Counseled Patients Adhere To Screening Program

Genetic counseling dramatically increased the likelihood that patients at risk for colorectal cancer would adhere to a recommended screening program, according to the first results of an ongoing study of patients at the Johns Hopkins Cancer Risk Assessment Clinic. Before receiving genetic counseling, 60% of the 65 patients in the study group were overdue for a routine cancer screening; risk assessment counseling reduced that number to 23%, said Karen Johnson, MS, a genetic counselor at the Clinic. Ms. Johnson reported these data from her study, "The Impact of Genetic Counseling and Testing on Colon Cancer Screening Behavior," during [the May 16th] General Poster Session [of the 1999 ASCO meeting].

Most of the patients (77%) had undergone at least one screening examination before they received counseling. Some had been referred by physicians, while others made appointments on their own because of a family history of colon cancer (or another reason). Although these patients knew or suspected that they were at high risk for the development of colorectal cancer, more than half were overdue for their next exam, Ms. Johnson said.

The mean age of the patients in the study was 55. Although individuals over 50 years of age were more likely to have screening than were younger patients, the difference was not statistically significant. Men and women were equally likely to have had screening both before receiving counseling and after the appointment.

To learn whether counseling would improve adherence, the counselors reviewed the medical records of 176 patients who had come to the Clinic and determined that 65 were eligible for the study, on the basis of the date they were due for their next screening exam. Ms. Johnson and her colleagues contacted these patients and offered them comprehensive counseling. During an appointment, which typically lasted one to two hours, a counselor discussed each patient's family history and risk factors. The counselor then outlined specific screening recommendations, such as which types of tests should be performed and how often. "The focus of genetic counseling is to give patients options for managing their risks and helping them understand their risks," Ms. Johnson said.

"We saw that genetic counseling did make an overall difference in terms of whether patients were following through and getting the screening that they needed," Ms. Johnson said. Since receiving the counseling, 52% of the patients have had a screening examination, 23% are overdue, 17% are within the frequency range but have not had an examination, and 8% have an examination scheduled.

Ms. Johnson and her colleagues plan to follow up on the initial group of patients to see whether they schedule additional screenings at recommended times. They also will contact new patients who have visited the Clinic to add them to the study group.

When the investigators looked at the link between genetic counseling and genetic testing, they found that screening behavior was strongly associated with the patient's mutation status. The patients who had negative results but declined further screening or testing concern Ms. Johnson. "Patients get false reassurance from negative results," she said. Most of the patients (98%) were tested for the APC 11307K mutation, which is common among the Jewish population predominantly represented in the study group. Counselors should stress that a negative result for one mutation does not rule out the possibility that a patient may have a different mutation that would increase his or her susceptibility to cancer, and that routine screening is still important, Ms. Johnson said.