Lorynn Teela

193 Psychometrics of the pediatric PROMIS measures in hemophilia References 1. Peyvandi, F., Garagiola, I., & Young, G. (2016). The past and future of haemophilia: diagnosis, treatments, and its complications. The Lancet, 388(10040), 187-197. 2. Boehlen, F., Graf, L., & Berntorp, E. (2014). Outcome measures in haemophilia: a systematic review. [Review]. European Journal of Haematology. Supplementum, 76, 2-15, doi:http://dx.doi.org/10.1111/ejh.12369. 3. Van Vulpen, L., Holstein, K., & Martinoli, C. (2018). Joint disease in haemophilia: Pathophysiology, pain and imaging. Haemophilia, 24, 44-49. 4. Srivastava, A., Santagostino, E., Dougall, A., Kitchen, S., Sutherland, M., Pipe, S. W., et al. (2020). WFH guidelines for the management of hemophilia. Haemophilia, 26, 1-158. 5. Balkaransingh, P., & Young, G. (2018). Novel therapies and current clinical progress in hemophilia A. Therapeutic advances in hematology, 9(2), 49-61. 6. Oldenburg, J., Mahlangu, J. N., Kim, B., Schmitt, C., Callaghan, M. U., Young, G., et al. (2017). Emicizumab prophylaxis in hemophilia A with inhibitors. New England Journal of Medicine, 377(9), 809-818. 7. Shapiro, S., & Makris, M. (2019). Haemophilia and ageing. British journal of haematology, 184(5), 712-720. 8. Versloot, O., Timmer, M. A., de Kleijn, P., Schuuring, M., van Koppenhagen, C. F., van der Net, J., et al. (2020). Sports participation and sports injuries in Dutch boys with haemophilia. Scandinavian journal of medicine & science in sports, 30(7), 1256-1264. 9. Bullinger, M., & von Mackensen, S. (2003). Quality of Life in Children and Families With Bleeding Disorders. J Pediatr Hematol Oncol, 25, 64-67. 10. Kuijlaars, I. A., van der Net, J., Schutgens, R. E., & Fischer, K. (2019). The Paediatric Haemophilia Activities List (pedHAL) in routine assessment: changes over time, child-parent agreement and informative domains. Haemophilia, 25(6), 953-959. 11. Cassis, F. R. M. Y., Querol, F., Iorio, A., & Forsyth, A. (2012). Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia, 18, 101-114. 12. Hughes, T., Brok-Kristensen, M., Gargeya, Y., Lottrup, A. M. W., Larsen, A. B., Torres-Ortuño, A., et al. (2020). “What more can we ask for?”: an ethnographic study of challenges and possibilities for people living with haemophilia. The Journal of Haemophilia Practice, 7(1), 25-36, doi:doi:10.17225/jhp00151. 13. Manco-Johnson, M. J., Warren, B. B., Buckner, T. W., Funk, S. M., & Wang, M. (2021). Outcome measures in haemophilia: beyond ABR (annualized bleeding rate). Haemophilia, 27, 87-95. 14. Weldring, T., & Smith, S. M. (2013). Article commentary: patient-reported outcomes (pros) and patientreported outcome measures (PROMs). Health services insights, 6, HSI. S11093. 15. Heesterbeek, M., Luijten, M., Gouw, S., Limperg, P., Fijnvandraat, K., Coppens, M., et al. (2022). Measuring anxiety and depression in young adult men with haemophilia using PROMIS. Haemophilia: the official journal of the World Federation of Hemophilia, 28(3), e79-e82. 16. Valderas, J. M., Kotzeva, A., Espallargues, M., Guyatt, G., Ferrans, C. E., Halyard, M. Y., et al. (2008). The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature. Quality of Life Research, 17(2), 179-193, doi:doi:10.1007/s11136-007-9295-0. 17. Ishaque, S., Karnon, J., Chen, G., Nair, R., & Salter, A. B. (2019). A systematic review of randomised controlled trials evaluating the use of patient-reported outcome measures (PROMs). Quality of Life Research, 28(3), 567-592. 18. Bele, S., Chugh, A., Mohamed, B., Teela, L., Haverman, L., & Santana, M. J. (2020). Patient-reported Outcome Measures in Routine Pediatric Clinical Care: A Systematic Review. Frontiers in Pediatrics 8, 364, doi:https://doi.org/10.3389/fped.2020.00364. 19. Terwee, C. B., Zuidgeest, M., Vonkeman, H. E., Cella, D., Haverman, L., & Roorda, L. D. (2021). Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS(R). BMC Med Inform Decis Mak, 21(1), 259, doi:10.1186/s12911-021-01624-5. 20. Limperg, P. F., Terwee, C. B., Young, N. L., Price, V. E., Gouw, S. C., Peters, M., et al. (2017). Health-related quality of life questionnaires in individuals with haemophilia: a systematic review of their measurement properties. Haemophilia, 23(4), 13, doi:10.1111/hae.13197. 7

RkJQdWJsaXNoZXIy MTk4NDMw