(CORDIS) — More than 9 million people in Europe are living with cancer, and every family is touched in some way by this devastating disease. European researchers have focused every effort in combatting this disease and improving the quality of life of those affected. Now, researchers at the University of York in the United Kingdom have launched a major study of lymphoma and myeloma aimed at promoting earlier diagnosis and improving survival for patients with these cancers, which are among the most common in the United Kingdom. The project, which is funded by Cancer Research UK, as part of the National Awareness and Early Diagnosis Initiative (NAEDI), will develop an evidence base that could be used to reduce time-to-diagnosis in patients with these types of cancers.
The team is led by Dr Debra Howell of the Epidemiology and Genetics Unit at the University of York’s Department of Health Sciences. The spark for this study was ignited when data was presented indicating that survival for many cancers is poorer in the United Kingdom than in Europe.
‘The UK Improving Outcomes Guidance for cancer considers that the most important reason for this is likely to be late stage diagnosis; earlier diagnosis may increase the scope for successful treatment and could save thousands of lives,’ said Dr Howell. ‘There are nearly 15 000 new diagnoses annually of lymphoma (Hodgkin and non-Hodgkin) and myeloma in the United Kingdom, and early diagnosis is complicated by the complex nature of these diseases. The symptoms of lymphoma and myeloma can be strikingly similar to those of more common, benign conditions and this poses exacting challenges for both patients and general practitioners (GPs) when identifying symptoms that may indicate malignancy. This situation often leads to delayed help-seeking and prevents early hospital referral.’
Despite UK Referral Guidance, data from the National Cancer Data Repository (2007) reported that patients with haematological malignancies, including lymphoma and myeloma, were generally more often diagnosed after emergency presentation and less often referred via the government-recommended, two-week wait compared to those with other cancers. Patients were quoted as saying, ‘The doctors were concerned about these swollen glands in my neck which I’d had for a couple of months. I never thought anything about it because they didn’t hurt,’ and ‘I just thought it was a swollen gland. It could have been an infection of the throat.’
Given patient attitudes, the new study, which covers around 1 000 patients newly diagnosed with lymphoma or myeloma during 2012, will interview patients to explore their symptoms before diagnosis. They will also explore how the patients reacted to these symptoms and from whom they sought help to access primary care (GP), as well as hospital records to examine events between patients seeking help and diagnosis, such as GP appointments and hospital referrals.
The evidence generated will assist in informing British clinical guidance and could also be used to develop tools like computer-based decision programmes to help GPs identify patients with these cancers. This could help promote appropriate investigation and referral, reduce time-to-diagnosis and improve survival outcomes, according to the researchers. Educational resources will also be generated to encourage people with possible symptoms to seek help sooner.
The study is based on the infrastructure of the Haematological Malignancy Research Network (HMRN), which was established in 2004. HMRN is a specialist population-based registry, funded by Leukaemia and Lymphoma Research (LLR), which includes all patients newly diagnosed with a haematological malignancy within the Yorkshire and Humber and the Yorkshire Coast Cancer Network areas.