Neurology


Summary Measure of engagement of epilepsy patients in messaging groups.pdf

Measure of engagement of epilepsy patients in messaging groups

600,000 people in the UK are estimated to suffer from Epilepsy but many feel isolated and do not know others with epilepsy. This study was a feasibility evaluation of mobile messaging applications for social support and involved completion of 2 questionnaires and observation of conversations between participants using a mobile phone application. The study found that people with epilepsy who enrolled in a mobile phone based chat messaging platform had just over one daily usage of the platform and statistically significant improvements in their quality of life and medication adherence. Participants with low engagement in their health showed the greatest improvement across all measures including self-management.

A summary of the study findings can be viewed on the left.

SUMS Booklet Lay summary V1.0.pdf

Standing Up in Multiple Sclerosis (SUMS)

People with severe, progressive Multiple Sclerosis (MS) spend much of their day sitting. In response, secondary physical and psychosocial complications can occur. Effective self-management strategies, feasible to implement within people’s homes, are needed.This pragmatic, multi-centre, definitive, randomised controlled trial (RCT) with blinded outcome assessments at baseline, 20 and 36 weeks post-baseline and full economic evaluation aimed to assess the clinical and cost-effectiveness of a home-based, self-managed, standing frame programme. The intervention group was asked to stand for a minimum of 30 minutes, three times weekly, over 20 weeks.

The study results can be viewed on the ECTRIMS online library and a short video of participants' experiences of the standing frame can be viewed on the study website. The SUMS Booklet Lay summary, which has been shared at participant feedback days can be viewed on the left.