RESUMEN

Breast cancer survivors on adjuvant endocrine therapy (AET) have distinct information-seeking experience compared to those in the diagnosis and intensive treatment phase. This study aimed to understand the challenges in obtaining and seeking information among Malaysian breast cancer survivors. We conducted semi-structured, one-to-one interviews among patients using AET from two hospitals and a local cancer organization. Interviews were conducted until theme saturation was achieved (N = 25). Interviews were de-identified, transcribed verbatim, and analysed using thematic analysis. To ensure rigor, coding was conducted through regular discussions between two researchers and the findings were shared with several participants after analysis was completed. Three main themes were identified: limitations in the healthcare system, pitfalls of seeking information online, and limited information from local sources. The participants perceived that their information needs were not met by their healthcare providers and sought information on the Internet to complement their information needs. However, they were faced with risks of misinformation, information overload, and unethical promotion of health products. Those with limited English proficiency had difficulties in accessing quality information, and suggested that there should be more content created by local health advocates in local languages, with information that is tailored for local cultures. As the Internet has become an important medium of health education, healthcare providers and patients should be equipped with the skills to share and search for information online. Digital health literacy needs to be incorporated in patient education modules to create a more informed and empowered patient community.

Asunto(s)

Neoplasias de la Mama , Supervivientes de Cáncer , Conducta en la Búsqueda de Información , Investigación Cualitativa , Humanos , Femenino , Neoplasias de la Mama/psicología , Neoplasias de la Mama/terapia , Supervivientes de Cáncer/psicología , Persona de Mediana Edad , Malasia , Adulto , Anciano , Internet

RESUMEN

Objective: To determine the prevalence and types of misinformation on Twitter related to breast cancer prevention and treatment; and compare the differences between the misinformation in English and Malay tweets. Methods: A total of 6221 tweets related to breast cancer posted between 2018 and 2022 were collected. An oncologist and two pharmacists coded the tweets to differentiate between true information and misinformation, and to analyse the misinformation content. Binary logistic regression was conducted to identify determinants of misinformation. Results: There were 780 tweets related to breast cancer prevention and treatment, and 456 (58.5%) contain misinformation, with significantly more misinformation in Malay compared to English tweets (OR = 6.18, 95% CI: 3.45-11.07, p < 0.001). Other determinants of misinformation were tweets posted by product sellers and posted before the COVID-19 pandemic. Less misinformation was associated with tweets utilising official/peer-reviewed sources of information compared to tweets without external sources and those that utilised less reliable information sources. The top three most common content of misinformation were food and lifestyle, alternative medicine and supplements, comprising exaggerated claims of anti-cancer properties of traditional and natural-based products. Conclusion: Misinformation on breast cancer prevention and treatment is prevalent on social media, with significantly more misinformation in Malay compared to English tweets. Our results highlighted that patients need to be educated on digital health literacy, with emphasis on utilising reliable sources of information and being cautious of any promotional materials that may contain misleading information. More studies need to be conducted in other languages to address the disparity in misinformation.