Abstract
BackgroundPrior to diagnosis, patients with haematological cancers often have multiple primary care consultations, resulting in diagnostic delay. They are less likely to be referred urgently to hospital and often present as emergencies. We examined patient perspectives of time to help-seeking and diagnosis, as well as associated symptoms and experiences.MethodsThe UK’s Haematological Malignancy Research Network (http://www.hmrn.org) routinely collects data on all patients newly diagnosed with myeloma, lymphoma and leukaemia (>2000 annually; population 3.6 million). With clinical agreement, patients are also invited to participate in an on-going survey about the circumstances leading to their diagnosis (presence/absence of symptoms; type of symptom(s) and date(s) of onset; date medical advice first sought (help-seeking); summary of important experiences in the time before diagnosis). From 2004–2011, 8858 patients were approached and 5038 agreed they could be contacted for research purposes; 3329 requested and returned a completed questionnaire. The duration of the total interval (symptom onset to diagnosis), patient interval (symptom onset to help-seeking) and diagnostic interval (help-seeking to diagnosis) was examined by patient characteristics and diagnosis. Type and frequency of symptoms were examined collectively, by diagnosis and compared to UK Referral Guidelines.ResultsAround one-third of patients were asymptomatic at diagnosis. In those with symptoms, the median patient interval tended to be shorter than the diagnostic interval across most diseases. Intervals varied markedly by diagnosis: acute myeloid leukaemia being 41 days (Interquartile range (IQR) 17–85), diffuse large B-cell lymphoma 98 days (IQR 53–192) and myeloma 163 days (IQR 84–306). