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 launched in January 2025 and was open for 3 months, with the aim of gathering information on the communication experiences of myeloma patients and their understanding of the condition.
Below is a summary of the key findings. 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:
Analysis and Write Up