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Global Hidradenitis Suppurativa COVID-19 Registry Patient Survey

The following survey should be completed by patients with hidradenitis suppurativa (HS) who have experienced COVID-19 infection, or their caregivers. If you are completing this survey on behalf of an HS patient, some questions may not be relevant or answerable.

Healthcare providers should click here to complete the Provider Survey.

The purpose of this patient survey is to understand how to best care for HS patients during the COVID-19 pandemic.

We will ask about your background, your HS, and your COVID-19 diagnosis and treatment.

Please respond to all of the questions. Please answer each question to the best of your ability. Please do not leave any questions blank. This survey may take 10-15 minutes to complete. Participation in this survey is voluntary and anonymous.

If you have any questions, please direct them to hscovid@ucsf.edu.

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------------survey title------------------
Global Hidradenitis Suppurativa COVID-19 Registry Patient Survey

-----------survey instructions--------------------------------------
The following survey should be completed by patients with hidradenitis suppurativa (HS) who have experienced COVID-19 infection, or their caregivers. If you are completing this survey on behalf of an HS patient, some questions may not be relevant or answerable.

Healthcare providers should click here to complete the Provider Survey.

The purpose of this patient survey is to understand how to best care for HS patients during the COVID-19 pandemic.

We will ask about your background, your HS, and your COVID-19 diagnosis and treatment.

Please respond to all of the questions. Please answer each question to the best of your ability. Please do not leave any questions blank. This survey may take 10-15 minutes to complete. Participation in this survey is voluntary and anonymous.

If you have any questions, please direct them to hscovid@ucsf.edu.

----------completion response text---------------
Thank you for participating in this survey.

In the coming months, we will survey patients to understand the long-term effects of COVID-19 illness. Please consider revisiting our website to participate in that survey.

If you have any questions, please email hscovid@ucsf.edu.

Expand

Have you been diagnosed with, or thought you had, COVID-19?

* must provide value

Yes

No

I don't know

This survey was developed to collect data from HS patients who experienced COVID-19 illness. If you have been diagnosed with or thought you had COVID-19, please adjust the above answer choice. If you have were not diagnosed with COVID-19 or do not think you had COVID-19, please do not complete the rest of the survey. We appreciate your interest in participation.

Who is completing this survey?

* must provide value

Self/HS Patient

Spouse

Parent/Guardian

Caregiver

Other ______________

Please specify other responder.

What is your age in years?

* must provide value

What sex were you assigned at birth, meaning on your original birth certificate?

* must provide value

Male

Female

Intersex

What is your race or ethnicity? Check all that apply.

* must provide value

White/Caucasian/North African/Arabic/Persian

Black - African

Afro - Caribbean

African American

American Indian / Alaska Native

Asian American

Asian: Indian, Pakistani, Nepali, Bangladeshi

Asian: Chinese

Asian: Filipino

Asian: Japanese

Asian: Korean

Asian: Vietnamese

Asian: Other Asian

Hispanic or Latino

Native Hawaiian

Guamanian or Chamorro

Samoan

Other Pacific Islander

Other: ________________

Unknown

Decline to answer

Please specify other race or ethnicity.

What is the highest level of school you have completed or the highest degree you have received? Select one best answer.

No schooling completed

Primary/nursery school to 8th grade

Some high school, no diploma

High school graduate, diploma or the equivalent (for example: GED)

Some college credit, no degree

Trade/technical vocational training

Associate's degree

Bachelor's degree

Master's degree

Professional degree (MD, JD, EdD, PharmD, etc.)

Doctorate degree (PhD)

Immediately prior to the COVID-19 pandemic, what was your employment status? Select one best answer.

Employed outside the home, full-time

Employed outside the home, part-time

Homemaker

Student

Retired

Unemployed

Disabled

Other: ___________

Please specify other employment status immediately prior to the COVID-19 pandemic.

* must provide value

What is your current employment status? Select one best answer.

