Clinical trial NCT02559765: Access, Use and Opinions of Physiotherapy and Rehabilitation Services of People With Progressive MS in the UK.
Official title: 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.
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Progressive Multiple Sclerosis
Keywords: physiotherapy
progressive multiple sclerosis
rehabilitation
rehabilitation services
Lead sponsor: University of Glasgow
Sponsor class: OTHER
Collaborators: name: NHS Ayrshire and Arran
name: AKM
First posted: 2015-09-24
Enrollment: 1298
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: People with progressive multiple sclerosis and registered on the UK MS Register

Brief 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.

Detailed 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.

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

Primary outcomes:
measure: Number of participants with access to physiotherapy for their MS. Questionnaire
timeFrame: three months
measure: Number of participants that use physiotherapy for their MS. Questionnaire
timeFrame: three months
measure: What is the participants' perceived efficacy of physiotherapy for their MS? Questionnaire
timeFrame: three months
Secondary outcomes:
measure: Most common referral process. Questionnaire
timeFrame: three months
measure: Most common provider of physiotherapy to the participant. Questionnaire
timeFrame: three months
measure: Most common physiotherapy intervention received for participant's MS. Questionnaire
timeFrame: three months
measure: Most common pattern of physiotherapy appointments. Questionnaire
timeFrame: three months
measure: Most common expected waiting time from referral to receiving physiotherapy appointment. Questionnaire
timeFrame: three months
measure: Most common frequency of appointments. Questionnaire
timeFrame: three months
measure: Most common length of physiotherapy sessions. Questionnaire
timeFrame: three months
measure: Most common number of people present at physiotherapy sessions. Questionnaire.
timeFrame: three months
measure: Most common setting of receipt of physiotherapy. Questionnaire
timeFrame: three months
measure: Number of participants who think they need more physiotherapy than they currently receive. Questionnaire
timeFrame: three months
measure: Most common desired pattern of delivery of physiotherapy. Questionnaire
timeFrame: three months
measure: Most common desired frequency of appointments. Questionnaire
timeFrame: three months
measure: Most common desired length of physiotherapy appointments. Questionnaire
timeFrame: three months
measure: Most common desired setting for receiving physiotherapy. Questionnaire
timeFrame: three months
measure: Most common desired number of people present at physiotherapy sessions. Questionnaire.
timeFrame: three months
measure: Most common barriers to receiving physiotherapy. Questionnaire.
timeFrame: three months
measure: Number of participants who have access to MS specialist services. Questionnaire
timeFrame: three months
measure: Number of participants who are able to access MS specialist services as their needs change. Questionnaire
timeFrame: three months
measure: Most common health professional available as part of MS specialist services. Questionnaire
timeFrame: three months
measure: Most commonly used health professional available as part of MS specialist services. Questionnaire
timeFrame: three months
measure: Number of participants who are offered a regular review for their MS. Questionnaire
timeFrame: three months
measure: Most common frequency of review. Questionnaire
timeFrame: three months
measure: Most common health professional who carries out review. Questionnaire
timeFrame: three months
measure: Most common setting of review. Questionnaire
timeFrame: three months
measure: Most common disease modifying therapy taken in past. Questionnaire
timeFrame: three months
measure: Most common disease modifying therapy being taken. Questionnaire
timeFrame: three months
measure: Most commonly used complimentary therapy used for MS. Questionnaire
timeFrame: three months
Other outcomes:
Locations:
city: Glasgow
country: United Kingdom
facility: The University of Glasgow
Study officials:
affiliation: The University of Glasgow
name: Evan Campbell, MRes
role: PRINCIPAL_INVESTIGATOR
References: