The prevalence of lymphoma, the most common form of blood cancer, was recently highlighted when former Top Ten tennis player Carla Suarez Navarro withdrew from the US Open following her diagnosis with Hodgkin Lymphoma.
The past few months have been especially challenging for those with lymphoma. Not only have they needed to shield to reduce the risk of Covid-19 exposure, but many treatments have been paused or changed. Furthermore, many clinical trials were also put on hold and are only now beginning to restart, according to Lymphoma Action. During Blood Cancer Awareness Month in September and World Lymphoma Awareness Day on 15th September, the focus is supporting individuals – and their carers - living with blood cancer.
One of the diagnostic challenges for clinicians is that there are currently no screening tests for lymphomas – indeed, the signs and symptoms of lymphoma can often be mistaken for other less serious illnesses, including flu.
According to the Lymphoma Coalition, many patients delay going to the doctor because they don’t realise they have cancer. A global patient survey revealed that 18% of patients waited six to 12 months to visit a GP after first experiencing symptoms; with 8% waiting up to two years, 5% five years and 4% over five years.
Additional research from Lymphoma Action confirms that 17% of patients were initially treated by a GP for a different condition, 28% were sent for non-urgent referral to a specialist, while 11% were seen as emergency/ A&E patients. Just 7% were sent to hospital for same day treatment – and 38% were referred by the GP under the ‘two week’ wait scheme.
The exact causes and risk factors are still unknown. Research continues around the world, which is why population health data is key to better understand patient pathways. Our healthcare systems capture huge volumes of data across millions of touchpoints – most notably clinical consultations in Primary Care. Information captured at this crucial intersection between patient and doctor has huge value when it is coded, structured, anonymised and analysed at scale. The Health Improvement Network, THIN® is recognised to offer one of the most reliable and respected sources of primary care data in the world, with a data set so rich that it brings huge value to healthcare organisations.
According to analysis of THIN® data, 39,157 patients with a diagnosis of lymphoma within THIN® – representing 0.24% of active patients. Our analysis confirms the recognised male bias in lymphoma patients: within THIN®, men (56%) are more likely to be diagnosed with lymphoma than women (44%). The average age at diagnosis is mid 60s for all patients.
Our analysis also underlines the diagnostic challenges associated with lymphoma: 94% of patients diagnosed with lymphoma* in 2019, have at least one referral to secondary care in their history in THIN®. Blood tests play a key role in both identifying lymphoma and tracking a patient’s response to treatment, including chemotherapy, antibody therapy and targeted drugs, all of which can cause low blood counts. Just 9% of active patients with a diagnosis of lymphoma have at least one Full Blood Count test result in THIN®. One fifth (20%) of active patients with a diagnosis of lymphoma have at least one Lactate Dehydrogenase test result, which can reveal inflammation, in THIN®.
THIN® data also helps us better understand co-morbidities with analysis showing that men are more likely to experience the comorbidities associated within lymphoma. 7% of active patients with a diagnosis of lymphoma also have a diagnosis of COPD in THIN® – 59% are male. 14% of active patients with a diagnosis of lymphoma also have a diagnosis of diabetes in THIN® – 63% are male. 12% of active patients with a diagnosis of lymphoma also have a diagnosis of coronary heart disease in THIN® – 63% are male.
Weight is also a factor. 91% of patients diagnosed with lymphoma in 2019, have at least one BMI record in THIN® – for over a quarter (28%), the most recent BMI recording is 30 or over.
Different Diagnostic Approach
This is a complex cancer, with more than 60 subtypes with varying diagnoses, treatment options and outcomes. Generally categorised either into Hodgkin lymphoma or non-Hodgkin lymphoma, each subtype requires different diagnostic evaluation and treatment protocols and will result in different outcomes.
Some forms are aggressive, others indolent and in most cases, there is no known cause. While understanding is increasing, there remains a disparity between the experiences of lymphoma patients and those of other cancer types, making the traditional cancer service approach of prevention, early detection, speedy treatment and aftercare less effective.
With the well-publicised delays to cancer diagnosis and treatment as a result of Covid-19, clinicians are under significant pressure. With cancers such as lymphoma that can easily be mistaken for other illnesses, the use of epidemiological health data such as THIN will play an important role in improving understanding. Better insight into comorbidities will help not only with earlier identification and awareness but also getting a patient to the lymphoma specialist able to diagnose the correct subtype of lymphoma to ensure they receive the right treatment at the right time for the right subtype.
*Lymphoma includes, Chronic Lymphocytic Leukemia, Hodgkin's disease, Non-Hodgkin’s and other lymphoma
THIN® is an unobtrusive medical data collection scheme that contains anonymised longitudinal patient records for approximately 6% of the UK population. It is the key driving force behind enabling advancements in patient care and outcomes, with one of the most respected and reliable data sources for anonymised primary care records.