Development, validation and evaluation of an education tool for women with breast cancer on adjuvant endocrine therapy

Abstract

Adjuvant endocrine therapy (AET) is given to hormone receptor-positive breast cancer patients for five to ten years to reduce the risk of recurrence. However, AET adherence was often suboptimal. The aim of this project was to develop an education tool for AET that is tailored to the needs of the Malaysian population. The development process started with needs assessment and problem analysis, which were conducted through three studies: 1) Systematic review to understand factors affecting long-term adherence to AET; 2) Qualitative study to explore patient information needs and informationseeking experience; and 3) Infodemiology study to determine the prevalence and topics of online misinformation related to breast cancer prevention and treatment. Twenty-six studies were included in the systematic review, revealing over 50 factors associated with AET adherence. Several modifiable factors affecting adherence were identified, including management of side effects, perceived importance of AET, belief in AET efficacy and experience in managing chronic medication. For Study 2, semi-structured interviews were conducted among 25 patients on AET. Three themes were identified: 1) Challenges during information seeking; 2) Patient information needs; and 3) Preferred methods of information delivery. It was found that majority of the participants sought for additional information via the Internet, exposing them to online misinformation. Following this, the third study was conducted to determine the prevalence and topics of misinformation on Twitter related to breast cancer prevention and treatment. From the 6221 tweets analysed, 780 tweets were related to breast cancer prevention and treatment, and 456 (58.5%) of these contain misinformation, with significantly more misinformation in Malay compared to English tweets (OR=6.18, 95% CI: 3.45–11.07, p<0.001), and in tweets posted by product sellers compared to general users (OR=4.03, 95% CI: 1.81–9.00, p=0.001). In the fourth study, information gathered from the three studies were used to guide the content of the education tool. The education materials were then evaluated by a panel of 10 multidisciplinary experts, who provided detailed feedback and rated the education tool using Content Validity Index (CVI), Ensuring Quality Information for Patients (EQIP), Patient Education Materials Assessment Tool (PEMAT) and Suitability Assessment of Materials (SAM). Two rounds of assessment were conducted, and amendments were made following the experts’ comments. After the second round, CVI scores were 0.9 and above, and the average scores for EQIP (90.3%), PEMAT-Understandability (98.2%), PEMATActionability (96.3%) and SAM (93.4%) indicated that the education tool had excellent quality. The fifth study was user testing involving pre- and post-questionnaire to evaluate user satisfaction based on the Consumer Information Rating Form (CIRF) and the effect of the education tool on patients’ beliefs – measured using Beliefs about Medicines Questionnaire (BMQ) – and knowledge. Results indicated that the participants (n=62) were satisfied with the comprehensibility (Score=20.9/25), utility (Score=44.9/56) and design quality (Score=26.3/30) of the education tool. There was significant improvement in knowledge and BMQ-General scores, but not for BMQAET scores. In conclusion, the education tool that was developed contains information that are relevant, clear, and with overall good design. It has the potential to improve patients’ knowledge and their general beliefs towards medicine.