Access, Use and Opinions of Physiotherapy and Rehabilitation Services of People With Progressive MS in the UK.

Study Overview
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Brief Summary
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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
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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.

Official Title
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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.

Conditions
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Progressive Multiple Sclerosis

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Number of participants with access to physiotherapy for their MS. Questionnaire | Questionnaire has the following options: yes, no. Participant may choose one. | three months | 
| Number of participants that use physiotherapy for their MS. Questionnaire | Questionnaire has the following options: yes, no. Participant may choose one. | three months | 
| What is the participants' perceived efficacy of physiotherapy for their MS? Questionnaire | Nominal scale of: very harmful, harmful, neither harmful nor beneficial, beneficial, very beneficial Participant may choose one. | three months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Most common referral process. Questionnaire | Participant may choose from the following options and choose more than one: Neurologist; GP; self-referral; MS nurse; other (please state); don't know | three months | 
| Most common provider of physiotherapy to the participant. Questionnaire | Participant may choose from the following options and choose more than one: NHS; private (self funded); private (insurance); charity; other (please state) | three months | 
| Most common physiotherapy intervention received for participant's MS. Questionnaire | Participant may choose form the following options and choose more than one: exercises to do at home prescribed by a physiotherapist; exercises with a physiotherapist; functional electrical stimulation, transcutaneous electrical stimulation; tilt table; acupuncture; advice or education from a physiotherapist; other (please state) | three months | 
| Most common pattern of physiotherapy appointments. Questionnaire | Participant may choose from the following options and choose only one: receiving physiotherapy sessions regularly; pattern varies depending on symptoms. | three months | 
| Most common expected waiting time from referral to receiving physiotherapy appointment. Questionnaire | Participant may choose form the following options and choose only one: less than a week; 1 to 2 weeks; 2 or more weeks but less than 4 weeks; 4 or more weeks but less than 6 weeks; 6 or more weeks but less than 12 weeks; 12 or more weeks. | three months | 
| Most common frequency of appointments. Questionnaire | Participant may choose form the following options and choose only one: once or more a week; once a fortnight; once every 1 to 3 months; twice a year; once a year or less | three months | 
| Most common length of physiotherapy sessions. Questionnaire | Participant may choose form the following options and choose only one: up to half an hour; between half an hour and an hour; more than an hour. | three months | 
| Most common number of people present at physiotherapy sessions. Questionnaire. | Participant may choose form the following options and choose more than one: one to one; 2- 4 people, 5 or more people; over the phone or internet. | three months | 
| Most common setting of receipt of physiotherapy. Questionnaire | Participant may choose form the following options and choose more than one: at home; in a hospital or clinic; in a community centre; in a charity centre; other (please state) | three months | 
| Number of participants who think they need more physiotherapy than they currently receive. Questionnaire | Participant may choose form the following options and choose only one: yes; no; don't know | three months | 
| Most common desired pattern of delivery of physiotherapy. Questionnaire | Participant may choose form the following options and choose only one: regularly; to vary depending on symptoms. | three months | 
| Most common desired frequency of appointments. Questionnaire | Participant may choose form the following options and choose only one: once or more a week; once a fortnight; once every 1 to 3 months; twice a year; once a year or less | three months | 
| Most common desired length of physiotherapy appointments. Questionnaire | Participant may choose form the following options and choose one: up to half an hour; between half an hour and an hour; more than an hour. | three months | 
| Most common desired setting for receiving physiotherapy. Questionnaire | Participant may choose form the following options and choose one: at home; in a hospital or clinic; in a community centre; in a charity centre; other (please state) | three months | 
| Most common desired number of people present at physiotherapy sessions. Questionnaire. | Participant may choose form the following options and choose one: one to one; 2- 4 people, 5 or more people; over the phone or internet. | three months | 
| Most common barriers to receiving physiotherapy. Questionnaire. | Participant may choose form the following options and choose more than one then rate their most severe from 1-3: Pain; fear of falling; bladder or bowels problems; fatigue; depression; anxiety/panic attacks; difficulty with walking; difficulty with wheelchair transfers; transport problems; distance to travel; lack of suitable parking; lack of time; family commitments; work commitments; cost; need someone to come with me; personal issues with physiotherapist; problems being referred to physiotherapy; physiotherapy is not available; physiotherapy will not be beneficial for me; there is nothing that makes it difficult for me to receive physiotherapy; other (please state) | three months | 
| Number of participants who have access to MS specialist services. Questionnaire | Participant may choose from the following options and choose one: yes; no. | three months | 
| Number of participants who are able to access MS specialist services as their needs change. Questionnaire | Participant may choose from the following options and choose one: yes; no. | three months | 
| Most common health professional available as part of MS specialist services. Questionnaire | Participant may choose from the following options and choose more than one: Occupational therapist; Social worker; MS specialist nurse; Continence nurse; Nurse: other (please state); Psychologist; GP; MS specialist Doctor/Neurologist; Doctor: other (please state); Speech and language therapist; Dietician; Orthotist; Other (please state) | three months | 
| Most commonly used health professional available as part of MS specialist services. Questionnaire | Participant may choose from the following options and choose more than one: Occupational therapist; Social worker; MS specialist nurse; Continence nurse; Nurse: other (please state); Psychologist; GP; MS specialist Doctor/Neurologist; Doctor: other (please state); Speech and language therapist; Dietician; Orthotist; Other (please state) | three months | 
| Number of participants who are offered a regular review for their MS. Questionnaire | Participant may choose from the following options and choose one: yes; no; don't know | three months | 
| Most common frequency of review. Questionnaire | Participant may choose from the following options and choose one: twice a year; once a year; less than once a year; don't know. | three months | 
| Most common health professional who carries out review. Questionnaire | Participant may choose from the following options and choose one: MS specialist Doctor/Neurologist; GP; Nurse; Physiotherapist; Occupational therapist; The person who does my review can vary; Other (please state) | three months | 
| Most common setting of review. Questionnaire | Participant may choose from the following options and choose one: at home; in a hospital or clinic; in a community centre; GP surgery; other (please state) | three months | 
| Most common disease modifying therapy taken in past. Questionnaire | Participant may choose from the following options and choose one: Beta-interferon (Rebif, Avonex, Betaferon); Glatiramer acetate (Copaxone); Dimethyl fumarate (Tecfidera); Teriflunomide (Aubagio); Natalizumab (Tysabri, Antigren); Fingolimod (Gilenya, Novartis); Mitoxantrone (novantrone); Alemtuzumab (Lemtrada); I have never taken any of these medications | three months | 
| Most common disease modifying therapy being taken. Questionnaire | Participant may choose from the following options and choose one: Beta-interferon (Rebif, Avonex, Betaferon); Glatiramer acetate (Copaxone); Dimethyl fumarate (Tecfidera); Teriflunomide (Aubagio); Natalizumab (Tysabri, Antigren); Fingolimod (Gilenya, Novartis); Mitoxantrone (novantrone); Alemtuzumab (Lemtrada); • I do not currently take any of these medications | three months | 
| Most commonly used complimentary therapy used for MS. Questionnaire | Participant may choose from the following options and choose more than one: Massage; Reflexology; Osteopathy or chiropractic; Magnet field therapy; The Alexander technique; Acupuncture or acupressure; Hyperbaric oxygen therapy; Reiki; Aromatherapy Relaxation or meditation; Homeopathy or herbal medicine; Other (please state) | three months | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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physiotherapy, progressive multiple sclerosis, rehabilitation, rehabilitation services