113 Harmonizing patient-reported outcome measurements in inherited bleeding disorders with PROMIS 4 number of recommended PROMs for different patient groups, especially when patients have multi- or comorbidity, the high number of questions per PROM, as well as varying psychometric properties and scoring methods of PROMs measuring the same domains. 6 To overcome these issues, the Patient-Reported Outcomes Measurement Information System (PROMIS ®) project was initiated by a cooperative group of scientists from several U.S.-based academic institutions and the National Institute of Health 7. The PROMIS project collected, combined and transformed existing PROMs into a new, state-of-the-art assessment system for measuring patient-reported health and well-being of adults and children. PROMIS has created a set of item banks to evaluate and monitor different general domains e.g., physical, mental and social health in both children and adults. PROMIS has several advantages compared to more traditional PROMs, that are based on Classical Test Theory. Firstly, PROMIS is based on Item Response Theory (IRT) which makes it possible to scale items and persons on a single metric, improving the interpretability of the acquired scores. In addition, IRT enables the application of Computer Adaptive Testing (CAT), where the next item presented to the patient depends, based on an algorithm, on the responses to earlier items 7. If, for example, a patient answers that he or she has difficulty walking, the PROMIS CAT will not offer an item about running. CAT therefore lowers the burden of outcome assessment by administrating a limited number of more relevant questions with a higher reliability 7. A second advantage is that PROMIS item banks are generic and can therefore be applied across medical conditions. Important as many patients have comorbidities, especially older patients with inherited bleeding disorders. In addition PROMIS can be used for benchmarking purposes. Moreover, PROMIS is especially suitable for patients with rare diseases, or without diagnoses, who often visit multiple healthcare professionals, as they are generic and reliable, and answers can be used by all involved treatment teams 6. In 2009, the Dutch-Flemish PROMIS group was founded to translate the PROMIS item banks into Netherlands and Flemish (Belgium), to establish reference values for the Dutch and Flemish populations, and to validate and ultimately implement the defined measures. Since then, many generic Dutch PROMIS item banks have been validated across a wide range of medical conditions. Within the field of inherited bleeding disorders, forces were united to start a Dutch research group for PROMIS implementation in inherited bleeding disorders, which consists of a multidisciplinary team of representatives from multiple hemophilia treatment centers in the Netherlands.
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