King's College London

This study aims to bring people with MPN-SVT and healthcare professionals together to develop ideas for service improvement. The intention is to co-design resources and processes that lead to increased understanding of MPN-SVT, improved communication and care coordination, and easier access to comprehensive support.

These efforts should enhance safety, reduce stress and healthcare related burden, and improve health outcomes for people with MPN-SVT.

We will share our findings through multiple channels, including academic journals, conferences, and media outlets, with a special focus on MPN Awareness Day, Blood Cancer Awareness Month and Rare Diseases Day.

MPN-SVT Co-Design Study – Participant Information Sheet for People with MPN-SVT

If you are a person with MPN-SVT and want more information about this study, please read this participant information leaflet.

MPN-SVT Co-Design Study – Participant Information Sheet for Healthcare Professionals

If you are a healthcare professional and want more information about the study, please read this participant information leaflet.

 

Outputs 

Experiences of people with myeloproliferative neoplasms associated splanchnic vein thrombosis – Catalyst Film and Study Report

In 2023, researchers at King’s College London, Royal Free Hospital, and the University of Surrey conducted a 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. This film 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 will provide valuable information for the co-design phase of this wider project.

Follow this link – MPN-SVT Film and Study Report – to watch the film and access a copy of the previous study report.

People living with MPN‑SVT experience significant challenges arising from the rarity and complexity of their dual diagnosis. Because MPNs are rare, chronic cancers, they often fall between sectors – too rare to receive sustained focus within cancer services, yet frequently overlooked in the rare disease community due to their cancer classification. SVT is similarly extremely rare and often viewed as a thrombotic event rather than a long‑term condition, despite requiring complex, often lifelong management. Our study findings reflected these gaps, with both patients and healthcare professionals describing delays and uncertainty in the journey to diagnosis, fragmented care, and persistent gaps in understanding, coordination, and support.

In response to these challenges, participants co‑designed the first publicly available information and support resource specifically for people with MPN‑SVT and the professionals involved in their care. The digital resource provides clear condition information, guidance on navigating the care pathway, tools to support communication within and between teams, and signposting to practical, emotional, and psychosocial support. It includes multiple co‑designed formats – written information, an animation explaining the link between MPNs and SVT, an interactive body map to support understanding of different SVT diagnoses, explanatory diagrams, a downloadable leaflet and clinic assist sheet, and links to other reliable online resources – directly addressing the previously unmet need for tailored, accessible information.

Stakeholders responded positively to the resource, with several noting they wished such support had been available at diagnosis. The resource will be disseminated via our network of specialists and the leading MPN charity, MPN Voice, and includes an evaluation form to gather feedback on its usefulness and identify areas for improvement. However, further work remains to reduce fragmentation and delay and improve experiences, including: building a clearer understanding of the diagnostic journey, strengthening national, standardised care pathways, improving inter‑professional and inter‑organisational communication, raising awareness of MPN-SVT outside specialist centres and enhancing access to holistic support.