Thursday, 3 July 2014

AGM2014: Does physical activity improve quality of life in HSP? - Kate Winstone

Kate Winstone gave an overview of work that is currently being undertaken at Plymouth University. A number of people at the AGM took part in research on the day, and Kate was explaining.

Kate is examining the benefits of physical activity. It is known that there is a lower level of activity in people with neurological conditions, compared with the normal population. It is also known that physical activity can bring an improvement to quality of life.

The general question is would physical activity improve the quality of life? A study has shown that for people with cerebral palsy an increase in physical activity does not lead to an increase in quality of life. Kate is researching what the outcome is for people with HSP.

If her research confirms that increased physical activity does increase quality of life, then follow on work can be undertaken to establish:

  • What types of physical activity? - strength or flexibility exercises, for example
  • When, over the progression of HSP would this be best? - at the beginning, later on, etc.
  • Which types of HSP would gain the most benefit?
Effectively, Kates research seeks to identify if there is a correlation between physical activity and quality of life for people with HSP.

This work should have the following benefits:
  • An increased understanding of the importance of physical activity
  • Could lead to further research being undertaken
  • An increased awareness of HSP
  • Provide support for finding.
Kate observed that there was limited evidence for the general benefits of physio on people, which means that it is more difficult to obtain funding for research.

Kate then went on to describe the study being undertaken. She had been contacted by 35 members of the HSP group who wanted to take part, and 22 were being investigated on the day. (I did apply, but the spaces were all full by that time).

The aim of the day was to assess participants using the Spastic Paraplegia Rating Scale (SPRS). Each person went to four different "stations" set up on the day testing:
  • Speed of walking/stair climbing
  • Muscle power and reflexes
  • Memory
  • Senses and sensations
After the assessment participants would have to complete an on-line survey, and after that the data needs to be analysed.

Kate will share the results of her research with the HSP group, with those involved with physiotherapy, and she hopes to produce abstracts and get a published paper from this work.

Post AGM Investigations: 

1) Here's one of many possible links showing the relationship between physical activity and quality of life.

2) The SPRS can be seen here: , which concludes: "Application of SPRS requires less than 15 minutes and does not require any special equipment, so it is suitable for an outpatient setting. Interrater agreement of SPRS was high (intraclass correlation coefficient = 0.99). Reliability was further supported by high internal consistency (Cronbach α = 0.91). SPRS values were almost normally distributed without apparent floor or ceiling effect......The Spastic Paraplegia Rating Scale is a reliable and valid measure of disease severity.

Whilst the article requires a log-in to see the full text, the SPRS scale itself can be downloaded as an attachment from here:

There are 14 steps. the first 13 are ranked on 5 point scale:
1) Walking distance without pause
2) Gait quality
3) Maximum gait speed
4) Climbing stairs 
5) Speed of stair climbing
6) Arising from chair
7) Spasticity in hip adductor muscles (those which bring your legs back in line with your body)
8) Spasticity in knee flexion muscles (those which cause your knee to bend)
9) Weakness in hip abduction muscles (those which move your leg out of line with your body)
10) Weakness in foot dorsiflexion muscles (those which raise your toes or foot up)
11) Contractures of lower limbs (measure of permanent shortening of hip, knee and ankle muscles)
12) Pain due to HSP symptoms
13) Bladder and bowel function

The 14th step is identifying if any of a list of complicating signs are present.

You can also see the SPRS as a part of this fuller form on the SPATAX network website.

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