Current Access to, Use and Perceived Efficacy of Physiotherapy and Rehabilitation Services by People With Progressive Multiple Sclerosis: a Survey of People With Progressive Multiple Sclerosis Via the UK MS Register.
Description:
Multiple Sclerosis has three main forms: Relapsing Remitting MS (RRMS), Primary Progressive
MS (PPMS) and Secondary Progressive MS (SPMS) as well as a rarer form called Progressive
Relapsing MS (PRMS).
In cases of RRMS an individual will have periods of worsened symptoms followed by periods of
remission. During remission the individual may make a full recovery or be left with some
residual impairment. In both PPMS and SPMS an individual will have continuous worsening
symptoms with a gradual increase in disability with little or no transient recovery. An
individual with PRMS will have the continuous worsening of disability seen in both PPMS and
SPMS coupled with occasional relapses as seen in RRMS.
Currently 15% of those with MS are diagnosed as PPMS, 5% are diagnosed with the rarer form of
PRMS and approximately 80% are diagnosed with RRMS. However, approximately 65% of those with
RRMS will go on to develop SPMS. This means that approximately 72% of all individuals with MS
will be in a progressive phase of the disease at some point in their life.
Whilst there are disease modifying drugs available for those with RRMS there are currently
limited pharmacological treatments available for those with the progressive forms of the
disease. Physiotherapy and rehabilitation services are often used by people with progressive
MS and access to these are part of the current NICE guidelines for the management of MS.
Whilst physiotherapy and rehabilitation services are used by people with progressive MS there
is currently no research investigating how many people with progressive MS use these
services, who provides them, how they are delivered, how effective the recipient feels the
treatment is and how they would like their service to be delivered. In addition the
Progressive MS Alliance has highlighted progressive MS and symptom management and
rehabilitation as an under-researched area.
The UK MS Register is funded by the MS Society and operated by the health informatics
department within the College of Medicine at Swansea University. People with MS can sign up
to the register and answer pre-set questionnaires online. The purpose of the Register is to
be a longitudinal research database collecting routine data every three months as well as
conducting individually commissioned cross sectional studies. It currently has over 11,000
members and over 2,200 of those registrants have a progressive form of MS. Not only is this
is the first study with the UK MS register to focus on people with progressive forms of MS
but also the first to focus on physiotherapy services.
This is a unique opportunity to access this patient group across a large geographical region
and gain an insight into how physiotherapy and rehabilitation services are used, delivered
and perceived. The outcome of this research has the potential to inform future physiotherapy
interventions and rehabilitation guidelines.
Condition:
Progressive Multiple Sclerosis
Treatment:
Start Date:
August 2015
Sponsor:
University of Glasgow
For More Information:
https://clinicaltrials.gov/show/NCT02559765