Table 7 Final validated version of the IP Family Burden questionnaire

2

Have you noticed family tension due to your child’s incontinentia pigmenti?

3

Have you noticed marital problems due to your child’s incontinentia pigmenti?

4

Have you been embarrassed by the glances of others due to his/her incontinentia pigmenti?

5

Due to your child’s incontinentia pigmenti, have you felt the need to keep to yourself?

6

Have you experienced a feeling of guilt due to your child’s incontinentia pigmenti?

7

Have you been forced to reconsider your future plans because of your child’s incontinentia pigmenti?

8

Have you ever hesitated to buy any medication that is not covered by your insurance?

9

Have you had to give up dental care due to your child’s incontinentia pigmenti?

10

Have you behaved in a neglectful way toward your other children because of your child’s incontinentia pigmenti?

11

Have you been distracted at work because of your child’s incontinentia pigmenti?

12

Have you needed to miss work to take your child to the doctor?

13

Have you had to stop working due to your child’s incontintentia pigmenti?

14

Do you think you have “overprotected” your child due to his/her incontintentia pigmenti?

15

Has your child’s incontintentia pigmenti upset your daily life?

16

Has facing the required care support (psychologists, orthoptics, psychomotor therapy) made you feel mentally drained?

17

Does the care that you have to give tire you out?

18

Have you been hurt by the teasing your children have experienced from other children?

19

Have you ever had the impression that your child’s incontintentia pigmenti is increasingly expensive?

20

Have you had to dedicate a portion of your budget to cover the costs of care for your child?