access, use and opinions of physiotherapy and rehabilitation services of people with progressive ms in the uk.

Conditions: Progressive Multiple Sclerosis

Summary: 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.

Eligibility criteria:
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

Keywords: physiotherapy progressive multiple sclerosis rehabilitation rehabilitation services