Employed outside the home, full-time

Employed outside the home, part-time

Homemaker

Student

Retired

Unemployed

Disabled

Other: ___________

Please specify other current employment status.

What type of area do you live in?

Urban

Rural

Suburban

What is your country of residence?

* must provide value

What is your state/province/region/territory of residence?

* must provide value

Have you been diagnosed with hidradenitis suppurativa (HS) by a licensed healthcare provider?

* must provide value

Yes

No

I don't know

Have you had recurrent boils during the last 6 months?

* must provide value

Yes

No

I don't know

Have these boils been located to the armpits or groin?

* must provide value

Yes

No

I don't know

Approximately how old were you in years when started first experiencing HS symptoms?

In the last 12 months, what types of healthcare providers helped you care for your HS? Check all the apply.

Dermatologist

Emergency physician or Hospitalist

Endocrinologist

OB/GYN

Pediatrician

Primary care physician

Rheumatologist

Infectious disease doctor

Psychiatrist

Surgeon

Urologist

Naturopathic/ayurvedic/herbalist/Chinese medicine doctor

Nurse practitioner (NP)

Physician Assistant (PA)

Other: __________________

None

Please specify other healthcare provider.

In the last 12 months, what type of healthcare provider primarily helped you care for your HS? Select one best answer.

* must provide value

Dermatologist

Emergency physician or Hospitalist

Endocrinologist

OB/GYN

Pediatrician

Primary care physician

Rheumatologist

Infectious disease doctor

Psychiatrist

Surgeon

Urologist

Naturopathic/ayurvedic/herbalist/Chinese medicine doctor

Nurse practitioner (NP)

Physician Assistant (PA)

Other: __________________

None

Please specify other primary healthcare provider.

Since the onset of the COVID-19 pandemic, how have you communicated with the healthcare provider who primarily cares for your HS? Check all that apply

I have not needed to communicate with my healthcare provider

I have not been able to communicate with my healthcare provider

Hospital visit

Clinic visit

Telehealth/telemedicine/video visit

Email/patient portal

Phone call

Other: _____________________

Please specify other communication method.

Where on your body have you ever been affected by HS? Check all that apply.

Armpit

Behind ears

Under breast

Lower abdomen

Back and shoulders

Chest

Groin

Inner thighs

Arms/Legs

Buttocks

Head (face, jaw, scalp, cheek)

Other _____________

Please specify other affected body sites.

At the time of your COVID-19 diagnosis, what Hurley stage was your HS? Select one best answer.

* must provide value

Hurley stage 0: no abscesses, no painful bumps, tunnels under the skin, no scar

Hurley stage 1: one or more abscesses or painful bumps WITHOUT tunnels under the skin or scar

Hurley stage 2: 1 or more widely separated recurring abscesses or painful bumps WITH tunnels under the skin and scarring

Hurley stage 3: multiple interconnected abscesses and tunnels under the skin across an entire body site

I don't know

At the time of your COVID-19 diagnosis, what Hurley stage was your HS? Select one best answer.

* must provide value

Hurley stage 1: none, one, or more abscesses or painful bumps WITHOUT tunnels under the skin or scar

Hurley stage 2: 1 or more widely separated recurring abscesses or painful bumps WITH tunnels under the skin and scarring

Hurley stage 3: multiple interconnected abscesses and tunnels under the skin across an entire body site

I don't know

Was this Hurley stage given to you by a licensed healthcare provider?

* must provide value

Yes

No

How active was your HS at the time of your COVID-19 diagnosis? Please check one.

* must provide value

Not active at all

Mild activity

Moderate activity

Severe activity

Very severe activity

I don't know

What happened to your HS during your COVID-19 infection? Please check one.

* must provide value

Very much improved

Much improved

Minimally improved

No change

Minimally worse

Much worse

Very much worse

I don't know

In the 3 months before your COVID-19 diagnosis, which of the following medical treatments had you used? Check all that apply.

