Facilitating informed decisions about breast cancer screening: development and evaluation of a web-based decision aid for women in their 40s

Abstract

BackgroundExpert groups and national guidelines recommend individualized decision making about screening mammography for women in their 40s at low-to-average risk of breast cancer. We created Breast Screening Decisions (BSD), a personalized, web-based decision aid, to help women decide when to start and how often to have routine screening mammograms. We evaluated BSD in a large, prospective pilot trial of women and their clinicians.MethodsWomen ages 40–49 were invited to use BSD before a scheduled preventive care visit. One month post-visit, users were asked about decisional conflict, knowledge, perceptions and worry about breast cancer and screening. They were also asked whether they had a screening mammogram since their visit, scheduled an appointment for a screening mammogram, or if they were planning to schedule an appointment within the next six months. Women who responded “no” to each of these successive questions were considered to have no plan for a screening mammogram within the next 6 months, unless they explicitly stated that they were unsure about screening mammography. Clinicians were surveyed regarding mammography discussions and perceived patient knowledge and anxiety.ResultsOf 1,100 women invited to use BSD, 253 accessed the website, and 168 were eligible to participate in the pilot study. One-fifth had a family history of breast cancer, and at least 76% had any prior mammogram. At follow-up, 88% of BSD users reported discussing mammography at their visit, and 77% said they had a screening mammogram since the visit or that they made or were planning to make a screening mammogram appointment. The average decisional conflict score was 22.5, within the threshold for implementing decisions. Decisional conflict scores were lowest in women who said that they had or planned to have a mammogram (mean 21.4, 95% CI 18.3-24.6), higher in those who did not (mean 24.8, 95% CI 19.2-30.5), and highest in those who were unsure (mean 31.5, 95% CI 13.9-49.1). Most BSD users expressed accurate perceptions of their breast cancer risk and the benefits and limitations of screening.ConclusionsA web-based decision aid may support informed, individualized decisions about screening mammography and facilitate discussions about screening between women in their 40s and their clinicians.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-017-0423-7) contains supplementary material, which is available to authorized users.

Recommendations on screening for breast cancer in women aged 40–74 years who are not at increased risk for breast cancer

“…16 The studies, most published after 2010 (range 2000-2017), were conducted in 11 different countries (1 in Canada) and had sample sizes from 6 to 16 000. They included 5 qualitative studies, 50-54 9 RCTs, 55-63 1 single-arm trial, 64 8 cross-sectional surveys, 65-72 3 uncontrolled pre-post studies, 73-75 2 stated preference studies 76,77 and a single deliberative jury. 78 Studies varied widely in how information on benefits and harms was presented but tended to provide high benefit-to-harm ratios.…”

Quality of decision aids developed for women at average risk of breast cancer eligible for mammographic screening: Systematic review and assessment according to the International Patient Decision Aid Standards instrument

“…With a maximum score of 188, the mean ± SD overall assessment score was 132.6 ± 23.8 (range, 85‐172), and there were large variations among the decision aids (Table 1). 5,16‐17,19‐37 The decision aids with the highest overall scores were those described by Hersch et al 24 (172 of 188), Schonberg et al 31 (168 of 188), and Elkin et al 33 (166 of 188). The decision aids with the lowest overall scores were those published by Marshall 25 (95 of 188), Marshall and Adab 26 (94 of 188), and Fuller et al 23 (85 of 188).…”

“…Three decision aids were not available in English, including 1 each in Spanish, 19 German, 20 and French 21 . Fifteen decision aids were available on paper (as a booklet, invitation letter, poster, text, or diagram), 5,17‐19,21‐31 7 were available online, 16,20,32‐36 and 1 available as an audio dialogue (presented with a written version in the published article 37 . Regarding the target population for these decision aids, 10 aids were developed for women in their 40s, 5,16,22,25,32‐37 17 were developed for women aged >50 years, 5,16‐26,28‐30,32,35 and 3 were developed for women aged ≥70 years to help them decide whether to continue screening 22,27,31 …”

Decreasing the Impact of Anxiety on Cancer Prevention through Online Intervention

“…For example, about 66% of Polish women indicated fear of cancer as a reason for not undergoing mammography [33]. In this context, the possibility of using web-based decision aids to support decisions about screening mammography is promising [38].…”