Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives

Article


Anestis, E., Eccles, F., Fletcher, I., French, M. and Simpson, J. 2020. Giving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives. Patient Education and Counseling. 103 (9), pp. 1709-1723. https://doi.org/10.1016/j.pec.2020.03.023
TypeArticle
TitleGiving and receiving a diagnosis of a progressive neurological condition: A scoping review of doctors’ and patients’ perspectives
AuthorsAnestis, E., Eccles, F., Fletcher, I., French, M. and Simpson, J.
Abstract

Objective: Delivering a life changing diagnosis can be a distressing experience for patients and a challenging task for professionals. Diagnosis delivery can be especially difficult for individuals with neurodegenerative diseases such as motor neurone disease (MND), multiple sclerosis (MS) and Parkinson's disease (PD). This review aims to scope the literature on doctors' and patients' perspectives on diagnosis delivery for these conditions in order to enhance our understanding in this area and identify potential research gaps.
Methods: A scoping review methodology was used, and data were summarised using content analysis.
Results: 47 studies fulfilled the inclusion criteria. Studies showed that although patients were generally satisfied with diagnosis delivery, a considerable proportion was still dissatisfied with aspects of the consultation, especially the information and time provided and the doctor's approach. Only six studies addressed doctors' perspectives, which focused more on doctors' practice.
Conclusion: There was a significant research gap in professionals' perspectives. The review also found that although basic standards of good practice were being met, a significant proportion of patients were dissatisfied with diagnosis communication.
Practice implications: Professionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.

KeywordsBreaking bad news; Diagnosis communication; Motor neurone disease; Multiple sclerosis; Neurodegenerative conditions; Parkinson’s disease; Scoping review
Sustainable Development Goals3 Good health and well-being
Middlesex University ThemeHealth & Wellbeing
LanguageEnglish
PublisherElsevier
JournalPatient Education and Counseling
ISSN0738-3991
Publication dates
Online02 Apr 2020
PrintSep 2020
Publication process dates
Deposited02 May 2023
Accepted26 Mar 2020
Output statusPublished
Digital Object Identifier (DOI)https://doi.org/10.1016/j.pec.2020.03.023
Web of Science identifierWOS:000555878100005
Permalink -

https://repository.mdx.ac.uk/item/8q5w6

  • 38
    total views
  • 0
    total downloads
  • 0
    views this month
  • 0
    downloads this month

Export as

Related outputs

Neurologists' current practice and perspectives on communicating the diagnosis of a motor neurodegenerative condition: a UK survey
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
Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis
Anestis, E., Eccles, F., Fletcher, I. and Simpson, J. 2023. Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis. BMC Neurology. 23 (1). https://doi.org/10.1186/s12883-023-03233-3
Healthcare professionals’ involvement in breaking bad news to newly diagnosed patients with motor neurodegenerative conditions: a qualitative study
Anestis, E., Eccles, F., Fletcher, I., Triliva, S. and Simpson, J. 2022. Healthcare professionals’ involvement in breaking bad news to newly diagnosed patients with motor neurodegenerative conditions: a qualitative study. Disability and Rehabilitation. 44 (25), pp. 7877-7890. https://doi.org/10.1080/09638288.2021.2002436
'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19
Simpson, J., Zarotti, N., Varey, S., Anestis, E., Holland, C., Murray, C. and Eccles, F. 2022. 'It's a double whammy': A qualitative study of illness uncertainty in individuals with Parkinson's disease in the context of COVID-19. Chronic Illness. 18 (4), pp. 860-873. https://doi.org/10.1177/17423953211043101
Exploring socioeconomic inequities in access to palliative and end-of-life care in the UK: a narrative synthesis
French, M., Keegan, T., Anestis, E. and Preston, N. 2021. Exploring socioeconomic inequities in access to palliative and end-of-life care in the UK: a narrative synthesis. BMC Palliative Care. 20 (1). https://doi.org/10.1186/s12904-021-00878-0