Instrument to quantitatively measure distress associated with hemophilia and its management.
- Concise, easy to score, and multi-factorial test.
- Consistent test-retest reliability.
- Promotes improved patient health outcomes.
In the US, approximately 400 babies per year are born with hemophilia and there are currently approximately 20,000 people living with some form of the disease. According to the National Hemophilia Foundation, over 75% of the world-wide population having hemophilia receive inadequate or no treatment for this condition. Psycho-social and physical stress significantly increases mortality in both the general population and among people with chronic diseases. Current instruments to illustrate and quantify life distressing events do not capture difficulties unique to persons suffering with hemophilia. Instruments currently available to assess hemophilia-specific health-related quality are either outdated or are cumbersome to score in a real-world clinical setting.
This invention identifies 4 domains that contribute to hemophilia-related distress, including hemophilia-management concerns, financial concerns, perceived self-efficacy and daily function concerns. It consists of 24 questions each answered on a 6-point scale (never to always). The total score ranges from 0 to 120 points. The inventors' Hemophilia-Related Distress Questionnaire (HRDq) provides a metric to identify key factors that contribute to hemophilia-related distress. HRDq may facilitate patient-centered care and achieve the goal of improving health outcomes in a clinical setting.
Hemophilia-Related Distress Questionnaire is developed and available for license.