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Table 1 Participant characteristics

From: Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents’ experiences

Characteristic N %
Child’s diagnosis   
     Spinal muscular atrophy (SMA) 11 73.3
     Metachromatic leukodystrophy (MLD) 4 26.7
Relationship to patient (child)   
     Mother 14 93.3
     Father 1 6.7
  Mean (SD) Minimum–maximum
Parent age 39 (9.26) 31–67 years old
Child age 6 (5.62) 6 months to 21 years old
Time to diagnosis (months) 13.53 (14.3) 0 (Prior to birth)- 48
  N %
Region
     South (Maryland, Virginia, Tennessee, Texas) 6 40.0
     North (New York, Massachusetts) 3 20.0
     Mid-West (Illinois, Michigan, Minnesota) 5 33.3
     West (California) 1 6.7
Insurance type
     Employer sponsored 15 100.0
     Medicaid 6 40.0
     Medicare 1 6.7
     Children’s health insurance plan 2 13.3
     Medical assistance program (state or county) 2 13.3
Education
     High school diploma 1 6.7
     College degree 8 53.3
     Graduate degree 6 40.0
Currently employed
     Yes 11 73.3
     No 4 36.7