Data on wellbeing, mobility, medication
Indicators for improved quality of life from the 2019 survey results include:
Decreasing loneliness and/or isolation
Taking part in activities which are found enjoyable
Being able to travel outside the home regularly
Getting help/support/counselling for abuse
Getting Treatment, advice and exercise.
Adam Lawrence, HSPer, blogger and Chairman of the UK HSP support group has been surveying the global HSP community for 7 years now. The results of the 2019 multi-language survey from 367 respondents are now in, including a large block of responses from Europe in French, Dutch, Spanish and Italian. 7% of respondents (25 people) were from Australia. There were questions on wellbeing, mobility, medication, spasticity and spasms, life with HSP and more.
The average score on the Warwick-Edinburgh Mental Well-being scale (WEMWBS) for people with HSP is lower than for the general population, however it is still within the “average” range and similar to those who don’t have HSP but who see their health status as “poor”.
Life with HSP
- 67% consider themselves disabled, while 33% do not
- 32% consider themselves lonely, with those whose mobility is more restricted tending to consider themselves lonely more often than those with less restricted mobility
- 30% consider themselves isolated, again more often in those whose mobility is more restricted
- Wellbeing scores for those who consider themselves either or both lonely and isolated are significantly lower than for those who do not
- Around half consider themselves as vulnerable with HSP. Those who do point to the physical changes reducing their ability to defend themselves or resist attack; or they point to balance problems, incontinence and difficulty of movement as the reasons they consider themselves vulnerable
- 14% report having been abused, with a general trend of those with restricted mobility reporting abuse more than those who are more mobile. Three-quarters of those who have been abused indicate that this was as a result of their HSP
- Those who report being abused tend to have lower wellbeing scores.
Positive wellbeing factors (in order of frequency of mention):
- not feeling isolated (255)
- not feeling lonely (245)
- not feeling vulnerable (166)
- travel to town daily (69)
- no medication (46)
- travel further than town daily (35)
- occasional music (34)
- weekly music (28)
- daily use of cardiovascular gym machines (21)
Negative wellbeing factors (in order of frequency of mention):
- feeling lonely (116)
- feeling isolated (107)
- experiencing abuse (52)
- having SPG7 (35)
- taking 4 medicines for HSP (17)
- uncertain diagnosis (7)
- taking 6 medicines for HSP (5)
Use of mobility aids:
- 19% don’t use mobility aids
- 24% use them some of the time
- 28% use sticks most/all the time
- 11% use frames most/all of the time
- 19% used chairs most/all of the time
Types of mobility aids used:
- 51% use sticks, poles, crutches or canes
- 38% use wheelchairs for mobility scooters
- 27% use orthotics, ankle-foot orthotics or insoles
- 21% use a walking frame or Rollator
The survey explores the medication people take for HSP, the reasons that people take medicines for, and how effective they perceive those medicines to be:
- Around 85% of people say they are prescribed at least one form of medication for their HSP, a slightly higher proportion than in the 2014 survey.
- Around 15% say that they did not take any medication at all.
- Almost 60% of the medication being taken is used to treat spasticity and spasms, with the biggest proportion of people taking Baclofen.
- Medications are also taken for pain, nerve pain, bladder control, depression, anxiety, bowel control, sleep problems or fatigue.
- Stretches are the most common form of exercise with over 90% of respondents doing them
- Over 75% do stretches regularly.
- Over 33% regularly do activities including walking/running, physiotherapy, music and cycling/manual wheelchair
- Over 20% regularly do activities including weights, swimming, cardiovascular gym machines and yoga/pilates/tai chi.
Respondents identified stretching, walking and aerobic activities as the ones they felt were most important for exercise, relaxing and flexibility. Music and stretches were identified as most important for relaxing. Stretches and physiotherapy were identified as most important for flexibility.
You can find Adam’s blog with survey results here: http://hspjourney.blogspot.com/2020/02/
For the full analysis, access this PDF: https://drive.google.com/open?id=1Vrh5bd8ss0XDU_DR39kEpneo-3YZuaGm