Abstract
BACKGROUND: According to current UK guidelines, everyone with progressive multiple sclerosis (MS) should have access to an MS specialist, but levels of access and use of clinical services is unknown. We sought to investigate access to MS specialists and use of clinical services and disease-modifying therapies (DMTs) by people with progressive MS in the United Kingdom. METHODS: A UK-wide online survey was conducted via the UK MS Register. The inclusion criteria were age 18 years or older, primary or secondary progressive MS, and a member of the UK MS Register. Participants were asked about access to MS specialists, recent clinical service use, receipt of regular review, and current and previous DMT use. Participant demographic data, quality of life, and disease impact measures were from the UK MS Register. RESULTS: In total, 1298 individuals responded: 7% were currently taking a DMT, 23% had previously taken a DMT, and 95% reported access to an MS specialist. The most used practitioners were MS doctors/nurses (50%), general practitioners (45%), and physiotherapists (40%). Seventy-four percent of participants received a regular review, although 37% received theirs less often than annually. Current DMT use was associated with better quality of life, but past DMT use was associated with poorer quality of life and higher impact of disease. CONCLUSIONS: Access to and use of MS specialists was high. However, a gap in service provision was highlighted in both receipt and frequency of regular reviews.