TY - JOUR

T1 - Giving and receiving a diagnosis of a progressive neurological condition

T2 - a scoping review of doctors’ and patients’ perspectives

AU - Anestis, Eleftherios

AU - Eccles, Fiona

AU - Fletcher, Ian

AU - French, Maddy

AU - Simpson, Jane

N1 - 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

PY - 2020/9/1

Y1 - 2020/9/1

N2 - ObjectiveDelivering 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.MethodsA scoping review methodology was used, and data were summarised using content analysis.Results47 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.ConclusionThere 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 implicationsProfessionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.

AB - ObjectiveDelivering 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.MethodsA scoping review methodology was used, and data were summarised using content analysis.Results47 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.ConclusionThere 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 implicationsProfessionals delivering such diagnoses need to assess and respond to patients' information needs, provide time for questions and maintain an empathic attitude.

U2 - 10.1016/j.pec.2020.03.023

DO - 10.1016/j.pec.2020.03.023

M3 - Journal article

VL - 103

SP - 1709

EP - 1723

JO - Patient Education and Counseling

JF - Patient Education and Counseling

SN - 0738-3991

IS - 9

ER -