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  • Scoping review_revised_manuscript_1st_March PURE

    Rights statement: This is the author’s version of a work that was accepted for publication in Patient Education and Counseling. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Patient Education and Counseling, 103 (9), 1709-1723, 2020 DOI: 10.1016/j.pec.2020.03.023

    Accepted author manuscript, 329 KB, PDF document

    Embargo ends: 2/04/21

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

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

Research output: Contribution to journalJournal articlepeer-review

Published
<mark>Journal publication date</mark>1/09/2020
<mark>Journal</mark>Patient Education and Counseling
Issue number9
Volume103
Number of pages15
Pages (from-to)1709-1723
Publication StatusPublished
Early online date2/04/20
<mark>Original language</mark>English

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.

Bibliographic note

This is the author’s version of a work that was accepted for publication in Patient Education and Counseling. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Patient Education and Counseling, 103 (9), 1709-1723, 2020 DOI: 10.1016/j.pec.2020.03.023