A consensus study of communicating a misdiagnosis of Multiple Sclerosis to reduce distress.
Creators: name: Lesley Baufeldt, Angela
Publisher: name: University of Lincoln
Year: 2024
Subjects: C842 - Clinical psychology
C845 - Clinical neuropsychology

description: <b>Background</b>: People who have been incorrectly diagnosed (misdiagnosed) with multiple sclerosis experience distress when this information is communicated to them. This is due to the decisions they made at the time of the initial diagnosis and the resulting implications of removing the diagnosis. Neurologists encounter barriers when communicating a misdiagnosis to a patient: including experiencing anxiety around the patient’s reaction and how the clinician might manage this; fear of litigation; time-pressured appointments; and long waiting lists. Recommendations for communicating challenging information is available in the breaking bad news literature; however, these have been developed for cancer and palliative care populations and may not be appropriate for MS. <b>Aim</b>: To develop consensus-based clinical guidelines, which provides guidance to neurologists when communicating an MS misdiagnosis to a patient that reduces the potential for distress. <b>Method</b>: A modified Delphi approach using three rounds was used to identify statements for inclusion in the guidelines. Due to an insufficient number of studies reporting on the misdiagnosis communication of MS, a systematic literature review was undertaken on doctors’ and patients’ perspectives of the communication of a diagnosis of MS. Statements that report on the principles and practice for consideration when communicating a MS diagnosis were extracted and supplemented with statements from the wider literature reporting on neurological conditions. The Delphi was conducted online using the Qualtrics platform and panelists were asked to rate statements on their level of importance. Consensus was defined a priori as 75% or higher. A Feedback Round, comprising of external reviewers naïve to the Delphi process contributed comments to the statements which gained consensus from the Delphi panelists.<b>Results</b>: We recruited 18 people to be Delphi panelists, and who represented three different perspectives: clinicians (n=6); experts-by-experience (n=6); and published experts in health communication (n=6). We extracted 82 statements from the literature, which were organised into five domains: prior preparation; delivery of the information, managing emotions; checking understanding and clarifying; and summary, strategy, and signposting. A total of 46 statements gained consensus as ‘very important’, nine as ‘somewhat important’, two as ‘not important’, two were rejected, and 22 statements did not reach consensus. The 45 statements, which gained consensus as ‘very important’ were reviewed by the study team. Similar statements were combined, resulting in a synthesised list of 27 statements. Of the 27 statements, 17 statements were identified as general good practice and 10 statements specifically related to the communication of an MS misdiagnosis. These 10 statements were distilled into seven recommendations that offer guidance to neurologists. <b>Conclusion</b>: Seven consensus-based recommendations are presented and provide neurologists with guidance when communicating a misdiagnosis of MS to patients. The recommendations should be used in conjunction with general good practice guidelines to ensure consistent and effective communication and reduce the likelihood of poor patient satisfaction with the communication. Further research should consider testing the statements that did not reach consensus and those this panel did not rate as ‘very important’ within different settings, populations, and services.