Nurse led telephone assessment of expanded disability status scale assessment in MS patients at high levels of disability

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 05 of an EDSS points, and within 1 EDSS point were 025, 0.86, and 1.0 respectively. Intra-class correlation between the scoring systems was 0.88, representing a high level of agreement. Conclusion: 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. (C) 2016 Elsevier B.V. All rights reserved.