A journey to HSP/FSP: September 2018

Saturday, 22 September 2018

2018 Survey Questions (for translation)

The table below is all the questions from my 2018 survey. Its here to allow me to get an easy google translate of all of them. Use the translate tool on this blog to convert this list to the language of your choice. Answer in the questionnaire: http://hspjourney.blogspot.com/2018/09/2018-survey-open.html

Question	English
	1) Personal Details
	In this survey I ask for answers to two questions, your name and your country. I dont mind if you use your real name or a pseudonym of your choice, just enough to allow me to track people who may come back and answer any subsequent surveys. I am also collecting e-mail addresses, should you wish to be contacted about the results of this survey or participation in future surveys. All other questions are optional, so answer if you want or dont if you dont want to. After this page there are 7 more pages: 2) Mobility, 3) HSP Symptoms, 4) Sleep, 5) Activities of Daily Living 6) Support and Tracking, 7) Wellbeing, 8) This questionnaire and my blog 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.
1	What is your name?
2	What is your City/Town/State/Province/County?
3	What country do you live in?
4	What is your e-mail address (for contact about these surveys)?
5	I only wanted to be e-mailed about these things:
5	The results this questionnaire
5	Future questionnaires
5	Not at all
6	Do you have HSP?
6	I have HSP - genetic test
6	I have HSP - other diagnosis
6	I am answering on behalf of someone else with HSP
6	I do not know if I have HSP
6	I do not have HSP
7	If known, what type of HSP do you have? (e.g. SPG4)
8	Were you diagnosed with any other conditions before you were diagnosed with HSP?
8	Yes
8	No
9	If yes, describe or list your other diagnoses.
10	Is there HSP in your family?
10	Other members of my family have HSP
10	Other members of my family do not have HSP
10	Some members of my family may have HSP
10	I do not know if other members of my family have HSP
11	Do you have any other long term health conditions?
11	Yes
11	No
12	If yes, please describe those conditions.
	2) Mobility
	These questions allow me to understand your level of mobility and to correlate your answers here with the other questions.
13	How does HSP affect your mobility at the moment? How did it affect your mobility in 2013?
13	HSP does not affect my mobility
13	I walk without aids, but there are some effects
13	I use walking sticks/poles/crutches some of the time
13	I use walking sticks/poles/crutches most of the time
13	I use walking sticks/poles/crutches all of the time
13	I use FES
13	I use orthotics/AFO
13	I use a rollator/walking frame some of the time
13	I use a rollator/walking frame most of the time
13	I use a rollator/walking frame all of the time
13	I use a wheelchair/mobility scooter some of the time
13	I use a wheelchair/mobility scooter most of the time
13	I use a wheelchair/mobility scooter all of the time
13	At the moment
13	In 2013
14	How has your mobility changed over the last 5 years?
15	How far can you walk?
15	I can walk as far as I want to
15	My spasticity means I get exhausted after a distance beyond 500m
15	I can walk up to 500m
15	I can walk up to 10m
15	I am unable to walk
16	Do you consider yourself to be disabled?
16	Yes
16	No
	3) HSP Symptoms
	This section explores which HSP symptoms you have. Most of the symptoms listed here are HSP symptoms, with some from 'pure' HSP and some from 'complex' HSP. Some of the symptoms listed are more general neurological symptoms.
17	Please select how you are affected by the following mobility symptoms.
17	Difficulty walking
17	Difficulty running
17	Difficulty using stairs
17	My muscles are stiff
17	My muscles are weak
17	Loss of balance
17	Regular falls
17	Get more stiff when it is cold
17	Get more stiff when it is hot
17	Do not have
17	Occasional symptom
17	Minor symptom
17	Frequent symptom
17	Regular symptom
17	Most of the time
17	All of the time
18	Please select how you are affected by the following muscular symptoms.
18	Stiffness/spasticity in arms/upper body
18	Poor co-ordination
18	Back/hip pain
18	Leg/foot pain
18	Clonus (jumping feet or other muscle spasms)
18	Epilepsy or seizures
18	Pes cavus (arched/high feet)
18	Hammer toes (toes curl under)
18	Affected by bladder problems
18	Affected by bowel problems
18	Difficulty swallowing
18	Legs swell up
18	Feet swell up
18	Do not have
18	Occasional symptom
18	Minor symptom
18	Frequent symptom
18	Regular symptom
18	Most of the time
18	All of the time
19	Please select how you are affected by the following other symptoms.
19	Fatigue
19	Stress
19	Depression
19	Numbness
19	Pins and needles
19	Ichthyosis (widespread persistent thick, dry, "fish-scale" skin)
19	Loss of vibration sensitivity in legs
19	HSP affecting learning or memory
19	HSP affecting hearing
19	HSP affecting vision
19	HSP affecting speech
19	HSP affecting sexual function
19	Fail to remember dreams
19	Changes in perceptions of smell/taste
19	Do not have
19	Occasional symptom
19	Minor symptom
19	Frequent symptom
19	Regular symptom
19	Most of the time
19	All of the time
20	Of these symptoms, describe which ones have the greatest overall effects/impacts for you.
