Mild disorders matter
By Rich Gorman
People whose bleeding disorders are categorised as ‘mild’ (often defined as having between 5% to 40% of usual clotting levels) are often unaware that they have a condition until they experience serious trauma or undergo an operation. Although the impact of ‘mild’ bleeding disorders may be infrequent, it’s just as important for people with mild bleeding disorders to receive regular care and be in routine communication with their haemophilia treatment centre.
Even mild bleeding can have a measurable impact on people’s quality of life. In the Red Flag Study, Doaa Abdelfattah and colleagues showed that follow-up visits by people with a mild bleeding disorder are often missed. Many people with a mild disorder become ‘lost’ and could be experiencing bleeding events that go unreported and untreated.
Lost to follow-up
Doaa and her colleagues set out to explore the experiences of ‘lost-to-follow-up’ patients and evaluate what forms of patient-centred care might lead to more engagement with people mild bleeding disorders. Through the Red Flag Study, they aimed to survey people diagnosed with an inherited blood disorder who had not been seen by their haemophilia treatment centre for more than two years.
Study participants reported that bleeding was ‘never a problem’ or ‘almost never a problem’ – which perhaps explains why they hadn’t felt a need to engage with their treatment centres. However, as the study team note in a paper outlining their findings, reporting and interpretation of bleeding is reliant on people’s own self-assessment – without proper training, some bleeds could go ignored or unnoticed. This points to a huge need to develop new education strategies for people with mild bleeding disorders, empowering them to participate in their health care and equipping them with the skills to manage their condition.
Engage and involve
Researching the experiences of people who are already disengaged or might not identify with a diagnosis of a bleeding disorder is a difficult thing to do. It’s perhaps no surprise that the number of people who responded to Doaa and her research team was limited. However, the study findings draw attention to the need for health care professionals and patient advocacy groups to work together to develop strategies for better engaging with people with a mild bleeding disorder.
It’s important to ensure that people have the confidence to access quality care, no matter what severity their bleeding disorder. As a paper in The Lancet many years ago reflected, ‘lost to follow-up means more than loss, it means failure to find’. As a community, we must do more to involve people with mild bleeding disorders
Further reading
Abdelfattah D, Klaassen AE, Perkins H, et al. Red Flag Study: An observational survey looking at bleeding in patients with a bleeding disorder who are lost to follow-up. J Haem Pract 2021; 8(1): 45-51. doi: 10.17225/jhp00175
About the author
Rich Gorman lives with severe haemophilia A. He works as a researcher at Brighton and Sussex Medical School
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