Manchanda, R;
Burnell, M;
Gaba, F;
Sanderson, S;
Loggenberg, K;
Gessler, S;
Wardle, J;
... Beller, U; + view all
(2019)
Attitude towards and factors affecting uptake of population based BRCA testing in the Ashkenazi Jewish population: a cohort study.
BJOG: An International Journal of Obstetrics and Gynaecology
, 126
(6)
pp. 784-794.
10.1111/1471-0528.15654.
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Revsn_Paper-4_2018_Att_Uptake_Pop_BRCAtesting-AJ_ bjog_vF6_repository.pdf - Accepted Version Download (1MB) | Preview |
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: Ashkenazi Jews women/men >18 years, recruited through self‐referral. / Methods: Ashkenazi Jews women/men underwent pre‐test counselling for BRCA testing through recruitment clinics (clusters). Consenting individuals provided blood samples for BRCA testing. Data were collected on socio‐demographic/family history/knowledge/psychological well‐being along with benefits/risks/cultural influences (18‐item questionnaire measuring ‘attitude’). Four‐item Likert‐scales analysed initial ‘interest’ and ‘intention‐to‐test’ pre‐counselling. Uni‐ and 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: A total of 935 individuals (women = 67%/men = 33%; mean age = 53.8 (SD = 15.02) years) underwent pre‐test genetic‐counselling. During the pre‐counselling, 96% expressed interest in and 60% indicated a 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 in 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/stigmatisation) 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 correlations, whereas having children showed stronger (P = 0.005) associations with 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. / Tweetable abstract: BRCA testing in Ashkenazi Jews has high acceptability and uptake. Pre‐test counselling facilitates informed decision‐making.
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