Contact: Albert de la Chapelle, (614) 688-4781
Written by Darrell E. Ward, (614) 292-8456;
[email protected]
HOW MUCH COUNSELING IS ENOUGH DURING GENETIC TESTING FOR CANCER?
COLUMBUS, Ohio - People undergoing genetic testing for hereditary colon cancer may need less counseling than formerly thought, new research shows.
The study attempted to better define the amount of counseling needed by people seeking genetic testing for the most common form of hereditary nonpolyposis colon cancer, or HNPCC.
If too little counseling is provided, the person seeking testing may subsequently suffer needless anxiety and depression. Providing more counseling than necessary, however, adds additional expense to the process.
"Our study showed that a pre-test counseling session is absolutely necessary, and that a counseling session must accompany the subsequent disclosure of the test result," said Albert de la Chapelle, co-author of the study and director of cancer genetics at Ohio State University's Arthur G. James Cancer Hospital and Richard J. Solove Research Institute.
"But we also learned that a counseling session beyond that is unnecessary for the great majority of people."
The study, which involved de la Chapelle and a team of researchers, was published in a recent issue of the Journal of Medical Genetics. It involved 271 high-risk members of 36 families in Finland who were seeking genetic testing for HNPCC.
The research sought to determine whether less counseling was needed for HNPCC than is needed for Huntington's disease, a neurodegenerative disease for which there is no treatment.
The procedure for counseling people undergoing genetic testing for Huntington's disease is often used as a model for genetic testing of other disease. It usually provides a minimum of two pre-test counseling sessions and several post-test sessions, combined with psychological support.
The protocol tested by de la Chapelle provided a single, hour-long, one-on-one pre-test counseling session, a two-week period of reflection, and a later test-disclosure and counseling session at which the test results and their implications were discussed.
Study participants were then sent a questionnaire one month and one year after testing for their opinions about whether the protocol was sufficient.
"We wanted the participants to evaluate this protocol in terms of their need for psychological support at different phases of the testing process," said de la Chapelle.
In the end, none of the respondents suggested major changes to the protocol. The one-month and one-year follow-ups revealed that 89 percent and 85 percent of participants felt that the single counseling session that accompanied disclosure of the test results was sufficient.
However, 53 percent of respondents said they might have used professional psychological support along with the counseling if it had been offered. The data also suggested that women with children might have used this support more than others.
Respondents said they felt little need for support one year after receiving the test result. Instead, that need was greatest when making the decision to be tested, when waiting for the results, and especially, at the moment when the test results were given.
"Our findings indicate that offering one post-test session is adequate, provided that a second session or psychological support is available if needed," said de la Chapelle.
"What is important here is that we provided face-to-face counseling between the patient, or counselee, and the person giving the counseling," he said. "Also, there must be enough time taken to do the pretest session very well, so that the patient knows what he or she is getting into. Lastly, it is essential that there is support at the disclosure session."
HNPCC can involve several cancers mainly of the colon, uterus, and stomach. The cancers are usually curable if caught early, but fatal if caught late. People at risk of the disease because of a family history of colon cancer can be tested for HNPCC-causing gene mutations. If a mutation is absent, the person has a normal risk for cancer; if a mutation is present, regular surveillance exams can identify precancerous changes early and prevent the disease.
The study was supported by grants from the Finnish Academy, the Finnish Cancer Society, and U.S. National Institutes of Health.
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