ObjectiveTo evaluate the exchange of information and communication between MS patients and the clinical team regarding decisions around disease modifying therapy (DMT) and MRI results utilising the UKMSR, an established, validated cohort of people with MS.MethodsAn online questionnaire was designed and then disseminated to patients in February 2020.ResultsFrom 2512 responses, 44% were on DMT (86% had RRMS). Of 1089 responses, 60% indicated that the decision to start DMT was made with the clinical team, whilst 13% responded it was “largely my teams’ decision”. Only 117 (~10%) felt they received “too little information”. Overall, 2459 patients had undergone ≥1 MRI, with 70% seeing the images at least once. Almost 90% of patients would be interested in viewing scans at clinic, appearing independent of DMT exposure, although 2/3 of those who were “not interested” were not on DMT.ConclusionsA majority of study participants reported adequate involvement and sharing of information in the decision-making process when starting DMT although a concerning minority appear disengaged. Patients are very interested in viewing MRI scans with a majority having had this opportunity. Not all expressed such an interest however. Patient preference should therefore be duly considered in clinical management.sramsay03@qub.ac.uk|ABN Bursary
BackgroundWithin our service, all scheduled face-to-face neurology clinics were cancelled from March 2020 due to Covid-19. Telephone reviews were initiated to provide continuity of MS care.ObjectiveTo assess patient satisfaction with MS telephone clinics during the pandemic and opinion regarding potential future use.Design/MethodsAnonymised questionnaires were posted to 635 patients receiving MS specialist medical telephone review, March to July 2020.Results279 (44%) patient questionnaires were returned, mean age 49 years, 72% female, 87% having an EDSS <7.0. On a rating scale, (0–10, 10 = completely satisfied), 95% of patients reported a satisfaction score ≥7. For 99% of patients, clinical interaction was caring/sensitive by telephone. Satisfaction was high with: call duration (96%), opportunity to ask questions (99%) and understanding advice given (98%). During the pandemic, 87% of patients preferred the virtual appointment. Of all patients, 45% expressed preference for telephone review moving forward, rising to 55% among both wheelchair-using patients and those living >50 miles from clinic. Many felt that video call would further improve virtual review (54%).ConclusionsDuring the COVID-19 pandemic, satisfaction is high with MS review by telephone. A signifi- cant body of patient opinion supports telephone clinics beyond Covid-19. This is influenced by EDSS and distance from clinic.sramsay03@qub.ac.uk|ABN Bursary
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