Results of survey of HSPers

Posted - June 2019 in Living with HSP - Management & Treatment News

Misdiagnosis, other health conditions, well-being and mobility

 

  • About 1/3 of respondents had been misdiagnosed with another condition.

  • About 1/3 of respondents report multiple long-term health conditions.

  • The average well-being score of respondents who completed an accepted measure of well-being was below the average for the UK population.

  • Mobility aids were used by the vast majority of respondents.

 

Adam Lawrence, Chairman of the UK HSP support group and an HSPer himself, has now published the results of the 2018 survey.

 

Adam Lawrence

Adam writes:

Rare disease day is here again, and I’m very pleased to be able to publish the results of my sixth survey.

This survey was launched in the autumn of 2018, and once again I have had a fantastic response from people around the world completing the questions and contributing to my analysis of HSP.

This survey repeats some of the questions asked in my original 2013 survey, and offers the opportunity to look at some results longitudinally. This survey also marks another new variation. I used Google Translate to translate the questions into other languages to allow people who do not speak English to complete the survey. I also used Google to translate their answers into English for this analysis.

There were 304 respondents who completed the survey, predominantly from the USA, UK and Brazil.

A brief analysis shows that 97 people who completed this survey had also completed at least one of my previous surveys, representing about a third of respondents. A small number of people, five, have completed all six surveys. There are 14 respondents who completed both the 2013 survey and this 2018 survey.

Survey categories include misdiagnosis, multiple long-term health conditions, wellbeing, mobility analysis, change in mobility, symptoms, sleep, activities of daily living, support group membership, symptom tracking and well being conclusions.

 

You can find Adam’s blog with Survey results here: http://hspjourney.blogspot.com/2019/02/

And even more Survey information here: https://drive.google.com/file/d/1YaQsuXV7yhz1b5gVsUYLJT_rcAed-g0q

 

Comments on this story

  1. Grant posted at 1:53 pm on 8 August 2019Reply

    There were some interisting graphs showing the way it effects us ,I know I was keen to see how I was going with my SPG 4.

Add your comment on this story