2020 Survey Open

Hello - it is that time of year again!

I am pleased to announce that my 2020 survey is now open. This year questions are available in English, Italian, Dutch, French, Spanish and Portuguese. Click on the relevant link in the table to below to access the questions in that language.

The focus for this years survey is: 

• Participation and Activities
• Needs for those with HSP
• Access to healthcare

Similar to recent years the analysis of answers will take into account both mobility and wellbeing. I will collect answers until approximately the end of 2020, with results published on Rare Disease Day 2021 - Sunday 28th February.

As with previous surveys only "name" and "country" are required questions. Answer all others that you want. The survey is a similar length to those in previous years, so hopefully would take a similar time.

For the "needs for those with HSP" questions, I am seeking your opinions on what types of information are most important, which makes a change from the usual factual style of questions. I hope that these questions work well!

Language	Link	Responses 3 Jan
English	https://forms.gle/GdYMemqa6qwrmEEz5	176
Portuguese	https://forms.gle/rACyCU77c9xvjWa87	66
French	https://forms.gle/wS2ao4quXwU1r9ax7	47
Dutch	https://forms.gle/UtYyGDG4GPBj8hh79	28
Italian	https://forms.gle/yttKzSpfVzfrgpZN9	11
Spanish	https://forms.gle/LBWPcMEz6PA5trnD6	6

3rd January

Just starting to look at analysis now. Compared with last year I have:

More responses from: Netherlands

Similar number of responses from: Belgium/Italy/France/Canada

Fewer responses from: UK/USA/Australia/Spain/Brasil

I am happy to have more results in the next few days - especially from those areas with fewer responses!

23rd December - Brief Analysis of ~200 answers.

Here are some results from ~200 answers in English and Portuguese. I would love more answers, a few more will take me over 300 in total. People in UK, USA and Brasil form the bulk of people in this analysis.

About 80% of people consider themselves to be disabled, with similar proportions in all areas of the world.

Some 15-20% of people consider they know HSP very well, with another 40% knowing it well. Most of the remaining 40-45% know HSP somewhat rather than not at all. People feel that healthcare professionals do not understand what it is to live with HSP very well, with 10-15% understanding very well, 15% understanding well, and almost 75% somewhat (<50%) or not at all (~25%). Understanding of HSP seems lower in Brasil than in UK/USA. Nearly 40% were not given a description of HSP when diagnosed, with fewer in UK getting description than in USA/Brasil.

Some 15% of people have had surgery for their HSP, with the two most common types being tendon release surgery and placement of a baclofen pump. Surgery seems most prevalent in USA and Australia.

Some 60% of people have had fewer appointment as a result of Covid-19, and only 5% having more appointments. The availability of digital appointments has increased as a result of Covid-19. Almost two thirds say they were not available before, reducing to around one third after. Before Covid-19 only 15% were accessing digital appointments, increasing to about 55% after. The availability and take-up of digital appointments has been greatest in USA and smallest in Brasil. The key advantage of digital appointments is reduced effort travelling, and the key disadvantage is having less chance to show symptoms.

25th November - Well over 250 now!

8th November - Just hit 200 results. Here are a few early results:

• Over 50% feel the extent or severity of their symptoms was not believed by medical professionals
• Over 50% feel they did not get adequate support because they have not been taken seriously
• Over 50% did not receive a description of HSP when diagnosed with it.

Nearly 2/3 of people have had fewer healthcare appointments due to Covid-19, but there has been a big uptake in digital appointments. Over 50% feel face-to-face appointments are better than digital. The key benefit of digital appointments is reduced effort travelling. The key disadvantage is less chance to show symptoms.

Living with HSP is the most important category of needs, and the most important need is:

• Stretches and exercises that help. 

Other key needs are: 

• treatment options for spasticity,  
• information on improving mental health/wellbeing, 
• information on accessing relevant healthcare professionals 
• an explanation of HSP on diagnosis
• predicting how HSP will progress in individuals 

22nd October - Well on my way to the first 100 results. Thanks!