title: Are Established Methods of Physiotherapeutic Management for Long-term Neurological Conditions Applicable to 'Orphan' Conditions such as Syringomyelia?
abstract: OBJECTIVE
  Syringomyelia is a rare or 'orphan' condition with the potential to cause significant disability and detrimental effects to quality of life. Syringomyelia shares similar symptoms to those common in other long-term neurological conditions, including spinal cord injury and multiple sclerosis. In these more prevalent conditions, physiotherapy is utilized widely and is effective in optimizing physical, psychological and social parameters. Therefore, we theorized that physiotherapy might be transferable to, and beneficial to syringomyelia patients. As a paucity of literature exists in this area, we aimed to evaluate the existing uptake and perceived efficacy of physiotherapy.
  
  
  METHODS
  An exploratory, mixed methodology was selected to derive sufficient qualitative data for analysis. Specifically designed questionnaires and semi-structured interviews yielded data on uptake and perceived physiotherapy efficacy. One hundred patients from a National Health Service tertiary syringomyelia service were invited to participate.
  
  
  RESULTS
  The questionnaire and interviews were completed by 49 and 20 patients, respectively. Of the small number of patients receiving physiotherapy, the majority reported beneficial effects on pain modulation and quality of life. Stretching and hydrotherapy were deemed effective for relief of pain and stiffness. Additionally, physiotherapy was reported to provide similar benefits to surgical intervention.
  
  
  CONCLUSIONS
  Syringomyelia patients report physiotherapy to provide benefits for symptom management and quality of life. Such findings suggest that established rehabilitation techniques in more common conditions may be transferable to those less prevalent. Uptake of physiotherapy was limited, seemingly because of inadequate information, knowledge and resources. To address these deficiencies, further studies should be planned investigating the effectiveness of physiotherapy modalities, such as hydrotherapy, in parallel or in conjunction with surgery and/or pharmacology. Additionally, syringomyelia could be represented alongside similar pathologies in research trials to initiate further research questions and drivers for funding.
authors.affiliation: Physiotherapy Department, Guys and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Rebecca
authors.identifier: http://orcid.org/0000-0003-2628-9861
authors.initials: R
authors.lastname: Smith
authors.affiliation: Physiotherapy Department, Guys and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Gareth
authors.initials: G
authors.lastname: Jones
authors.affiliation: Physiotherapy Department, Guys and St Thomas' NHS Foundation Trust, London, UK.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Curtis
authors.affiliation: Queen Elizabeth Hospital, Birmingham, UK.
authors.forename: Hollie
authors.initials: H
authors.lastname: Murphy
authors.affiliation: Queen Elizabeth Hospital, Birmingham, UK.
authors.forename: Graham
authors.initials: G
authors.lastname: Flint
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D026741:Physical Therapy Modalities / Q000458:organization & administration*; D036301:Qualitative Research; D011788:Quality of Life; D057566:Self Report; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013595:Syringomyelia / Q000175:diagnosis / Q000534:rehabilitation*; D016896:Treatment Outcome; D055815:Young Adult
keywords: long-term neurological conditions; orphan conditions; physiotherapy; quality of life; syringomyelia