Discussing the potential for progression with patients newly diagnosed with multiple sclerosis: When, how, and why?

Mult Scler Relat Disord. 2022 Dec:68:104230. doi: 10.1016/j.msard.2022.104230. Epub 2022 Oct 7.

Abstract

Despite convergent evidence that upwards of 50% of patients with MS transition from a relapsing to progressive phase within 20 years of disease onset, and the recent acknowledgement of the commonality of progression independent of relapses, there remains no consensus regarding the nature and timing of a discussion about the possibility of a secondary progressive phase with relapsing-remitting MS patients. Some neurologists prefer to conduct this at the inaugural visit to provide more information about disease behaviour and potential planning that might entail, while others may defer any discussion about this phase, as there is no clear consensus for it and it can be a sensitive topic, with concern that too early a discussion could worsen anxiety and discourage or delay decisions regarding disease modifying treatments. Furthermore, it is unknown at onset which patients will transition to a progressive phenotype. This review and opinion paper will outline some of the opportunities and challenges associated with such a disclosure, and attempt to provide a balanced, patient-centred approach to address this delicate topic.

Keywords: Autonomy; Beneficence; Counselling; SPMS; Secondary progressive multiple sclerosis.

Publication types

  • Review
  • Letter

MeSH terms

  • Disease Progression
  • Humans
  • Multiple Sclerosis* / diagnosis
  • Multiple Sclerosis* / therapy
  • Multiple Sclerosis, Chronic Progressive* / diagnosis
  • Multiple Sclerosis, Relapsing-Remitting* / diagnosis
  • Recurrence