Evaluation of counselling for patients at risk of breast cancer
Authors: Semper, J., van Teijlingen, E. and Haites, N.
Journal: Genetic Counseling
In Britain the lifetime risk of developing breast cancer is ± 1 in 12 and it is the most common cause of death in women aged 35-55. For breast cancer, family history has long been recognised as the most important known risk factor implicated in around 8% of cases. One report estimated that annual incidence of breast cancer world-wide would be more than one million cases by the year 2000 (Miller & Bulbrook, 1986). The many recent advances in medical genetics have made it necessary to constantly up-date information given to families with histories of genetic disease. In 1994. a gene called Breast Cancer 1 (BRCA 1) on chromosome 17q 12-21 was isolated. Mutations in this gene predispose women to breast and ovarian cancer(Miki et al., 1994; Futreal et al., 1994). The discovery of such genes could lead to the eventual introduction of mutation testing and will have implications for the manner in which patients are counselled, in a similar way to the changes in counselling procedures brought about by the discovery of the Huntington's Disease gene. Moves are underway in Scotland to introduce national protocols for the management and counselling of patients at risk of breast cancer. This pilot study was intended to assess current counselling procedures for breast cancer risk from both the patient's and clinician's point of view, in anticipation of the introduction of mutation testing. Assessment of counselling was made before and after the introduction of a Guideline for counsellors. The Guideline is described in detail in an accompanying poster, being a checklist to assist counsellors in meeting with patients. This study was confined to women who had, or were believed by the Clinical Geneticists Clinic (Aberdeen), as having a family history of breast cancer. The aims of the project were to determine by means of questionnaire and the Hospital Anxiety and Depression Scale: (i) Patient's perception of the counselling session (ii) Counsellor's perception of counselling session & the patient's level of understanding (iii) Level of anxiety & depression in patients before and after the counselling session (iv) Differences in counselling styles & effect on patient's understanding. Two similar sized groups of patients were randomly recruited, both groups were administered the same questionnaire and HADS, with a Guideline introduced prior to the testing of the intervention group. The Guideline was in the form of a checklist of points to be covered in the counselling session to help ensure that all patients were given the same basic information. This pilot evaluation of counselling methods for patients at above average risk of breast cancer showed that in a sample group of women, both counsellors and patients agreed that there was understanding of many of the difficult concepts communicated during the counselling session. A high level of satisfaction with the counselling process was measured, both counsellors and patients agreed with this. No significant differences were found in patient's perception of the counsellors. There were no significant changes in results after the introduction of the guideline, although one counsellor did feel that the use of the guideline helped ensure that she had covered all the necessary points during the session. Women were shown to be more anxious before attending for counselling, this did not appear to affect their levels of understanding or information uptake. The counselling session appeared to reduce anxiety in the patient. Differences in counselling style had no significant effect on any of the factors examined, although it should be noted that both counsellors in this project were women, discussing problems with other women.
Preferred by: Edwin van Teijlingen