Friday, 16 September 2016

Autumnal Survey 2016

** Feb 28th - Results published: http://hspjourney.blogspot.co.uk/2017/02/2016-survey-results.html **

After the success of my previous surveys, and feedback from readers and others, I'm continuing the pattern with another survey this year.

My main focus for this survey is understanding fatigue, which many with HSP suffer from. I have selected 3 different short-form fatigue questionnaires, the 5 question Modified Fatigue Impact Scale (MFIS-5), the 9 question Neurological Fatigue Index (NFI-MS) and the 9 question Brief Fatigue Inventory (BFI). I will be interested to see which questionnaire people prefer.

I also ask questions on bladder and bowel issues using the  ICIQ-OAB questionnaire for over-active bladders and some of the questions from the ICIQ-B questionnaire for bowels. Bladder issues are well known, but whilst bowel issues are reported less frequently there still seem to be many who have them. Finally, I ask about how people find out information about HSP.

Following the previous pattern, I will collect results until early 2017, then analysing these in time to publish the results here on rare disease day, 28th Feb 2017.

Also like before, all questions are optional (apart from your name and country). If you have taken part in any of my surveys before, I'd appreciate you using the same name to allow tracking. This year, I am also collecting e-mail addresses to build up a list of people interested in taking part in these surveys in future years.

I would appreciate any readers with HSP to complete this survey:
http://www.surveygizmo.com/s3/3034453/ffafca058b23

2 comments:

  1. I filled the survey in, and it how many times you pass water in the day and at night time, but it not mention if you were using a catheter to do this, as I do use 3 in the day time and once at night time, if I didn't it would cause me to pass water a lot more times.

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  2. I'm now about half way through my survey collection, I've about 100 results, predominantly from the UK and USA. Thanks to those who have completed so far. If you can spare 15-20 mins I'd be very pleased for some more responses.

    I've people across the range of mobility. Looking at fatigue, there are responses across the scale, and I'll see how this varies with mobility.

    Some answers not too surprising: fatigue affects many people's walking and ability to do things requiring physical effort. Many people are shattered by the end of the day, and many who over-do know about it the next day. There is a mild preference for the NFI-MS scale.

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