Cancer genetic predisposition: information needs of patients irrespective of risk level

Abstract

Increased insight into the information needs of people about cancer genetic predisposition could allow materials to be developed to improve decision-making for those at high risk, whilst those at lower risk could have their anxiety reduced without the need for referral to genetics services. This study aimed to identify information needs of patients concerned about a genetic predisposition to cancer, and explore how this varied according to risk perception, cancer worry, personal motivation and demographics. Stage 1 used semi-structured telephone interviews pre and post participants' genetic risk assessment. The findings informed stage two, a structured questionnaire survey of 1,112 patients, pre and post their genetic risk assessment. Participants were stratified by risk level and included those concerned about an inherited predisposition to breast, ovarian or colorectal cancer. About 512 (46%) responded with equal proportions of responders and non-responders across the risk categories. Findings indicated that irrespective of a person's actual or perceived level of risk, cancer worry, demographic background or personal motivation; priorities in the type of information required were similar. Greatest emphasis focused on information provision about how risk was assessed. Least important was acquiring an understanding about genes and inheritance patterns. Most participants reported difficulties accessing or finding information. Peoples' information needs are consistent irrespective of their risk level and therefore generalised information packages could be developed for anyone requesting cancer genetic risk assessment. Better information is likely to assist patients' understanding and ultimately increase concordance with recommended screening and preventative measures.

Breast cancer genetic counselling referrals: how comparable are the findings between the UK and the Netherlands?

“…Counselees wanted to know more about their personal risk and that of their family, to understand what was involved with regard to genetic counselling (genetic counselling procedures) and they wanted to understand the inheritance pattern of cancer (hereditary breast cancer). In accordance with earlier findings, the information needs were independent of risk levels (Metcalfe et al 2009). These information needs were not influenced by other counselee characteristics, e.g.…”

“…Consistent with earlier findings (Metcalfe et al 2009), few WM counselees are likely to describe themselves as being from a different cultural background than white British or white Irish (2%). This does not represent the West Midlands population (14% from a black or minority ethnic group (National 2004a), nor the UK population (8% from a black or minority ethnic group) (National 2004b).…”

“…Of the MN counselees, 2.6% was educated at the lowest level (less than high school), compared to 8.4% in the Dutch population. In contrast, WMRGU breast cancer genetic counselees were more representative of the WM population, which was observed previously for cancer genetic counselling in general (Metcalfe et al 2009). Of the WM counselees, 11% had less than high school qualifications, compared to 13% of the English population (National 2009), to which WM educational attainments are comparable (Williams and Botterill 2006).…”

“…Perceptions of breast cancer risk were assessed using a 3-item Likert scale. The counselee indicated her perceived breast cancer risk as lower, the same as or higher than the average risk for a woman of her age (Metcalfe et al 2009). Counselee's worry about developing breast cancer was assessed with one question: 'how worried are you about getting breast cancer'.…”

“…The Birmingham scale for information needs consisted of 25 items. Importance was assessed with a 5-point scale anchored by 'not important' and 'extremely important' and included a middle category for 'not sure' (Metcalfe et al 2009). In the Dutch questionnaire, counselees' needs were assessed using a counselee-centred instrument, called QUOTE-gene ca (Pieterse et al 2005b).…”