Communication in cancer genetic counselling: does it reflect counselees' previsit needs and preferences?

Abstract

This study sought to describe counsellor -counselee interaction during initial cancer genetic counselling consultations and to examine whether the communication reflects counselees' previsit needs. A total of 130 consecutive counselees, referred mainly for breast or colon cancer, completed a questionnaire before their first appointment at a genetic clinic. Their visit was videotaped. Counselee and counsellor verbal communications were analysed and initiative to discuss 11 genetics-specific conversational topics was assessed. The content of the visit appeared relatively standard. Overall, counselees had a stronger psychosocial focus than counsellors. Counsellors directed the communication more and initiated the discussion of most of the topics assessed. Counselees did not appear to communicate readily in a manner that reflected their previsit needs. Counsellors provided more psychosocial information to counselees in higher need for emotional support, yet did not enquire more about counselees' specific concerns. New counselees may be helped by receiving more information on the counselling procedure prior to their visit, and may be advised to prepare the visit more thoroughly so as to help them verbalise more their queries during the visit. British Journal of Cancer (2005) The exchange of information is the core of cancer genetic counselling. Preferably, it supports a 'caring, professional relationship that offers guidance, but allows individuals and families to come to their own decisions' as put forward by the Proposed international guidelines on ethical issues in medical genetics and genetic services (1998). Several authors argued that counsellors should try to elicit counselees' needs and preferences at the outset, and to adapt their counselling accordingly (Michie et al, 1998;Bernhardt et al, 2000;Lobb et al, 2001). Findings on communication within general practice (Marvel et al, 1999;Street, 1991) and oncology (Ford et al, 1996) suggest that physicians rarely solicit patients' concerns and questions. At the same time, studies revealed that patients' strong desire for medical information did not prompt them to engage frequently in information-seeking behaviours (Beisecker and Beisecker, 1990). Butow and Lobb (2004) described the typical process and content of first genetic counselling consultations with women from high-risk breast cancer families. They found that counsellors provided detailed information on various aspects related to familial breast cancer but did not consistently elicit emotional concerns. Indeed, in another analysis of the data, Lobb et al (2002) found that counsellors did not adapt their counselling according to women's expectations or anxiety. Rather, women's professional occupation and disease status were predictive of the type of information that was provided and how this was delivered.The purpose of the present study was two-fold. First, it aimed to describe counsellor -counselee interaction during initial cancer genetic counselling consultations in terms of affective and taskoriented ...

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

“…Consistent with earlier findings of the UMCU (Pieterse et al 2005c) and with studies of other Dutch genetics centres (Van Asperen et al 2002;Van Dijk et al 2004), almost half of the counselees in Utrecht was higher educated (MSc/BSc). Thirty-eight percent of the population in the province of Utrecht is higher educated (Statistics 2003) and 28% of the Dutch population (Statistics 2009a).…”

“…Both UK and Dutch counselees who are the first in their family to request cancer genetic counselling (probands) have unrealistic expectations or do not know what to expect (Metcalfe et al 2007;Bernhardt et al 2000;Hallowell et al 1997;Pieterse et al 2005b). Many expect to be offered a DNA-test independent of their disease status and risk profile (Metcalfe et al 2007;Hallowell et al 1997;Pieterse et al 2005c). Also, many people in the UK and the NL lack basic genetic knowledge (Henneman et al 2004;Calsbeek et al 2007;Morren et al 2007;Mesters et al 2005;Walter et al 2004).…”

A pre-visit website with question prompt sheet for counselees facilitates communication in the first consultation for breast cancer genetic counseling: findings from a randomized controlled trial

“…[4][5][6][7] Because lay understanding of Mendelian genetics is poor, [8][9][10][11][12] a large part of the counselor communication is education about hereditary breast cancer, inheritance, and DNA testing. 13 Moreover, counselors direct the communication, initiate the discussion of most topics, 14 and seldom build on the counselee's perspective, i.e., her needs, knowledge, and risk perception. 15,16 By providing pre-visit education, more consultation time might be left to discuss the counselee's decision and counselees can be helped to request information.…”

“…15,16 By providing pre-visit education, more consultation time might be left to discuss the counselee's decision and counselees can be helped to request information. 14 Studies of computer-based pre-visit information for breast cancer genetic counselees indeed indicate that the focus within the consultation shifted away from basic education toward more counselee-specific information about risk, decision making, and preventive options. 17 Also, the use of the program shortened the first visit.…”

Risk communication in completed series of breast cancer genetic counseling visits

“…17 Inclusion criteria were being 18 years or older and being the first in their family to seek cancer genetic counseling. For the present study, secondary analyses were performed on women seeking counseling for suspected hereditary breast cancer and who had an indication for diagnostic DNA testing.…”