Online Survey of Pediatric Patients with Vitiligo

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.

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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. 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

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

Male

Female

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* 5. How do you describe your child?

African-American

Hispanic

Caucasian

Indian

Asian

Southeast Asian

Native American/Pacific Alaskan

Other (please specify)

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* 6. Has your child been diagnosed with vitiligo (vitiligo vulgaris)
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 was your child's birthweight (please indicate if pounds or kilograms)?

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

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

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

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

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

Everyday

Once a week

Once a month

Once a year

Once in a blue moon

Never

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* 15. Has your child ever had a blistering sunburn?

Yes

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

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

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* 18. How long has your child had vitiligo?

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

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

WINTER

SPRING

SUMMER

FALL

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* 21. PLEASE ANSWER THE NEXT QUESTION INSTEAD

	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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* 22. On which parts of the body is your child's 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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* 23. On what part of your body did you first notice your child's vitiligo?

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

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

Yes

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

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

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

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

YES

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

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

Yes

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

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

YES

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* 35. If you answered yes to questions 30, 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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* 36. If you answered yes to question 34, how recent was the last physician interaction where the doctor said there was no therapy ?

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* 37. PLEASE ANSWER THE NEXT QUESTION INSTEAD

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

Yes

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

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* 41. Is your child lactose intolerant?

Yes

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* 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)?

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* 43. PLEASE ANSWER THE NEXT QUESTION INSTEAD

	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

Other (please specify)

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* 44. Please answer YES if your child has 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 the last question, please indicate how old your child was when they had each infection (years)?

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

Never

Infant

Childhood

Teenager

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* 47. How severe was your child's acne?

Mild

Moderate

Severe

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* 48. Was your child ever diagnosed with cystic acne?

Yes

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* 49. PLEASE ANSWER THE NEXT QUESTION INSTEAD

	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. Please indicate if your child has 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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* 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?

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

Yes

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* 53. PLEASE ANSWER THE NEXT QUESTION INSTEAD

	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

Other (please specify)

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

	Yes	No
Thyroid (Autoimmune)	Thyroid (Autoimmune) Yes	Thyroid (Autoimmune) No
Ulcerative colitis	Ulcerative colitis Yes	Ulcerative colitis No
Chron's disease	Chron's disease Yes	Chron'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
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

Other (please specify)

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* 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)

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

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* 56. PLEASE ANSWER THE NEXT QUESTION INSTEAD

	Yes	No
Early Hair Greying	Early Hair Greying Yes	Early Hair Greying 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

Other (please specify)

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

	Yes	No
Early Hair Greying	Early Hair Greying Yes	Early Hair Greying 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
Chron's disease	Chron's disease Yes	Chron's disease No
Celiac disease	Celiac disease Yes	Celiac disease No
Psoriasis	Psoriasis Yes	Psoriasis No
Chronic urticaria (hives)	Chronic urticaria (hives) Yes	Chronic urticaria (hives) No
Sarcoidosis	Sarcoidosis Yes	Sarcoidosis No

Other (please specify)

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

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* 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

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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* 60. Which treatment did you find most effective?

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* 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.)?

Yes

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* 62. If yes, what had occurred?

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

Yes

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

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

Yes

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* 66. If yes, whom had you lost?

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* 67. You will now be asked questions regarding your child's 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.

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* 2. What is today's date?

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* 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

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

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* 5. How do you describe your child?

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* 6. Has your child been diagnosed with vitiligo (vitiligo vulgaris) 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 was your child's birthweight (please indicate if pounds or kilograms)?

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

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

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

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

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

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* 15. Has your child ever had a blistering sunburn?

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

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

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* 18. How long has your child had vitiligo?

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

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

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* 21. PLEASE ANSWER THE NEXT QUESTION INSTEAD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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* 37. PLEASE ANSWER THE NEXT QUESTION INSTEAD

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

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

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

* 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

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