Simon Fletcher: The Unmet Burden of Factor VII Deficiency
Simon Fletcher, Research Assistant at University of Oxford, shared a post on LinkedIn about a recent article he and his colleagues co-authored, published in Haemophilia, adding:
“Living with Factor VII Deficiency.
Factor VII deficiency (FVIID) is one of the rarest inherited bleeding disorders — roughly 1 in 300,000 — and one of the most overlooked.
While haemophilia care has been transformed by extended half-life factors, rebalancing agents and gene therapy, people with FVIID are still reliant on short-acting replacement that fails to give sustained protection.
I’m pleased to share that our FVIID360 study — with Mattthew Boyton, Sam Bristow and Kate Khair, has been published in Research and Practice in Thrombosis and Haemostasis.
We combined a survey of 100 people (74 adults with FVIID, 26 caregivers) with 24 in-depth interviews to understand what living with FVIID is actually like.
Bleeding is frequent, and falls hardest on women.
56 percent of those surveyed reported at least one bleed a week.
Women reported significantly more bleeding episodes than men (1.65 versus 0.53/week), and quality of life fell as bleeding rose.
A stark gender gap in diagnosis was seen.
Men are diagnosed at a median age of 4 years, while women at 17; a 13-year delay driven in part by the normalisation of heavy menstrual bleeding, which 97 percent of women in the study reported.
A treatment paradox exists. People on prophylaxis reported higher bleed scores than those not on treatment, which may reflect the sub-optimal treatment pharmacokinetics as much as differences in phenotype.
Our interviews highlighted six interrelated themes — bleeding, diagnosis, isolation, menstruation, pregnancy and the future – that together describe a genuine unmet need for improved diagnosis and management, including longer-acting therapies.
FVIID has not had its therapeutic revolution.
This study argues it should.
With thanks to everyone who shared their experience and to my co-authors.”
Title: Living With Factor VII Deficiency—A Mixed Methods Study
Authors: Simon Fletcher, Matthew Boyton, Sam Bristow, Kate Khair
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