ArticleBMC neurology2021
Neurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey.
Article in BMC neurology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers, 2 of them syntheses that pooled it.
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Who cites it
12 citing papers in PubMed, 2 syntheses or guidelines pooled it, 21 citations in OpenAlex.
- Methods for informing people with amyotrophic lateral sclerosis/motor neuron disease of their diagnosis.The Cochrane database of systematic reviews · 2023Pooled it
- EMPATIA: A Guide for Communicating the Diagnosis of Neuromuscular Diseases.International journal of environmental research and public health · 2022Pooled it
- Clinician Communication About Uncertainty During Parkinson Disease Diagnostic Consultations.Neurology. Clinical practice · 2026Article
- Optimizing Identification and Management of Depression in Neurological Diseases: A Narrative Review and Expert Perspective.Neuropsychiatric disease and treatment · 2026Article
- Observed and Patient-Perceived Information Provision When Diagnosed With Parkinson's Disease.Movement disorders clinical practice · 2025Observational
- 'I Knew Nothing About Parkinson's': Insights into Receiving a Diagnosis of Parkinson's Disease and the Impact of Self-Management, Self-Care, and Exercise Engagement, from People with Parkinson's and Family Members' Perspectives: Qualitative Study.Geriatrics (Basel, Switzerland) · 2025Article
- Consensus-Based Guidelines for Communicating a Misdiagnosis of Multiple Sclerosis to Reduce Psychological Distress.Brain and behavior · 2024Article
- Delivering the diagnosis of multiple system atrophy: a multicenter survey on Japanese neurologists' perspectives.BMC neurology · 2024Article
- Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis.BMC neurology · 2023Article
- Hopamine as Personalized Medicine for Persons with Parkinson's Disease.Journal of Parkinson's disease · 2023Article
- Communication of the Diagnosis of Spinal Muscular Atrophy in the Views of Patients and Family Members, a Qualitative Analysis.International journal of environmental research and public health · 2022Article
- Communicating the Spinal Muscular Atrophy diagnosis to children and the principle of autonomy.BMC pediatrics · 2022Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe 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.
methodsWe 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.
resultsForty-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%).
conclusionsThis 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.