Cancer patients: Assessing awareness, attitudes and claimed behavior around key decision points upon being diagnosed.

Abstract

e23052 Background: As precision medicine becomes increasingly important in oncology, patients need to be educated on making decisions at diagnosis to optimize their outcomes. The HBS Kraft Precision Medicine Accelerator is working with national cancer organizations to understand and address gaps in knowledge and action. Informed by prior patient and physician research, the Accelerator developed the Right Track framework, which addresses the unmet educational needs of patients as they navigate their journey. Methods: Participants with newly diagnosed cancer were recruited by the 5 participating foundations from their databases of affiliated patients (MMRF: n = 63, PanCAN: n = 202, LUNGevity: n = 51, PCF: n = 71, MBC Alliance: n = 66). Inclusion criteria included currently living in the US, 25 years or older, diagnosed with a qualifying cancer in the past 12 months (past 18 months for LUNGevity), self-reported as being at least somewhat knowledgeable in their disease, and self-reported as having some input in treatment decisions. The study was conducted by Kantar Health and sponsored by the HBS Kraft Precision Medicine Accelerator. The fielding was conducted in October 2018. Potential respondents were e-mailed an invitation to complete a 20-minute online survey. Potential respondents were also exposed to an invitation via social media from the participating study sponsors. The respondents were asked a series of customized questions that assessed their awareness and behavior on items within each of the four pillars of the Right Track framework. Results: Descriptive analyses were conducted on each of the four pillars (Right Team, Right Tests, Right Treatment, Sharing at Every Step) and it was found that educational gaps exist across all five cancers. Patients require guidance on selecting a knowledgeable team and facility, understanding their specific cancer sub-type and genomic information, participation in clinical trials and the importance of sharing their data. Conclusions: There is a strong need for patient advocacy foundations to work as unbiased, patient-focused organizations, such that they are well-positioned to help close these knowledge gaps.