title: Nurse led telephone assessment of expanded disability status scale assessment in MS patients at high levels of disability.
abstract: BACKGROUND
  In clinical trials drop out bias reduces the validity of results. This is a particular problem in long-term multiple sclerosis (MS) studies, particularly when patients become progressively disabled and have increasing difficulty attending assessment clinics.
  
  
  OBJECTIVE
  To assess the validity of nurse led telephone assessment of Expanded Disability Status Scale (TEDSS) in MS patients with EDSS scores >6.0.
  
  
  METHODS
  We performed a multi-centre, single blind trial to assess nurse derived TEDSS against physician face-to-face EDSS scores derived from neurological examination (FEDSS) in patients with clinically definite MS and EDSS >6.0.
  
  
  RESULTS
  Ninety patients (n=15 primary progressive MS, n=74 secondary progressive MS, n=1 relapsing remitting MS) had a mean baseline FEDSS of 7.5. TEDSS correlated with FEDSS (r=0.76, p<0.0001) and kappa scores for perfect agreement, within 0.5 of an EDSS points, and within 1 EDSS point were 0.25, 0.86, and 1.0 respectively. Intra-class correlation between the scoring systems was 0.88, representing a high level of agreement.
  
  
  CONCLUSIONS
  Nurse-led telephone assessment of EDSS gives good agreement with physician derived face-to-face EDSS in MS patients with higher disability scores. This may be a valuable tool to improve clinical follow-up in routine clinical practice and improve patient retention in long-term outcome studies.
authors.affiliation: Nuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital Oxford, UK; Department of Neurology, Walton Centre for Neurology and Neurosurgery, Liverpool, UK. Electronic address: shuda@nhs.net.
authors.forename: S
authors.initials: S
authors.lastname: Huda
authors.affiliation: Nuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital Oxford, UK.
authors.forename: A
authors.initials: A
authors.lastname: Cavey
authors.affiliation: Multiple Sclerosis Service NHS Ayrshire and Arran, Scotland, UK.
authors.forename: A
authors.initials: A
authors.lastname: Izat
authors.affiliation: Multiple Sclerosis Service NHS Ayrshire and Arran, Scotland, UK.
authors.forename: P
authors.initials: P
authors.lastname: Mattison
authors.affiliation: Department of Neurology, Walton Centre for Neurology and Neurosurgery, Liverpool, UK.
authors.forename: M
authors.initials: M
authors.lastname: Boggild
authors.affiliation: Nuffield Department of Clinical Neurosciences, University of Oxford, John Radcliffe Hospital Oxford, UK.
authors.forename: J
authors.initials: J
authors.lastname: Palace
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D004185:Disability Evaluation; D006233:Persons with Disabilities; D005260:Female; D006801:Humans; D007407:Interviews as Topic / Q000379:methods*; D016014:Linear Models; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000175:diagnosis*; D009726:Nurses; D016037:Single-Blind Method
keywords: Disability evaluation; Multiple sclerosis; Quality of healthcare; Questionnaires