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

From: Parents' perception of self-advocacy of children with myositis: an anonymous online survey

Survey Item Patients
N (%)*
P
  ≤ 15.0 years of age > 15.0 years of age  
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
  1. *N = 207 for patients ≤ 15.0 years of age; N = 45 for patients > 15.1 years of age.