Patient experience of MPN-SVT v1.0

• Research type

  Research Study

• Full title

  A qualitative exploration of patient experience in people with Myeloproliferative Neoplasms associated Splanchnic Vein Thrombosis (MPN-SVT)

• IRAS ID

  289295

• Contact name

  Vicki Tsianakas

• Contact email

  Vicki.Tsianakas@kcl.ac.uk

• Sponsor organisation

  King's College London

• Duration of Study in the UK

  0 years, 6 months, 2 days

• Research summary

  Myeloproliferative Neoplasms associated Splanchnic Vein Thrombosis (MPN-SVT) is a rare but devastating and often fatal condition. Blood clots form in abdominal veins due to chronic bone-marrow cancer. This can lead to gut or liver failure and death. In UK there are 500-800 people being treated for MPN-SVT. Patients are usually female and under fifty. The clot must be treated quickly to avoid further problems and death but the treatment itself can also seriously affect the patient.

  Patients cope with a burden of problems for the rest of their lives. A major difficulty is that they receive care from many teams across different institutions and have no access to specialist treatment. There is no research around how patients experience MPN-SVT.

  We will:
  1) Explore the experience of patients with MPN-SVT to better understand their needs.
  2) Explore clinicians’ views on treating people with MPN-SVT and gain insight into the challenges of the care-pathways and meeting the needs of patients

  This is a 6-month study in Haematology and/or Hepatology departments across four separate hospitals: Royal Free Trust (RFT), King’s College Hospital (KCH), Guys and St Thomas’ Trust (GST) and Great Western Hospital (GWH). We will explore the experiences of 23 patients with MPN-SVT; 5 diagnosed within the last 6 months and 18 diagnosed within 7 months-5 years. Patient interviews will be filmed and with permission, edited to produce a short film capturing patient experience of MPN-SVT. The patient film will be hosted on MPN Voice charity website to raise awareness of, and support people with MPN-SVT and their families. Twenty clinicians will be interviewed about providing care to MPN-SVT patients. These will be audio interviews.

• REC name

  North West - Greater Manchester West Research Ethics Committee

• REC reference

  22/NW/0194

• Date of REC Opinion

  12 Aug 2022

• REC opinion

  Further Information Favourable Opinion