Grant: Travel Awards - Institute Community Support

Background Hereditary cancer syndromes (HCS) account for 5-10% of all cancers. HCSs such as hereditary breast and ovarian cancer syndrome (HBOC) or Lynch syndrome (LS) can significantly increase one's lifetime risk of cancer and patients require lifelong screening and follow-up care with a wide range of specialists. However, after receiving an HCS diagnosis, patients are often left to navigate a complex system of care with variable surveillance services and screening programs across provinces. This study aims to understand the care experiences and needs of HCS patients across Canada to inform clinical practice. Qualitative interviews were conducted with 73 patients (51 female, 21 male, 1 gender-diverse; age range 25-80yrs) diagnosed with HBOC (n= 39) or LS (n= 34) in 3 provinces. Interpretive description was used to analyze the data. Several key themes emerged including navigation, advocacy, and access. HCS patients expressed difficulties in navigating recommended follow-up care and often mentioned a lack of knowledge from their healthcare professionals. Several patients highlighted the need for adequate communication about screening practices following risk-reducing surgeries. Patients often had to self-advocate for referrals and screening appointments. Access to genetic services, specialists and eligibility for screening programs were described as sometimes limited for HCS patients. This is the first study to compare HCS patients' experiences with care across Canada. HCS patients face numerous healthcare challenges including receiving adequate guidance from healthcare professionals, professional and informational supports, and access to screening. Identifying the needs and challenges for HCS patients can optimize care experiences and ultimately improve patient outcomes.