A policy proposal for a dedicated hereditary breast and ovarian cancer syndrome follow-up and navigation program

Puddester, Rebecca (2021) A policy proposal for a dedicated hereditary breast and ovarian cancer syndrome follow-up and navigation program. Practicum Report. Memorial University of Newfoundland. (Unpublished)

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Abstract

Background and Purpose: Individuals who carry certain inherited pathogenic genetic variants (PVs) have an increased lifetime risk of developing hereditary breast and ovarian cancer (HBOC). Despite the effectiveness of risk reduction modalities, many PV carriers in Newfoundland and Labrador (NL) are unidentified. Moreover, for known PV carriers in the province, there is no systemic support available to them in their long-term risk management. Therefore, these high-risk individuals and families are not receiving the information and support needed to live a long, healthy life vis-à-vis their carrier status. The purpose of this practicum is to provide a rationale and recommendations for a prospective nurse navigation and follow-up program for HBOC PV carriers in NL. Methods: A literature review, key informant consultations, and an environmental scan were conducted and used to inform a policy proposal for a novel program. Results: Significant systemic barriers exist for PV carriers; many HBOC PV carriers and families have unmet information and psychosocial needs in the current primary care provider- dependent follow-up processes. A need exists for a novel follow-up and navigation and program. The literature review, consultations, and environmental scan were used to inform the five sub recommendations for the follow-up program including: a 1) carrier registry, 2) a nurse-led navigation program for PV carriers, 3) a multidisciplinary approach, 4) a person and family- centered approach, and 5) virtual and electronic delivery methods. Conclusion: There is an unrivaled, cost-effective opportunity to improve outcomes in NL HBOC PV carriers through the proposed follow-up and navigation program.

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