The use of videotaped information in cancer genetic counselling: a randomized evaluation study

Abstract

Summary A video of introductory information about inherited susceptibility to breast cancer was made in consultation with clinicians in four Scottish cancer family clinics. One hundred and twenty-eight women, newly referred for breast cancer risk counselling were randomized to receive the video before (n = 66) or after (n = 62) counselling. Data were collected before randomization at clinic and by postal follow-up at 1 month. The Video Before group had shorter consultations with the breast surgeon (mean = 1 1.8 min ± 5.4 vs 14.6 ± 7.2 for the Video After group). There was no difference between the groups in the accuracy of their risk estimate after counselling, although the Video Before group scored higher for self-reported (Z= 3.65, d.f. = 1, P< 0.01) and objectively assessed understanding (Z= 2.91, d.f. = 1, P < 0.01). At 1 month follow-up, the Video Before group were less likely to underestimate their risk estimate (38% vs 18%; X2 = 4.62, d.f. = 1, P < 0.05), but there was then no difference between the groups in subjective or objective understanding. Use of the video was not associated with increased distress (GHQ, Spielberger State Anxiety) and was associated with greater satisfaction with the information given at the clinic. This study supports the value of videotape as a method of giving information to prepare women for breast cancer risk counselling. Observations of misunderstandings and distress emphasize the video should be seen as an aid to, not a substitute, for communications at the clinic.

Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation

“…The DA had no negative impact on a broad range of well-being outcomes, and did not deter women from receiving their test result, while it improved understanding of the treatment options and consequences. Similar results on the use of a video in BRCA1/2 counselling have been reported (Cull et al, 1998). Their video, however, was more general and introductory and less focused on the treatment decision.…”

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

“…After genetic counselling, small reductions in anxiety levels were seen in all groups. Even though the participants' baseline mean anxiety scores were slightly higher than the norm for adult women (score of 35), they were comparable to anxiety levels found in other studies that have used the STAI (Cull et al, 1998;Cull et al, 1999;Julian-Reynier et al, 1999;Brain et al, 2000). The between-trial differences support the decision to conduct two parallel trials rather than multicentre trial, where the data would have been pooled (Bowling, 1997).…”

“…We do not have access to data on how many of the participants actually went ahead with genetic testing, or their actual test results. 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).…”

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

“…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).…”