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.
Led by Dr Debra Howell of the Epidemiology and Genetics Unit in the University’s Department of Health Sciences, the £300,000 study is prompted by data indicating that survival for many cancers is poorer in the UK than Europe.
Dr Howell says: “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.
“There are nearly 15,000 new diagnoses annually of lymphoma (Hodgkin and non-Hodgkin) and myeloma in the UK, 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 GPs when identifying symptoms that may indicate malignancy. This situation often leads to delayed help-seeking and prevents early hospital referral.”
“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.”
“I just thought it was a swollen gland. It could have been an infection of the throat.”
“I got the lump taken away and the doctor said I’m sorry to have to say that it’s lymphoma. But prior to that I hadn’t felt poorly. Nothing. I’ve had no symptoms. I’ve not been poorly at all really.”
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.
The new study will include a cohort of around 1000 patients newly diagnosed with lymphoma or myeloma during 2012.
Its specific objectives are to:
- interview patients to explore their symptoms before diagnosis, how they reacted to these and from whom they sought help
- use primary care (GP) and hospital records to examine events between patients seeking help and diagnosis, such as GP appointments and hospital referrals
There are nearly 15,000 new diagnoses annually of lymphoma (Hodgkin and non-Hodgkin) and myeloma in the UK, and early diagnosis is complicated by the complex nature of these diseases
Dr Debra Howell
The evidence generated will inform UK clinical guidance and could be used to develop tools such as computer-based decision programmes to help GPs to identify patients with these cancers. This could help to promote appropriate investigation and referral, reduce time-to-diagnosis and improve survival outcomes. Educational resources will also be produced 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 – more than 2,000 new diagnoses from a population of 3.6 million each year.
Dr Howell adds: “As the HMRN area is representative of the UK as a whole in terms of both demography and clinical practice, the results could inform practice around the UK.”
Notes to editors:
- The Haematological Malignancy Research Network (HMRN) is a collaborative venture between NHS practitioners, the Haematological Malignancy Diagnostic Service (which diagnoses all haematological malignancies in the area) and researchers at the Epidemiology and Genetics Unit, University of York (who manage data collection and analysis). As part of the registry, routine demographic, prognostic, treatment and outcome data are collected on all patients, as well as place and cause of death. For further information, visit www.HMRN.org
- For further information on the University of York’s Epidemiology and Genetics Unit, based in the Department of Health Sciences, visit www.egu.york.ac.uk/ and www.york.ac.uk/healthsciences
- For further information on Cancer Research UK, visit www.cancerresearchuk.org