Access, Use and Opinions of Physiotherapy and Rehabilitation Services of People With Progressive MS in the UK.
Access, Use and Opinions of Physiotherapy and Rehabilitation Services of People With Progressive MS in the UK.
This survey will investigate the views of people with progressive MS in terms of
 physiotherapy services. In particular the study will examine the proportion of people with
 progressive MS on the MS register who use physiotherapy services, how worthwhile they think
 it is for them and how they would like their physiotherapy to be delivered. This survey will
 also explore how physiotherapy services for people with progressive MS varies across the UK
 and what other types of rehabilitation services are currently used by people with progressive
 MS.
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.
Inclusion Criteria:

 -  Have a form of progressive MS

 -  Be registered on the UK MS Register

 Exclusion Criteria:

 -  Have relapsing remitting MS

 -  Be under 18 years of age