Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis

Abstract

The Expanded Disability Status Scale (EDSS) is the current 'gold standard' for monitoring disease severity in multiple sclerosis (MS). The EDSS is a physician-based assessment. A patient-related surrogate for the EDSS may be useful in remotely capturing information. Eighty-one patients (EDSS range 0-8) having EDSS as part of clinical trials were recruited. All patients carried out the web-based survey with minimal assistance. Full EDSS scores were available for 78 patients. The EDSS scores were compared to those generated by the online survey using analysis of variance, matched pair test, Pearson's coefficient, weighted kappa coefficient, and the intra-class correlation coefficient. The internet-based EDSS scores showed good correlation with the physician-measured assessment (Pearson's coefficient = 0.85). Weighted kappa for full agreement was 0.647. Full agreement was observed in 20 patients who had EDSS scores ranging from 0 to 6; many of those with 100 % agreement had scores of 5.5-6 (n = 8).The intra-class coefficient was 0.844 overall for all cases. Internet-based FS and EDSS show good agreement with physician-measured scores. Agreement was better in patients with higher scores. Overall patient satisfaction with the web-based assessment was high. An internet-based assessment tool is likely to prove an invaluable tool in the long-term monitoring in MS.

A comparative analysis of Patient-Reported Expanded Disability Status Scale tools

“…The tools were developed over a period of 15 years studying a total of 460 patients. Three of the studies deployed their questionnaire directly to the patients in a printed format, 4 – 6 while one was assessed using an online electronic format, 8 and another was deployed via telephone. 7 The basic design concept is similar among the tools, using a combination of dichotomous, multiple choice or Likert-type questions to assess each of the FS scores within the EDSS, as well as ambulation and dependence on help in daily activities; exceptions are Tool 4 which does not use Likert-type questions, and Tool 5 which includes also some scaling questions asking patients to give percentages.…”

“…In all studies, physician EDSS was performed by raters working in the field of MS, in established centres; raters were all trained and assessed, and in two of the studies this was done using a standardized audiovisual package (Neurostatus). 7 , 8 Study populations were predominantly female, ranging from 56% to 82%, and approximately half the cases were relapsing–remitting MS. There was no difference between studies with respect to gender, MS type or age.…”

“…There have been several tools developed to enable patients to report their own EDSS score, that is, a Patient-Reported EDSS (henceforth referred to as PREDSS). 4 – 11 PREDSS is potentially useful in various situations such as patient follow-up during long term or geographically challenging studies where clinic attendance is difficult, or to enable EDSS assessment in busy or under-staffed clinical service environments.…”

The Use of Digital and Remote Communication Technologies as a Tool for Multiple Sclerosis Management: Narrative Review

“…Although the physician-administered EDSS [ 26 ] is the current gold standard for monitoring MS disease severity [ 27 ], a patient-administered version could help to capture such data remotely in settings where patients cannot undergo regular physician assessment [ 27 ]. With this in mind, a pilot study was conducted [ 27 ] that compared an Internet-based version of the telephone-based EDSS [ 28 ] with the original physician-administered EDSS [ 26 ]. Overall patient satisfaction with the Web-based version was high, and results from it correlated well with those from the physician-administered version [ 27 ].…”

“…With this in mind, a pilot study was conducted [ 27 ] that compared an Internet-based version of the telephone-based EDSS [ 28 ] with the original physician-administered EDSS [ 26 ]. Overall patient satisfaction with the Web-based version was high, and results from it correlated well with those from the physician-administered version [ 27 ]. Although further studies are needed to validate the Internet-based tool, these findings suggest it will be invaluable in future long-term monitoring of patients with MS [ 27 ].…”