2016 survey of HSPers

Posted - June 2016 in Living with HSP - Management & Treatment News

 Home modifications, quality-of-life

 

Adam Lawrence

Adam Lawrence

Adam Lawrence, an HSPer from the UK, reports on the latest annual survey of HSPers in different countries. The main focus of this survey is understanding the modifications people make around their homes to live with HSP. He also touches on depression and quality of life.

 

Adam writes: “Just to let you know that I have now published the results of the survey here: http://hspjourney.blogspot.co.uk/2016/02/2015-survey-results.html

Given the wide range of modifications suggested, I’m hoping that readers can get some useful ideas from here or at least think about how and when they may have to make changes.”

 

Here are the findings of the on-line survey undertaken between September 2015 and January 2016. 109 respondents with Hereditary Spastic Paraplegia (HSP) completed the survey, predominantly from the USA and the UK. The survey covered modifications at home, depression and quality of life. Respondents also answered questions about their mobility allowing trends to be spotted with level of mobility.

 

Home modifications

There is a wide range of modifications that people have made around their properties. Modifications tend to be made after an accident or after noticing a change in mobility/symptoms, although some people are making modifications early and are planning for future changes.

Some of the modifications are large-scale, including the installation of stair lifts or the conversion of bathrooms to wetrooms, while other modifications are small. This paper repeats some advice given by respondents to others thinking of making those modifications.

As HSP progresses modifications will need to be made to individual’s properties. Many respondents indicate that living in a single storey dwelling makes life much easier. The requirement to move to a single storey dwelling will depend ultimately on personal preferences and the progression of HSP, and there will be plenty of other factors in any decision to stay or to move house.

Frequently, the first modifications made are the installation of grab rails within the property, and these are often fitted in the bathroom first. Subsequent modifications are made depending on the rate of progression of HSP. The parts of properties which are modified the most after the inclusion of grab rails are the bathroom/toilet with a range of different modifications made. Adjustments to beds are relatively common. Modifications in other parts of properties are made less frequently. Some people prefer to make modifications within their existing property whilst others prefer or have to move into accommodation which has been or can be set up to meet their needs.

 

HSP and depression

People with HSP appear to suffer from depression more than the general population. Respondents completed the PHQ-2 questionnaire, which showed that around a quarter should seek further assessment. Results have been compared with the 2009 Estonian study into depression with HSP, and a similar proportion of people with scores of zero, indicating no depression, is shown.

 

 HSP and quality of life

Respondents also completed a sample of questions from the Patients Like Me Quality of Life survey and it is concluded that HSP appears to affect quality of life and from this data there appears to be two step changes. The first step change is in social functioning at the point when mobility aids are needed and the second step change is in physical functioning when mobility aids need to be relied on most or all of the time.

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