The British Columbia Hereditary Cancer Follow-up Initiative (HCFI): A provincial approach to providing support to people living with hereditary cancer syndromes

ABSTRACT

Background The BC Cancer Hereditary Cancer Program (HCP) is a consultative service providing hereditary cancer genetic counselling and testing across BC and Yukon. Risk management is available for a subset of patients through the HCP High-Risk Clinic;however, the majority of individuals with hereditary cancer risk are followed by their primary care providers. To better understand barriers and gaps in accessing follow-up care, the HCP launched a clinical pilot, the Hereditary Cancer Follow-up Initiative (HCFI). Methods Between July 2020 to March 2021, 3826 eligible individuals (19 and over) were contacted by email or mail and invited to complete an online questionnaire. Information was obtained on access and frequency of cancer surveillance/screening, risk reducing surgeries, family communication about genetic risk and additional support needs. Completed surveys were reviewed by a genetic counsellor (GC) who provided phone appointments to those who reported screening discordant with current recommendations or who requested follow-up for additional support. Results To date, 885 (23%) surveys have been completed. Response rates were higher for patients contacted by email as compared to mail (51% vs 18%). Of the completed surveys, 60% (528) of respondents required additional GC follow-up. 228 individuals (26%) reported screening inconsistent with current recommendations. Reasons for delayed or missed screening included lack of access to a health care provider to organize screening, lack of clarity or knowledge regarding screening recommendations, difficulty traveling to appointments and delays due to the COVID-19 pandemic. Conclusions Preliminary results show a positive impact of the HCFI and highlight the need for improved continuity of care. Data gathered by this initiative will be used to advocate for resources to improve access to early detection and preventive measures, facilitate cascade carrier testing and provide additional psychosocial supports for high-risk patients and families, ultimately reducing risk and improving quality of life for these individuals.