Systematic review of the empirical investigation of resources to support decision-making regarding BRCA1 and BRCA2 genetic testing in women with breast cancer.

OBJECTIVE: Identify existing resources developed and/or evaluated empirically in the published literature designed to support women with breast cancer making decisions regarding genetic testing for BRCA1/2 mutations. METHODS: Systematic review of seven electronic databases. Studies were included if they described or evaluated resources that were designed to support women with breast cancer in making a decision to have genetic counselling or testing for familial breast cancer. Outcome and process evaluations, using any type of study design, as well as articles reporting the development of decision aids, were eligible for inclusion. RESULTS: Total of 9 publications, describing 6 resources were identified. Resources were effective at increasing knowledge or understanding of hereditary breast cancer. Satisfaction with resources was high. There was no evidence that any resource increased distress, worry or decisional conflict. Few resources included active functionalities for example, values-based exercises, to support decision-making. CONCLUSION: Tailored resources supporting decision-making may be helpful and valued by patients and increase knowledge of hereditary breast cancer, without causing additional distress. PRACTICE IMPLICATIONS: Clinicians should provide supportive written information to patients where it is available. However, there is a need for robustly developed decision tools to support decision-making around genetic testing in women with breast cancer.

Involving clinical experts in prioritising topics for health technology assessment: a randomised controlled trial.

OBJECTIVES: The objective of this study was to explore whether reducing the material supplied to external experts during peer review and decreasing the burden of response would maintain review quality into prioritising research questions for a major research funder. METHODS AND ANALYSIS: Clinical experts who agreed to review documents outlining research for potential commissioning were screened for eligibility and randomised in a factorial design to two types of review materials (long document versus short document) and response modes (structured review form versus free text email response). Previous and current members of the funder's programme groups were excluded. Response quality was assessed by use of a four-point scoring tool and analysed by intention to treat. RESULTS: 554 consecutive experts were screened for eligibility and 460 were randomised (232 and 228 to long document or short document, respectively; 230 each to structured response or free text). 356 participants provided reviews, 90 did not respond and 14 were excluded after randomisation as not eligible.The pooled mean quality score was 2.4 (SD=0.95). The short document scored 0.037 (Cohen's d=0.039) extra quality points over the long document arm, and the structured response scored 0.335 (Cohen's d=0.353) over free text. The allocation did not appear to have any effect on the experts' willingness to engage with the task. CONCLUSIONS: Neither providing a short or a long document outlining suggested research was shown to be superior. However, providing a structured form to guide the expert response provided more useful information than allowing free text. The funder should continue to use a structured form to gather responses. It would be acceptable to provide shorter documents to reviewers, if there were reasons to do so. TRIAL REGISTRATION NUMBER: ANZCTR12614000167662.