Using patient perspectives to inform communication training materials for health care professionals discussing BRCA muta
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CLINICAL TRIAL
Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing Valerie Shilling1 · Susan Catt1 · Valerie Jenkins1 · Lesley Fallowfield1 Received: 6 July 2020 / Accepted: 8 August 2020 © The Author(s) 2020
Abstract Purpose As demand for genetic testing grows and a wide range of health care professionals (HCPs) are potentially involved in discussions about testing and delivering results, we developed an educational package to help HCPs with these conversations. Methods To inform the content of training materials, we conducted interviews with 11 women four of whom had BRCA1 and seven with BRCA2 mutations. Five women had or were currently receiving breast cancer treatment. Ages ranged from 38 to 77 years. Interviews were audio-recorded, transcribed verbatim and analysed using the Framework approach to thematic analysis. Results We identified 18 themes and 12 subthemes across the interviews, encompassed by six overarching themes: risk, decision-making, information and understanding, communication and improvement, accessing the system: process and frustration, emotional and social drivers. Conclusions The findings informed the didactic components of an educational communication workshop and a summary document for attendees. Qualitative interviews provide an important way of incorporating the patient perspective into communication training materials for HCPs by highlighting key issues that matter most to the patient. Keywords Communication · Genetic testing · BRCA · Breast cancer · Qualitative
Introduction BRCA1 or 2 mutations may convey lifetime (to age 80) risks of breast cancer of up to 72% and 69%, respectively, and 44% and 17% risks of ovarian cancer [1]. Demand for accessible testing is growing but genetic services are operating under rapidly increasing strain and demand may exceed the availability of counselling services. As a result, many different healthcare professionals (HCPs) are potentially involved in discussions about the need for genetic testing, the consequences of a test result and implications for other family members [2, 3]. To provide genetic risk assessment, testing, and counselling, HCPs need a sound knowledge base, good * Valerie Shilling [email protected] 1
communication skills and an ability to offer appropriate psychosocial support [4–6]. They must be able to interpret and then clearly convey risk information together with the implications this has for referral and management options [7]. This can be particularly challenging as many HCPs struggle when explaining numerical data [8]. Checking understanding and tailoring the discussion accordingly is essential [6, 7, 9, 10] while ensuring adequate detail is provided to meet standards for informed consent [11]. Recognition of the emotional context is also crucial, but such concerns are not consistently explored [12]. Given the difficulties inherent in communication about genetic risk, it is unsurprising that HCPs without specific genetic train
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