Under & Over: A Controlled Study to Develop an Upper Limb Rehabilitation Tool for People With Multiple Sclerosis.

MS is a chronic progressive disease of the central nervous system and is the leading cause of non-traumatic disability in young and middle aged adults. It commonly leads to cumulative, mixed disabilities over time, ranging from motor and sensory impairments to fatigue, impaired vision, cognitive deficits, speech and swallowing problems, bladder, bowel and sexual dysfunction. The combination of different symptoms and disabilities often limits a person's ability to perform activities of daily living and to actively participate in social and occupational activities which then impacts on their quality of life.

Historically, MS treatments have predominantly focused on preserving lower limb function - the ability to walk - and this is reflected in the main areas of clinical practice and research.

Firstly, within the current treatment options, none are licensed for people with advanced forms of MS. Secondly, wheelchair users are excluded from the majority of clinical trials as it is thought to be difficult to measure clinical change in people whose motor functions are already severely affected. Finally, and related to the second point, the gold standard of disease measurement, the expanded disability status scale (EDSS) is weighted towards mobility i.e. a person's ability to walk. Results of a recent study (ASCEND, NCT01416181) highlighted these problems as the primary outcome of the trial was negative; the EDSS and 25-foot timed foot walk, measures of lower limb function dominated the composite measure. However, the nine hole peg test (9HPT), a measure of upper limb function, was positive; trial participants who received natalizumab showed no loss of upper limb function, confirmed at 12 weeks, compared to participants with secondary progressive MS who received placebo.

The Barts MS Research team based at QMUL feel that there now needs to be a shift in focus to reposition the importance of upper limb functions for people with MS.

In August 2016 the investigators launched the #ThinkHand campaign to raise awareness and also initiate discussions amongst patients, clinicians, charities, pharmaceutical companies, regulators and the general public to realise the importance and work towards generating evidence to develop treatments for advanced MS. As part of this campaign, our team has conducted a number of PPI activities at academic conferences, online and at patient events around this topic. Part of this included an online survey where 88% of people with MS (314 of 360 respondents) described their upper limb function to be more important to them than their lower limb function (Dubuisson, Baker, et al., 2017).