Can the Expanded Disability Status Scale be assessed by telephone?

Abstract

Information from patients who are unable to continue their visits to a study centre may be of major importance for the interpretation of results in multiple sclerosis (MS) clinical trials. To validate a questionnaire based on the Expanded Disability Status Scale (EDSS), patients in five different European centres were assessed independently by pairs of trained EDSS raters, first by telephone interview and a few days later by standardized neurological examination. Seventy women and 40 men with an average age of 43.7 years (range 19-74 years) were included in the study. Mean EDSS score at the last visit was 4.5 (0-9). EDSS assessment by telephone was highly correlated with the EDSS determined by physical examination (Pearson's correlation coefficient = 0.95). An intraclass correlation coefficient (ICC) of 94.8% was found for the total sample; 77.6% and 86%, respectively, for patients with EDSS < 4.5 (n = 46) and > 4.5 (n = 64). Kappa values for full agreement were 0.48; for variation by +0.5 steps and +1.0 steps, 0.79 and 0.90, respectively. Best agreement could be found in higher EDSS scores, where assessment by telephone interview might be needed most. The telephone questionnaire is a valid tool to assess EDSS score in cases where the patient is unable to continue visiting a study centre or in long-term follow-up of trial participants.

Walking function in clinical monitoring of multiple sclerosis by telemedicine

“…These results compare favorably with the ones observed by the telephonic interview in terms of better agreement with the EDSS and the FS scores, with a higher percentage of full agreement between conventional and remote assessment. Similar to a previous report with an equivalent kappa coefficient [13], a better reliability was found in patients with higher EDSS scores, indicating that in more disabled patients (EDSS C 4.5), the telephonic interview could be useful when they are unable to attend a visit. The finding of a low agreement between self-and measured-ambulation has been noted previously [27,28].…”

“…Every 6 months, this remote visit also included an evaluation of fatigue and depression [12]; fatigue was determined by the modified fatigue impact scale (MFIS), which scores range from 0 to 84, with higher scores indicating a greater impact of fatigue on a patient's activities, and depression was determined by the mental health inventory (MHI) which scores range from 0 to 100, with higher scores indicating better mental health. At the end of the first year, the assessment of the EDSS by a telephone questionnaire [13] and the quality of life by the EuroQoL 5D-5L [14] instrument were administered to all patients. The additional visit at year 2 included the conventional visit with the recording of the EDSS, the MSFC and the performance of the 6MWT (Fig.…”

A Longitudinal Study of Abnormalities on MRI and Disability from Multiple Sclerosis

“…18 For those who could not attend the examination, an EDSS score was obtained over the telephone with the use of a standard questionnaire; this approach was previously validated in a study of 110 patients, in which the intraclass correlation coefficient for the examination and telephone scores was 94.8 percent. 19 …”

On the origin of Neurostatus

“…In order to assess the effects of the training and to accountably ensure familiarity of investigators with the scoring system for the FS and EDSS, first a paper and pencil version, then an electronic test module were developed (Kappos et al, 2015). To improve ascertainment in follow-up studies we further developed and validated a version that could be administered through a telephone interview when it was impossible to perform a physical examination (Lechner-Scott et al, 2003).…”