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Patients with severe hemophilia (genetic bleeding disorders) are at risk for debilitating bleeds that require emergency transfusion of blood products. Eighty percent of bleeds occur in patients’ joints, resulting in permanent damage such as arthritis and significantly impacting their quality of lives. The disease usually affects men and, without treatment, they usually die in their twenties.

Unless prophylaxis is used to prevent bleeds, people with hemophilia can bleed 30 or more times per year into their joints. Hemophilia care primarily consists of self-administration of intravenous clotting factors at home to prevent bleeds, at an annual cost of $200,000-400,000 per patient.

The Adult Hemophilia Treatment Centre at Providence Health Care decided to improve the quality of care it provides to its patients in BC and the Yukon. The team behind the centre’s To Bleed or Not to Bleed initiative created individualized care plans for hemophilia patients to improve the use blood products prophylactically before a bleed rather than as treatment after a bleed.

In 2013, the team conducted a four-month prospective observational cohort study of 12 patients designed to evaluate individualized prophylactic treatment plans. Each member of the team completed extensive training in Motivational Interviewing, an approach to patient behaviour change based in the idea that giving patients the responsibility to achieve a health goal is most effective. By using Motivational Interviewing the team fostered patients’ intrinsic motivation to avert bleeds, and helped patients discover their own ability to prevent bleeds. During their intervention, the team changed patients’ prophylactic treatment plans from being clinician-driven to being patient-driven.

Tapping into this motivation is important because many clinicians believe that as hemophilia patients age their adherence to prescribed treatment such as prophylaxis declines. All patients have treatment plans to prevent bleeds, however, many do not closely follow these plans resulting in frequently missed treatment doses. Shared decision making builds trust by respecting patient autonomy. Once this relationship was established the team could explore non-traditional dosing schedules (i.e. daily) with the patient and aim to minimize all bleeding events.

In the four months following initiation of the individualized care a reduction in the number of overall bleeds was observed, from 30 to 14, which was statistically and clinically significant. 75% of patients achieved zero joint bleeds while no participant experienced a life-threatening bleed. This reduction in bleeds led to cost savings of more than $26,000 due to less money spent on clotting products as well as fewer calls to the clinic for acute bleed management. Furthermore, patients adhered to their individualized treatment plans better than in the past, using 29% more treatment for prophylaxis, which was closer to the overall amount they had been prescribed prior to individualized prophylaxis.

Individualized treatment plans are now becoming the basis for care management at the centre with the addition of new tools such as pharmacokinetic profiling. Further research is planned to expand the population sample to include all BC and Yukon adult patients with severe hemophilia who have more than three bleeds per year. In addition to improving care for these patients, even more cost savings could be achieved: overall, the annual cost of home intravenous treatment for the centre’s 120 adult patients is approximately $14 million.

The team plans on using its $2,500 sponsorship for knowledge translation, including organizing a webinar for the Hemophilia Program about new methods for individualizing treatment, organizing events for patients to share their experiences in preventing bleeds, and developing a video including young, middle and older men for use in promoting this style of treatment.