Improving experiences of people with myeloproliferative neoplasms associated splanchnic vein thrombosis (MPN-SVT)
Myeloproliferative Neoplasms associated Splanchnic Vein Thrombosis (MPN-SVT) is a rare condition where blood clots form in veins around the liver and gut due to a chronic cancer. Managing this lifelong condition requires coordinated care from various healthcare professionals (HCPs). Despite this need, the experiences and challenges faced by those with MPN-SVT are not well understood.
In a previous study, we found significant unmet needs among service-users and HCPs. Our current study aims to address these needs by creating new resources and care processes that improve the well-being of people with MPN-SVT. We are using Experience-Based Co-Design (EBCD), a method where service-users and HCPs collaborate to develop ideas for service improvement.
Participants will work together in facilitated groups to create resources such as information guides for service-users, educational materials for HCPs including GPs, tools to enhance communication between service-users and different HCPs and healthcare services, and processes to facilitate emotional, psychological, and social support.
Aims
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.
Our Partners
University of Surrey
Principal Investigator
Lecturer
Investigators
Research Associate
Consultant Haematologist, Royal Free Hospital; Honorary Associate Professor, UCL
Professor of Cancer Care & Lead for Digital Health, University of Surrey
Consultant Hepatologist, Royal Free Hospital
Affiliations
Funding
Funding Body: Royal Free London NHS Foundation Trust
Amount: £39,907.26
Period: July 2024 - July 2025