Withdrawal from Genetic Counselling for Cancer

Hereditary Cancer in Clinical Practice

Neil Aaronson²  Laura van't Veer¹  Senno Verhoef¹  Anja van Rens¹  Gea Wigbout¹  Eveline Bleiker² 

[1] Family Cancer Clinic, Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands;Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands

关键词: distress;    non-participation;    breast cancer;    genetic counselling;   

Others  :  812345
DOI  :  10.1186/1897-4287-3-1-19

 received in 2005-01-31, accepted in 2005-02-10,  发布年份 2005

【 摘 要 】

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.

   

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