Women’s perceptions of PERSPECTIVE: a breast cancer risk stratification e-platform

All women are at risk of developing breast cancer [1]. In both incidence and mortality rates, breast cancer remains the most common cancer among women worldwide [2]. An increased understanding of the underlying factors that contribute to the development of breast cancer has given rise  to the development of public health strategies for prevention and early detection [3, 4]. Given that most women overestimate their risk [5], providing information tailored to specific risk levels may increase adherence to personalized prevention and screening recommendations through informed decision-making [6].

Breast cancer risk stratification follows a disease screening and prevention approach whereby women from a targeted population are classified into subgroups based on their risk of developing the illness [7]. Using the Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA), the risk specific to each woman is assessed based on a combination of factors - including rare mutations in breast cancer predisposition genes, polygenic risk score determined using common low penetrance genetic variants, familial history of related cancers, reproductive history, alcohol, body mass index, hormones, and breast density, then risk is classified into either 1) near population, 2) intermediate, or 3) high [8]. Based on the specific risk level, appropriate screening and prevention measures are recommended [9, 10].

To complement this process, breast cancer information, tailored education, and support are essential in raising awareness and following up on recommendations [11]. Of note, the integration of e-platforms presents the opportunity to provide relevant evidence-based information in a more accessible, sustainable, and efficient manner [12, 13]. For these to work as intended, they must be high quality, relevant, and user-friendly. Moreover, personal health literacy, defined as an individual’s ability to “find, understand, and use information and services to inform health-related decisions and actions for themselves and others”, emphasizes the importance of using health information rather than merely understanding it [14]. Lower health literacy is associated with  reduced use of preventive services [15], especially mammography and screening [16, 17]. Thus, it is essential for breast cancer prevention programs to be accessible to women across different literacy levels [17].

In a randomized controlled trial published in The Lancet, Hersch et al. [18] reported on the use of decision aids for women regarding breast cancer screening. Womenfrom the general population were randomized to receive either 1) The intervention: A decision-aid on screening also may contain information on potential harms such as over detection and false positives, in addition to positive information pertaining to the reduction of breast cancer mortality reduction, or 2) The control condition: A routinely used screening decision aid without reference to potential harms. Results showed significant differences between groups with significantly more women in the intervention group meeting the threshold for enhanced knowledge and informed choice regarding screening post intervention [18]. These changes remained at the 2-year follow up [19].

In addition, the literature supports that decision-making, such as the choice to undergo genetic testing for breast cancer, can be influenced by prior knowledge and emotions [20]. Emotions, for instance, provide quick incentives in , determining importance and value that aid in decision-making, when time, motivation and/or information is limited [20]. Moreover, as the affect-as-information model states – an individual may consider feelings and/or mood as baseline information that ultimately influence how other types of information are processed [21,22,23]. Thus, underlying emotions can influence a person’s experience interacting with health information, and is assessed herein using positive and negative affect (mood).

PERSPECTIVE

PERSPECTIVE (PErsonalized Risk Stratification for Prevention and Early deteCTIon of breast cancer) is a Quebec-based project that aims to promote early detection of breast cancer in a cost-effective manner through risk stratification and communication e-tools. It broadens the reach of mammography screening programs to target women, especially those under 50, who may be at higher risk of developing breast cancer but are overlooked due to higher age-based screening guidelines.

In Phase 1, a web-based e-platform was developed. This initiative sought to provide comprehensive information on breast cancer risk in an optimal manner to women of different literacy and education levels (Fig. 1). PERSPECTIVE can be used as a pre-assessment means to support women in the decision to have their personal breast cancer risk assessed and post-assessment tool providing personalized recommendations based on risk level once determined.

The password protected e-platform, available in English and French, contains 28 pages of content and images on breast cancer risk stratification, risk factors, prevention, personal risk assessment, risk classification levels, and recommended screening measures. All content was developed in accordance with the Clinical Advisory Committee on Breast Cancer Screening and Prevention [24], and revised through an earlier pilot phase of the study which examined a preliminary version of the platform according to feedback from healthy women (N = 10) through in-depth semi-structured interviews. These women reported that the e-platform was relevant, easy to navigate, and that they learned new information on their relative breast cancer risk. Presented herein, Phase 1 utilized PERSPECTIVE as a pre-assessment tool to be used by women with no knowledge of their personal breast cancer risk. Thus, family history was not collected and personal risk assessment was not calculated.

Aims and objectives

The aim of the current study was to begin to assess the PERSPECTIVE e-platform among women in the general population of various literacy and education levels, who were not aware of their personal breast cancer risk.

Objective 1: To assess participants changes (pre- and post- e-platform exposure) in knowledge of breast cancer risk, while controlling for sociodemographic variables of age and education.

Objective 2: To assess participants changes (pre- and post- e-platform exposure) in understanding and interest in subsequent genetic testing.

Objective 3: To determine the usability and acceptability of the e-platform. The former refers to the quality of a person’s experience interacting with content, including ease of learning, efficiency of use, memorability, error frequency and severity, and subjective satisfaction [25]. Acceptability refers to how well the e-platform is received by its target audience and the extent to which platformcomponents meet users' needs [26].

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