Assessing the Real-World Value of Hemophilia Care: How Suitable Are Patient-Centered Outcomes for Hospital-Level Comparisons?

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ID: 323615
2026
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Abstract
BACKGROUND: Hospital-level comparisons of patient-centered outcomes play a central role in value-based healthcare. In hemophilia care, several standardized sets of patient-centered outcomes have been developed to foster the implementation of value-based healthcare; however, their suitability for hospital-level comparisons has not yet been assessed. Therefore, we evaluated the suitability of patient-centered outcomes for hospital-level comparisons in hemophilia care. METHODS: We analyzed data from 807 adults with hemophilia enrolled in the 2019 HiN-6 study in the Netherlands. Twelve patient-centered outcomes were assessed. The suitability of these outcomes for hospital comparisons was evaluated using two criteria: (1) sensitivity to case mix, evaluated by Spearman's rank correlation between case-mix adjusted and unadjusted hospital-level scores; and (2) reliability of between-hospital differences, determined by rankability defined as the proportion of between-hospital variation not attributable to chance. High correlations indicate a minimal case-mix influence, while a high rankability reflects a high degree of reliability. RESULTS: Most patient-centered outcomes were relatively insensitive to case mix (ρ > 0.70). Reliability of hospital differences was generally low (rankability <0.50). Only the annual bleeding rate and annual joint bleeding rate demonstrated moderate reliability with a rankability of 0.55 and 0.58, respectively. CONCLUSION: Most patient-centered outcomes assessed were not suitable for comparing hemophilia care at the hospital level because of low reliability. Among the outcomes evaluated, the annual bleeding rate and annual joint bleeding rate appeared relatively more suitable for such comparisons.
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Authors Diaz M. Prameyllawati, Samantha C Gouw, Hester F. Lingsma, Marjon H Cnossen, Floor C J I Heubel-Moenen, Frank W G Leebeek, Nick van Es, Johanna G van der Bom, Renske MT ten Ham, Martijn A H Oude Voshaar
Journal International journal for quality in health care : journal of the International Society for Quality in Health Care
Year 2026
DOI
10.1093/intqhc/mzag105
URL
https://doi.org/10.1093/intqhc/mzag105
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