Family history data were collected from progress notes and designated family history spaces on flow sheets or chart covers. Family histories consisting only of “none” or “noncontributory” were counted only when they clearly referred to a specific condition. Family births or deaths recorded in a psychosocial context also were not counted as part of the family history unless death from a specific disease was mentioned. The first dated family history was considered to be first for the purpose of this study. Date of birth, race, sex, current primary care provider, if any, and the date first seen in the practice were recorded. The current primary care provider was determined by the physician seen for the majority of recent visits and/or notations in the chart at acute visits. Data collected for the primary care providers included practice site, sex, level of training, and years in practice. Variables collected from family history information included: date of first family history; date of most recent family history; presence of a genogram, presence of a patient-completed family history self-questionnaire; whether any mention was made, positive or negative, of cancer or colon polyps; and whether there was a positive family history of cancer or colon polyps. For individuals with a positive family history of cancer or colon polyps, all details recorded in the chart were abstracted; these included site of cancer or polyp, relationship to patient, age at diagnosis, and age at death. The data were entered into an Access 97 database and stored separately from chart number identifiers. All analyses and tests were done in SAS version 6.12.
Results
Demographic data from the 500 patients whose charts were audited are presented in Table 1. Ninety-seven percent of patients had a primary care provider, which included 60 physicians and 3 nurse practitioners. No significant associations were seen with practice site, sex, or level of training of the provider and the presence of family history information in the chart.
Most patients (89%) had some family history information in the chart and 63% had a genogram. This did not differ by sex or race of the patient. Fifty-seven percent of patients supplied family history information at the first visit to the office; 59% of these patients had no family history data recorded on subsequent visits. Only 31% of charts had updated family history information Table 2. For patients who had been in the same practice for at least 5 years and had some family history in the chart, 20% had some updated information within the past 3 years.
Of the 500 charts, 276 (55%) recorded a family history of cancer, positive or negative. Two hundred fifteen patients (43%) had a positive family history of cancer, with a total of 356 relatives affected. The site of cancer was listed for 88% of all family member cancers, with breast, colon, lung, and prostate being the most common cancer locations. The specific relative was identified in 92% of cases, with most being first (51%) or second (37%) degree. Although degree of relative and cancer location were usually recorded, age at diagnosis was listed for only 8% of affected relatives, and age at death was identified for 19% of relatives with cancer.
For patients with affected first-degree relatives, the group with the greatest clinical significance, primary care providers identified the location of the cancer in 93% of cases but listed the ages at diagnosis and death in only 7% and 31%, respectively Table 3. Only 7 medical records (1.4%) had any mention of a family history of polyps; of these, 5 (1%) were positive. None listed an age at diagnosis. Five patients in our study met the American Society of Clinical Oncology criteria to be evaluated for genetic breast and ovarian cancer syndrome, and no patients met the criteria for hereditary nonpolyposis colon cancer.
The 2 community practices intermittently used patient self-administered medical intake questionnaires. In our sample, 31 of 500 patients (6%) had a questionnaire in the chart. All patients who completed questionnaires had family history data in their charts. Use of a questionnaire was associated with a greater likelihood that the physician recorded the age of diagnosis for a relative with cancer, although this did not reach significance (20% vs 7%).
Discussion
Despite our finding that providers are documenting family histories in most charts, very few are recording the age of diagnosis in relatives diagnosed with cancer. Age of diagnosis plays a critical role in determining screening recommendations and identifying patients with possible genetic syndromes. For example, the Amsterdam criteria used to identify families with hereditary nonpolyposis colon cancer include knowing whether 1 of 3 relatives with colorectal cancer was diagnosed at younger than 50 years. Breast and ovarian cancer syndrome should be suspected when breast and/or ovarian cancer is diagnosed in 2 first-degree relatives younger than 50 years.15