Table 3 Level of knowledge of the disease, transition-related knowledge, and experience of families, stratified by age of pediatric myositis patients

Does your child have a paying or volunteer job?

5 (2.4)

25 (55.6)

< 0.0001

Is your child responsible for any household chores?

109 (52.7)

37 (82.2)

0.0002

Does your child know her/his doctor's name?

172 (83.1)

45 (100.0)

0.0013

Does your child know where to get her/is doctor's phone number?

59 (28.5)

35 (77.8)

< 0.0001

Does your child make her/his own appointments?

0 (0.0)

9 (20.0)

< 0.0001

Does your child take her/his medications without being reminded?

26 (12.6)

23 (51.1)

< 0.0001

Does your child know the names of the medicine she/he takes?

89 (43.0)

35 (77.8)

< 0.0001

Does your child know what to do to take care of her/himself?

37 (17.9)

34 (75.6)

< 0.0001

Does your child know what changes in her/his health require medical attention?

69 (33.3)

30 (66.7)

< 0.001

Can your child explain her/his disease to her/family or friends?

78 (37.7)

38 (84.4)

< 0.0001

Does your child know how to refill her/his own medications/

15 (7.2)

28 (62.2)

< 0.0001

Does your child see the physician alone?

4 (2.0)

9 (20.0)

< 0.0001

At what age do you believe your child could see the physician alone?

9.1-12.0

9 (4.4)

0 (0.0)

0.3694

12.1-15.0

30 (14.6)

0 (0.0)

0.0038

15.1-18.0

84 (40.8)

11 (27.3)

0.0431

18.1-21.0

70 (34.0)

18 (39.4)

0.4915

> 21.1

13 (6.3)

16 (33.3)

< 0.0001

Has your doctor talked with your child to see a doctor who treats adults?

5 (2.4)

17 (37.80

< 0.0001

Does your child know the name of health insurance she/he currently has?

31 (15.2)

31 (68.9)

< 0.0001

Is there a health care provider who helped you and your child with transition to adult health care provider?

14 (6.9)

10 (22.2)

0.0039

Do you have a portable up-to-date copy of your child's medical records?

76 (37.4)

21 (46.7)

0.3111

Is there a posted policy to see in your pediatric doctor's office states when you are expected to transition?

12 (5.9)

4 (8.9)

0.5

Do you have written plan to moving to adult healthcare?

3 (1.4)

3 (6.7)

0.0720