variaTIon in Referral Thresholds in the Chronic Lymphocytic LeukaEmia Pathway (TITLE CLL)

Chronic lymphocytic leukaemia (CLL) is a haematological malignancy characterised by a clonal proliferation of CD5+ mature B lymphocytes which accumulate in the bone marrow, ymph nodes and blood. CLL is the most common adult leukaemia, with an annual incidence of around 4,500 cases in the UK.1 The median age at diagnosis is 72, and around 40% of cases affect people aged 75 and above, with prevalence substantially higher in males than females. CLL develops slowly and is often symptomatic, with a high proportion of cases found incidentally during routine full blood count (FBC) tests and identified by a persistent lymphocytosis. An advanced stage of disease is associated with bulky lymphadenopathy, fatigue, unexplained weight loss, fever, night sweats, organomegaly and cytopenias (anaemia, thrombocytopenia and neutropenia) due to bone marrow infiltration.

Around two thirds of patients diagnosed with CLL do not need treatment during their lifetime, however the immune perturbation associated with the condition is associated with an increased risk of secondary malignancy and infection morbidity, even in those with early stage disease.2 If a CLL diagnosis is recognised, intervention can be taken to mitigate against these associated conditions. These include appropriate counselling e.g. taking care with sun exposure to lower skin cancer risk and reduce treatment-induced UV sensitivity. The Department of Health (DH) and British Society for Haematology (BSH) guideline also recommends annual influenza and covid-19 vaccination, as well as immunisation against Pneumococcus and Varicella Zoster at diagnosis to reduce infection morbidity and mortality risk.3 Early implementation of vaccination is known to maximise its effectiveness, thus a timely diagnosis of CLL can reduce the risk of other potentially life-threatening conditions.4

Much of the diagnostic work up and advice for patients regarding ongoing management for early stage CLL could be delivered within Advice and Guidance (A&G) or as a one-off secondary care consultation. Once diagnosed, early stage CLL that requires active observation can be managed effectively within the primary care setting.5 However, referral rates for CLL can be influenced by both primary care referral practices and secondary care referral acceptance criteria. Variation in accessing services increases health inequalities, and in CLL, patients with lower socioeconomic status are more likely to experience delayed diagnosis, have a greater likelihood of being diagnosed after emergency presentation, and have significantly higher mortality risk than the least deprived patients.6,7

Locally, evidence from University Hospitals Birmingham (UHB) Trust dashboard data previously showed substantial differences in referral rates between primary and secondary care for lymphocytosis in the West Midlands and community follow up practice for early stage CLL in primary care, varying across the region. A&G services and timely patient review are more likely to be accessed by GP practices located within affluent areas. It is not clear why this variation exists within the West Midlands, thus exploring primary care referral patterns and decision-making for haematological malignancies represents an important area to be addressed, in order to reduce unwarranted variation in patient referrals and CLL management practice.

The investigators will develop and disseminate two surveys to collect data to describe a) referral behaviours and understanding of CLL (GPs) [survey 1], and b) how different NHS Trusts across the West Midlands manage CLL Clinical Nurse Specialist (CNS) services [survey 2]. In addition to benchmarking current practice for CLL referral and management across the region, the study will help to identify practices where direction to local referral guidance for lymphocytosis and lymphadenopathy (recently developed with BSol ICB) may be highlighted. It may also demonstrate the differential knowledge among specialist nurses and how this may be improved in local hospitals.