21	Any other comments on these symptoms, or describe other symptoms you have.
	4) Sleep
	This page explores your sleep quality.
22	Please think about your sleep over the last four weeks and select the choice which best describes your situation.
22	Did you have difficulty falling asleep, staying asleep, or feeling poorly rested in the morning?
22	Did you fall asleep unintentionally or have to fight to stay awake during the day?
22	Did sleep difficulties or daytime sleepiness interfere with your daily activities?
22	Did work or other activities prevent you from getting enough sleep?
22	Did you snore loudly?
22	Did you hold your breath, have breathing pauses, or stop breathing in your sleep?
22	Did you have restless or "crawling" feelings in your legs at night that went away if you moved your legs?
22	Did you have repeated rhythmic leg jerks or leg twitches during your sleep?
22	Did you have nightmares, or did you scream, walk, punch, or kick in your sleep?
22	Did pain disturb you in your sleep?
22	Did other physical symptoms disturb you in your sleep?
22	Did worries disturb you in your sleep?
22	Did medications disturb you in your sleep?
22	Did needing the toilet disturb you in your sleep?
22	Did other factors disturb you in your sleep?
22	Did you feel sad or anxious?
22	Did you sleep in a bed at night?
22	Did you sleep in a chair at night?
22	never
22	sometimes
22	usually
22	always
22	Please describe any other factors which disturbed you in your sleep?
23	Any other comments on sleep
	5) Activities of Daily Living
	This page explores activities of daily living
24	Please select the answer which best describes your bathing.
24	Bathes self completely or needs help in bathing only a single part of the body such as the back, genital area or disabled extremity.
24	Needs help with bathing more than one part of the body, getting in or out of the tub or shower. Requires total bathing.
25	Please select the answer which best describes you getting dressed
25	Gets clothes from closets and drawers and puts on clothes and outer garments complete with fasteners. May have help tying shoes.
25	Needs help with dressing self or needs to be completely dressed.
26	Please select the answer which best describes your toileting
26	Goes to toilet, gets on and off, arranges clothes, cleans genital area without help.
26	Needs help transferring to the toilet, cleaning self or uses bedpan or commode.
27	Please select the answer which best describes your transferring
27	Moves in and out of bed or chair unassisted. Mechanical transferring aides are acceptable.
27	Needs help in moving from bed to chair or requires a complete transfer.
28	Please select the answer which best describes your continence
28	Exercises complete self control over urination and defecation
28	Is partially or totally incontinent of bowel or bladder
29	Please select the answer which best describes your eating
29	Gets food from plate into mouth without help. Preparation of food may be done by another person.
29	Needs partial or total help with feeding or requires parenteral feeding.
30	Any other comments on these activities of daily living?
	6) Support and Tracking
	This page examines if you are a member of a support group and how you track your progress.
31	Are you a member of a support group?
31	Yes
31	No
32	If yes, describe which support group you are a member of.
33	If yes, what do you think the key benefits of membership are?
34	If no, which of these best describe why?
34	i dont feel the need to be a member of one
34	I am not aware of any support groups
34	There are no groups near where I live
34	I feel it would be too much effort to be a member
34	I dont think the group would give me the support I need
34	Another reason
35	Do you track the progress of your symptoms?
35	Yes
35	No
36	If yes, describe how you track this
	7) Wellbeing
	This page investigates wellbeing.
37	Please select the option that best describes your feelings and thoughts over the last 2 weeks
37	I’ve been feeling optimistic about the future
37	I’ve been feeling useful
37	I’ve been feeling relaxed
37	I’ve been feeling interested in other people
37	I’ve had energy to spare
37	I’ve been dealing with problems well
37	I’ve been thinking clearly
37	I’ve been feeling good about myself
37	I’ve been feeling close to other people
37	I’ve been feeling confident
37	I’ve been able to make up my own mind about things
37	I’ve been feeling loved
37	I’ve been interested in new things
37	I’ve been feeling cheerful
37	None of the time
37	Rarely
37	Some of the time
37	Often
37	All of the time
	8) My Survey and Blog
	This final section aims to capture your awareness of my surveys and blog.
38	Did you take part in one or more of my previous surveys?
38	Yes, completed at least one
38	I started to fill out some answers
38	Didn't participate - I wasn't aware of these
38	Didn't participate - didn't want to answer
39	If you wish, please give me feedback about this survey, previous survey, or on my analyses.
40	Have you read my blog http://hspjourney.blogspot.co.uk?
40	I read regularly
40	I read occasionally
40	I have not read
41	If you wish, please give me feedback about my blog - perhaps things you like/dislike/would like to see etc.
42	If you read my blog, how did you become aware of it?

