Annual survey - The background, the reasons and the limits!

Yesterday evening I used google translate to translate the "my survey is now open" message into various languages and post this on a multitude of different HSP groups on Facebook. There are a number of common questions which come up, and this blog post explores answers for these. Most of these questions have come up in previous years on the English groups, so the answers are still relevant.

One beauty of Blogger is the translate tool, allowing people from all over the world to read these posts.

Why do you want this data?

Back when I first had my diagnosis I was exploring websites giving the different HSP symptoms. There was little information about what they were and how common they were, and there was also little information about how quickly HSP progresses. Eventually I decided to find out more information by asking other people with HSP, and that formed the basis for my first survey in 2013. I set up an on-line questionnaire, and asked people to complete via support groups and facebook groups. There was a lot of interest in the results of this, and this set the precedent for the other surveys. Each year I look at a small number of topics and ask questions. I write up the results, and that gives others with HSP the same information to compare their own situation against.

I dont speak English....

This question comes up each year - can I see the questionnaire in another language? It is a tricky question. the constraints are:

1. Access to a survey website which meets the requirements
2. Making sure that translated questions have the same meaning as my English questions
3. Time spent setting up, managing and analysing the results.

On the first, all of the free on-line survey hosting sites are limited to single language and a maximum of 100 responses. I easily get more responses than that, but I dont wish to spend my own money on a monthly subscription for a survey platform which I use once a year. The current solution is that I have a log-in to my employers survey platform, with the agreement that I can use it for one survey - it is the single language option. Some platforms do have multi-language options, but they are even more expensive.

On the second, when I have been looking at which standard tools I want to use to ask questions about certain HSP symptoms I spot that some of them have been translated into other languages, and been demonstrated to give the same results. By keeping to one language I avoid having to add another of interpretation. The other language list this year is: Spanish, French, Italian, Portuguese, German, Dutch, Swedish, Danish, Greek and Japanese. (Some of those groups are listed here: http://hspjourney.blogspot.com/2017/03/community-pages-2017.html)

On the third point, its very personal. I'm fitting in the survey and write up around my family and my job.  I think that running 11 surveys instead of one would at least double the amount of time that it takes me to do this.

Conclusion - I would be happy to run surveys in more than one language if someone else would pay to host these - a single sign in with a multi-language option would be best. I would also need to talk with others fluent in both English and those languages to make sure that the questions mean the same things.

Late Sept Update - since writing this I've now Google translated the questions into these other languages (and Norwegian) as a trial. I realise that I haven't had the translated meanings checked. I'll see what this does for my number of respondents and the analysis in the new year.

*** Please drop me a line if you are interested in helping! ***

Why dont you ask about....

I select a small number of topics each year. Some of these I will repeat on a 5 year rotation, others will come and go as needed. Summary:

Mobility, symptoms, misdiagnosis - 2013

Medication, exercise, diet, relaxation - 2014

Home modifications, depression, quality of life - 2015

Fatigue, bladder, bowel, HSP information - 2016

Pain, walking, occupation, wellbeing - 2017

Mobility, symptoms, misdiagnosis, sleep, daily living - 2018 

Possible future topics: Travel, grief, dating/relationships, life space logging, getting support, diagnostic tools used. 

I'm likely to repeat the 2014 medication questions in my 2019 survey.

Why dont you ask about my condition?

Some of the facebook groups are for HSP and similar topics. I get asked why I dont include questions for other conditions. The main reasons are; firstly the same as why I havent added additional languages - the extra time and effort involved, and secondly that I dont have a good understanding of what the key issues are for people with these other conditions. There would be a learning curve to understand this.

*** I am happy to discuss with anyone else my question selection process and my data analysis/interpretation processes, so that they could set up a similar survey for any other condition. Please drop me a line if you want to do this ***

Is my data safe?

The process I use is - use a survey platform to host the questions. I download the data to my PC and do all the analysis in Excel. I send emails using the BCC field for addressing. I included this data statement at the start of this years survey: 

"By completing this survey your results will be used in the analysis to paint a picture of certain aspects of HSP. All analysis is anonymised. Your information will not be shared with any other person/company. The survey data is backed up using on-line file storage systems."