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

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  • Additional Information
    • Source:
      Publisher: BioMed Central Country of Publication: England NLM ID: 100968555 Publication Model: Electronic Cited Medium: Internet ISSN: 1471-2377 (Electronic) Linking ISSN: 14712377 NLM ISO Abbreviation: BMC Neurol Subsets: MEDLINE
    • Publication Information:
      Original Publication: London : BioMed Central, [2001-
    • Subject Terms:
      Neurologists* ; Physician-Patient Relations* ; Practice Patterns, Physicians'* ; Truth Disclosure*; Neurodegenerative Diseases/*diagnosis; Communication ; Humans ; Male ; Surveys and Questionnaires ; United Kingdom
    • 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.
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    • Contributed Indexing:
      Keywords: Breaking bad news; Diagnosis communication; Huntington’s disease; Motor neurone disease; Multiple sclerosis; Neurodegenerative; Parkinson’s disease; Patient-provider communication
    • Publication Date:
      Date Created: 20210123 Date Completed: 20210405 Latest Revision: 20210405
    • Publication Date:
      20240105
    • Accession Number:
      PMC7821644
    • Accession Number:
      10.1186/s12883-021-02062-6
    • Accession Number:
      33482753