Cross-sectional deeply phenotyped cohort with painful and painless neuropathy, focusing on diabetic polyneuropathy and extreme/rare neuropathic pain disorders.

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The DOLORisk cohort at the University of Oxford and Imperial College London is a cross-sectional deeply phenotyped cohort of nearly 1,000 participants with painful and painless neuropathy, focussing on diabetic polyneuropathy and extreme/rare neuropathic pain disorders. The dataset comprises detailed phenotypic data from questionnaires, nerve excitability testing, quantitative sensory testing and clinical examination.

1915 people participated in the DOLORISK study.

HDR UK

Dolorisk

Community Health Index (Patient identifier)

DOLORISK_baseline

In the past 7 days… I felt worthless (1-5)

In the past 7 days… I felt helpless (1-5)

In the past 7 days… I felt depressed (1-5)

In the past 7 days… I felt hopeless (1-5)

In the past 7 days… I felt fearful (1-5)

In the past 7 days… I found it hard to focus on anything other than my anxiety (1-5)

In the past 7 days… My worries overwhelmed me (1-5)

In the past 7 days… I felt uneasy (1-5)

In the past 7 days… My sleep score was… (1-5)

In the past 7 days… My sleep was refreshing (1-5)

In the past 7 days… I had a problem with my sleep (1-5)

In the past 7 days… I had difficulty falling asleep (1-5)

Before the age of 18, how many severe traumatic events did you experience? (Score 1-4)

Before the age of 18, did you stay in hospital for a long period because of a life threatening disease or situation? (1=Yes, 2=No)

Personality traits score (1-7): Extroverted, enthusiastic

Personality traits score (1-7): Critical, quarrelsome

Personality traits score (1-7): Dependable, self-disciplined

Personality traits score (1-7): Anxious, easily upset

Personality traits score (1-7): Open to new experiences, complex

Personality traits score (1-7): Reserved, quiet

Personality traits score (1-7): Sympathetic, warm

Personality traits score (1-7): Disorganised, careless

Personality traits score (1-7): Calm, emotionally stable

Personality traits score (1-7): Conventional, uncreative

How often do you have mouth ulcers? (Score 1-5)

How often do you have painful gums? (Score 1-5)

How often do you have bleeding gums? (Score 1-5)

How often do you have loose teeth? (Score 1-5)

How often do you have toothache? (Score 1-5)

Have you ever been a regular smoker of tobacco? List as many as are relevant. (1=Yes, cigarettes; 2=Yes, cigars; 3=Yes, pipes; 4=No)

How old were you when you started smoking?

How old were you when you stopped smoking?

Q12b

On average, how many cigarettes did/do you smoke per week?

Q13a

On average, how many cigars did/do you smoke per week?

Q13b

On average, how many grams of tobacco did/do you smoke per week?

Q13c

On average, how often do you currently drink alcohol? (Score 1-6)

On average, how many pints of beer/lager/ale/stout/cider do you drink per week?

Q15a

On average, how many small (125ml) glasses of red/white/rosé wine do you drink per week?

Q15b

On average, how many 25ml measure of whisky, vodka, gin, rum, brandy or other alcoholic spirits do you drink per week?

Q15c

When in pain score (1-5): I worry all the time about whether the pain will end

Q16a

When in pain score (1-5): I feel I can't go on

Q16b

When in pain score (1-5): It's terrible and I think it's never going to get any better

Q16c

When in pain score (1-5): It's awful and I feel that it overwhelms me

Q16d

When in pain score (1-5): I feel I can't stand it anymore

Q16e

When in pain score (1-5): I become afraid that the pain will get worse

Q16f

When in pain score (1-5): I keep thinking of other painful events

Q16g

When in pain score (1-5): I anxiously want the pain to go away

Q16h

When in pain score (1-5): I can’t seem to keep it out of my mind

Q16i

When in pain score (1-5): I keep thinking of how much it hurts

Q16j

When in pain score (1-5): I keep thinking of how badly I want the pain to stop

Q16k

When in pain score (1-5): There's nothing I can do to reduce the intensity of the pain

Q16l

When in pain score (1-5): I wonder whether something serious may happen

Q16m

Are your legs and/or feet numb? (1=Yes, 2=No)

Do you ever have any burning pain in your legs and/or feet? (1=Yes, 2=No)

