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Table 7 Final validated version of the IP Family Burden questionnaire

From: Incontinentia pigmenti burden scale: designing a family burden questionnaire

 Score from 0 to 5
1Have you ever felt that it is unfair when thinking about your child having incontinentia pigmenti? 
2Have you noticed family tension due to your child’s incontinentia pigmenti? 
3Have you noticed marital problems due to your child’s incontinentia pigmenti? 
4Have you been embarrassed by the glances of others due to his/her incontinentia pigmenti? 
5Due to your child’s incontinentia pigmenti, have you felt the need to keep to yourself? 
6Have you experienced a feeling of guilt due to your child’s incontinentia pigmenti? 
7Have you been forced to reconsider your future plans because of your child’s incontinentia pigmenti? 
8Have you ever hesitated to buy any medication that is not covered by your insurance? 
9Have you had to give up dental care due to your child’s incontinentia pigmenti? 
10Have you behaved in a neglectful way toward your other children because of your child’s incontinentia pigmenti? 
11Have you been distracted at work because of your child’s incontinentia pigmenti? 
12Have you needed to miss work to take your child to the doctor? 
13Have you had to stop working due to your child’s incontintentia pigmenti? 
14Do you think you have “overprotected” your child due to his/her incontintentia pigmenti? 
15Has your child’s incontintentia pigmenti upset your daily life? 
16Has facing the required care support (psychologists, orthoptics, psychomotor therapy) made you feel mentally drained? 
17Does the care that you have to give tire you out? 
18Have you been hurt by the teasing your children have experienced from other children? 
19Have you ever had the impression that your child’s incontintentia pigmenti is increasingly expensive? 
20Have you had to dedicate a portion of your budget to cover the costs of care for your child? 
  1. With: 0 = never/not applicable, 1 = rarely, 2 = sometimes, 3 = often, 4 = very often, 5 = constantly