Online Adult Vitiligo Questionnaire

1. Vitiligo Online Survey

Dear Patient:

This survey is a research study designed to gather information regarding vitiligo. Vitiligo is a disorder in which color or pigment is lost in the skin. Patients who are 18 years or older who have been diagnosed with vitiligo vulgaris that has been diagnosed by a dermatologist may participate, if they desire to participate. All of the data obtained will be de-identified. This means that none of your personal information will be shared, outside of grouped information regarding all the survey responses.

Study data will be collated and responses will be stored at the Department of Dermatology, St. Luke’s-Roosevelt Hospital Center, 1090 Amsterdam Avenue, Suite 11D, NY, NY 10025.

If you have any questions regarding this study, please contact Dr. Nanette Silverberg at nsilverb@chpnet.org or call (212) 523-3888

For participants in the survey/ questionnaire:

Please complete this survey to the best of your ability. If you are unable or do not wish to answer any question, please leave the response area blank. Complete only the questions which you are comfortable completing. DO NOT write your full name, address or any other personal information other than that requested..

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* 1. Please give us your initials so that we avoid double recording of responses. If you have been a special subject number from another survey, please write that in here.

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* 2. What is today's date?

	Month	Day	Year
Please Scroll Down to Find the Day, Month and Year	Please Scroll Down to Find the Day, Month and Year Month menu	Please Scroll Down to Find the Day, Month and Year Day menu	Please Scroll Down to Find the Day, Month and Year Year menu

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* 3. 1. What is your age?* (please write how old you are in years and months, e.g.21 years 3 months)

* (If you are under 18 years of age have your parent complete the child survey with you)

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* 4. What is your sex?

Male

Female

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* 5. How do you describe yourself?

African-American

Hispanic

Caucasian

Indian

Asian

Southeast Asian

Native American/Pacific Alaskan

Other (please specify)

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* 6. 1.Have you ever been diagnosed with vitiligo by a doctor?

Yes

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* 7. Does the vitiligo affect both sides of the body?

Yes

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* 8. How much body surface area does the vitiligo affect?

1-25%

26-50%

51-75%

76-99%

100% of the body

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* 9. What is your weight (please indicate if pounds or kilograms)?

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* 10. What is your current height (please indicate if inches or centimeters)?

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* 11. Where were you born (please enter city, state and country)?

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* 12. Where do you currently live (please enter city, state and country)?

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* 13. Where did you grow up for the first ten years of your life? (Please indicate city, state and country)

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* 14. How often did you go to the beach as a child?

Everyday

Once a week

Once a month

Once a year

Once in a blue moon

Never

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* 15. Did you ever have a blistering sunburn?

Yes

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* 16. If you answered "yes", that you had a previous sunburn, please explain when this occurred?

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* 17. For women: Have you ever breastfed?

Yes

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* 18. If you have breastfed- How long did you breastfeed? Please answer in years and months

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* 19. What dates did you breastfeed (month/ year of start - month/ year of completion)?

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* 20. How long did/do you have vitiligo?

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* 21. How old were you when your vitiligo started (age in years)?

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* 22. When did your vitiligo start (SPECIFY SEASON)?

WINTER

SPRING

SUMMER

FALL

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* 23. On which parts of the body is your vitiligo located (PLEASE INDICATE USING A YES OR NO RESPONSE)?

	YES	NO
Scalp	Scalp YES	Scalp NO
Grey Hair	Grey Hair YES	Grey Hair NO
Eyelids	Eyelids YES	Eyelids NO
Lips	Lips YES	Lips NO
In the Mouth	In the Mouth YES	In the Mouth NO
Chest	Chest YES	Chest NO
Stomach	Stomach YES	Stomach NO
Back	Back YES	Back NO
Underarms	Underarms YES	Underarms NO
Arms	Arms YES	Arms NO
Elbows	Elbows YES	Elbows NO
Wrists	Wrists YES	Wrists NO
Hands	Hands YES	Hands NO
Fingers	Fingers YES	Fingers NO
Hips	Hips YES	Hips NO
Genitals	Genitals YES	Genitals NO
Buttocks	Buttocks YES	Buttocks NO
Legs	Legs YES	Legs NO
Knees	Knees YES	Knees NO
Ankles	Ankles YES	Ankles NO
Feet	Feet YES	Feet NO
Toes	Toes YES	Toes NO

Other (please specify)

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* 24. On what part of your body did you first notice your vitiligo?

