Study ID:______Date______
The following questions will help us understand the problems people with POTS encounter. We have also asked some additional questions to help us understand a little about you and your lifestyle
You do not have to answer all the questions please just answer those you are comfortable to.
If you would like to make any other comments please add these in the space provided at the end of the questionnaire
SECTION 1
1)Age _____2) Sex Male Female
3)Height _____ 4) Weight _____
5)What is your ethnic group?Tick one of the following boxes which best describes your ethnic groupor background.
A – White
British
Irish
Any other White background
B – Mixed
White and Black Caribbean
White and Black African
White and Asian
Any other Mixed background
C - Asian or Asian British
Indian
Pakistani
Bangladeshi
Any other Asian background
6) Do you smoke? Yes No
6a) If yes how many do you smoke a day? _____
7) Have you smoked in the past? Yes No
7a) How many did you smoke in a usually day _____
7b) How many years did you smoke for? _____
8) How much alcohol do you drink per week? ______
9)Do you drink caffeinated drinks? Yes No
If yes how much in a normal day? _____
10) Do you take any recreational drugs?Yes No
If yes please specify
11)Are you currently engaging in any form of exercise?
Yes No
11a) If you do not exercise, why aren’t you exercising? (Check all boxes that you agree with)
Not interested
No time
Would like to but cannot because of problems with fatigue/energy
Cannot because exercise makes symptoms worse
12) In the past 4 weeks, approximately how many hours per week have you spent doing:
Household related activities?hours per week
Social/Recreational related activities?_____hours per week
Family related activities?_____hours per week
Work related activities?_____hours per week
13) What grade or degree have you completed in education?
Left school at 16
Left school at 18
University degree
Post graduate degree
Other
14) What is your current work status? (Check all that apply)
On disability
Student
Homemaker
Unemployed
Working part-time
Working full-time
14a) If you are on disability, for what condition do you receive a disability living allowance?
Please Specify
15) What is your current occupation?
Current
13a) How many hours a week do you work? ______
16) If you are currently not working, what was your most recent occupation?
Most Recent
17) Have you had to change your job or the hours you work because of your health? Yes No
18) If you do not work are you unable to work because of problems with your health? Yes No
SECTION 2
19) When did you first have symptoms related to POTS?______
20) When were you diagnosed with POTS?
21) Who diagnosed you?
22) What symptoms did you first notice?Please place an ‘X’ in all that apply
Palpitations / BreathlessnessFatigue / Light headedness
Dizziness / Muscle aches
Memory impairment
23) Please tell us any other symptoms you have
24) Did you experience any of the following symptoms regularly and repeatedly in the months and years before your POTS problems began?
Sore throat
Tender/sore lymph nodes
Unrefreshing sleep
Impaired memory and concentration
Prolonged fatigue following physical or mental exertion
Muscle pain
Headaches
Joint Pain
Not having a problem with fatigue/energy
25) Did your POTS symptoms start after you experienced any of the following? (Check one or more and please specify)
An infectious illness
An accident
A holiday or vacation
An immunization (shot at doctor’s office)
Surgery
Severe stress (bad or unhappy event(s))
Other
I am not ill
26) Have you ever been diagnosed and/or treated for any of the following: (Check all that apply and write year (s) experienced, years treated, and medication (if applicable) in the blank)
Major depression
Anxiety
Panic Disorder
27) Do you have any other health problems? Yes No
27a) If you have health problems what are they?
28) What Medication do you currently take for POTS?
29) What Medication have you previously tried for POTS? (please list reason for stopping the treatment)
30) What Medication do you take for Other Health Problems?
SECTION 3
Do you agree with these statements?
For each of the following questions, please answer by placing an ‘X’ in the appropriate box.
Because of fatigue (low energy)…
If the question is not relevant to you, please write an “X” in “no problem”
no problem / small problem / moderate problem / bigproblem / extreme problem
I feel less alert
I feel that I am more isolated from social contact
I have to reduce my workload or
responsibilities
I am more moody.
I have difficulty paying attention for a long period
I feel I cannot think clearly.
I work less effectively (this applies to work inside or outside the home)
I have to rely more on others to help me or do things for me.
I have difficulty planning activities ahead of time
I am more clumsy and uncoordinated
I find that I am more forgetful
no problem / small problem / moderate problem / big problem / extreme problem
I am more irritable and more easily angered
I have to be careful about pacing my physical activities
I am less motivated to do anything that requires physical effort
I am less motivated to engage in social activities
My ability to travel outside my home is limited
I have trouble maintaining physical effort for long periods
I find it difficult to make decisions
I have few social contacts outside my own home
Normal day to day events are stressful for me
I am less motivated to do anything which requires thinking
I avoid situations that are stressful for me
My muscles feel much weaker than they should do
My physical discomfort is increased
I have difficulty dealing with anything new
I am less able to finish tasks that require thinking
I feel unable to meet the demands that people place on me
I am less able to provide financial support for myself and my family
I engage in less sexual activity
I find it difficult to organise my thoughts when I am doing things at home or at work
I am less able to complete tasks that require physical effort
I worry about how I look to other people
I am less able to deal with emotional issues
I feel slowed down in my thinking
no problem / small problem / moderate problem / big problem / extreme problem
I feel it hard to concentrate
I have difficulty participating fully in family activities
I have to limit my physical activities
I require more frequent or longer periods of
rest
I am not able to provide as much emotional support to my family as I should.
