Breast cancer worry in higher-risk women offered preventive therapy: a UK multicentre prospective study
Authors: Lloyd Kelly E. , Hall Louise H. , Ziegler Lucy , Smith Samuel G. ,   ENGAGE investigators, Adamson Vanessa , Ainsworth Sarah , Akerlund Malin , Baker Ivanna , Barwell Julian , Beesley Jayne , Brock Lisa , Butcher Chrissie , Carpenter Janice , Clark Martyn , Cocks Shirley , Conteh Veronica , Coulding Martina , Darby Sue , Duckworth Angela , Evans Gareth , Fensom Catherine , Fletcher Julie , Foster Kate , Grieg Sara , Gullaksen Elaine , Gurasashvili Jana , Hardstaff Lisa , Hart Rachel , Hoare Kathryn , Hoffman Jonathan , Holcombe Christopher , Horton Lynne , Howell Antony , Islam Farah , Jenkinson Emma , Jewers Karen , Joshi Manisha , Kirkby Amy , Kneeshaw Peter , Knife Natalie , Kokan Jalal , Li Jin , Lunt Nicola , Macmillan Douglas , Makinson Karen , Mallidis Evangelos , Manyangadze Sarah , Masvaure Charity , Mistry Raksha , Ngumo Alice , Ooi Jane , Patel Ashraf , Pope Vanessa , Price Laura , Rabson Fiona , Richardson Lisa , Ridgway Stephanie , Riley Karen , Roberts Lorraine , Ryan-Smith Janet , Salih Vian , Scott Nicky , Shere Mike , Sloan Andrew , Solanky Nita , Taylor Amanda , Thekkinkattil Dinesh , Thomas Heather , Thorat Mangesh , Townley Barbara , Vaidya Jayant S. , Wagstaff Lynda , Walsh Shane , Waring Lynsey , Watterson Donna , Westley Charlotte , Wilkinson Lesley , Willis Nicola , Wiseman Julia 
Published: March 2021

Abstract
Purpose
Women’s worry about developing breast cancer may influence their decision to use preventive therapy. However, the direction of this relationship has been questioned. We prospectively investigated the relationship between breast cancer worry and uptake of preventive therapy. The socio-demographic and clinical factors associated with high breast cancer worry were also investigated.

Methods
Women at increased risk of developing breast cancer were recruited from clinics across England (n = 408). Participants completed a survey on their breast cancer worry, socio-demographic and clinical factors. Uptake of tamoxifen was recorded at 3 months (n = 258 women, 63.2%). Both primary and sensitivity analyses were conducted using different classifications of low, medium and high worry.

Results
39.5% of respondents reported medium breast cancer worry at baseline and 21.2% reported high worry. Ethnic minority women were more likely to report high worry than white women (OR = 3.02, 95%CI 1.02, 8.91, p = 0.046). Women educated below degree level were more likely to report high worry than those with higher education (OR = 2.29, 95%CI 1.28, 4.09, p = 0.005). No statistically significant association was observed between worry and uptake. In the primary analysis, fewer respondents with medium worry at baseline initiated tamoxifen (low worry = 15.5%, medium = 13.5%, high = 15.7%). In the sensitivity analysis, participants with medium worry reported the highest uptake of tamoxifen (19.7%).

Conclusions
No association was observed between worry and uptake, although the relationship was affected by the categorisation of worry. Standardised reporting of the classification of worry is warranted to allow transparent comparisons across cohorts.