Withdrawal from genetic counselling for cancer

Abstract

Background: A substantial minority of individuals who initially apply for genetic counselling for breast/ovarian cancer withdraw at an early stage from the counselling process. This study investigated the self-reported reasons for early withdrawal and the factors associated significantly with such withdrawal.

Methods: Self-report questionnaires were mailed to 83 women who had applied for genetic counselling for breast/ovarian cancer but who subsequently withdrew from the counselling process (the "withdrawers"). A comparison group of 105 women who had completed the genetic counselling (the "attendees") received a similar questionnaire. The questionnaire assessed sociodemographic characteristics, reasons for applying for genetic counselling, general distress (MHI-5), cancer-specific distress (IES), and cancer worries. For those women who discontinued the counselling, reasons for withdrawal were also assessed.

Results: The primary reasons given for withdrawing from counselling were difficulties in anticipating the consequences of genetic counselling (28%), and worries about being unable to adequately cope with an unfavourable test result (20%). Compared to the attendees, the withdrawers were significantly younger, more frequently asymptomatic, more often the first and only member of the family to apply for counselling, and less worried about cancer. Current levels of cancer-specific distress and general distress were comparable between the two groups.

Conclusion: Younger women, those without a history of cancer, and those who are first in their family to apply are more likely to withdraw prematurely from genetic counselling for breast/ovarian cancer. These withdrawers have no elevated levels of distress. However, a substantial percentage of individuals discontinue counselling due to concerns about their (in)ability to cope with a possible unfavourable test outcome. This suggests that greater attention should be paid to ways of coping with test results during the very first contact with the clinic.