Cleansers or antiseptics (chlorhexidine/Hibiclens, benzoyl peroxide wash, bleach baths, etc.)

Topical medications (topical clindamycin, topical metronidazole, topical steroids, etc.)

Local steroid injections

Antibiotics by mouth (clindamycin, rifampin, doxycycline, metronidazole, cephalexin, etc.)

Hormonal treatments (oral contraceptives, spironolactone/Aldactone, dutasteride, finasteride, etc.)

Steroids by mouth (prednisone, prednisolone, etc.)

Retinoids by mouth (acitretin/Soriatane, isotretinoin/Accutane)

Cyclosporine/Neoral/Sandimmune

Methotrexate

Azathioprine/Imuran

Mycophenolate/Cellcept or mycophenolic acid/Myfortic

Apremilast/Otezla

Intravenous (IV) antibiotics (ertapenem, meropenem, vancomycin, etc.)

TNF inhibitors (adalimumab/Humira, infliximab/Remicade, golimumab/Simponi, certolizumab/Cimzia, etc.)

IL-1 inhibitors (anakinra/Kineret, canakinumab/Ilaris, rilonacept/Arcalyst, etc.)

IL-6 inhibitors (tocilizumab/Actemra, siltuximab/Sylvant, sarilumab/Kevzara)

IL-12/23 inhibitors (ustekinumab/Stelara)

IL-23 inhibitors (guselkumab/Tremfya)

IL-17 inhibitors (secukinumab/Cosentyx, brodalumab/Siliq, ixekizumab/Taltz, etc.)

JAK inhibitors (tofacitinib/Xeljanz, baricitinib/Olumiant, upadacitinib/RinVoq, etc.)

Other ___________

I don't know

None

Were you taking cleansers or antiseptics for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking cleansers or antiseptics for?

Were cleansers or antiseptics stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking topical medications for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking topical medications for?

Were topical medications stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking local steroid injections for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking local steroid injections for?

Were local steroid injections stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking antibiotics by mouth for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking antibiotics by mouth for?

Were antibiotics by mouth stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking hormonal treatments for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking hormonal treatments for?

Were hormonal treatments stopped momentarily or completely when you were diagnosed with COVID-19?

Yes

No

I don't know

Were you taking steroids by mouth for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking steroids by mouth for?

Were steroids by mouth stopped momentarily or completely when you were diagnosed with COVID-19?

Yes

No

I don't know

Were you taking retinoids by mouth for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking retinoids by mouth for?

Were retinoids by mouth stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking Cyclosporine/Neoral/Sandimmune for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking Cyclosporine/Neoral/Sandimmune for?

Was Cyclosporine/Neoral/Sandimmune stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking Methotrexate for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking Methotrexate for?

Was Methotrexate stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking Azathioprine/Imuran for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking Azathioprine/Imuran for?

Was Azathioprine/Imuran stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking Mycophenolate/Cellcept or mycophenolic acid/Myfortic for your HS.

* must provide value

Yes

No

I don't know

What condition were you taking Mycophenolate/Cellcept or mycophenolic acid/Myfortic for?

Was Mycophenolate/Cellcept or mycophenolic acid/Myfortic stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking Apremilast/Otezla for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking Apremilast/Otezla for?

Was Apremilast/Otezla stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking Intravenous (IV) antibiotics for your HS?

Yes

No

I don't know

What condition were you taking Intravenous (IV) antibiotics for?

Were Intravenous (IV) antibiotics stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking TNF inhibitors for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking TNF inhibitors for?

Were TNF inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking IL-1 inhibitors for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking IL-1 inhibitors for?

Were IL-1 inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking IL-6 inhibitors for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking IL-6 inhibitors for?

Were IL-6 inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking IL-12/23 inhibitors for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking IL-12/23 inhibitors for?

Were IL-12/23 inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking IL-23 inhibitor for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking IL-23 inhibitors for?

