Abstract

Providing optimal care to patients with bleeding disorders requires specialized physician, laboratory, pharmacy, nursing, and institutional resources best achieved at Hemophilia Treatment Centers (HTCs). Current systems for managing the care of a resource intensive patient population may be suboptimal. We observed frequent bleeding related hospitalizations and emergency room (ER) visits in patients with bleeding disorders treated at our HTC that could have been potentially prevented by changes in outpatient care delivery. We initiated a prospective quality improvement (QI) project to improve care delivery and to reduce preventable bleeding related hospitalizations and ER visits for adult patients treated at our HTC. The interventions targeted patient-level and systems-level factors contributing to preventable visits, and barriers to care in our patient population. We compared preventable bleeding related hospitalizations and ER visits, institutional factor cost, use of prophylaxis in severe hemophilia, primary care physician attainment, and patient electronic portal enrollment before and after the QI intervention. In our population of adult patients with bleeding disorders (N=88), the intervention significantly reduced the primary outcome of preventable bleeding hospitalization or ER visit (P=0.0082, Figure), and reduced such visits by 85.4%, meeting the pre-specified criteria for success. Institutional factor acquisition costs to treat preventable bleeding were reduced by 94.5%, from $11,800 to $640 per patient per year; a projected savings of $982,088 yearly. Use of factor prophylaxis in patients with severe hemophilia increased from 58.8% to 100%, attainment of a primary care physician increased from 69.4% to 86.4%, and use of the electronic patient portal increased from 53.2% to 83%; all secondary outcomes met pre-specified criteria of success and were statistically significant. HTC clinic visit attendance was low at 55.2%. The majority of patients (71.6%) had at least one outpatient urgent episode (mean 0.72 episode per year), and 93% had non-urgent management (mean 9.3 episodes per year) occurring outside of a clinic visit. These data demonstrate that concerted outpatient management of patients with bleeding disorders with a quality improvement framework can reduce preventable hospitalization and ER visits. Decreased inpatient utilization resulted in substantial reductions in factor costs at the health system level. The clinical effort required to achieve these results was substantial, and required frequent provider engagement outside of regular clinic visits. The HTC can improve patient outcomes and reduce institutional costs from preventable bleeding episodes by supporting a collaborative quality improvement process led by physician, nursing, and laboratory coagulation experts.

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