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What do women really want to know? Motives for attending familial breast cancer clinics
  1. C J van Asperen1,
  2. S van Dijk2,
  3. M W Zoeteweij1,
  4. D R M Timmermans3,
  5. G H de Bock2,
  6. E J Meijers-Heijboer4,
  7. M F Niermeijer4,
  8. M H Breuning1,
  9. J Kievit2,
  10. W Otten2
  1. 1Department of Human and Clinical Genetics, Leiden University Medical Center, Leiden, The Netherlands
  2. 2Department of Medical Decision Making, Leiden University Medical Center, Leiden, The Netherlands
  3. 3Department of Social Medicine, VU University Medical Center, Amsterdam, The Netherlands
  4. 4Department of Clinical Genetics, University Hospital Rotterdam, The Netherlands
  1. Correspondence to:
 Dr C J van Asperen, Department of Human and Clinical Genetics, Leiden University Medical Center, K5-R, PO Box 9600, 2300 RC Leiden, The Netherlands;

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Genetic counselling is a highly specialised service in medical care. The service is expensive and its task is comprehensive, including “starting a communication process which deals with the human problems associated with the risk of occurrence of a genetic disorder in a family”.1 For a breast cancer service, this process is an attempt to assist the counsellee in understanding the medical facts, the mode of inheritance, the risk of getting breast and/or ovarian cancer (again), and the implications for daily life. Options for dealing with the risk are discussed and counsellees, depending on their own cumulative risk of getting breast cancer, are presented with a choice of surveillance of their breasts, DNA testing, or prophylactic mastectomy, either with or without oophorectomy.

An ever increasing number of women from breast cancer families visit familial cancer clinics for genetic counselling. Because of the comprehensive task of genetic counselling and the increasing numbers of appointments, it is important that the geneticist optimally and efficiently recognises the informational needs that are essential to the counsellee.2 For the counsellee, it is important that she should receive all the information to make a conscious choice. One possible approach is to assess the specific motives for women to attend a familial breast cancer clinic. In this respect, different sets of motives may require different sets of information. Several studies have examined individual motives for attending familial breast cancer clinics and much insight has been gleaned into the most common ones.3–9 Motives often encountered for attending these clinics included: “to find out my risk”, “knowledge of my family history”, “to find out the risk to other family members”, “to reduce my worry”, “to find out about genetic testing”, and “to get information about preventive methods”. Some of these studies3,4,10 simply focused …

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  • * Each kappa for pairs of motives was less than 0.17, which is generally classified as poor.