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* 25. Have you ever used tooth bleaching products? If so, when?

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* 26. Do you now or have you used hair bleaches?

Yes

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* 27. Please include the years you used hair dye.

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* 28. Which of the vitiligo locations is most bothersome to you?

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* 29. Why is the area you specified above the most bothersome?

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* 30. Which location of vitiligo lesions gets the most comments from the public (answer none if the areas are covered by clothing)?

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* 31. Do you have vitiligo on your genital area?

YES

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* 32. Has genital vitiligo affected your sexual relationships?

YES

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* 33. How many doctors in total, including primary care physicians, have you seen for vitiligo?

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* 34. Did your primary care doctor offer you a prescription or advice to treat your vitiligo?

Yes

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* 35. If you answered yes to the above, which medication or what advice was prescribed?

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* 36. Has any doctor ever told you there is no therapy for vitiligo?

YES

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* 37. If you answered yes to questions 35, how many doctors have told you there was no therapy?

	Pediatrician	Internist	Dermatologist	Other Doctor
0	0 Pediatrician	0 Internist	0 Dermatologist	0 Other Doctor
1	1 Pediatrician	1 Internist	1 Dermatologist	1 Other Doctor
2	2 Pediatrician	2 Internist	2 Dermatologist	2 Other Doctor
3	3 Pediatrician	3 Internist	3 Dermatologist	3 Other Doctor
4	4 Pediatrician	4 Internist	4 Dermatologist	4 Other Doctor
5	5 Pediatrician	5 Internist	5 Dermatologist	5 Other Doctor
6	6 Pediatrician	6 Internist	6 Dermatologist	6 Other Doctor
Other	Other Pediatrician	Other Internist	Other Dermatologist	Other Other Doctor

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* 38. If you answered yes to question 35, how recent was the last physician interaction where the doctor said there was no therapy ?

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* 39. Do you have or have you ever had (circle those that apply) asthma, allergies or eczema?

	Yes	No
Asthma	Asthma Yes	Asthma No
Eczema or Atopic Dermatitis	Eczema or Atopic Dermatitis Yes	Eczema or Atopic Dermatitis No
Food Allergies	Food Allergies Yes	Food Allergies No
Seasonal Allergies	Seasonal Allergies Yes	Seasonal Allergies No

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* 40. Do you have or have you ever had intermittent abdominal cramping ?

Yes

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* 41. If you answered yes to question 38, when did you have the cramping?

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* 42. Are you lactose intolerant?

Yes

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* 43. How many dairy servings do you eat each day (e.g. glass of milk, cheese slice, yogurt cup, half-cup of cottage cheese)?

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* 44. Please answer YES if you have had one of these infectious diseases

	Yes	No
Infectious Mononucleosis	Infectious Mononucleosis Yes	Infectious Mononucleosis No
Chicken Pox	Chicken Pox Yes	Chicken Pox No
Infectious Hepatitis	Infectious Hepatitis Yes	Infectious Hepatitis No
Measles	Measles Yes	Measles No
Mumps	Mumps Yes	Mumps No
Rubella	Rubella Yes	Rubella No

Other (please specify)

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* 45. If you answered yes to question 42, please specify how old you were when you had each infection (years)?

Infectious mononucleosis

Chickenpox

Infectious hepatitis

Measles

Mumps

Rubella

Other

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* 46. Did you have acne at any point in your life (check all answers that apply)?

Never

Teenager

Adult

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* 47. How severe was your acne?

