Multiple sclerosis (MS) is the most common disabling neurological disease of young adults, with symptom onset generally occurring between the ages of 20 to 40 years.1 Treatments today target reducing the number and severity of relapses and thereby delaying long-term disability progression.1 However, patients still face critical challenges, including fatigue serious enough to significantly affect their quality of life, relationships, activities, and employment. Additionally, people living with MS may experience motor dysfunction, and more than half develop problems with cognition that can cause difficulty choosing the right words, poor judgement, struggling to keep up with tasks or following conversations, and social challenges.2
Over the next few years, we expect to see a high volume of research on biological markers and genetic factors, to help predict which individuals are at highest risk of disease progression and to guide optimisation of individual therapy plans.3 The field is already undergoing a paradigm shift: from a singular focus on preventing and reducing MS relapse, to minimising all MS-related disability. However, while clinical trials already try to look at levels of disability and how these change over time, it remains to be seen if future trials will assess how these impairments affect individual activities and interpersonal relationships. Some tools that evaluate the effect of limitations on activities and social participation are available, but do not elucidate if said limitations are caused by MS. Furthermore, most assessments look at clinical signs but do not consider functioning; meanwhile, current global functional tools are prone to variability and may be biased towards diagnoses of depression.
Bearing in mind these shortcomings, as studies are designed and new data emerge, it will be imperative to keep patient communities informed and increase industry efforts to listen to the voices of people living with MS.4
Democratising MS research today
In the short term, given proliferating clinical development programmes and increasingly active MS patient advocacy groups, researchers and sponsors should make plain language summaries mandatory components of their publications. This straightforward change, ensuring that there are article summaries in non-technical, jargon-free language, follows the latest Good Publication Practice guidelines and should facilitate the deeper engagement of non-specialised stakeholders such as MS patients (“true experts by experience”) and care partners and families (“true experts at managing loved ones”).
There is an opportunity here for an R&D organisation to show leadership by adopting this principle: making plain language summaries part of a “new ethical normal” in MS research, with a view to helping patient communities contribute meaningfully to new tools and approaches.
How can TVF Communications help?
We are strong proponents of using plain language summary publications to help new scientific information reach diverse audiences: individual patients, patient organisations, the general public, non-specialist clinicians, research scientists, health system decision-makers and wider healthcare communities. Our team of medical writers specialises in breaking down complex data and concepts into clear digests, using additional visual, audio and digital enhancements where possible to maximise access. And we thrive on partnering with patient advocacy groups to better understand lived experiences, and to help companies transform these insights into practical, patient-focused solutions. Contact us to hear more about our work in this space, within MS and beyond.
By Dr Azhaar Ashraf
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