Tailoring communication in consultations with women from high risk breast cancer families

Abstract

This multicentre study examined the influence of patient demographic, disease status and psychological variables on clinical geneticists/genetic counsellors (consultants) behaviours in initial consultations with women from high-risk breast cancer families. One hundred and fifty-eight women completed a pre-clinic self-report questionnaire. The consultations were audiotaped, transcribed verbatim and coded. Consultants did not vary their behaviour according to women's expectations. However, significantly more aspects of genetic testing were discussed with women who were affected with breast cancer (P50.001), screening and management with unaffected women (P=0.01) and breast cancer prevention with younger women (P=0.01). Prophylactic mastectomy was discussed more frequently with women with medical and allied health training (P=0.02), and prophylactic oophorectomy with women affected with breast cancer (P=0.03), those in non-professional occupations (P=0.04) and with a family history of breast and ovarian cancer (P50.001). Consultants used significantly more behaviours to facilitate understanding with women who were in non-professional occupations (P=0.04); facilitated active patient involvement more with women affected with breast cancer (P50.001) and used more supportive and counselling behaviours with affected women (P=0.02). This study showed that patient demographics were more likely to predict consultants' communication behaviours than the woman's psychological status. Methods to facilitate assessment of psychological morbidity are needed to allow more tailored communication. Previous research has documented consultants' reports of the cancer genetic services typically provided to women from high-risk breast cancer families. These include cancer risk assessment and education, facilitation of genetic testing, pre-and post-test counselling, provision of personally tailored cancer risk management recommendations, and psychosocial counselling and support services (NH and MRC, 1999).A recent survey of Australian clinical geneticists and genetic counsellors identified the provision of individualised care as the single most important goal of genetic counselling (Lobb et al, 2001). These consultants emphasised the variability in women's current levels of expectations and needs when they attend genetic counselling and the importance of tailoring communication accordingly.Studies that have examined levels of breast cancer genetics knowledge among women with a family history of breast cancer (Lerman et al, 1996Hughes et al, 1997;Wonderlick and Fine, 1997;Cull et al, 1998;Bluman et al, 1999;Donovan and Tucker, 2000) have found wide variation in knowledge about many facets of genetic testing, including the cancer risks associated with different genes and different mutations and the effectiveness of interventions, for example screening, chemoprevention, or surgery for reducing risk (Geller et al, 1997;Audrain et al, 1998;Bluman et al, 1999).Similarly, there is wide variation in the accuracy of women's perceptions of their li...

Communication and information-giving in high-risk breast cancer consultations: influence on patient outcomes

“…Perhaps, consultants are not exploring women's agendas in sufficient detail, nor following through on information at this point. In another analysis of these data reported elsewhere, we found that consultants were not responsive to women's expectations or their level of psychological distress prior to the consultation (Lobb et al, 2002b).…”

“…This study is one component of a larger randomised controlled trial of providing women with an audiotape of their genetic counselling consultation (Lobb et al, 2002a), and the influence of patient characteristics on consultants' communication (Lobb et al, 2002b). Staff at each of the participating clinics invited women to participate in the study (between November 1998 andMay 2000) when they telephoned to make their appointment.…”

Genetic counselling and the intention to undergo prophylactic mastectomy: effects of a breast cancer risk assessment

“…This does not acknowledge the interactive features and the many other topics and goals that characterise the counselling process, which may also affect subsequent perceptions and behaviours (see Lobb et al, 2002). The effect of breast cancer history on worry after counselling illustrates this point: apparently, an element other than the objective risk information provided in the counselling increased the worry in affected women relative to unaffected women.…”

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

“…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. 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.…”