture of the necessary family cancer history information on which complete risk assessment can be based. The third finding emphasizes the misunderstanding that exists on the part of the medical provider as to what constitutes hereditary risk. Missed opportunities to identify familial and hereditary cancer syndromes have been noted previously.10 In a separate study, only 27% of family practitioners felt confident they could adequately take a patient family history and decide on appropriate patient referral (recognition of the high-risk family).6 This was most evident in our category C grouping, where family history suggested a hereditary cancer syndrome but was not assessed as such. For example, three hereditary cancer syndrome patients had a comprehensive form in their charts; none of these three had documentation of risk assessment or referral. Review of one of these records illustrated that the family history captured both on the comprehensive form and the computer entry was consistent with Amsterdam criteria for hereditary nonpolyposis colorectal cancer. However, the physician had documented only a negative family history for breast cancer, with referral of the patient for colonoscopy. There was no indication in the record of the high-risk status of this patient or the need for the additional interventions of endometrial cancer screening and genetic consultation. Of the seven patients appropriately referred to cancer genetics, five were at risk for hereditary breast-ovarian cancer syndrome and two for early-onset breast cancer. This suggests that the oncology staff were more knowledgeable about the importance of early-onset breast cancer and the coexistence of breast and ovarian cancers due to the high number of breast-disease patients in the ambulatory clinic, but that they may be less knowledgeable about other hereditary cancer syndromes. The computer entry provided the information that some of these individuals were found to be at hereditary risk for syndromes other than hereditary breast-ovarian cancer. Presence or absence of Jewish ethnicity was infrequently documented in the record, even with the existence of breast-ovarian cancer in the family. Of the 69 high-risk individuals with congruent family histories between the medical record and the computer entry, only 14 (20%) had a notation in the medical record acknowledging a high risk. When identified appropriately in the medical record, the patients had a 50% likelihood of being referred for genetic consultation. Appropriate documentation of family history information and assessment by medical staff seems to be directly correlated with a recognized need for referral for genetic consultation. There is an obvious need for simple and clear referral guidelines for oncology professionals and primary care physicians alike.23 Criteria for a number of hereditary cancer syndromes already exist in the literature.13-15 Moreover, the NCCN is in the process of developing guidelines for hereditary cancer syndromes, such as hereditary breast-ovarian cancer syndrome, Li-Fraumeni syndrome, Cowden syndrome, hereditary nonpolyposis colorectal cancer, and familial adenomatous polyposis. Further work needs to be done to develop a standard set of referral criteria that would encompass each of the known hereditary cancer syndromes. Even the genetic professionals err in risk assessment, usually by overestimating the likelihood of a hereditary cancer syndrome. Manual cancer risk assessment had a positive predictive value of 81% in this study. Automation of the risk assessment algorithms would improve the positive predictive value to 96.6% by eliminating interassessor variability. The lack of referral and documentation of risk status in the physician record may be exaggerated by physicians’ consideration of insurance discrimination as well as privacy and confidentiality issues for the patient. The sensitive nature of genetic information implies that it be handled differently than other medical chart information. Moreover, it is often at the request of the patient that this information not be included in the chart. The concern has been that this information may have an impact not only on the patient in regard to insurance coverage but also on the extended family members as well. However, the family history information and documentation of risk assessment and initiation of interventions should be considered separately from that of placement of specific presymptomatic or familial genetic testing information in the medical record. Most insurance companies already have access to and may utilize family history information in underwriting policies. It may benefit the patient to identify those at highest risk for development of cancer based on family history and to be referred appropriately for counseling on risk assessment and preventive strategies, including genetic counseling. Although issues of confidentiality will continue to change and warrant scrutiny, the identification of the at-risk patient, creation of awareness, and initiation of maximum appropriate care is of benefit to the patient. Finally, the lack of response to the written risk assessment sent to high-risk patients identified by the Jameslink entry was surprising. Of those individuals with a history consistent with a hereditary cancer syndrome (57 of 362, or 15.7%) or history of early-onset cancer (44 of 362, or 12.2%), only seven were seen for genetic counseling even after direct written notification of risk level by clinical cancer genetics staff. One barrier to following through with counseling may be lack of financial resources with which to pay for genetic risk counseling services (medical counseling), which may not be covered completely by insurance. Culturally determined beliefs and attitudes to genetic testing may act as a barrier. Current