Mild

Moderate

Severe

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* 48. Were you ever diagnosed with cystic acne?

Yes

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* 49. Please indicate if you've taken one of these medical therapies

	Yes	No
Accutane (Isotretinoin)	Accutane (Isotretinoin) Yes	Accutane (Isotretinoin) No
Allergy Shots	Allergy Shots Yes	Allergy Shots No

Other (please specify)

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* 50. If you answered yes to ACCUTANE in question 48, please indicate:

Age in years for when first started taking Accutane:

Number of months taking Accutane:

How many courses of Accutane did you take:

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* 51. If you answered yes to ALLERGY SHOTS in question 48, please indicate:

Age in years for when first started getting Allergy shots?

Number of months getting Allergy shots?

How many courses of Allergy shots did you get?

Which allergens did you get shots for?

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* 52. Do you have any other autoimmune diseases other than vitiligo?

Yes

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* 53. If you answered yes above, please indicate which of these illnesses you had or write in under other

	Yes	No
Thyroid (Autoimmune)	Thyroid (Autoimmune) Yes	Thyroid (Autoimmune) No
Diabetes (Type 1)	Diabetes (Type 1) Yes	Diabetes (Type 1) No
Diabetes (Type 2)	Diabetes (Type 2) Yes	Diabetes (Type 2) No
Rheumatoid Arthritis	Rheumatoid Arthritis Yes	Rheumatoid Arthritis No
Pernicious Anemia	Pernicious Anemia Yes	Pernicious Anemia No
Lupus	Lupus Yes	Lupus No
Addison's Disease	Addison's Disease Yes	Addison's Disease No
Alopecia Areata	Alopecia Areata Yes	Alopecia Areata No
Ulcerative colitis	Ulcerative colitis Yes	Ulcerative colitis No
Crohn's disease	Crohn's disease Yes	Crohn's disease No
Celiac disease	Celiac disease Yes	Celiac disease No
Dermatitis herpetiformis	Dermatitis herpetiformis Yes	Dermatitis herpetiformis No
Multiple sclerosis	Multiple sclerosis Yes	Multiple sclerosis No
Psoriasis	Psoriasis Yes	Psoriasis No
Lichen sclerosus	Lichen sclerosus Yes	Lichen sclerosus No
Sjogren's disease	Sjogren's disease Yes	Sjogren's disease No
Sarcoidosis	Sarcoidosis Yes	Sarcoidosis No
Chronic urticaria (hives)	Chronic urticaria (hives) Yes	Chronic urticaria (hives) No

Other (please specify)

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* 54. If you answered yes to any of the autoimmune disorders in question 51, please indicate how old you were when you first developed symptoms or leave blank if you don't have them (age in years)

Thyroid (Autoimmune)

Diabetes (Type 1)

Diabetes (Type 2)

Rheumatoid Arthritis

Pernicious Anemia

Lupus

Addison's Disease

Alopecia Areata

Ulcerative colitis

Crohn's disease

Celiac disease

Dermatitis herpetiformis

Multiple sclerosis

Psoriasis

Lichen sclerosus

Sjogren's disease

Sarcoidosis

Chronic urticaria (hives)

Other

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* 55. Have you tried the following treatments? If you answer yes, please indicate when you took the therapy (year), for how long you used therapy?, if you got color? How much color and where you got color? PLEASE COMPLETE to the best of your ability

Have you tried PUVA (psoralens and UVA)?

Narrowband UVB?

Excimer laser?

Vitamin therapy?

Topical corticosteroids (e.g. hydrocortisone, triamcinolone, clobetasol)?

Oral corticosteroids (e.g. prednisone)?

Tacrolimus (please indicate Protopic(R) 0.03% or 0.1%)?

Pimecrolimus (Elidel(R) 1% cream)?

Calcipotriene (Dovonex®)?

Betamethasone/ Calcipotriene (Taclonex)?

L-phenylalanine?

