185 Psychometrics of the pediatric PROMIS measures in hemophilia (12 participants). Participants with a moderate form of hemophilia (18.4%) received prophylaxis with factor concentrates (5 participants) or on-demand treatment (in case of a bleed; 9 participants). On-demand treatment was used for all participants with a mild form of hemophilia (35.5%). Table 2. Patient characteristics (N=76) N Mean (SD) Sociodemographic characteristics Age (yrs) 76 13.5 (2.8) N % Age groups 8-12 years 13-17 years 31 45 40.8 59.2 Country of birth parents Both parents born in the Netherlands At least one parent born in foreign country Unknown 62 10 4 81.6 13.1 5.3 Hemophilia characteristics N % Type of hemophilia Hemophilia A Hemophilia B Unknown 66 6 4 86.8 7.9 5.3 Severity of hemophilia Mild (5-50%) Moderate (2-5%) Severe (<1%) Unknown 27 14 31 4 35.5 18.4 40.8 5.3 Type of treatment hemophilia Prophylaxis with factor concentrates Prophylaxis with emicizumab On demand – in case of a bleed Unknown 24 12 36 4 31.5 15.8 47.4 5.3 Inhibitor Current Historically No inhibitor / unknown 0 9 67 0 11.8 88.2 3.2. Reliability & feasibility Table 3 and Table 4 show data on the number of completed items, reliability, and floor and ceiling effects of the PROMIS pediatric measures and legacy instruments, respectively. The reliability of the PROMIS pediatric measures was excellent (>90% 7
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