192 Chapter 7 demonstrate lower floor and ceiling effects. With the use of generic PROMIS pediatric measures as used in our study, a leap can be made towards worldwide standardization of PROM administration, realizing comparisons between patient populations, the general population, patients from other disease groups and other health care settings [23]. Acknowledgements We would like to thank all participants in this study. In addition, we acknowledge prof. dr. Caroline Terwee for her help in interpreting the results. Funding This study was funded with an unrestricted research grant from Pfizer. Conflicts of Interest MAJL and LH are members of the Dutch-Flemish PROMIS group. SCG received an unrestricted research grant from Sobi. The other authors have no conflict of interest regarding this work/project. Ethics Approval The study was approved by the Medical Ethic Research board from all participating centers. All procedures performed in this study were in accordance with the ethical standards of the international and/or national research committee (Medical Ethics Committee of the Amsterdam UMC – W19_349 # 21.111) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Patient Consent Informed consent was provided by all patients for the use of their data for this study. Keywords feasibility studies, hemophilia, patient-reported outcome measures, psychometrics Essentials • This study investigates the Patient Reported Outcomes Measurement Information System (PROMIS). • This is a multicenter study in 76 Dutch children with hemophilia. • The PROMIS pediatric measures are feasible to use for boys with hemophilia. • The PROMIS pediatric measures are valid alternatives to the well-known legacy instruments.
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