Neurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey

Article


Anestis, E., Eccles, F., Fletcher, I. and Simpson, J. 2021. Neurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey. BMC Neurology. 21 (1). https://doi.org/10.1186/s12883-021-02062-6
TypeArticle
TitleNeurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey
AuthorsAnestis, E., Eccles, F., Fletcher, I. and Simpson, J.
Abstract

Background
The communication of a life-changing diagnosis can be a difficult task for doctors with potential long-term effects on patient outcomes. Although several studies have addressed the experiences of individuals with motor neurodegenerative diseases in receiving this diagnosis, a significant research gap exists regarding professionals’ perspectives, especially in the UK. This study aimed to assess UK neurologists’ current practice and perspectives on delivering the diagnosis of a motor neurodegenerative disease, explore different aspects of the process and detail the potential challenges professionals might face.
Methods
We conducted an anonymised online survey with 44 questions, grouped into four sections; basic demographic information, current practice, the experience of breaking bad news and education and training needs.
Results
Forty-nine professionals completed the survey. Overall, participants seemed to meet the setting-related standards of good practice; however, they also acknowledged the difficulty of this aspect of their clinical work, with about half of participants (46.5%) reporting moderate levels of stress while breaking bad news. Patients’ relatives were not always included in diagnostic consultations and participants were more reluctant to promote a sense of optimism to patients with poorer prognosis. Although professionals reported spending a mean of around 30–40 min for the communication of these diagnoses, a significant proportion of participants (21–39%) reported significantly shorter consultation times, highlighting organisational issues related to lack of capacity. Finally, the majority of participants (75.5%) reported not following any specific guidelines or protocols but indicated their interest in receiving further training in breaking bad news (78.5%).
Conclusions
This was the first UK survey to address neurologists’ practice and experiences in communicating these diagnoses. Although meeting basic standards of good practice was reported by most professionals, we identified several areas of improvement. These included spending enough time to deliver the diagnosis appropriately, including patients’ relatives as a standard, promoting a sense of hope and responding to professionals’ training needs regarding breaking bad news.

KeywordsBreaking bad news, Diagnosis communication, Patient-provider communication, Neurodegenerative, Motor neurone disease, Multiple sclerosis, Parkinson’s disease, Huntington’s disease
Sustainable Development Goals3 Good health and well-being
Middlesex University ThemeHealth & Wellbeing
LanguageEnglish
PublisherBioMed Central
JournalBMC Neurology
ISSN1471-2377
Electronic1471-2377
Publication dates
Online22 Jan 2021
Print22 Jan 2021
Publication process dates
Deposited23 May 2023
Submitted29 Oct 2020
Accepted20 Dec 2020
Output statusPublished
Publisher's version
License
Copyright Statement

Copyright © The Author(s). 2021
Open Access: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Web address (URL)https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-021-02062-6
Digital Object Identifier (DOI)https://doi.org/10.1186/s12883-021-02062-6
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