Are your feet too sensitive to touch? (1=Yes, 2=No)

Do you ever have any prickling feelings in your legs or feet? (1=Yes, 2=No)

Does it hurt when the bed covers touch your skin? (1=Yes, 2=No)

When you get into the tub or shower, are you able to tell the hot water from the cold water? (1=Yes, 2=No)

Have you ever had an open sore on your foot? (1=Yes, 2=No)

Has your doctor ever told you that you have diabetic neuropathy? (1=Yes, 2=No)

Are your symptoms worse at night? (1=Yes, 2=No)

Do your legs hurt when you walk? (1=Yes, 2=No)

Are you able to sense your feet when you walk? (1=Yes, 2=No)

Is the skin on your feet so dry that it cracks open? (1=Yes, 2=No)

Have you ever had an amputation? (1=Yes, 2=No)

Are you currently troubled by pain or discomfort, either all the time or on and off? (1=Yes, 2=No)

Are you currently taking medications specifically to treat pain or discomfort? (1=Yes, 2=No)

How long have you been suffering with this pain or discomfort? (Score 1-5)

In the past 3 months, which of these pains have you had? (list 1-13):
1 = Back pain
2 = Neck or shoulder pain
3 = Facial or dental pain
4 = Headache
5 = Stomach ache or abdominal pain
6 = Pain in your arms
7 = Pain in your hands
8 = Chest pain
9 = Pain in your hips
10 = Pain in your legs or knees
11 = Pain in your feet
12 = Pain throughout your body (widespread pain)

Q33a

In the past 3 months, which of these pains bothered you the most?
1 = Back pain
2 = Neck or shoulder pain
3 = Facial or dental pain
4 = Headache
5 = Stomach ache or abdominal pain
6 = Pain in your arms
7 = Pain in your hands
8 = Chest pain
9 = Pain in your hips
10 = Pain in your legs or knees
11 = Pain in your feet
12 = Pain throughout your body (widespread pain)

Q33b

In the past 3 months have you had any other pain? Please specify

Q33Other

For the pain which bothered you the most, does it feel like burning?

Q34a

For the pain which bothered you the most, does it feel painful cold?

Q34b

For the pain which bothered you the most, does it feel like electric shocks?

Q34c

For the pain which bothered you the most, do you also experience tingling in the same area?

Q35a

For the pain which bothered you the most, do you also experience pins and needles in the same area?

Q35b

For the pain which bothered you the most, do you also experience numbness in the same area?

Q35c

For the pain which bothered you the most, do you also experience itching in the same area?

Q35d

What do you or your doctor think that this pain is caused by?
1 = A surgical operation more than 3 months ago
2 = Back problems such as a slipped disc, back surgey or sciatica
3 = Bowel or other abdominal or pelvic problem
4 = Diabetes
5 = Arthritis, rheumatism or another joint problem
6 = Cancer or cancer treatrment, such as chemotherapy
7 = Any type of neuralgia, neuropathy or nerve damage (including spinal cord injury)
8 = Shingles
9 = Multiple sclerosis
10 = Muscle problems, such as spasms, straims, tension or tendonitis
11 = Leg ulcers
12 = Loss of a limb
13 = Stroke

What do you or your doctor think that this pain is caused by? Other - Please specify

Q36Other

Average pain score in past 24 hours (0-10)

In the area you have pain, do you often have pins and needles/tingling/prickling sensations? (1=Yes, 2=No)

Does the painful area change colour when the pain is particularly bad? (1=Yes, 2=No)

Does the pain make the affected skin abnormally sensitive to touch? (1=Yes, 2=No)

Does the pain come on suddenly and in bursts for no apparent reason when you are completely still? (1=No, 2=Yes)

In the area where you have pain, does your skin feel unusually hot like a burning pain? (1=No, 2=Yes)

If you gently rub the painful area with your index finger, does the painful area feel different (for instance pins and needles, tingling or burning) to a non-painful area? (1=No, 2=Yes)

If you gently press the painful area with your fingertip, does the painful area feel different (for instance numb or tender) to a non-painful area? (1=No, 2=Yes)

Pain severity score 0-10: how would you rate your pain at the present time?

Pain severity score 0-10: how intense was your worst pain in the past 3 months?

Pain severity score 0-10: how intense was your pain on average in the past 3 months?

DOLORISK

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