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Discussing multiple sclerosis (MS) progression with patients: experiences of UK healthcare professionals from the SPECTRUM project
Abstract
Background: Receiving a diagnosis of secondary progressive multiple sclerosis (SPMS) can have a significant psychological impact on patients. Identifying how and when to initiate discussions about multiple sclerosis (MS) progression may be challenging for health care professionals (HCPs). Objectives: To understand how HCPs in the United Kingdom discuss the progression from relapsing-remitting MS (RRMS) to SPMS with patients. Methods: Interviews were conducted in 2019 with 59 HCPs from geographically dispersed UK MS centers (MS neurologist, n = 41; MS specialist nurse, n = 15; other HCP, n = 3) using a structured questionnaire. Topics covered included current practices for defining, diagnosing, and managing SPMS, and discussing SPMS with patients. This analysis focuses on discussing SPMS with patients. n < 59 indicates missing responses. Results: Progression from RRMS to SPMS is most commonly discussed with patients at the following time points (not mutually exclusive): when the SPMS diagnosis is confirmed (n = 56/58 [97%]), when a patient asks about SPMS after researching their condition (n = 56/58 [97%]), or when SPMS is first suspected (n = 45/58 [78%]). Only 20/58 HCPs (34%) discuss SPMS at initial RRMS diagnosis and 28/58 (48%) during the RRMS disease course. Most HCPs (n = 43/57 [75%]) reported that a neurologist is usually the first person to discuss progression with the patient. The most common terms used by HCPs when discussing SPMS with patients were “progression or progressive” (n = 45/59 [76%]), followed by “transition” (n = 19/59 [32%]), “worsening” (n = 16/59 [27%]), and “disability” (n = 9/59 [15%]). However, a number of HCPs reported that they would specifically avoid using the same terms (disability [n = 13/59 (22%)], progression or progressive [n = 10/59 (17%)], worsening [n = 8/59 (14%)], transition [n = 4/59 (7%)]). The median estimated time between first suspecting and diagnosing SPMS was 12.0 (IQR 12.0-24.0) months (n = 45). The most common explanations for reluctance to diagnose SPMS were concerns over withdrawing treatment (n = 49/59 [83%]) and psychological impact on patients (n = 39/59 [66%]). Conclusions: There is substantial variation in the United Kingdom in both how and when HCPs discuss the transition from RRMS to SPMS with patients. Discussions may be delayed until SPMS is suspected or even confirmed, which can take a year or more. Further training and support for HCPs may be needed to facilitate discussions with patients about MS progression and provide them with appropriate support during the transition phase.
Authors
M Duddy, C Wilkinson, K Rhys, S Medhurst
Journal
Therapeutic Area
Neurology
Center of Excellence
Real-world Evidence & Data Analytics
Year
2020
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