Results from SPECTRUM: A survey of healthcare professionals to understand current diagnosis and management practices for secondary progressive multiple sclerosis in the United Kingdom.

Abstract

BACKGROUND\nRecognising the transition from relapsing remitting multiple sclerosis (RRMS) to secondary progressive MS (SPMS) in clinical practice can be challenging. With disease-modifying therapies (DMTs) commonly used for RRMS accepted to be less efficacious once progression has occurred, treatment options for progressive forms of MS have been limited. Emergence of new DMTs in SPMS are changing the treatment landscape. There is a need to better understand current practice and the factors underlying it, to facilitate consensus on the overall management of SPMS and optimise diagnostic and management decisions. This survey project aimed to assess current practices for the diagnosis and management of patients with SPMS in the UK.\n\n\nMETHODS\nHealthcare professionals (HCPs) involved in the management of patients with SPMS from geographically distributed MS neurology centres in the UK participated in face-to-face or telephone interviews, facilitated by a semi-structured questionnaire. The survey data were descriptively analysed using quantitative and qualitative methods.\n\n\nRESULTS\nFifty-nine HCPs (41 neurologists, 15 specialist nurses and 3 other ), from 59 UK centres took part. Sixty-one percent (n\xa0=\xa036/59) of respondents applied a specific definition for SPMS, although only 6% of these (2/36) used the Lublin 2014 phenotype criteria. Expanded Disability Status Scale (EDSS) score increase with an absence of relapses was an important consideration for SPMS diagnosis for 83% (n\xa0=\xa049/59) of respondents, and 36% (n\xa0=\xa021/59) considered this to be the most important piece of evidence that they look for when they suspect a patient is transitioning from RRMS to SPMS. The median (interquartile range [IQR]) estimated time between first suspicion and diagnosis of SPMS was 12 months (12-24 [n\xa0=\xa045/59]), with concerns over withdrawing DMTs and the psychological impact of a diagnosis on patients the most commonly reported reasons for reluctance to diagnose. Seventy-three percent (n\xa0=\xa043/59) of respondents followed specific guidelines for DMT management of patients transitioning from RRMS to SPMS, with most (86%, n\xa0=\xa037/43) using the NHS England algorithm. Ninety-eight percent (n\xa0=\xa058/59) use DMTs to treat patients they suspect may be transitioning to SPMS, and 51% (n\xa0=\xa030/59) reported using DMTs for newly diagnosed SPMS patients. Approximately 1 in 5 HCPs may consider continuing DMTs beyond EDSS 7.0 in certain circumstances.\n\n\nCONCLUSION\nThe survey highlighted variation across the UK in SPMS definition, diagnosis and reported real-world management. Disparity in practice may result in unnecessary variations in treatment patterns and consequently outcomes. HCPs should be equipped to make timely and accurate decisions, which will be important in improving access to appropriate therapies for patients with SPMS.