Were IL-23 inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking IL-17 inhibitors for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking IL-17 inhibitors for?

Were IL-17 inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Were you taking JAK inhibitors for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking JAK inhibitors for?

Were JAK inhibitors stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

Please specify other treatments.

Were you taking the other treatment for your HS?

* must provide value

Yes

No

I don't know

What condition were you taking other treatment for?

Were other treatments stopped momentarily or completely when you were diagnosed with COVID-19?

* must provide value

Yes

No

I don't know

In the 3 months before your COVID-19 diagnosis, had you taken any of the following other medications? Check all that apply.

Antimalarials (hydroxychloroquine/Plaquenil, chloroquine)

NSAIDS (ibuprofen/Motrin, naproxen, aspirin, etc.)

ACE inhibitor (lisinopril, captopril, enalapril, etc.)

Angiotensin receptor blocker (valsartan, candesartan, losartan, etc.)

PD5 inhibitor (sildenafil/Viagra, tadalafil/Cialis, etc.)

Other: ____________

I don't know

None

Please specify other medications.

Do you have any of the following health conditions? Check all that apply.

Cardiovascular disease (coronary artery disease, congestive heart failure)

Asthma

Interstitial lung disease (e.g. pulmonary fibrosis)

Obstructive lung disease (COPD/asthma)

Other lung disease __________

Obstructive sleep apnea

Chronic renal disease (renal insufficiency or end stage renal disease)

Chronic liver disease

Diabetes

Overweight/Obese

High blood pressure/Hypertension

Cancer, currently undergoing treatment (excluding squamous cell skin cancer and basal cell skin cancer)

Inflammatory bowel disease (Crohns disease, ulcerative colitis)

Inflammatory arthritis (rheumatoid arthritis, spondyloarthritis, psoriatic arthritis, etc)

Lupus

Psoriasis

Pyoderma gangrenosum

Polycystic ovarian syndrome

Down syndrome/Trisomy 21

Current tobacco smoker

Current user of other tobacco products (vaping, e-cigarettes)

Other _________________

I don't know

None

Please specify other lung disease.

Please specify other health conditions.

In what month were you diagnosed?

* must provide value

How was COVID-19 diagnosed? Select one best answer.

* must provide value

I diagnosed myself based on symptoms

A healthcare provider diagnosed me based on my symptoms

A healthcare provider diagnosed me based on positive test results

I don't know

Other ________________

Please specify other diagnosis method.

Why weren't you tested for COVID-19?

* must provide value

Testing was not available in my area

Testing was not recommended by my provider

Testing was performed but was negative

Other _______________

Please describe why you weren't tested for COVID-19.

In what setting was COVID-19 diagnosed? Check all that apply.

Home

Telehealth/telemedicine

A mobile testing site (e.g., drive-thru testing/screening center)

Nursing home or assisted living facility

Outpatient clinic

Emergency department

Inpatient/hospital

I don't know

Other ____________

In what other setting was your COVID-19 diagnosed

What symptoms of COVID-19 did you experience? Check all that apply.

* must provide value

Fever

Chills

Repeated shaking with chills

Fatigue

Irritability/confusion

Sore throat

Cough

Runny or stuffy nose

Shortness of breath

Chest pain

Lack of smell

Lack of taste

Headache

Joint pain

Muscle aches/pain

Nausea/vomiting

Diarrhea

Rash

Red or purple, painful, swollen toes/feet or hands ("COVID toes")

I don't know

Other______________

None

Please specify other symptoms.

Have you received one of the COVID-19 vaccines?

Yes, I received at least one COVID-19 vaccine dose

No, but I plan to receive the COVID-19 vaccine

No, and I DO NOT plan to receive the COVID-19 vaccine

I am unsure / I don't remember

Which COVID-19 vaccine did you receive?

Moderna

Pfizer/BioNtech

AstraZeneca/Oxford

Johnson and Johnson

Novavax

CureVac

Medicago

I don't know

Other

Describe the "other" reason indicated above.

