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

Abstract

BackgroundThe 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.MethodsA 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.ResultsAnalysis 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.LimitationsUsing the current methodology, it is not possible to demonstrate a causal link between specific team processes and improved bleeding rates in patients.ConclusionThrough 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.

Patient‐centred care in haemophilia: Patient perspectives on visualization and participation in decision‐making

“…8,10 Research suggests that patient-centred care may positively affect patients' disease management skills, which has been shown to improve adherence and health outcomes in a range of conditions. 13 Therefore, the Clinic Team piloted a new patient-centred 'prophylaxis clinic' approach in order to improve patient engagement, individualize prophylaxis regimes and improve health outcomes. Also, some with severe haemophilia started long-term prophylaxis within the past 5-10 years.…”

Patient powered prophylaxis: A 12‐month study of individualized prophylaxis in adults with severe haemophilia A

“…The individualized prophylaxis plan was established by the patient in collaboration with the interdisciplinary haemophilia team, with the overarching goal to maximize patient autonomy (Figure ). Initially, the team focused on active patient engagement using motivational interviewing techniques, which included eliciting the patient's values and experiences with bleeds and arthropathy, current and ideal physical activity, chronic pain, functional level, lifestyle and vocational issues . Patients were encouraged to take an active role in designing and evaluating their prophylaxis with support from clinicians.…”

“…Initially, the team focused on active patient engagement using motivational interviewing techniques, which included eliciting the patient's values and experiences with bleeds and arthropathy, current and ideal physical activity, chronic pain, functional level, lifestyle and vocational issues. 11 Patients were encouraged to take an active role in designing and evaluating their prophylaxis with support from clinicians. FVIII trough and/or pharmacokinetics evaluations were not mandated as part of the study, but were performed upon clinicians' and patients' discretion.…”

Clinical practice of personalized prophylaxis in hemophilia: Illustrations of experiences and benefits from two continents

“…Through actively supporting patient autonomy in all aspects of decisions related to hemophilia management, the British Columbia Prophylaxis Clinic approach de‐emphasizes “adherence” as the primary goal. Instead of the traditional clinician focus on endpoints such as the annualized bleed rate (ABR), the Clinic focuses on a prophylaxis plan that is codesigned by the patient and aligned with his priorities . Adoption of this comprehensive team approach has been shown to reduce the ABR and improve patients' health‐related quality of life, independent of adherence to the prescribed prophylactic regimen …”

“…Instead of the traditional clinician focus on endpoints such as the annualized bleed rate (ABR), the Clinic focuses on a prophylaxis plan that is codesigned by the patient and aligned with his priorities. 5 Adoption of this comprehensive team approach has been shown to reduce the ABR and improve patients' health-related quality of life, independent of adherence to the prescribed prophylactic regimen. 6 This patient was determined to be as physically active as possible to meet his goals, despite continuous pain.…”