provision of genetic services may be incompatible with the beliefs of certain ethnic cultures, such as the Asian and Middle Eastern people who place more emphasis on problem solving within the family rather than reliance on, and disclosure to, outside sources and the medical community.24 As there may be cultural stigma associated with finding out an individual’s cancer risk, this information is not shared with other family members.24 In addition, the perceived threats of insurance discrimination associated with genetic counseling and gene testing may play an important role. Such response would influence the action of individuals in seeking genetic testing and health prevention measures.25 It is more likely, however, that the tailored message was insufficient to produce the desired change without reinforcement from an involved clinician when delivered in isolation to the patient. Collaboration between genetics and oncology staff is critical. Particular attention needs to be given to the construction and effectiveness of tailored Jameslink messages and their role in promoting the desired modification of health behavior (ie, increased patient response to the recommendations for counseling and screening). Various theories of behavior modification in response to tailored risk communication have been proposed.26 An individual’s perception of risk seems to have a major influence on their health behavior. The method in which risk is communicated may have a significant impact on behavioral change. A fear appeal is a persuasive message that arouses fear and motivates behavior change. Any form of verbal or written risk assessment relies on fear appeal theory.27 Fear seems to be a great motivator as long as individuals believe they are able to protect themselves from the perceived threat. If they believe themselves to be susceptible to the threat, they are motivated to begin an evaluation of the efficacy of the recommended response. If the threat is perceived as irrelevant or insignificant (low perceived threat), then there is no motivation to proceed and the fear appeal is ignored. If the threat is perceived as serious and relevant, they are motivated to take some action to reduce the fear. When people believe they are able to perform an effective recommended response against the threat, they think carefully about the recommended responses advocated in the persuasive message and adopt those as a means to control the danger. When people doubt whether the recommended response works, they focus on eliminating their fear through denial, defensive avoidance, or reactance. If no information is provided about the efficacy of the recommended response, individuals will rely on past experiences and prior beliefs to determine perceived efficacy. The stronger the fear appeal and the higher the response efficacy, the greater the change in attitude, intention, and behavior. Further work is needed to maximize the impact of the tailored messages and to study their influence on the patient’s perception of risk. Adequate capture of family cancer history and recognition of hereditary susceptibility should be the standard of care for all patients in an oncology practice. The rise of molecular diagnostic testing demands that oncology professionals play a vital role in the primary identification and referral of high-risk cancer families. The issue has become more than just a practical matter but one of liability. Legal claims of medical negligence against health care providers have occurred due to a lack of attention to the family history and lack of provision of detailed counseling.2,11 In this new age of cancer genetics, medical practitioners have become the guardians of targeted cancer surveillance and prevention strategies.8,28 The process can only be effective if those patients at high risk are appropriately identified and advised of all available intervention strategies, including genetic counseling.
Supported by National Cancer Institute grant no. P30CA16058 to the Ohio State University Comprehensive Cancer Center. Jameslink is a registered trademark of the Arthur G. James Cancer Hospital and the Ohio State University. The authors acknowledge Leigha Senter for assistance with Jameslink data entry and graphics on the manuscript. They also acknowledge the physicians and staff at JamesCare, an ambulatory oncology center of the Arthur G. James Cancer Hospital, Columbus, OH, whose support made this study possible.
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Fry A, Campbell H, Gudmunsdottir H, et al: GP’s views on their role in cancer genetics services and current practice. Fam Pract 16: 468–474, 1999 7. Worthen H: Inherited cancer and the primary care physician. Cancer 86: S2583–S2588, 1999 8. Klimberg VS, Galandiuk S, Singletary ES, et al: Society of surgical oncology: Statement on genetic testing for cancer susceptibility. Ann Surg Oncol 6: 507–509, 1999[CrossRef][Medline]
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Lynch H, Follett K, Lynch P, et al: Family history in an oncology clinic. JAMA 242: 1268–1272, 1979 11. Lynch H, Paulson J, Severin M, et al: Failure to diagnose hereditary colorectal cancer and its medicolegal implications: A hereditary nonpolyposis colorectal cancer case. Dis Colon Rectum 42: 31–35, 1999[CrossRef][Medline]
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Westman J, Hampel H, Bradley T: Efficacy of a touchscreen computer based family cancer history questionnaire and subsequent cancer risk assessment. J Med Genet 37: 354–360, 2000 13. Daly M: NCCN practice guidelines: Genetics/familial high-risk cancer screening. Oncology 13: 161–186, 1999[CrossRef] 14. Kutner SE: Breast cancer genetics and managed care: The Kaiser Permanente experience. Cancer 86: S1750–S1754, 1999
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
