Attitude towards and factors affecting uptake of population based BRCA testing in the Ashkenazi Jewish population: a cohort study.

Manchanda R1,2, Burnell M3, Gaba F1,2, Sanderson S4, Loggenberg K5, Gessler S3, Wardle J4, Side L6, Desai R3, Brady AF7, Dorkins H8, Wallis Y9, Chapman C10, Jacobs C11,12, Tomlinson I13, Beller U14, Menon U3, Jacobs I15.

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Abstract

OBJECTIVE:

To evaluate factors affecting unselected-population-based-BRCA-testing in Ashkenazi-Jews (AJ).

DESIGN:

Cohort-study set within recruitment to the GCaPPS-trial (ISRCTN73338115).

SETTING:

North-London AJ-population.

POPULATION OR SAMPLE:

AJ women/men >18-years, recruited through self-referral.

METHODS:

AJ-women/men underwent pre-test counselling for BRCA-testing through recruitment clinics (clusters). Consenting individuals provided blood-sample for BRCA-testing. Socio-demographic/family-history/knowledge/psychological well-being data along-with benefits/risks/cultural-influences (18-item-questionnaire measuring 'attitude') were collected. 4-item likert-scales analysed initial 'interest' and 'intention-to-test' pre-counselling. Uni-&-multivariable logistic-regression-models evaluated factors affecting uptake/interest/intention-to undergo BRCA-testing. Statistical inference was based on cluster robust standard-errors and joint Wald-tests for significance. Item-Response-Theory and graded-response-models modelled responses to 18-item questionnaire.

MAIN OUTCOME MEASURES:

Interest, intention, uptake, attitude towards BRCA-testing.

RESULTS:

935 (women=67%/men=33%; mean-age=53.8(S.D=15.02) years) individuals underwent pre-test genetic-counselling. Pre-counselling 96% expressed interest but 60% indicated clear intention-to undergo BRCA-testing. Subsequently 88% opted for BRCA-testing. BRCA-related knowledge (p=0.013) and degree-level education(p=0.01) were positively and negatively (respectively) associated with intention-to-test. Being married/cohabiting had four-fold higher-odds for BRCA-testing uptake (p=0.009). Perceived benefits were associated with higher pre-counselling odds for interest and intention-to undergo BRCA-testing. Reduced uncertainty/reassurance were the most important factors contributing to decision-making. Increased importance/concern towards risks/limitations (confidentiality/insurance/emotional-impact/inability to prevent cancer/marriage-ability/ethnic-focus/stigmatization) were significantly associated with lower-odds of uptake-of BRCA-testing, and discriminated between acceptors and decliners. Male-gender/degree-level-education (p=0.001) had weaker, while having children had stronger (p=0.005) attitudes towards BRCA-testing.

CONCLUSIONS:

BRCA-testing in the AJ-population has high acceptability. Pre-test counselling increases awareness of disadvantages/limitations of BRCA-testing, influencing final cost-benefit perception and decision-making on undergoing testing. This article is protected by copyright. All rights reserved.