Finalist
A Life Worth Living – The Impact of a Delayed Diagnosis on Myeloma Patients’ Quality of Life
Summary of work
Delayed diagnosis is a significant challenge in myeloma, where around a third of patients present through emergency routes – one of the highest rates across all cancers. These challenges are widely recognised and there has been significant activity in recent years to address the problem. While the link between delayed diagnosis and overall survival in myeloma is well established, Myeloma UK wanted to improve recognition of the quality-of-life impact that late, or delayed, diagnosis has on patients.
Working with Myeloma UK, we defined the problem, with a literature review establishing significant gaps in understanding of the QoL impact of delayed diagnosis. Setting up an Expert Advisory Panel and partnering with Synergy Healthcare Research, we carried out the largest ever UK survey of myeloma patients, carers and families. Findings were published in the ‘A Life Worth Living’ report, which demonstrated the serious impact a myeloma diagnosis has on QoL and which provided the first definitive evidence that these impacts are greater the later a diagnosis is made.
Myeloma UK secured extensive coverage for the report and its recommendations have supported engagement with NHS England over how the findings can feed into the new Faster Diagnosis Framework and ‘Non-Specific Symptom’ (NSS) diagnosis pathway.
Judges’ comments
M+F Health and Myeloma UK have impressed the judges with the good coverage achieved and a lot delivered for the budget. It was a well-structured entry and programme, incorporating insights from published sources, original research with a large sample and purpose-driven communication outputs in line with the strategy and objectives.