Minor difficulties seem like major difficulties
This next set of questions will help you measure your general level of daytime sleepiness.
Each situation describes a normal routine daytime situation. See how likely you are to doze off or fall asleep in the following situations (in contrast to just feeling tired). Even if you have not done some of these things recently, just consider how they would have affect on you.
Please Select Only One Box Per Question by placing an ‘X’ in the appropriate box.
41) Sitting and reading
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
42) Watching TV
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
43) Sitting, inactive in a public place (i.e. a meeting)
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
44) As a passenger in a car for an hour without a break
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
45) Lying down to rest in the afternoon when circumstances permit
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
46) Sitting and talking to someone
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
47) Sitting quietly after a lunch without alcohol
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
48) In a car while stopped for a few minutes in traffic
0 - Would never doze off
1 - Slight Chance of dozing
2 - Moderate chance of dozing
3 - High chance of dozing
This next set of questions will help us measure your general level of orthostatic symptoms.For each of the following questions, please answer by placing an ‘X’ in the appropriate box.
49) Frequency of dizzy symptoms
0 - I never or rarely experience dizziness when I stand up
1 - I sometimes experience dizziness when I stand up
2 - I often experience dizziness when I stand up
3 - I usually experience dizziness when I stand up
4 - I always experience dizziness when I stand up
50) Severity of orthostatic symptoms
0 - I do not experience dizziness when I stand up
1 - I experience mild dizziness when I stand up
2 - I experience moderate dizziness when I stand up and sometimes have to sit back down for relief
3 - I experience severe dizziness when I stand up and frequently have to sit back down for relief
4 - I experience severe dizziness when I stand up and regularly faint if I do not sit back down
51) Conditions under which orthostatic symptoms occur
0 - I never or rarely experience dizziness under any circumstances
1 - I sometimes experience dizziness under certain conditions, such as prolonged standing, a meal, exertion (eg, walking), or when exposed to heat (eg, hot day, hot bath, hot shower)
2 - I often experience dizziness under certain conditions, such as prolonged standing, a meal, exertion (eg, walking), or when exposed to heat (eg, hot day, hot bath, hot shower)
3 - I usually experience dizziness under certain conditions, such as prolonged standing, a meal, exertion (eg, walking), or when exposed to heat (eg, hot day, hot bath, hot shower)
4 - I always experience dizziness when I stand up; the specific conditions do not matter
52) Activities of daily living
0 - My dizziness does not interfere with activities of daily living (eg, work, chores, dressing, bathing)
1 - My dizziness mildly interferes with activities of daily living (eg, work, chores, dressing, bathing)
2 - My dizziness moderately interferes with activities of daily living (eg, work, chores, dressing, bathing)
3 - My dizziness severely interferes with activities of daily living (eg, work, chores, dressing, bathing)
4 - My dizziness severely interfere with activities of daily living (eg, work, chores, dressing, bathing). And I am in bed or a wheel chair because of it.
53) Standing time
0 - On most occasions, I can stand as long as necessary without experiencing dizziness
1 - On most occasions, I can stand more than 15 minutes before experiencing dizziness
2 - On most occasions, I can stand 5-14 minutes before experiencing dizziness
3 - On most occasions, I can stand 1-4 minutes before experiencing dizziness
4 - On most occasions, I can stand less than 1 minute before experiencing dizziness
SECTION 4
1. I feel tense or 'wound up':
0 - Not at all
1 - From time to time, occasionally
2 - A lot of the time
3 - Most of the time
2. I still enjoy the things I used to enjoy:
0 - Definitely as much
1 - Not quite so much
2 - Only a little
3 - Hardly at all
3.I get a sort of frightened feeling as if something awful is about to happen:
0 - Not at all
1 - A little, but it doesn't worry me
2 - Yes, but not too badly
3 - Very definitely and quite badly
4.I can laugh and see the funny side of things:
0 - As much as I always could
1 - Not quite so much now
2 - Definitely not so much now
3 - Not at all
5.Worrying thoughts go through my mind:
0 - Only occasionally
1 - From time to time, but not too often
2 - A lot of the time
3 - A great deal of the time
6.I feel cheerful:
0 - Most of the time
1 - Sometimes
2 - Not often
3 - Not at all
7.I can sit at ease and feel relaxed:
0 - Definitely
1 - Usually
2 - Not often
3 - Not at all
8.I feel as if I am slowed down:
0 - Not at all
1 - Sometimes
2 - Very often
3 - Nearly all the time
9.I get a sort of frightened feeling like 'butterflies' in the stomach:
0 - Not at all
1 - Occasionally
2 - Quite Often
3 - Very Often
10.I have lost interest in my appearance:
0 - I take just as much care as ever
1 - I may not take quite as much care
2 - I don't take as much care as I should
3 - Definitely
11.I feel restless as I have to be on the move:
0 - Not at all
1 - Not very much
2 - Quite a lot
3 - Very much indeed
12.I look forward with enjoyment to things:
0 - As much as I ever did
1 - Rather less than I used to
2 Definitely less than I used to
3 - Hardly at all
13.I get sudden feelings of panic:
0 - Not at all
1 - Not very often
2 - Quite often
3 - Very much indeed
14.I can enjoy a good book or radio or TV program:
0 - Often
1 - Sometimes
2 - Not often
3 - Very seldom
Please tell us your ability to carry out your daily activities by placing a ‘X’ in the box that best describes your activities. You are able to…..