When did you receive your 2nd dose?

When did you receive your 1st dose?

Did you receive a booster or third dose of COVID-19 vaccine?

Yes

No

I don't know / I don't remember

Which COVID-19 vaccine booster or third dose did you receive?

Moderna

Pfizer/BioNtech

AstraZeneca/Oxford

Johnson and Johnson

Novavax

CureVac

Medicago

I don't know

Other

Describe the "other" reason indicated above.

Did you have any of the following exposures in the 14 days prior to your COVID-19 symptoms? Check all that apply.

* must provide value

Travel to an area with documented cases of COVID-19 infection

Close contact with a confirmed or probable case of COVID-19 infection

Presence in a healthcare facility where COVID-19 infections were being cared for

None of the above

I don't know

Other ___________

Please specify other exposure.

What was your pregnancy status at the time of COVID-19 diagnosis? Select one best answer.

Not pregnant

Pregnant (Due date or gestational age)

Postpartum < 6 weeks

Not applicable

Have you informed the healthcare provider who primarily cares for your HS about your COVID-19 diagnosis?

* must provide value

Yes, by phone

Yes, by email/patient portal

Yes, by telehealth/telemedicine/video visit

Yes, by clinic or hospital visit

No, I have not been able to communicate with my HS healthcare provider

No, I have not needed to communicate with my HS healthcare provider

Other _________________

Please describe other means of communication you have used to inform the healthcare provider who cares for your HS about your COVID-19 diagnosis.

Have you received any of the following medications to treat COVID-19 illness? Check all that apply.

* must provide value

I did not receive any treatment for COVID-19 infection

Oxygen

Azithromycin

Anti-virals (Remdesivir, Oseltamivir, Lopinavir-ritonavir)

Anti-malarials (e.g. chloroquine, hydroxychloroquine)

IL-6 inhibitors (e.g. tocilizumab, sarilumab, siltuximab)

Bevacizumab/Avastin

JAK inhibitors (e.g. tofacitinib, baricitinib, upadacitinib)

Serpin inhibitors

Ciclesonide

Colchicine

Steroids (prednisone, methylprednisone)

IVIG

Plasma from recovered patients

I don't know

Other _______________

Please specify other medications used to treat COVID-19 illness.

Has your COVID-19 illness resolved at the time of taking this survey? Select one best answer.

* must provide value

Yes

No

I don't know

The patient is deceased

Approximately how many days did you have COVID-19 symptoms, from the first day your symptoms started until you had no symptoms at all?

* must provide value

Approximately how many days ago did your COVID-19 symptoms start?

* must provide value

What was the approximate number of days between when the patient's COVID-19 symptoms first started and the patient died?

* must provide value

Where was your COVID-19 illness treated? Check all that apply.

* must provide value

I was treated at home

I was treated in the doctor's office

I was treated in the emergency department/urgent care clinic

I was treated in the hospital

I was treated in a field hospital

I don't know

Other ____________

Please specify other location where COVID-19 illness was treated.

What kind of assistance did you need during your COVID-19 illness? Check all that apply.

* must provide value

I did not need assistance as I did not have difficulty performing daily activities (eating, bathing, dressing)

I needed help performing daily activities (eating, bathing, dressing)

I needed oxygen

I needed a breathing tube/ventilator

I don't know

Other _____________

Please specify other assistance needed during your COVID-19 illness.

What serious events, if any, happened during your COVID-19 illness? Check all that apply.

* must provide value

No serious events

Difficulty breathing or Acute Respiratory Distress Syndrome (ARDS)

Blood infection or sepsis

Heart attack or heart failure

Stroke

A separate and concurrent second infection (e.g. the flu)

HS flare

Death

Unknown

Other ____________

Please specify other serious events that occurred during your COVID-19 illness.

Have you entered information about your COVID-19 diagnosis into any other registry?

Yes

No

If so, what is the name of the registry?

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.