Harmonizing patient‐reported outcome measurements in inherited bleeding disorders with PROMIS

HaemophiliaVolume 29, Issue 1 p. 357-361 LETTER TO THE EDITOR Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS Evelien S. van Hoorn, Corresponding Author Evelien S. van Hoorn [email protected] Erasmus MC, Erasmus University Medical Centre Rotterdam, Department of Public Health, Rotterdam, The Netherlands Correspondence E.S. van Hoorn, Erasmus MC, University Medical Centre Rotterdam, Department of Public Health, Dr. Molewaterplein 40, 3015 GD Rotterdam, The Netherlands. Email: [email protected]Search for more papers by this authorLorynn Teela, Lorynn Teela Amsterdam University Medical Centres, University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, Amsterdam, The NetherlandsSearch for more papers by this authorIsolde A. R. Kuijlaars, Isolde A. R. Kuijlaars Centre for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Utrecht, The NetherlandsSearch for more papers by this authorKathelijn Fischer, Kathelijn Fischer Centre for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Utrecht, The NetherlandsSearch for more papers by this authorSamantha C. Gouw, Samantha C. Gouw Amsterdam UMC location University of Amsterdam, Emma Children's Hospital, Paediatric Haematology, Amsterdam, The NetherlandsSearch for more papers by this authorMarjon H. Cnossen, Marjon H. Cnossen Erasmus MC Sophia Children's Hospital, Erasmus University Medical Centre Rotterdam, Department of Paediatric Haematology, The NetherlandsSearch for more papers by this authorLotte Haverman, Lotte Haverman Amsterdam University Medical Centres, University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, Amsterdam, The NetherlandsSearch for more papers by this authorfor SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders, for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disordersSearch for more papers by this author Evelien S. van Hoorn, Corresponding Author Evelien S. van Hoorn [email protected] Erasmus MC, Erasmus University Medical Centre Rotterdam, Department of Public Health, Rotterdam, The Netherlands Correspondence E.S. van Hoorn, Erasmus MC, University Medical Centre Rotterdam, Department of Public Health, Dr. Molewaterplein 40, 3015 GD Rotterdam, The Netherlands. Email: [email protected]Search for more papers by this authorLorynn Teela, Lorynn Teela Amsterdam University Medical Centres, University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, Amsterdam, The NetherlandsSearch for more papers by this authorIsolde A. R. Kuijlaars, Isolde A. R. Kuijlaars Centre for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Utrecht, The NetherlandsSearch for more papers by this authorKathelijn Fischer, Kathelijn Fischer Centre for Benign Haematology, Thrombosis and Haemostasis, Van Creveldkliniek, University Medical Centre Utrecht, Utrecht University, Utrecht, The NetherlandsSearch for more papers by this authorSamantha C. Gouw, Samantha C. Gouw Amsterdam UMC location University of Amsterdam, Emma Children's Hospital, Paediatric Haematology, Amsterdam, The NetherlandsSearch for more papers by this authorMarjon H. Cnossen, Marjon H. Cnossen Erasmus MC Sophia Children's Hospital, Erasmus University Medical Centre Rotterdam, Department of Paediatric Haematology, The NetherlandsSearch for more papers by this authorLotte Haverman, Lotte Haverman Amsterdam University Medical Centres, University of Amsterdam, Emma Children's Hospital, Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam Reproduction and Development, Amsterdam Public Health, Amsterdam, The NetherlandsSearch for more papers by this authorfor SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disorders, for SYMPHONY consortium and Dutch research group for PROMIS implementation in inherited bleeding disordersSearch for more papers by this author First published: 17 November 2022 https://doi.org/10.1111/hae.14694Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL REFERENCES 1Dover S, Blanchette VS, Srivastava A, Fischer K, Abad A, Feldman BM. Clinical outcomes in hemophilia: towards development of a core set of standardized outcome measures for research. Res Pract Thromb Haemost. 2020; 4: 652- 658. https://doi.org/10.1002/rth2.12331 2Limperg PF, Terwee CB, Young NL, et al. Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties. Haemophilia. 2017; 23: 497- 510. https://doi.org/10.1111/hae.13197 3van Balen EC, O'Mahony B, Cnossen MH, et al. Patient-relevant health outcomes for hemophilia care: development of an international standard outcomes set. Res Pract Thromb Haemost. 2021; 5: e12488. https://doi.org/10.1002/rth2.12488 4Iorio A, Skinner MW, Clearfield E, et al, core HEM panel. Core outcome set for gene therapy in haemophilia: results of the coreHEM multistakeholder project. 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Haemophilia. 2022; 28: e79- e82. https://doi.org/10.1111/hae.14534 9van Balen EC, Haverman L, Hassan S, et al. Validation of PROMIS Profile-29 in adults with hemophilia in the Netherlands. J Thromb Haemost. 2021; 19: 2687- 2701. https://doi.org/10.1111/jth.15454 10Kuijlaars IAR, Teela L, van Vulpen LFD, et al. Generic PROMIS item banks in adults with hemophilia for patient-reported outcome assessment: feasibility, measurement properties, and relevance. Res Pract Thromb Haemost. 2021; 5: e12621. https://doi.org/10.1002/rth2.12621 Volume29, Issue1January 2023Pages 357-361 ReferencesRelatedInformation