Joining the patient on the path to customized prophylaxis: one hemophilia team explores the tools of engagement

Abstract

Background: The relationship between hemophilia team interventions and achievement of optimal clinical outcomes remains to be elucidated. The British Columbia Hemophilia Adult Team has previously reported results of a comprehensive approach to individualize prophylaxis that has resulted in substantially reduced bleeding rates. In order to facilitate knowledge exchange and potential replication, it was important to gain a thorough understanding of the team's approach.

Methods: A focus group of the British Columbia Hemophilia Adult Team was conducted to identify specific roles and processes that might be contributing to the prophylaxis regimen outcomes in this clinic. The focus group consisted of two workshops; one to describe the individual and collective roles of the clinic team in providing clinical care and guiding patients toward individualized prophylaxis; and the other to describe the patient journey from initial contact through reaching a successful engagement with the clinic.

Results: Analysis of the results revealed team roles and processes that underpinned a shared decision-making relationship with the patient with a particular focus on supporting the patient's autonomy. Within this relationship, team focus shifts away from "adherence" toward the process whereby patients design and implement prophylaxis regimens resulting in reduction or elimination of bleeding episodes.

Limitations: Using the current methodology, it is not possible to demonstrate a causal link between specific team processes and improved bleeding rates in patients.

Conclusion: Through the active support of patient autonomy in all aspects of decisions related to hemophilia management, the British Columbia Hemophilia Adult Team approach de-emphasizes "adherence" as the primary goal, and focuses on a prophylaxis plan that is customized by the patient and aligned with his priorities. Adoption of this comprehensive team approach facilitates shared goals between the patient and the team that may optimize treatment adherence, but more importantly, reduce bleeding rates.

Keywords: autonomy support; comprehensive care team; individiualized prophylaxis; shared decision-making.

Figure 1

The partnership journey with the patient. Note: The team identified three phases in the partnership journey with the patient: engagement (preparation for first clinic visit), assessment (patient-driven process), and individualization (follow-up and decision-making).

Figure 2

Patient priorities are central to shared decision-making. Note: Shared decision-making is given shape and direction by a central pillar comprising patient priorities, needs, goals, self-assessment, and finally, decisions.