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:

Access to a survey website which meets the requirements
Making sure that translated questions have the same meaning as my English questions
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."

Tuesday, 11 September 2018

2018 Survey Open

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

My focus for this survey is understanding:

HSP Symptoms
Sleep
Activities of Daily Living
Support group membership and Progress tracking
Misdiagnosis

There are a range of questions for each topic. I have designed my own questions for symptoms, support group membership and misdiagnosis. Sleep is assessed using the Global Sleep Assessment Questionnaire (with a couple of additional questions added). Activities of Daily Living are assessed using the Katz index.

Last year I had good opportunity to explore which HSP factors affected Wellbeing, and these questions are repeated from last year, using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) for assessing positive mental health.

The list of HSP symptoms is expanded from my first survey in 2013, and I will examine change in symptoms between 2013 and now, where I have data. I will also examine change in mobility over the period I have been running surveys for those who have completed more than one survey.

Following the previous pattern, I will collect results until early 2019, then analyse these to publish the results here on rare disease day, 28th Feb 2019.

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.

Therefore, I would appreciate any readers with HSP to complete this years survey:
https://www.surveymonkey.co.uk/r/HSP2018AL

If you dont speak English then the following links will take you to a PDF which has the questions in English and other languages to help you answer. I will use Google translate to get your answers back to English for the analysis
https://drive.google.com/open?id=1yQhHgn-Q8hXxhwJrx19av6cWO1olG1tP (French)
https://drive.google.com/open?id=1MLAIichys6Xc3ueGJ9VGwcdkfOzjWs7U (Portuguese)

** 27th November Update **

Hi. I’m collecting answers to my HSP survey for about another month. I’ve over 200 responses so far. This is an initial look at two questions.

For symptoms, fatigue is one symptom which about one third of people feel affects them the most. Others are:

Fatigue	34%
Mobility	27%
Stiffness/weakness	19%
Balance	17%
Pain	17%
Bladder/Bowel issues	15%
Sexual function	6%
Cognitive issues	6%

Looking at sleep – over half of people usually or always have difficulty falling asleep, staying asleep, or feeling poorly rested in the morning. The biggest factor is needing the toilet where nearly half of people are affected by this usually or always. Other factors are:

Need the toilet	44%
Repeated jerks or twitches	30%
Feeling restless	27%
Disturbed by pain	27%

Over a quarter fall asleep unintentionally or have to fight to stay awake, and over a quarter have sleepiness interfering with daytime activities.

I’m very pleased to see answers other than in English, it is expanding my audience. I would be pleased to see more data, so if you have a spare 20 minutes, please give your answers.

** 5th October Update **

I have over 150 responses so far, the most ever at this time! Thanks to everyone who has completed so far. People are taking about 20 minutes to complete this survey.

Initial headlines:

· About 80% of people regard themselves as disabled.

· About a third of people were mis-diagnosed prior to their HSP diagnosis.

· About a third of people have another long term health condition alongside their HSP

· About 60% of people are a member of a support group

· Symptoms affecting the most people:

o Difficulty running/walking – 90%

o Difficulty with stairs and/or balance – 85%

o Feeling more stiff when cold and/or fatigue – 80%

o Pain in lower body, bladder problems, stress, clonus – 60%

· There is a big overlap in muscles feeling stiff and muscles feeling weak, each around 85%

I’d be really pleased to hear from more, so if you have HSP and a spare 20 minutes, please take part. If you dont speak English there are translation sheets for the questions into French, Portuguese, Italian, Dutch, Spanish, Swedish, Danish, German, Japanese, Greek and Norwegian.

Pages

Saturday, 22 September 2018

2018 Survey Questions (for translation)

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

Tuesday, 11 September 2018

2018 Survey Open