Results of worldwide survey of HSPers

Well-being, mobility, diagnosis and treatments covered

Chair of the HSP Support Group in the UK, Adam Lawrence, shares the results of the 8th annual survey.

The survey attracted over 300 responses with 16 (5%) from Australia. The main findings include:

Adam Lawrence
  • Scores on a recognised scale of mental well-being are significantly lower than in previous years, possibly due to the effects of the global pandemic
  • Unsurprisingly therefore, “information on improving mental health/well-being” is the number one ranking Well-being topic by a huge margin
  • Mobility analysis shows much the same pattern as previous years and notably that scores on well-being are not related to severity of mobility impairment/type of mobility aids required
  • By far and away the number one need identified in the Living with HSP category is “stretches and exercises that help”
  • Getting an explanation of HSP on diagnosis ranks number one amongst topics on Diagnosis and Inheritance
  • “Treatment options for spasticity” is also a clear first in the Treatments category
  • Information about HSP topics show fairly equal interest in three areas – disease progression, burden of symptoms and understanding what affected genes do
  • Of the 5 categories of survey questions – Living with HSP, Treatments, Well-being, Diagnosis & Inheritance and Information about HSP – Living with HSP ranks a clear first in importance with survey respondents, with Treatments ranking a solid second
  • 74% of survey respondents consider that they understand HSP at least well
  • 40% feel that their medical professionals understand their HSP at least well, with 32% saying that medical professionals somewhat understand and 28% saying they don’t understand at all
  • When asked what a cure for HSP would look like:
    • For 29% it is stopping symptom progression
    • 45% say it is reversing symptoms, and
    • 23% say it is preventing the next generation getting HSP.

Read the full report


Adam Lawrence, 28 February 2021

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