First study of its kind investigates the experiences of individuals with MPN-SVT and the healthcare professionals who care for them.
For Blood Cancer Awareness Month and MPN Awareness Day this month, researchers at King's College London, in partnership with MPN Voice, are raising awareness of Myeloproliferative Neoplasms associated Splanchnic Vein Thrombosis (MPN-SVT) and the unmet needs of those living with this rare condition.
MPNs are rare blood cancers that can lead to serious complications, such as SVT - a devastating condition where blood clots form in the veins of the abdominal organs. With a 40% mortality rate within five years, those affected face a life-long, resource-intensive treatment regimen, compounded by the complexity of care pathways that require intense coordination across multiple specialist teams.
The lived experiences of those with MPN-SVT have been largely under-reported. To address this, researchers conducted the first-ever patient experience study on MPN-SVT as part of a larger Experience-Based Co-Design (EBCD) project, funded by MPN Voice and part-funded by the Royal Free Charity. The findings align with the UK Government's Rare Diseases Framework and Action Plans, highlighting the need for better care coordination, improved diagnostic pathways, and more personalised care. The full study report is available here.
Working with MPN Voice, the research team captured powerful patient stories in a short film, which was released on MPN Awareness Day on 12 September:
This is the first study of its kind to investigate the experiences of individuals with MPN-SVT and the healthcare professionals who care for them. Understanding service-user experience is crucial, as it is closely linked to clinical safety and effectiveness. By bringing these experiences to light, the study seeks to identify areas for improving care delivery for MPN-SVT patients.
As part of the EBCD process, the film captures key moments that have profoundly impacted patients' lives. It will be used in Phase 2 of the project to guide discussions on improving services. With participants' permission, the film has been publicly shared on MPN Voice's YouTube channel to raise awareness and support others living with MPN-SVT, their families and healthcare providers.
In Phase 2, which began in August 2024, people with MPN-SVT and healthcare professionals will work together to produce new resources and care processes that will benefit those living with MPN-SVT and identify the most effective ways to share the findings and assess the impact of the co-designed interventions.
To find out more, please visit the project's webpage.
This is the first study to explore the experiences of patients with MPN-SVT, and their powerful stories, shared in the film, are essential for raising awareness and understanding the complexities of their care. In the next phase of our research, we will collaborate with service-users and clinicians to co-design new resources and care processes. We believe these efforts will have a lasting impact on improving healthcare experiences and addressing the unique needs of this overlooked group
Vicki Tsianakas, Lead Investigator and Lecturer at the Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care
On behalf of the community of patients diagnosed with Myeloproliferative Neoplasms (MPNs), we are incredibly grateful for the work that the team at King's have done to raise awareness of MPN-SVT. The film that has been made will be invaluable to patients and families of patients diagnosed with this rare condition. We know from our members that they often feel isolated and fearful when faced with serious and complicated diagnoses where the condition is very rare. Resources like the film the team at King's have made go a long way to lessening the anxiety and fear that patients feel in these situations.
Jon Mathias, Co-Chair, MPN Voice
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