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Using patient perspectives to inform communication training materials for health care professionals discussing BRCA mutation testing

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posted on 2023-06-07, 07:47 authored by Valerie ShillingValerie Shilling, Susan Catt, Valerie JenkinsValerie Jenkins, Lesley FallowfieldLesley Fallowfield
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.

History

Publication status

  • Published

File Version

  • Published version

Journal

Breast Cancer Research and Treatment

ISSN

0167-6806

Publisher

Springer

Event location

Netherlands

Department affiliated with

  • Sussex Health Outcomes Research & Education in Cancer (SHORE-C) Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date

2020-08-26

First Open Access (FOA) Date

2020-08-26

First Compliant Deposit (FCD) Date

2020-08-25

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