Beyond BRCA: A scoping review of person-centred care for women diagnosed with a BRCA gene mutation

OBJECTIVES: Women diagnosed with BRCA1/2 mutations face significantly elevated lifetime risks of breast and ovarian cancer. Due to the distinctive biopsychosocial implications of a BRCA diagnosis, the care trajectory for these women is highly personalised, yet their care needs frequently remain unmet. The aim was to provide a first overview of the evidence of women's experiences with person-centred care (PCC) within BRCA care and their needs for further PCC implementation. DESIGN: A scoping review, guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, was conducted. DATA SOURCES: Medline, Embase, Web of Science Core Collection, Cochrane Central Register of Controlled Trials, CINAHL Plus and Google Scholar were searched for literature published between January 2004 and February 2024. ELIGIBILITY CRITERIA: Peer-reviewed, primary studies on BRCA and PCC using quantitative, qualitative and mixed-methods designs were eligible. The criteria were iteratively refined to include publications based on samples that were >80% female and >80% BRCA positive. DATA EXTRACTION AND SYNTHESIS: Titles and abstracts were screened with ASReview, a validated AI-driven tool. Data on PCC evidence and needs were extracted based on the eight Picker Principles of PCC and synthesised by describing themes within each principle. RESULTS: Of the 3801 articles identified as potentially relevant, 18 were included in the review. PCC needs were more prevalent than evidence of their implementation. Most of women's positive experiences with PCC focused on 'clear information, communication and support for self-care', while limited to no evidence existed for other principles. The highest needs were found for increased 'emotional support, empathy and respect', 'attention to physical and environmental needs', and 'clear information, communication and support for self-care'. All articles reported demands for more holistic, yet personalised care, though PCC was not mentioned explicitly. CONCLUSIONS: This review suggests a person-centred approach is relevant to improving the standard of BRCA care for women. The first evidence of women's experiences with PCC demonstrates how care delivered with sensitivity and respect for individual backgrounds can support women throughout their BRCA trajectory. Yet, substantial unmet needs remain among female BRCA carriers, highlighting the importance of further research and PCC implementation to enhance the quality of postdiagnostic care.