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1. Vitiligo Online Survey

Dear Parent:

This survey is a research study designed to gather information regarding childhood vitiligo. Vitiligo is a disorder in which color or pigment is lost in the skin. Parents of children (age 17 years or less) with vitiligo vulgaris that has been diagnosed by a dermatologist can participate. All of the data obtained will be de-identified. This means that none of your child’s 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.

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

* 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.

* 3. What is your child’s age in years and months (e.g. 5 years 3 months)*

*If your child is older than 18 years, please have them complete the adult survey themselves

4. What is your child's sex (Male or Female)?

5. How do you describe your child?

* 6. Has your child been diagnosed with vitiligo (vitiligo vulgaris)
by a doctor?

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

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

9. What was your child's birthweight (please indicate if pounds or kilograms)?

10. What is your child's weight (please indicate if pounds or kilograms)?

11. What is your child's current height (please indicate if inches or centimeters)?

* 12. Where was your child born (please enter city, state and country)?

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

14. How often did you take your child to the beach in the year prior to the occurrence of the vitiligo?

15. Has your child ever had a blistering sunburn?

16. If you answered "yes", about the previous sunburn, please explain when this occurred?

17. Did you breastfeed your child and if so, for how long?

18. How long has your child had vitiligo?

19. When did your child's vitiligo start (SPECIFY MONTH, YEAR)?

20. When did your child's vitiligo first become noticeable (SPECIFY SEASON)?

21. PLEASE ANSWER THE NEXT QUESTION INSTEAD

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

22. On which parts of the body is your child's vitiligo located (PLEASE INDICATE USING A YES OR NO RESPONSE)?

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

23. On what part of your body did you first notice your child's vitiligo?

24. Has your child ever used tooth bleaching products? If so, when?

25. Does your child now or have they used hair bleaches?

26. Please include the years your child used hair dye.

27. Which of the vitiligo locations is most bothersome to you? and which one bothers your child most?

28. Why is the area you specified above the most bothersome? your child?

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

30. Does your child have vitiligo on the genital area?

31. How many doctors in total, including primary care physicians, has your child seen for vitiligo?

32. Did your primary care doctor offer you a prescription or advice to treat your child's vitiligo?

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

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

35. If you answered yes to questions 30, how many doctors have told you there was no therapy?

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

36. If you answered yes to question 34, how recent was the last physician interaction where the doctor said there was no therapy ?

37. PLEASE ANSWER THE NEXT QUESTION INSTEAD

  Yes No
Food Allergies
Seasonal Allergies
Eczema or Atopic Dermatitis
Asthma

38. Does your child have or have they ever had asthma, allergies or eczema?

  Yes No
Food Allergies
Asthma
Seasonal Allergies
Eczema or Atopic Dermatitis

39. Does your child have or have they ever had intermittent abdominal cramping ?

40. If you answered yes to question 37, when did they have the cramping?

41. Is your child lactose intolerant?

42. How many dairy servings does your child eat each day (e.g. glass of milk, cheese slice, yogurt cup, half-cup of cottage cheese)?

43. PLEASE ANSWER THE NEXT QUESTION INSTEAD

  Yes No
Infectious Mononucleosis
Chicken Pox
Infectious Hepatitis

44. Please answer YES if your child has had one of these infectious diseases

  Yes No
Infectious Mononucleosis
Chicken Pox
Infectious Hepatitis
Measles
Mumps
Rubella

45. If you answered yes to the last question, please indicate how old your child was when they had each infection (years)?

46. Did your child have acne at any point of his/her life? (Check all answers that apply)

47. How severe was your child's acne?

48. Was your child ever diagnosed with cystic acne?

49. PLEASE ANSWER THE NEXT QUESTION INSTEAD

  Yes No
Accutane (Isotretinoin)
Allergy Shots

50. Please indicate if your child has taken one of these medical therapies

  Yes No
Accutane (Isotretinoin)
Allergy Shots

51. If you answered yes to THE LAST QUESTION, please indicate the 1. age in years, 2. the number of months and 3. the number of courses of the therapy that your child took?

52. Does your child have any other autoimmune diseases other than vitiligo?

53. PLEASE ANSWER THE NEXT QUESTION INSTEAD

  Yes No
Thyroid (Autoimmune)
Diabetes (Type 1)
Diabetes (Type 2)
Rheumatoid Arthritis
Pernicious Anemia
Lupus
Addison's Disease
Alopecia Areata

54. If you answered yes above, please indicate which of these illnesses your child had or write in under other

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

55. If you answered yes to any of the autoimmune disorders in the last question, please indicate how old your child was when he/she first developed symptoms or leave blank if your child doesn't have them (age in years)

56. PLEASE ANSWER THE NEXT QUESTION INSTEAD

  Yes No
Early Hair Greying
Thyroid (Autoimmune)
Diabetes (Type 1)
Diabetes (Type 2)
Rheumatoid Arthritis
Pernicious Anemia
Lupus
Addison's Disease
Alopecia Areata

57. Do any of the following diseases run in the family?

  Yes No
Early Hair Greying
Thyroid (Autoimmune)
Diabetes (Type 1)
Diabetes (Type 2)
Rheumatoid Arthritis
Pernicious Anemia
Lupus
Addison's Disease
Alopecia Areata
Ulcerative colitis
Chron's disease
Celiac disease
Psoriasis
Chronic urticaria (hives)
Sarcoidosis

58. If you answered yes above, please indicate who had these illnesses?

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

60. Which treatment did you find most effective?

61. Has your child had any stressful life events in the 2 years prior to the onset of vitiligo (e.g. divorce, lost job, etc.)?

62. If yes, what had occurred?

63. Does your child have friends with vitiligo (circle one)?

64. If you answered yes to the above question, when did they first become friends?

65. Had your child lost a loved one within the 2 years prior to developing vitiligo?

66. If yes, whom had you lost?

* 67. You will now be asked questions regarding your child's feelings about vitiligo. Do you wish to participate?

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