ABSTRACT
Introduction: Online registries enable home-based, cost-effective and long-term follow up. The benefits were highlighted during the pandemic where lockdowns limited engagement with health professionals. The UK MS Register has been collecting patient reported outcomes (PROs) over 11 years. PROs consist of a number of questions summed to form a total, however, each question has a scale and addresses a particular problem. Objectives/Aims: We investigated the responses to individual questions of the Multiple Sclerosis Impact Scale (MSIS-29) and the Hospital Anxiety and Depression Scale (HADS) through a series of lockdowns throughout the evolving crisis. Method(s): We studied 5 timepoints (March 2019, September 2019, March 2020, September 2020, March 2021) spanning the pandemic. ~1000 patients completed all timepoints. We studied how the responses to each questionnaire item changed, evaluating the %patients who reported an increased, decreased or stable rating of each item over each 6-months window (e.g. March-September 2019). We then quantified the change in %patients across windows. Significance was evaluated using permutation testing. Result(s): >50% patients stayed stable across all questionnaire items over a period of 6 months and the remaining patients either got better or worse. This fluctuating behaviour is not unexpected in MS. The change in %patients reporting an increased, decreased and stable item rating over 6-months periods did not change significantly for most items. Notably, the items where a significant change was observed, could be directly related to Covid-19 given the nature of the question. These included "feeling stuck at home", "having to cut down time spent on work" and "feeling limited in your social and leisure activities" for MSIS-29 and "feeling frightened something awful is about to happen", "being able to see the funny side of things" and "losing interest in your personal appearance" for HADS. Conclusion(s): PROs capture disease specific elements, including MS patients variability and fluctuating symptoms, but are also sensitive to external factors such as the social context. When considering the questionnaires' total scores this information can be lost. Detailed item-level analyses can help disentangle the causes behind observed trends and the relations between disease-related and external factors (e.g. covid in this specific case) adding to the relevance of PROs in monitoring disease long-term.