Consensus-Based Guidelines for Communicating a Misdiagnosis of Multiple Sclerosis to Reduce Psychological Distress

Abstract

Background

Multiple sclerosis (MS) misdiagnosis is common, and when discovered, frequently leads to substantial disruption to patients’ lives and anxiety for clinicians. Our objective was to develop expert consensus-based guidelines about how to communicate a misdiagnosis of MS to a patient, to reduce the potential for both psychological distress and litigation.

Methods

A modified Delphi method using a systematic literature review on doctor and patient experiences of the MS diagnosis communication was used to populate items for a first-round questionnaire. Our Delphi panel represented three perspectives (clinicians, people with MS, and published experts in health communication), and we recruited 18 panelists in total (6 per perspective). Consensus was defined a priori as 75% of panelists giving an item the same rating. A feedback round was undertaken with six external reviewers, naïve to the guideline development process, and the panelists. Items were reviewed by the study team and synthesized to create the finalized guidelines.

Results

Consensus was reached for 45 items rated as “very important” and presented in the feedback round. The study team synthesized the 45 items to 27 items. Ten items related specifically to the communication of the MS misdiagnosis and 17 items to generic guidelines highlighted as important in the MS misdiagnosis appointment. Seven recommendations form the guidelines presented here.

Conclusions

Seven consensus-based recommendations offer guidance to practising neurologists in their communication with patients in a situation that has the potential to be highly distressing, for both clinician and patient.