A new Midlands-wide evaluation highlights better ways for people with inherited bleeding disorders to understand and make treatment decisions.
Three Trusts across the Midlands have come together to inform a roadmap highlighting opportunities for people with inherited bleeding disorders to make decisions about their treatment.
The report combines perspectives from more than 200 patients and carers at University Hospitals Birmingham NHS Foundation Trust, University Hospitals of Leicester NHS Trust and Nottingham University Hospitals NHS Trust.
From this, it investigates how treatment information is accessed, understood and used across the region’s haemophilia Comprehensive Care Centres, known as CCCs.
The findings show that most patients are confident in engaging with their clinical teams, but many struggle with evaluating and comparing treatment options. Crucially, nearly one in three respondents felt uncertain weighing up different approaches, despite feeling better about discussing and understanding.
The report also suggests that patients strongly rely on their clinical teams as the primary source of information, as 73% of respondents noted their multidisciplinary team as their main point of reference.
Showing a need for more structured, accessible and personalised approaches, 88% preferred verbal explanations during clinic visits. This should also contribute to shared decision-making beyond the consultation itself.
Keen to learn
Two-thirds of respondents also wanted to find out more about developing treatments, side effects, safety and how treatments work in practice.
The report, published in May, shone a light on the need to reflect diverse populations. It also made six recommendations for haematology teams, including using simple tools to support better conversations in care, giving clear updates about new treatments and improving how clinical teams share information through training and reflection.
Roche Products, Chugai Pharma and Takeda UK provided financial support for the project, also known as the Pan-Midlands Service Evaluation Initiative and have had no involvement in it.
“By coming together as a regional collaborative across the haemophilia CCCs in Birmingham, Leicester and Nottingham, [the report] provided us with a meaningful opportunity to capture directly the information needs and preferences of patients and carers, with a view to improving the tools and available materials embedded within our services,” Gill Lowe, consultant haematologist and co-centre director of the West Midlands Adult Haemophilia CCC, tells Healthcare Today.
Both in and out of oncology, haematology is an area of medicine with various emerging options, including CAR T-cell therapy to treat certain blood cancers.
