title: The UK patient experience of relapse in Multiple Sclerosis treated with first disease modifying therapies.
abstract: BACKGROUND
  The fixed, progressive disability associated with late Multiple Sclerosis (MS) is known to have a major impact on patients and their families, but the impact of relapse earlier in the disease course is less well documented, particularly from the patient׳s perspective. This study aimed to understand the effects of relapse for people with MS (PwMS), focussing on the years immediately after starting disease modifying therapy (DMT) when experience of a relapse may particularly influence a patient׳s opinions of their disease and its therapy.
  
  
  METHODS
  This was a multi-centre, retrospective, observational research study, recruiting patients from 7 UK NHS Hospital Trusts. Consenting patients with relapsing-remitting MS (RRMS), who had started a DMT more than 36 months before screening, were sent a study questionnaire. Data on MS relapses and treatments over 3 years were collected simultaneously from medical records.
  
  
  RESULTS
  One hundred and three patients completed the questionnaires. Relapses were under-reported to health care professionals, with 28% of respondents failing to report their most recent attack and 46% declaring they had failed to report an attack in the past. During their most recent relapse, 67% of those in paid employment reported taking time off sick, 48% reduced working hours temporarily, and 41% worked reduced hours and took time off sick. Sixty-six percent required additional support to undertake routine daily tasks during their most recent relapse. A range of effects of relapse which cannot be measured in financial terms were also reported, including effects on physical abilities, mental health and family roles and relationships.
  
  
  CONCLUSIONS
  This contemporary UK-based study provides an insight into the experience of relapse early in the treatment of RRMS from the patient perspective. The comparison of documented patient reported relapses reveals some deficiencies in the recording of relapses which is important to address in view of the reported impact of individual relapses, and emphasises relapse reduction as a worthy treatment aim.
authors: Royal Victoria Infirmary, Newcastle Upon Tyne, UK.
authors: Martin
authors: M
authors: Duddy
authors: Norfolk & Norwich University Hospital, Norwich, UK.
authors: Martin
authors: M
authors: Lee
authors: Abertawe Bro Morgannwg University Health Board, Swansea, UK.
authors: Owen
authors: O
authors: Pearson
authors: University Hospitals of Leicester, Leicester, UK.
authors: Esmaeil
authors: E
authors: Nikfekr
authors: Queen׳s Hospital, Romford, UK.
authors: Abhijit
authors: A
authors: Chaudhuri
authors: pH Associates Ltd., Derwent House, Dedmere Road, Marlow, SL7 1PG Bucks, UK. Electronic address: franpercival@phassociates.com.
authors: Fran
authors: F
authors: Percival
authors: Novartis Pharmaceuticals UK Ltd., Camberley, Surrey, UK.
authors: Megan
authors: M
authors: Roberts
authors: Novartis Pharmaceuticals UK Ltd., Camberley, Surrey, UK.
authors: Carolyn
authors: C
authors: Whitlock
keywords: Disease modifying therapy; Multiple sclerosis; Patient perspective; Patient survey; Relapse