Principal Investigator - Prof Val Jenkins
Researcher - Rachel Hunter
Data Manager - Dr Ruth Habibi
Sponsor: Sussex University
Multiple myeloma, also known as myeloma, is a blood cancer arising from plasma cells. At any one time there are around 24,000 people living with myeloma in the UK. Myeloma is currently incurable and is relapsing-remitting in nature. However, continuous advancements in treatment options have substantially improved life expectancy.
Multiple myeloma is a complex haematological malignancy with advanced medical terminology and a variety of treatment options which can be overwhelming for both patients and caregivers. Knowledge plays a critical role in various aspects of disease management and overall health. In addition to this, understanding your disease greatly impacts informed decision-making and health outcomes. However, there is a notable lack of research on the degree of understanding that myeloma patients and their family possess.
SHORE-C have been working with Sussex Haematology team and patient representatives to develop a UK wide survey for those living with multiple myeloma. This online survey will launch in January 2025 with the aim of gathering information on the communication experiences of myeloma patients and their understanding of the condition.
The survey has 6 short sections, with question topics including:
- About you
- Explaining multiple myeloma
- Communication of the diagnosis
- Communication around treatments and support
- Family/friends' understanding of multiple myeloma
- Things people did or said that were helpful or not so helpful.
SHORE-C hope to utilise survey outcomes to inform new educational materials for myeloma patients, their families, and the health care professionals treating them.
Current Stage:
In setup