Breast. 2018 May 11;40:116-122. doi: 10.1016/j.breast.2018.05.003. [Epub ahead of print]
Patients' perspectives and experiences concerning barriers to accessing information about bilateral prophylactic mastectomy.
Glassey R1, O'Connor M2, Ives A3, Saunders C4, kConFab Investigators5, O'Sullivan S6, Hardcastle SJ2.
To explore the barriers and experiences of accessing information for women who have received genetic risk assessment/testing results for breast cancer (BC) and are considering a bilateral prophylactic mastectomy (BPM) and, exploring participants' preferences concerning information and support needs.
A qualitative retrospective study guided by interpretative phenomenological analysis was utilised. Semi-structured interviews were conducted with forty-six women who were either considering BPM or had already undergone the surgery.
Three themes identified barriers to accessing information; difficulties accessing information, inconsistent information and clinical focus/medicalized information. A fourth theme - preferences of information and support needs, identified three subthemes; these were, psychological support, clearly defined processes and photos of mastectomies/reconstruction surgeries.
Barriers to accessing information appeared to be widespread. A lack of integrated services contributed to inconsistent information, and medicalized terminology/clinical focus of consultations further complicated understanding. Preferences for information include clearly defined processes, so women know the pathways after confirmation of familial BC risk. Clinical implications include a multidisciplinary team approach, and a protocol that reflects current practice.
Copyright © 2018 Elsevier Ltd. All rights reserved.
Information barriers; Information needs; Prophylactic mastectomy; Support needs