Women's need for information before attending genetic counselling for familial breast or ovarian cancer: a questionnaire, interview, and observational study

Subjects

We recruited subjects from Cambridge Cancer Family History Clinic. After excluding those who had had breast or ovarian cancer or who had previously attended genetic counselling, we invited all women referred between February 1994 and February 1995 to take part. We approached 59 eligible women and recruited 46. The participants were aged 22-59 years (mean 40 years), and table 1) shows details of their family history of cancer.

Data collection

We collected data from interviews, observations, and questionnaires (see table 2)). We recorded and transcribed the interviews and consultations with the women's consent. The study was approved by Cambridge Local Research Ethics Committee.

Data analysis

We coded the interview transcripts using the computer package Atlas-ti (Thomas Muhr, Berlin). Categories were based on the interview questions and recurring themes identified.4 The consultations were coded as agenda setting, family history, epidemiological, genetic, risk and screening information, surgery, hormone therapy, DNA testing, and other. We analysed the questionnaire data with the statistical package spss.

Clinic procedures

Before their appointment, counsellees were sent a form asking them to list affected relatives and their type of cancer, relationship to counsellee, date of birth, diagnosis and death, and details of hospitals where they had been treated. A few women contacted the clinic for further information and were told the approximate duration of the consultation, that they would not have a physical examination, and to write down questions for discussion. No physical examinations were performed during the consultations, although some counsellees were asked to donate blood for research purposes. Women were referred elsewhere for breast and ovarian screening.

Preclinic expectations

Before attending the clinic, participants were asked “What do you hope to get out of the appointment?” All expected to discuss their family history, their own and other family members' risks, and options for risk management. However, there was widespread uncertainty about what else would occur, and 17 (37%) women said that they had no idea about what else to expect.

Unfamiliarity with the process and content of counselling inhibited counsellees from formulating questions in advance. In answer to the question “Have you any particular questions you want to ask the counsellor?” 13 (28%) women said they had not prepared questions as they envisaged their role in the consultation as passive–they assumed that the counsellor would question them and make recommendations.

Consultations

The counsellors tried to establish the counsellees' expectations at the beginning of the consultations by asking them why they had been referred and what they expected. However, only one counsellee revealed her uncertainty at this point. The counsellees' lack of preparation became more apparent when the family history was taken as many became embarrassed when they were unable to provide information.

Responses to postclinic questionnaire

Despite the women's high level of satisfaction with the consultation (see table 3)), 12/43 (28%) said that they had been disappointed by some aspect of genetic counselling (for example, not having DNA testing or not being given enough information).

Responses to postclinic interview

Although 16 (40%) women said that they had not known what to expect, most participants regarded counselling as a positive experience. However, only 14 (35%) women reported feeling adequately prepared–”If there was anything I could change, it would be to let somebody know earlier what it really entails. Because I didn't know what to expect. I didn't know…they're going to talk to you about your family history. They are going to relate your family history to histories that they already have.”

Eleven (28%) women said that they would have liked to have known beforehand exactly what details of family history were needed. Some had not realised the importance of male or distant relatives or that they would be asked for health details of family members not affected with cancer. They worried that the gaps in their information meant that they were unable to obtain an accurate estimate of risk, despite the fact that the counsellors always stressed the provisional nature of estimating risk.

Two (5%) women wished that they had been advised to prepare questions, as they had not realised that counselling was a two way process. Four (10%) women who received a qualitative risk estimate said it would have been helpful if they had been given a numerical risk, and two were not aware that this was possible.

Six (15%) women said the consultation did not match up to their expectations: four had thought that they would have a blood test (it was unclear whether they envisaged this as diagnostic or DNA testing), and two had expected to have a clinical examination or screening–”I had no idea what was going to happen. I thought maybe I was going to have a full examination…. I've never had a mammogram, and I thought maybe that would happen.”

Some women said their anxiety about what would occur or the information they might receive had affected the way they approached the consultation–“I was in such a state when I got there. [My friend] and I sat in the car counting down…. And I'm saying to [my friend], ‘You listen for me because I can't take it in….’ And both of us were just like messes in the car…. Just before I went in for the appointment, my mind just went blank.”