117 Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS 4 Steps for PROMIS adoption and implementation 1. Translation and cultural adoption Adults Terwee et al. (2014) • 17 item banks Children Haverman et al. (2016) • 9 item banks 2. Validation in general population Adults Terwee et al. (2019) • Item bank Ability to Participate in Social Roles and Activities • Item bank Satisfaction with Social Roles and Activities Children Luijten et al. (2021) • Item bank Peer Relationships 3. Validation in hemophilia Adults Kuijlaars et al. (2021) • 7 PROMIS CATs • 2 Short Forms van Balen et al. (2021) • PROMIS Profile-29 Young adults Heesterbeek et al. (2022) • Short Form Anxiety • Short Form Depression Children Teela et al. (ongoing) • 7 PROMIS CATs • Fixed Scale Global Health 4. Validation in other bleeding disorders Adults van Hoorn et al. (ongoing) • 7 PROMIS CATs • Fixed Scale Global Health Children van Hoorn et al. (ongoing) • 7 PROMIS CATs • Fixed Scale Global Health Figure 1: Steps for PROMIS adoption and implementation. Abbreviations: PROMIS, Patient-Reported Outcomes Measurement Information System; CAT, Computer Adaptive Testing.
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