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. 2022 Jan 23;5(1):e474.
doi: 10.1002/hsr2.474. eCollection 2022 Jan.

Transition to secondary progressive multiple sclerosis: The consequences for patients and healthcare systems, a healthcare professional survey

Sophie Clare Laura Caseby  1 , Fern Amy Woodhouse  2 , Stephen Maxwell Montgomery  2 , Michel Anton Kroes  3 , Martin Edward Duddy  4
Affiliations

Transition to secondary progressive multiple sclerosis: The consequences for patients and healthcare systems, a healthcare professional survey

Sophie Clare Laura Caseby et al. Health Sci Rep. .

Abstract

Background and aims: Transition to secondary progressive multiple sclerosis (SPMS) from relapsing-remitting MS (RRMS) is an expected part of the disease trajectory for most patients. However, the transition is challenging to identify due to the gradual nature of progression, and the complications of superimposed relapses, comorbidities, and natural variability in symptoms. This healthcare professional (HCP) survey sought to characterize the transition to and management of SPMS in UK clinical practice.

Methods: Telephone interviews with 20 neurologists and MS specialist nurses from England and Scotland gathered quantitative and qualitative responses. Numerical analyses and theoretical thematic methods were used to identify key emerging themes.

Results: The burden SPMS imposes on patients and caregivers was a major theme; discharge from specialist services is common, leading to a sense of abandonment. Respondents acknowledged substantial hesitancy toward identifying SPMS, predominantly due to restricted options of licensed and reimbursed disease-modifying therapies (DMTs) for SPMS compared with RRMS. Currently, HCPs continue DMTs under a label of RRMS, even after recognition of progression. This survey identified MS to be unusual in comparison with other disease areas in that reimbursement guidelines have a direct impact on clinicians' decisions around disease staging. Respondents suggested reimbursed DMTs proven to slow disability progression in SPMS will create a step-change in identifying SPMS, providing rationale to acknowledge progression earlier while removing key obstacles to identification. To aid this change, respondents identified a need for SPMS-specific diagnostic guidance, despite substantial divergence in implementation of current guidance.

Conclusions: In contrast to the current heterogeneity, a more structured and standardized approach to the identification of SPMS, along with guidelines on treatment, will ensure patients can maximally benefit as treatment options for SPMS evolve.

Keywords: disease‐modifying therapies; multiple sclerosis; progressive; quality of life; symptomatic treatment.

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Conflict of interest statement

Stephen Maxwell Montgomery and Fern Amy Woodhouse are employees of Costello Medical, who were contracted by Novartis Pharmaceuticals UK to undertake the work. Sophie Clare Laura Caseby was also an employee of Costello Medical at the time of the study. Michel Anton Kroes is an employee of Novartis Pharmaceuticals UK and a Novartis shareholder. Martin Edward Duddy has received honoraria for advisory boards, speaker's fees, research funding, and expenses to attend educational events from Novartis, Biogen, Celgene/Bristol‐Myers Squibb, Merck Sharp & Dohme, Roche, Sanofi Genzyme, and TG Therapeutics.

Figures

FIGURE 1
FIGURE 1
Geographical spread, demographics, and caseload of respondents. Nurses and neurologists are grouped in the map to preserve anonymity. MS, multiple sclerosis
FIGURE 2
FIGURE 2
Mean ranking points for influence on the hesitancy toward identifying patients as SPMS. Ranked as first most influential factor: 4 points; ranked as second most influential factor: 3 points; ranked as third most influential factor: 2 points; ranked as fourth most influential factor: 1 point. The four factors were provided in the questionnaire to the respondents. SPMS, secondary progressive multiple sclerosis
FIGURE 3
FIGURE 3
Respondent quotations highlighting the need for clearer and widely adopted guidelines to ease the transition to SPMS. MS, multiple sclerosis; SPMS, secondary progressive multiple sclerosis
See this image and copyright information in PMC

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