Simon Fletcher: The Hidden Burden of Non-Severe Haemophilia
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 Bleeding Disorders: Care and Practice, adding:
“The Paradox of ‘Non-Severe’ Haemophilia (Learning to Live)
Non-severe doesn’t mean no burden.
Our new qualitative paper from the Learning to Live study asks why people with milder haemophilia, including those whose treatment has converted a severe phenotype to a mild one, so often fall through the gaps in care.
Built from 44 in-depth interviews with men aged 16–76 (15 mild, 10 moderate, 11 severe, and 8 who had received gene therapy), analysed using a grounded theory-informed approach.
One overarching theme, Ability vs. Disability, running through five tensions: Acceptance vs. Rejection, Benefits vs. Burdens, Control vs. Uncertainty, Freedom vs. Constraint, and the Future vs. the Past.
The paradox in participants’ own words: haemophilia was ‘life-inconveniencing’ rather than ‘life-threatening,’ yet never far from mind.
As one put it: ‘It would be a great thing to get a haemophilia-free mindset, but that doesn’t change my life and it doesn’t change the risks.’
What it means for care: people with non-severe haemophilia report quality-of-life impacts similar to those with severe disease, particularly during bleeds, but still face real disparities such as delayed diagnosis, no self-treatment, and limited access to prophylaxis.
Self-infusion and home treatment should be available at every severity.
Bleed assessment and follow-up should not depend on the original diagnosis, and the mixed messaging around activity restrictions needs to stop.
With thanks to my co-authors Kathryn Jenner and Kate Khair, and to every participant who shared their experience.
Title: The Paradox of ‘Non-Severe’ Haemophilia: Qualitative Analysis of Treatment Disparities and Quality of Life Impacts from the Learning to Live Study
Authors: Simon Fletcher, Kathryn Jenner , Kate Khair
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