Without any difficulty / With a little difficulty / With some difficulty / With much difficulty / Unable to do1 / Dress yourself, including shoelaces and buttons?
2 / Shampoo your hair?
3 / Stand up from an armless straight chair?
4 / Get in and out of bed?
5 / Cut your food using eating utensils?
6 / Lift a full cup or glass to your mouth?
7 / Open a new milk carton?
8 / Walk a block on flat ground?
9 / Climb up 5 steps?
10 / Wash and dry your body?
11 / Take a tub bath?
12 / Get on and off the toilet?
13 / Reach and get down a 5 pond object from above your head)?
14 / Bend down to pick up clothing from the floor?
15 / Open car doors?
16 / Open previously opened jars?
17 / Turn faucets on and off?
18 / Run errands and shop?
19 / Get in and out the car?
20 / Do chores such as vacuuming or yard work?
For each of the following questions, please answer by placing an ‘X’ in the appropriate box.
22) To get around, do you usually need a crane, crutches, walker, wheelchair or help from another person?
Yes
No
23) To stand up from a sitting position, do you usually need a special chair, a raised toilet seat or help from another person?
Yes
No
24) To get dressed do you usually need a buttonhook, zipperpull or other gadget, or help from another person?
Yes
No
25) To reach something do you usually need long handled appliances or help from another person?
Yes
No
27) Your activities: To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries or moving a chair?
0 - Completely
1 - Mostly
2 - Moderatley
3 –A little
4 –Not at all
28) Your Pain: How much pain have you had in the past week? On a scale of 0 to 100 (where zero represents “no pain” and hundred represents “ severe pain”) Please record the number below.
(0-100)
29) Your Health: Please rate how well you are doing on a scale of 0 to 100 (where zero represents “very well” and hundred represents “ very poor”) Please record the number below.
(0-100)
SECTION 5
The following questions are about minor mistakes which everyone makes from time to time, but some of which happen more often than others. We want to know how often these things have happened to you in the past 6 months.
Place an ‘X’ in the box that most applies to you.
Very often / Quite Often / Occasionally / Very Rarely / Never1 / Do you read something and find you haven’t been thinking about it and must read it again?
2 / Do you find you forget why you went from one part of the house to the other?
3 / Do you fail to notice signposts on the road?
4 / Do you find you confuse right and left when giving directions?
5 / Do you bump into people?
6 / Do you find you forget whether you’ve turned off a light or a fire or locked the door?
7 / Do you fail to listen to people’s names when you are meeting them?
8 / Do you say something and realize afterwards that it might be taken as insulting?
9 / Do you fail to hear people speaking to you when you are doing something else?
10 / Do you lose your temper and regret it?
11 / Do you leave important letters unanswered for days?
12 / Do you find you forget which way to turn on a road you know well but rarely use?
13 / Do you fail to see what you want in a supermarket (although it’s there)?
14 / Do you find yourself suddenly wondering whether you’ve used a word correctly?
15 / Do you have trouble making up your mind?
16 / Do you find you forget appointments?
17 / Do you forget where you put something like a newspaper or a book?
18 / Do you find you accidentally throw away the thing you want and keep what you meant to throw away – as in the example of throwing away the matchbox and putting the used match in your pocket?
19 / Do you daydream when you ought to be listening to something?
20 / Do you find you forget people’s names?
21 / Do you start doing one thing at home and get distracted into doing something else (unintentionally)?
no problem / small problem / moderate problem / big problem / extreme problem
22 / Do you find you can’t quite remember something although it’s “on the tip of your tongue”?
23 / Do you find you forget what you came to the shops to buy?
24 / Do you drop things?
25 / Do you find you can’t think of anything to say?
Please use the space below if you would like to add any comments.
Thank you for taking the time to complete this questionnaire.
The information you have provided will help us understand more about the clinical aspects of POTS so that current and future patients will have a better understanding of their condition.
We would also like to ask a few more questions about your condition in the form of a second questionnaire. (approx.20 minutes to complete)
If you would be happy to receive a second questionnaire and/or be happy to receive information about further research concerning your condition please tick the boxes below.
YES I am happy to complete a second questionnaire
YES I am happy to be receive information about future research