Psychological Impact of Genetic Counseling for Familial Cancer: A Systematic Review and Meta-Analysis

Abstract

Genetic counseling for familial cancer is associated with improvement in knowledge but does not have an adverse effect on affective outcomes. We urge further investigation of these findings through well-designed, well-reported, randomized controlled trials with suitable comparison groups and additional outcome measures [J Natl Cancer Inst 2004; 96:122-33].

Genetic nurse counsellors can be an acceptable and cost-effective alternative to clinical geneticists for breast cancer risk genetic counselling. Evidence from two parallel randomised controlled equivalence trials

“…The primary outcome measure was anxiety, the reduction of which is regarded as a key counselling objective (Shaw et al, 1999;Brain et al, 2000;Meiser and Halliday, 2002) and a number of evaluations of genetic counselling for familial cancer have identified the pre-and postcounselling assessment of generalised anxiety as a main outcome measure (Cull et al, 1998Julian-Reynier et al, 1999;Brain et al, 2000;Kent et al, 2000;Bish et al, 2002;Bowen et al, 2004). Evidence from systematic reviews suggests that, overall, genetic counselling has the effect of significantly reducing patients' anxiety levels, at least in the short-term (Meiser and Halliday, 2002;Butow et al, 2003;Braithwaite et al, 2004). The a priori equivalence limits for the primary outcome (STAI) were set at a very strict level, and in reality they probably represent a smaller difference than would normally be considered clinically significant between two clinicians considered equally competent; however, results showed that some outcomes were considered 'equivalent' even at this strict level.…”

“…The knowledge we assessed was not specific to cancer genetics, and our findings are consistent with genetic counselling delivered by either doctors or nurses being equally effective (or ineffective) in educating patients about breast cancer risk. Braithwaite et al (2004) suggest that genetic counselling can be effective in improving knowledge related to breast cancer genetics, compared with no counselling or counselling delivered by nongenetics specialists. However, the observed level of misunderstanding seen in this study suggests that more effective population interventions are required to improve general knowledge of breast cancer risks.…”

“…Evidence from systematic reviews suggests that genetic counselling does not appear to have any adverse effect on psychological outcomes (Meiser and Halliday, 2002;Butow et al, 2003;Braithwaite et al, 2004), and may convey some short-term benefits in decreasing general anxiety and in improving the accuracy of women's perceptions of their personal risk. Historically, clinical genetic risk assessments in the UK have been conducted largely by medical doctors, with a variable amount of support for genetic counselling provided by genetic nurses and counsellors, social workers and psychologists as well.…”

“…This trend is likely to continue. However, there is a lack of formal evaluation of the effectiveness of this strategy and the lack of well designed and conducted randomised controlled trials of genetic service models has been noted in a number of recent publications (Butow et al, 2003;Braithwaite et al, 2004;Hopwood et al, 2004;NICE, 2004).…”

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

“…4,5 The psychological adjustment of individuals undergoing genetic testing for cancer susceptibility has been studied extensively. [6][7][8] In general, no major long-term adverse psychological consequences seem to result from the genetic testing process with the exception of a consistently present subgroup of individuals who report distress. 7,9,10 Although what causes psychological difficulties for this subgroup is still unclear, it has been proposed that psychological adaptation should be analyzed not only at the individual perspective level but also in the context of the family interrelationships.…”