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Patient (pt) centricity and shared decision-making are now a global expectation and are dependent on pts receiving understandable information. The increasing number of targeted therapeutic options for those with mBC rely on the identification of biomarkers. This survey probed pts' information experiences and understanding of relevant mBC biomarkers. An online survey was distributed to pts with a self-reported diagnosis of mBC via ABC Global Alliance members. Survey questions captured pts' recall of biomarker terminology, information seeking behavior, and barriers to learning about their diagnosis. Subgroup analyses were conducted by geography, disease history, and information preferences. Where applicable, statistical analysis was performed using Pearson's Chi-square test. 1064 pts from 6 continents completed the survey. Pt recall of biomarker terms used by healthcare professionals (HCPs) varied: 'stage' was the most frequently selected term, 'subtype' and 'biomarker' the least frequent. By region terms differed significantly, with North American pts displaying highest recall levels. 17% (n=55) of Western European pts reported that none of the terms were used. 67% (n=638) of pts felt they had learnt about and understood the type of breast cancer (BC) they have, with lower frequency observed among those diagnosed <1 year ago (p ≤ 0.01). Only 44% (n=415) of pts cited receiving all the information needed from HCPs. Pts sought information from several sources to learn more about their diagnosis, including the internet (70%, n=743), doctors (64%, n=676) and other people diagnosed with BC (45%, n=477). Those diagnosed <1 year ago were less likely to seek information from their doctor (p ≤ 0.05). 7% (n=75) of pts did not want more information, including 17% (n=29) of pts from Latin America. These pts were less likely to be told the importance of knowing their BC type by HCPs (p ≤ 0.05). Results demonstrate a global need for improved HCP communication and pt education about mBC biomarkers, if pts are to make informed treatment decisions. Information should be tailored by source, delivery, and complexity based on pts' diagnosis, cultural, and socioeconomic needs.
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Schumacher-Wulf et al. (2024) studied this question.
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