Digital patient experience tools in multiple sclerosis: a landscape analysis of the global Patient-Reported Outcomes in Multiple Sclerosis (PROMS) initiative.

Abstract

Electronic health (eHealth) applications can increase the uptake of patient-reported outcomes (PROs) in people with multiple sclerosis. We aim to present the findings of the eHealth tools landscaping exercise conducted by the global Patient-Reported Outcomes for Multiple Sclerosis (PROMS) initiative. A structured survey was disseminated among identified eHealth tool developers. Metadata (up to 10 October 2024) were hosted on the Multiple Sclerosis Data Alliance catalogue, an open-access platform focussing on digital health tools in multiple sclerosis. eHealth tools' clinical domains were compared using a Kruskal-Wallis non-parametric one-way analysis of variance, based on domain-specific scores (each domain received one point for every test in which it was evaluated), followed by Dunn's post-hoc tests with Holm adjustment for multiplicity. 16 eHealth tools launched between 2014 and 2022 in Europe and North America were included, targeting people with multiple sclerosis, caregivers, and healthcare professionals, and collecting data remotely and in clinic through smartphones (n = 12), smartwatches (n = 1), and tablets or computers (n = 11). Data are used for clinical research, self-management, and real-time or visit-based clinical monitoring. Scoring showed that movement and cognition/behaviour/mood were the most represented domains. The Kruskal-Wallis test indicated significant differences across domains (p = 0.0016), with cognition/behaviour/mood evaluated more frequently than brainstem, sensory, and sleep functions. Twelve tools are implemented in 108 hospitals across Europe and North America, with approximately 33,373 downloads, 7413 people with multiple sclerosis involved in 44 research studies, and 12,503 people with multiple sclerosis using them in real life. We provide the first dynamic and strategic overview of available eHealth tools evaluating PROs in multiple sclerosis. Although movement and cognitive domains dominate current assessments, several clinically important domains remain underrepresented. The global PROMS initiative is committed to ongoing updates and stakeholder engagement for identifying gaps and needed action plans. None.