Myeloma UK has commissioned research to inform and develop a policy report that aims to raise awareness of the impact of a delayed diagnosis on patients’ quality of life.
The research project is being guided by an Expert Advisory Panel which includes: consultant haematologists Dr Simon Stern and Dr Stephen Hawkins; consultant radiologist Dr Christina Messiou; consultant orthopaedic and spinal surgeon Dr Sean Malloy; consultant nephrologist Dr David Makanjuola; Head of Clinical Practice Services at Myeloma UK Dr Suzanne Renwick; clinical nurse specialist Christine Skeet and myeloma patient Dorothy Gonsalves. The expert panel will advise on the evidence to be reviewed when preparing the report and its final recommendations.
The policy report aims to start a conversation amongst stakeholder audiences, including other patient groups, professional bodies, parliamentarians and local and national NHS policymakers, about the link between delays in diagnosis and quality of life. It will include evidence from a literature review, data from the National Cancer Registration and Analysis Service (NCRAS) and the quantitative and qualitative data collected by Myeloma UK.
As part of the project, Myeloma UK launched an online survey last month. It asked patients, families and friends affected by myeloma about their diagnosis experience. The survey collected evidence about the impact of complications, such as spinal fracture and reduced kidney function, caused by delayed diagnosis on the quality of life of myeloma patients. It also addressed the broader quality of life issues beyond clinical complications, like the burden of multiple hospital visits, difficulties coordinating communication between other hospital departments and myeloma teams, and taking time off work for appointments.
The survey results from over 1350 participants, including 45 members of the BAME community, are being analysed. Follow-up interviews with some survey participants will be carried out to collect further qualitative data to become part of the final report.
The policy report will be published early next year and the research findings will support our activities within our strategic cornerstone of “Diagnosing myeloma earlier.”