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A NOVEL INTERNET–BASED METHOD OF CAPTURING OUTCOMES IN MULTIPLE SCLEROSIS
  1. Sara Leddy,
  2. Shahrzad Hadavi,
  3. Andrew Mc Carren,
  4. Gavin Giovanonni,
  5. Ruth Dobson
  1. Barts and the London Medical School

    Abstract

    Objective To validate a novel internet–based method of capturing outcomes in Multiple Sclerosis.

    Introduction The Expanded Disability Status Scale (EDSS) is the current ‘gold standard’ for monitoring disease in Multiple Sclerosis (MS). Its use is particularly dominant in clinical trials. The EDSS is a physician–based assessment, taking about an hour to perform. Disabled patients may find travelling difficult, and an internet–based EDSS may be useful in remotely capturing information.

    Methods 81 patients (29 primary progressive, 5 relapsing progressive, and 47 relapsing–remitting; EDSS range 0–8) who were having EDSS as part of clinical trials at the Royal London Hospital were recruited. The group consisted of 49 women and 39 men. Mean age was 41.5 years, (range 18–68). EDSS from previous visit scores ranged from 0–8.5. The mean duration of disease was 6.6 years (range <1–29 years). All patients carried out the web–based survey with minimal assistance. Full EDSS scores were available for 78 patients. Patients were seen by their assessing physician for EDSS, and then completed the online survey. 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.

    Results 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.One–way analysis of varianceshowedEDSS agreement was best at scores <2.5 and >4.5, with >50% patients showing a difference of 0.5–1. Full agreement was observed in 20 patients who had EDSS scores ranging from 0–6; 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. It was 0.50 for patients with an EDSS<4.0 and 0.52 for EDSS>4.0.

    Functional system (FS) comparison was available for 52 patients. Weighted kappa values for visual, brainstem, pyramidal, cerebellar, sensory, bowel/bladder, and cerebral were 0.26, 0.238, 0.621, 0.532, 0.443, 0.586 and 0.526 respectively. Intra–class coefficient showed the best correlation in the pyramidal and bowel/bladder systems with scores of 0.78 and 0.75 respectively. Poor correlation was found for brainstem and visual FS (ICC 0.19 and 0.25).

    Conclusion Internet–based FS and EDSS show good agreement with physician–measured scores. Agreement was better in patients with higher scores, indicating that internet–based assessment may be useful for patients with greater disability. Interestingly, >90% patients self–scored higher in the bowel/bladder FS than the physician–rated scores, highlighting that a web–based assessment may be useful for patient who have difficulty describing personal symptoms. 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; not least for those patients who have difficulty travelling to see physicians regularly due to the severity of their disease.

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