Integration of Patient Reported Outcomes Measures Into Pain Management Practices for Patients With Hemophilia

More than 100 million people in the United States suffer from pain each year, at an estimated cost of $600 billion for pain treatments and lost productivity. 1) Deaths due to opioid pain medications are rising at an alarming rate. 2) Patients with hemophilia are particularly afflicted by pain, with more than half of adults and nearly 10% of children experiencing chronic pain, either constant, episodic, or both. 3,4) Despite pain’s negative and often disabling impact, our current system for providing care to these patients is failing: up to half of hemophilia patients with pain report their pain is not well controlled. 5,6) In addition, pain remains an essential clinical marker for bleeding episodes in both pediatric and adult patients with hemophilia, often serving as a direct proxy measure of bleeding episodes. Although pain is often used as a primary measure of the efficacy of therapeutic interventions, we do an inadequate job of assessing, documenting, and following pain and its impact on patients’ well-being. 7) This shortcoming is largely due to lack of practical, well-validated, self-report measurement tools for pain in patients with hemophilia. It is not known whether incorporating patient-reported measures of pain into the clinical care of patients with hemophilia will affect health-related outcomes that matter to our patients.

Principal Investigator: Tyler Buckner, PhD
Funder: National Hemophilia Foundation (Clinical Fellowship Program)
Time Period: 07/01/13-06/30/15