Index

Visit

Date of the visit:

* / / *

Subject ID

Gender

Female

Male

Other

Age

Inclusion

Page

Date of data entry

Site

Patient form: (History-taking)

Patient Inclusion

1. How old were you when the first boil* appeared? (Years)

(*inflammatory nodule and/or abscess, usually painful)

2. How old were you when you visit a doctor, for the first time, regarding a boil? Years

3. How old were you when the diagnosis of Hidradenitis Suppurativa was established? Years

4. How long did it take from the first HS-related visit to your general practitioner till the first HS-related visit to a dermatologist? Months

(must be a number between 0 and 99)

(must be a number between 0 and 28)

(must be a number)

5. Who made the diagnosis?

General practitioner

Specialist in infectious diseases

Dermatologist

Surgeon

Gynecologist

Yourself

Other

(Multiple selection possible)

Other:

6. Has your hidradenitis suppurativa ever been misdiagnosed as another condition?

Yes

I do not know

(Single selection)

If yes, which other diagnosis was proposed?

7. How many relapses* have you experienced in the last year?

*A return of the disease after partial recovery from it

8. What is the average duration of a relapse in your case? Days

9. In case of a relapse, where do the boils usually appear?

Mostly at the usual locations

Mostly at new locations

At both usual and new locations

(Single selection)

10. How many boils (new or flared existing boils) did you have during the last 4 weeks?

11. How painful was the most painful boil that bothered you the most during the last 4 weeks?

-1

0 = no pain at all 10 = severe pain

12. How many painful days related to the disease did you have during the last 4 weeks? Days

13. Which kind of pain is associated with your disease?

Continuous pain

Discontinuos pain

(Single selection)

14. How much suppuration was produced by the boil that bothered you the most during the last 4 weeks?

-1

0 = no suppuration 10 = a lot of suppuration

15. How has your disease developed since it started?

it has remained stable

it has become worse

It has improved (decreased in severity)

(Single selection)

16. Have you ever had fever episodes during inflammatory HS outbreaks?

Yes

17. Have you ever been absent from work because of your HS?

Yes

How many days of absence from work have you had due to HS during your whole working life (roughly)? Days

How many days of absence from work have you had due to HS during the last 6 months? Days

18. Has your professional career been influenced by the disease?

Not at all

Yes, a little

Yes, a lot

(Single selection)

19. Aggravating factors/ triggers of flare up:

Stress

Alcohol

Food and drinks

AINS Non-steroidal anti drugs (such as ibuprofen, novaminsulfone)

Pressure or mechanic friction (e.g., friction through tight clothing, underwear)

Other

No aggravating factors

(Multiple selection possible)

20. Does your menstruation have an effect on acne inversa?

Yes, worsening

Yes, improvement

No difference

I do not have menstruation anymore

(Single selection)

Have you ever been pregnant?

Yes

How many times?

Did being pregnant influence the severity of your hidradenitis suppurativa?

(Single selection)

Version 5_November_2021