MPN-SVT Study - interviews with individuals diagnosed with MPN-SVT

MPN-SVT is a rare condition where blood clots form in abdominal veins (splanchnic vein thrombosis) due to chronic bone marrow cancer (myeloproliferative neoplasm). In the UK, there are between 500-800 people with this condition. Death can result from underlying bone marrow cancer in 50% of patients and from gut or liver failure in others. Prompt treatment of the clot is essential to prevent fatality and improve long-term outcomes. Patients face lifelong challenges related to clots, bone marrow cancer, and liver and intestinal symptoms. Care pathways are complex and variable, with patients managed by multiple teams across different institutions.
In 2023, researchers at King’s College London, Royal Free Hospital, and the University of Surrey conducted the first study to document the experiences of those receiving and delivering treatment for MPN-SVT. The study was funded by MPN Voice and part-funded by the Royal Free Charity . The film presented here is made up of interviews with individuals diagnosed with MPN-SVT within the last five years, recruited from three London tertiary referral hospitals and one district general hospital in South-West England. These participants generously shared their stories, highlighting key moments that significantly shaped their journey with MPN-SVT. Their insights provide valuable information for improving current practices and developing services.
This film represents Phase 1 of our project, which involved gathering insights from people with MPN-SVT and their clinicians. Phase 2 will commence in the summer of 2024 and will focus on co-designing new resources and care processes with people with MPN-SVT and their clinicians to enhance the experiences of those living with the condition and improve the services provided to them.
A copy of the study report can be found here www.mpnvoice.or...