Commentary on Laffan et al expert consensus for equitable care for VWD.

Abstract

In a recent issue of Haemophilia, Laffan et al. report ‘An expert consensus to define how higher standards of equitable care for von Willebrand disease can be achieved in the United Kingdom and Republic of Ireland.’’1 This project aimed to generate recommendations to improve equitable access to care for VWD patients. A modified Delphi approach was used and clear criteria for stopping and consensus were defined. Ultimately, eight recommendations were derived and include four that specifically address standardised and improved history taking about bleeding events, especially heavy menstrual bleeding, as well as additional recommendations focused on care delivery, better evidence for prophylaxis, and equity in terms of time to diagnosis and quality of life assessments. The expert authors are to be applauded for this effort and their focus on gender bias in the bleeding disorder community. A few points raised by this study merit additional discussion. The health care providers included were predominantly Haematologists, with Nurse Specialists as the second most common group; only one Obstetrician was included. Most respondents were from England and Ireland. Notably, a very high level of consensus was achieved after only one round of voting, which while reassuring, is not surprising given the relative homogeneity of the group. VWD patients interact with many parts of the health care system, and as a community, we need to turn our focus outward to other providers if we intend to truly improve the time to diagnosis and care. We also need to consider the specific challenges facing those living in low and middle-income countries, as the solutions must be tailored to the available resources and cultural settings. Certainly, the foundation of change needs to involve rejecting sexist attitudes towards individuals with bleeding disorders and valuing the lived experiences of patients. Along those lines, the patient voice must be included in future efforts directed at improving equitable access to care. We need to listen to patients and patient organizations to understand their priorities and tailor our approaches appropriately. Failure to do so could perpetuate the current state of inequity, no matter how well-meaning the intentions. As an example, the ongoing focus of many national and international organizations on hemophilia (as evidenced by the very names of these organisations) creates a barrier for VWD patients and healthcare providers. Women have been telling us for years that they feel poorly represented within Hemophilia Treatment Centres and by Hemophilia-focused patient organisations.2-4 It is time we listen and act. Of note, the recommendation with the lowest consensus at 80% was ‘Patients should always be involved in treatment options for their VWD’—clearly, there is work left to do to truly achieve patient-centred care. The authors include a detailed discussion of the barriers to care, which are many, especially at the primary care level. Engaging with primary care practitioners (PCP), who are often the first point of contact for someone with bleeding symptoms, seems an additional critical step in creating a functional and integrated system to diagnose and manage these patients. The value of multi-disciplinary clinics has been recognised, but in contrast to these being specialist centred, the inclusion of PCP in these models of care could be considered. Lastly, as highlighted by the authors, the quality of evidence for critical aspects of the care of VWD patients, such as prophylaxis, is poor. Although there are many barriers to performing these studies including the multiple types and subtypes of VWD as well as the numerous bleeding symptoms experienced by patients, the need for high-quality evidence is clear. In the recently published ASH (American Society of Hematology) ISTH (International Society on Thrombosis and Hemostasis) NHF (National Hemophilia Foundation) WFH (World Federation of Hemophilia) VWD Management Guidelines, all 12 recommendations were conditional, due to the lack of high-quality evidence.5 Laffan et al. appropriately identify the need for future studies to further develop the evidence base on which we base management decisions for VWD patients. Paula James receives research funding from Bayer and consultancy fees from Band/Guardian Therapeutics and Star/Vega Therapeutics. Data sharing not applicable to this article as no datasets were generated or analysed during the current study.