Lifestyle, Exercise and Activity Package for People living with Progressive Multiple Sclerosis (LEAP-MS): adaptions during the COVID-19 pandemic and remote delivery for improved efficiency.
The LEAP-MS (Lifestyle, Exercise and Activity Package for People living with Progressive Multiple Sclerosis) study has developed an individualised supported self-management approach for physical activity for people with progressive multiple sclerosis (MS) and severe disability. The intervention has been evaluated in a single-arm feasibility study with embedded process evaluation. The feasibility study was due to open to recruitment during the COVID-19 2020-2021 pandemic, 1 month into the first UK-wide lockdown. We worked rapidly to implement adaptions to the trial procedures and intervention delivery that we believe are applicable to randomised controlled trials. Recruitment became predominantly via self-referral. Electronic consent was employed, with consent discussions occurring over the telephone. Registration, consent, eligibility assessment and data collection as well as the intervention (online physical activity tool) were via a secure, encrypted multi-user web-based platform for participants, physiotherapists and researchers accessible via various hardware. Physiotherapy consultations, as well as the process evaluation, were conducted remotely using video conferencing software or the telephone. A remote training package for physiotherapists and site initiations was also developed and electronic site files employed. Our adaptions are extremely topical given the COVID-19 situation, and whilst not what we had originally planned, have enabled successful delivery of the feasibility study and are relevant to conducting randomised controlled trials and meeting the needs of people with MS who are far more isolated than ever before. TRIAL REGISTRATION ClinicalTrials.gov NCT03951181 . Registered on 15 May 2019.
[Evaluation of the impact of lockdown on the health and lifestyle of users of the Fundacio Esclerosi Multiple's neurorehabilitation centres in Lleida and Reus].
Revista de neurologia. 2021;(7):249-257
INTRODUCTION On 13 March 2020, a state of alarm was declared due to the COVID-19 pandemic, resulting in total lockdown in Spain. The neurorehabilitation centres of the Fundacio Esclerosi Multiple (FEM) provide care for people diagnosed with neuroprogressive diseases with significant health deficits. We look at how lockdown can affect their way of life. AIMS To assess and manage the impact of lockdown on persons with multiple sclerosis (MS) and other neurodegenerative diseases. PATIENTS AND METHODS Analytical observational study. An anonymous questionnaire was administered to all the patients undergoing comprehensive rehabilitation treatment at two of the FEM centres; the survey included questions on the demographic and clinical characteristics of the subjects, and an assessment of the impact of the pandemic on the physical, social and psychological spheres. RESULTS A total of 202 surveys were analysed. The average age of the participants was 49.09 years and 77.8% had MS, while 22.2% had other conditions. The most frequently reported physical symptoms were muscle weakness, loss of balance and fatigue. The study population remained active during lockdown. More than half of them did not report any increase in cognitive symptoms, but they did mention an increased sense of worry on an emotional level. CONCLUSIONS We can state that the actions deployed by the FEM to reduce the consequences of lockdown have been effective and have minimised the occurrence of maladaptive behaviours. The study has also opened the door for us to add new lines of intervention.