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

Abstract

Introduction and Aim The British Columbia Adult Haemophilia Team recently adopted a patient‐centred care approach. The team presented visual information on an individual's pharmacokinetic profile and bleed history and encouraged patients to participate in treatment decisions. This qualitative study explored how this approach changed patients’ understanding of haemophilia and how it facilitated them to make treatment decisions. Methods We interviewed 18 males with mild, moderate or severe haemophilia, using a convenience sample from the adult haemophilia clinic at St. Paul's hospital in Vancouver, Canada. Interviews were recorded and transcribed verbatim and analyzed using descriptive content analysis. Results Most participants reported that reviewing visual information with the Clinic Team helped them in their communication with their care providers during their annual review clinic appointment. Despite this improved communication, for some the most important feature of their treatment was that they had switched from on‐demand treatment to prophylactic treatment in recent years and were able to prevent bleeds. Almost half of the participants reported that the visual information presented increased their understanding of haemophilia and the pharmacokinetics of coagulation factor. Three patients improved their treatment adherence or had changed their prophylaxis schedules based on this. Most participants felt that they were involved in decision‐making about their treatment schedule, which they appreciated. On the other hand, two participants thought the Clinic Team should make these decisions. Conclusion Participants perceived the patient‐centred prophylaxis approach helpful because it enhanced communication with the Clinic Team, increased their understanding of haemophilia and pharmacokinetics of coagulation factor and facilitated treatment decisions.

Patients’ Perception of the Impact of Innovation on Hemophilia Care Management Organization: A Qualitative Study Protocol (INNOVHEMO Study)

“… 45 , 46 Another study underlined the importance for patients to communicate with a clinical team from an expert center in hemophilia to implement a new patient-centered care approach. 47 This confirms the relevance to explore patient perceptions regarding the impact of new therapies on care organization. This approach could help identify risks of rupture in the patient care pathway and be useful to patients, caregivers and healthcare teams along with new actors involved in the care pathway.…”

Diagnosis and treatment of chronic synovitis in patients with haemophilia: consensus statements from the Italian Association of Haemophilia Centres

“…physiatrist, physiotherapist, orthopaedic surgeon, etc. ), allowing a synergic interaction of different health providers focused on a patient‐centred care approach, customized according to the stage of the disease 65 . Therefore, the need of consultation with an experienced physiotherapist, for PwH affected by chronic synovitis, was advised by the panel (Table III).…”

“…), allowing a synergic interaction of different health providers focused on a patient‐centred care approach, customized according to the stage of the disease. 65 Therefore, the need of consultation with an experienced physiotherapist, for PwH affected by chronic synovitis, was advised by the panel (Table III ). Statement 25: All physiotherapeutic treatments should be performed after clotting concentrate replacement therapy (75% agreement) …”

“…), allowing a synergic interaction of different health providers focused on a patient-centred care approach, customized according to the stage of the disease. 65 Therefore, the need of consultation with an experienced physiotherapist, for PwH affected by chronic synovitis, was advised by the panel (Table III). Although the use of a prophylactic clotting factor replacement could be reasonable to perform the rehabilitation programme at adequate factor plasma levels, no data or evidence are available in order to validate the need of replacement therapy before a physiotherapeutic treatment.…”

Haemophilia in France: Modelisation of the Clinical Pathway for Patients

“…Certainly, the World Federation of Haemophilia recommends that patients with haemophilia be managed in a specialized comprehensive care centre [ 34 ]. However, sharing best practices with other healthcare professionals external to hospitals allows for better patient-centred approaches, and improved adherence and health outcomes [ 35 ]. Today, individuals with haemophilia can look forward to a virtually normal life expectancy and quality of life [ 25 ].…”