Head of Clinical Practice Myeloma UK Edinburgh, Scotland, United Kingdom
Introduction: For many individuals the journey to a myeloma diagnosis is not straightforward and often delayed compared to other cancers. In the UK, the median interval from initial symptom presentation to diagnosis is 163 days, with 31% of myeloma patients diagnosed via an emergency route. These diagnostic delays, present in both primary and secondary care settings, are associated with more advanced disease and poorer patient outcomes. Seven years ago, Myeloma UK established an early diagnosis steering committee to lead and facilitate the collaborative efforts required to tackle late diagnosis.
Methods: The Myeloma UK Early Diagnosis Steering Committee is comprised of an expert panel including consultant haematologists, immunologists, clinical scientists, clinical nurse specialists, general practitioners (GPs), and academic researchers. The committee's overarching goals are to raise awareness, provide education, and enhance the consistency of current practices.
Results: In both primary and secondary care, knowledge about the appropriate diagnostic tests, access to rapid diagnostics and interaction between the clinicians and laboratory teams when significantly abnormal results are found, are key in reducing diagnostic delays.
For GPs, we developed a Myeloma Diagnostic Tool: Guidance for Primary Care that lays out the signs and symptoms of myeloma and the tests to request. It uses a traffic light system to guide GPs on the interpretation of test results and referral. A survey reported that, thanks to the tool, 95% of GPs felt more confident recognising the signs of myeloma and 87% more confident in interpreting myeloma test results.
Other educational initiatives created by the group for GPs were a guide on myeloma, MGUS and related conditions, an MGUS patient diary and an e-learning module on monitoring MGUS.
To disseminate the above resources, GP information packs were sent out across the UK - targeting practices with a higher percentage of black patients and highlighting the inequalities experienced by black patients in the cover letter.
Considering the whole diagnostic pathway, anecdotal evidence suggested inconsistent laboratory practice for diagnosing myeloma, confirmed by a survey conducted through the committee in 2017. Consequently, the laboratory best practice sub-group developed a monoclonal gammopathy laboratory tool which set out guidelines for laboratory staff. In 2023, we collaborated with the Association for Laboratory Medicine on an international audit. The results highlighted areas of good practice and areas for improvement. These findings benchmark current practice and a planned future audit will be used to assess the impact of the laboratory tool.
Conclusions: Collaboration between Myeloma UK and various expert groups has produced a wide array of respected educational resources and practical tools, a few of which are highlighted above. This multidisciplinary approach is invaluable in addressing complex issues that can lead to a delayed diagnosis of myeloma.
