Hemophilia Care Beyond Certification: A Pilot Study on Key Performance Indicators and Benchmark Thresholds

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Introduction Hemophilia A and B are rare bleeding disorders caused by deficiencies in factor VIII or IX [ 1 ], leading to severe bleeding [ 2 ] [ 3 ]. Patient outcomes, quality of life, and participation in daily activities are greatly affected by standardized, multimodal, interdisciplinary hemophilia care. Since 2017, guidelines have defined the structural and process quality of Hemophilia treatment centers in German-speaking countries [ 4 ] [ 5 ]. Currently, no standardized system compares treatment outcomes across hemophilia centers or internationally. Method We conducted a literature review, used a digital research assistant and supplemented these data by a survey on performance indicators among German hemophilia care providers to identify five key criteria for treatment outcomes of hemophilic patient care. We measured each dimension and combined them into a weighted KPI score with color-coded thresholds. Results Our literature review identified five criteria. Bleeding control is crucial in hemophilia, as severe bleeding, especially intracerebral, can be life-threatening [ 6 ]. This is especially relevant as the number of physically active patients continues to increase [ 7 ]. Previous studies show recurrent joint bleeding as a key sign of severe hemophilia, leading to damage, chronic pain, lower quality of life, and potential future surgeries. We suggest including the Hemophilia Joint Health Score (HJHS) [ 8 ]. Previous literature shows that adherence to guidelines improves hemophilic outcomes [ 1 ] [ 9 ]. We define the fourth criterion as the percentage of patients with factor levels above guideline-defined thresholds. Additionally, we suggested a net-performance score based on patient satisfaction in areas like emergency availability. Ensuring patients have a good quality of life is a key goal of our therapy. We recommend the Haemo-QoL Index [ 10 ], an quick, and easy-to-use tool suitable for individuals of different ages. Further performance indicators and their rating will be integrated from the survey. Conclusion We introduce a five-dimensional KPI score to evaluate pediatric hemophilic treatment outcomes as a pilot project for benchmarking centers in Germany. The score includes ABR, HJHS, the percentage of patients with factor levels above guideline-defined thresholds, a net performance score, and the Mean Haemo-QoL Index. It helps centers identify care improvement opportunities with a color-coded system. Publication History Article published online: 17 February 2026 © 2026. Thieme. All rights reserved. Georg Thieme Verlag KG Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany

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