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 Domains | Items | Domains derived from: | High subscale scores indicate: | Sample mean (SD) from reference samplea,b | Reference sample | ||
|---|---|---|---|---|---|---|---|
| Â | Â | Â | Mothers | Fathers | Sample- All | Â | |
Parent Self-Report | |||||||
 Communication and Information | 2 | QOL-DSD | Better outcome | 74.86 (16.93) | 69.97 (23.15) | – | Alpern et al. (2017)4 |
 Talking to Others | 5 | QOL-DSD | Better outcome | 64.03 (24.52) | 85.55 (16.80) | – | |
 Future Concerns | 7 | QOL-DSD | Better outcome | 55.37 (25.86) | 79.14 (13.71) | – | |
 Medication | 4 | QOL-DSD | Better outcome | 70.39 (28.20) | 49.10 (28.31) | – | |
 Clinic Visit | 4 | QOL-DSD | Better outcome | 72.08 (27.81) | 33.38 (25.80) | – | |
 Surgery | 4 | QOL-DSD | Better outcome | 38.03 (25.12) | 81.10 (24.51) | – | |
 Stigma | 10 | Experiences & Reactions: Parent focused | Poorer outcome | 1.76 (0.63) | 1.56 (0.44) | – | Rolston et al. (2015)5 |
PHQ-4 | 4 | Patient Health Questionnaire-4 | Poorer outcome | – | – | 2.5 (2.8) | Kroenke et al. (2009)19 |
Parent Proxy-Report | |||||||
 Anxiety | 4 | PROMIS | Poorer outcome | – | – | 50 (10) | Irwin et al., (2012)18 |
 Depression | 4 | PROMIS | Poorer outcome | – | – | 50 (10) | |
 Anger | 5 | PROMIS | Poorer outcome | – | – | 50 (10) | |
 Peer Relations | 4 | PROMIS | Better outcome | – | – | 50 (10) | |
 Stigma | 4 | Experiences & Reactions: Child focused | Poorer outcome | 2.28 (0.91) | 2.05 (0.81) | – | Rolston et al. (2015)5 |
 Clinic Visit & Medication | 7 1 | QOL-DSD | Better outcome | 64.98 (24.49) | 78.10 (22.56) | – | Alpern et al. (2017)4 |