Grant: Team Grant: Indirect Socio-Economic Burden of Inherited Diseases

Patients at risk for a hereditary cancer syndrome (HCS) require complex care over a lifetime. HCS care across Canada is fragmented due to variation in access to genetic testing and high risk follow up. These systemic variations result in indirect social and economic impacts on HCS patients and families. Yet, the indirect burden of HCS is often unaccounted for and underestimated. There is a need to map these indirect socio-economic impacts of the variations in systems of care for patients with suspected and confirmed inherited cancer syndromes across Canada. First, we will explore indirect social and economic impacts of current systems of HCS care using multigene panel testing. We will conduct interviews and a cross-sectional survey among patients with HCS from Newfoundland and Labrador (NL), British Columbia (BC) and Ontario (ON). We will examine outcomes related to care (e.g., wait times, access), psychosocial impacts (e.g., discrimination, distress), and economic impacts (e.g., out-of-pocket and travel costs) associated with HCS. Next, we will assess direct and indirect socioeconomic impacts of genomic sequencing (future state of HCS care) and incidental findings (IFs, results unrelated to HCS) for HCS patients. We will conduct interviews, evaluate patient-reported outcomes and an economic evaluation, building on a recent randomized controlled trial (RCT) among patients with suspected HCS. We will assess outcomes related to care (e.g., follow-up management), psychosocial impacts (e.g., career, reproductive decisions) and economic impacts associated with genomic sequencing and IFs (e.g., to the health care system and patients). This study will examine the direct and indirect socioeconomic and psychological impacts of HCS on patients and families. Comparing among NL, BC and ON will allow us to identify provincial differences in the indirect socioeconomic burden of HCS, to inform policy, health care and social system interventions to mitigate inequities.