Defining how higher standards of equitable care for von Willebrand disease can be achieved in the UK and Republic of Ireland
Our client is a leader in the development and supply of life-saving medicines for patients with rare diseases.
VWD is the most common bleeding disorder which affects 1% of the global population. Patients with VWD may experience severe bleeding from the nose, gums, intestines, muscles, and joints. Additionally, women may find their menstrual periods last longer than average and experience excessive bleeding after childbirth.
Diagnosis of VWD is complex and although both men and women can be diagnosed with VWD, women are experiencing significant delays to accessing care as abnormal bleeding is often overlooked. Women tend to have to consult a range of HCPs before they receive a diagnosis.
Considering the gender bias which has been observed in VWD diagnosis and care, there is a need to identify the areas where gaps exist within current practice and how they can be addressed to provide the care patients with VWD require more adequately and equitably.
Aim and Approach
Triducive began working on this project during 2021-2022 and together with the client team, designed a modified Delphi approach which aimed to create:
Aligned clinical advocates
A clear ‘call to action’
New inertia to drive change
To achieve this, Triducive then led the following approach:
A multi-disciplinary group of experts from across the health system were facilitated to pinpoint the challenges to optimal care and then define a set of statements that described ‘ideal’ practice. This steering group was represented by experts in VWD (including Haematologists and Nurse Specialists).
A structured survey was developed and disseminated across other UK and ROI-based specialist HCPs with an interest and expertise in VWD. The survey tested the strength of agreement that existed in relation to all the statements developed.
A subsequent facilitated review of the full dataset by the steering group led to the development of a core set of recommendations that reflected the results achieved. These were focused on how detection and management of VWD can be improved to provide equity of care between men and women.
A manuscript capable of peer-reviewed publication was developed and provided as a draft for the steering group to adapt and finalise. Triducive supported the authors to take ownership of the draft and to submit it to Haemophilia journal for peer review.
66 responses achieved from VWD experts across the UK & ROI
8 clear recommendations across the VWD pathway that have the potential to raise the standard of care for patients in the UK and ROI by reducing delays to diagnosis and treatment initiation.
Published in a peer-reviewed journal (Haemophilia) which supports credibility and citation of subsequent materials. The paper has already been noticed and cited by other researchers working in this field
Provided a strong platform for the client team to engage with key healthcare agencies to drive changes to improve the equity of VWD care between men and women.
The client have since worked with Triducive to develop a range of campaign activities based on this published work to drive:
Education & training of non-specialist HCPs to focus on the recognition of bleeding disorders.
Awareness of the need for management of VWD via closer multidisciplinary collaboration.
Updated guidelines to support management & treatment.