Shared Decision-Making Gaps Persist in Inherited Bleeding Disorders

SHARED decision making remained a cornerstone of inherited bleeding disorder care, but a regional service evaluation found that many patients and carers still lacked confidence when comparing treatment options despite reporting strong relationships with their clinical teams. 

The evaluation, conducted across haemophilia comprehensive care centres in Birmingham, Leicester, and Nottingham, explored how people with inherited bleeding disorders access, understand, and use treatment information. As treatment options continue to expand, including newer and more personalised therapies, researchers sought to identify whether current information provision adequately supports informed decision making. 

A total of 207 patients and carers were included in the final analysis, representing a range of inherited bleeding disorders, including haemophilia A, haemophilia B, von Willebrand disorder, inherited platelet disorders, and rare factor deficiencies. 

Clinical Teams Remained the Trusted Source of Information 

Most respondents reported feeling confident discussing treatment with their healthcare professionals, with 84% indicating they understood information and could engage effectively with their clinical team. Verbal discussions during clinic appointments were the preferred method of communication for 88% of respondents, while 73% identified the multidisciplinary team as their primary source of treatment information. 

Despite this high level of confidence, the evaluation revealed important gaps in treatment literacy. Nearly one-third of respondents (31%) reported uncertainty or difficulty when weighing up different treatment options, while 27% found it difficult to explain those options to others. Although 71% described themselves as active participants in managing their condition, around 30% reported adopting a more passive role in treatment decisions. 

Demand for New Treatment Information Continues to Grow 

Interest in emerging therapies was high across the survey population. Two-thirds of respondents (67%) wanted more information about new and emerging treatments, while many also requested clearer information about treatment safety, side effects, and how different therapies work. 

Although most participants did not report significant difficulty accessing information, almost one-quarter (23%) either experienced challenges or were uncertain about finding appropriate resources. Respondents also highlighted a need for more personalised information, simpler language, and greater opportunity to ask questions during consultations. 

The report concludes that strengthening shared decision making will require more than simply providing information. Recommendations include improving communication skills across multidisciplinary teams, developing structured tools to help patients evaluate treatment options, integrating patient-centred decision support into routine care, and providing timely, accessible updates on new therapies. The authors also recommend further work to understand barriers experienced by underrepresented communities to ensure information resources remain equitable and responsive as inherited bleeding disorder treatments continue to evolve. 

Reference 

University Hospitals Birmingham NHS Foundation Trust. Bridging the Gap report. 2026. Available at: https://www.uhb.nhs.uk/media/zajh44uk/bridgingthegapreport.pdf. Last accessed: 24 July 2026. 

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