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Table 1 PRO questionnaire domains, score representation and reference mean (SD)

From: Parent-reported outcomes in young children with disorders/differences of sex development

Questionnaire DomainsItemsDomains derived from:High subscale scores indicate:Sample mean (SD) from reference samplea,bReference sample
   MothersFathersSample- All 
Parent Self-Report
 Communication and Information2QOL-DSDBetter outcome74.86 (16.93)69.97 (23.15)Alpern et al. (2017)4
 Talking to Others5QOL-DSDBetter outcome64.03 (24.52)85.55 (16.80)
 Future Concerns7QOL-DSDBetter outcome55.37 (25.86)79.14 (13.71)
 Medication4QOL-DSDBetter outcome70.39 (28.20)49.10 (28.31)
 Clinic Visit4QOL-DSDBetter outcome72.08 (27.81)33.38 (25.80)
 Surgery4QOL-DSDBetter outcome38.03 (25.12)81.10 (24.51)
 Stigma10Experiences & Reactions: Parent focusedPoorer outcome1.76 (0.63)1.56 (0.44)Rolston et al. (2015)5
PHQ-44Patient Health Questionnaire-4Poorer outcome2.5 (2.8)Kroenke et al. (2009)19
Parent Proxy-Report
 Anxiety4PROMISPoorer outcome50 (10)Irwin et al., (2012)18
 Depression4PROMISPoorer outcome50 (10)
 Anger5PROMISPoorer outcome50 (10)
 Peer Relations4PROMISBetter outcome50 (10)
 Stigma4Experiences & Reactions: Child focusedPoorer outcome2.28 (0.91)2.05 (0.81)Rolston et al. (2015)5
 Clinic Visit & Medication7
QOL-DSDBetter outcome64.98 (24.49)78.10 (22.56)Alpern et al. (2017)4
  1. aSample mean (SD) from reference data was used to calculate median SDS for each domain [4, 5, 18, 19]. bMean (SD) represents the mean (SD) T score for PROMIS domains