Placental Extract?

Pseudocatalase?

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* 56. Which treatment did you find most effective?

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* 57. Did you have any stressful life events in the 2 years prior to the onset of vitiligo (e.g. divorce, lost job, etc.)?

Yes

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* 58. If yes, what had occurred?

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* 59. Does your vitiligo get worse or spread after stressful events occur?

Yes

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* 60. Do you have friends with vitiligo (circle one)?

Yes

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* 61. If you answered yes to 59, when did you first become friends?

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* 62. Had a loved one passed away within the 2 years prior to developing vitiligo?

Yes

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* 63. If you answered yes to question 61, please specify who passed away?

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* 64. You will now be asked questions regarding your feelings about vitiligo. Do you wish to participate?

Yes

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* 1. Please give us your initials so that we avoid double recording of responses. If you have been a special subject number from another survey, please write that in here.

Question Title

* 2. What is today's date?

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* 3. 1. What is your age?* (please write how old you are in years and months, e.g.21 years 3 months) * (If you are under 18 years of age have your parent complete the child survey with you)

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* 4. What is your sex?

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* 5. How do you describe yourself?

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* 6. 1.Have you ever been diagnosed with vitiligo by a doctor?

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* 7. Does the vitiligo affect both sides of the body?

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* 8. How much body surface area does the vitiligo affect?

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* 9. What is your weight (please indicate if pounds or kilograms)?

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* 10. What is your current height (please indicate if inches or centimeters)?

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* 11. Where were you born (please enter city, state and country)?

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* 12. Where do you currently live (please enter city, state and country)?

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* 13. Where did you grow up for the first ten years of your life? (Please indicate city, state and country)

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* 14. How often did you go to the beach as a child?

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* 15. Did you ever have a blistering sunburn?

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* 16. If you answered "yes", that you had a previous sunburn, please explain when this occurred?

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* 17. For women: Have you ever breastfed?

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* 18. If you have breastfed- How long did you breastfeed? Please answer in years and months

Question Title

* 19. What dates did you breastfeed (month/ year of start - month/ year of completion)?

Question Title

* 20. How long did/do you have vitiligo?

Question Title

* 21. How old were you when your vitiligo started (age in years)?

Question Title

* 22. When did your vitiligo start (SPECIFY SEASON)?

Question Title

* 23. On which parts of the body is your vitiligo located (PLEASE INDICATE USING A YES OR NO RESPONSE)?

Question Title

* 24. On what part of your body did you first notice your vitiligo?

Question Title

* 25. Have you ever used tooth bleaching products? If so, when?

Question Title

* 26. Do you now or have you used hair bleaches?

Question Title

* 27. Please include the years you used hair dye.

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* 28. Which of the vitiligo locations is most bothersome to you?

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* 29. Why is the area you specified above the most bothersome?

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* 30. Which location of vitiligo lesions gets the most comments from the public (answer none if the areas are covered by clothing)?

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* 31. Do you have vitiligo on your genital area?

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* 32. Has genital vitiligo affected your sexual relationships?

Question Title

* 33. How many doctors in total, including primary care physicians, have you seen for vitiligo?

Question Title

* 34. Did your primary care doctor offer you a prescription or advice to treat your vitiligo?

Question Title

* 35. If you answered yes to the above, which medication or what advice was prescribed?

Question Title

* 36. Has any doctor ever told you there is no therapy for vitiligo?

Question Title

* 37. If you answered yes to questions 35, how many doctors have told you there was no therapy?

Question Title

* 38. If you answered yes to question 35, how recent was the last physician interaction where the doctor said there was no therapy ?

Question Title

* 39. Do you have or have you ever had (circle those that apply) asthma, allergies or eczema?

Question Title

* 40. Do you have or have you ever had intermittent abdominal cramping ?

* 3. 1. What is your age?* (please write how old you are in years and months, e.g.21 years 3 months)

* (If you are under 18 years of age have your parent complete the child survey with you)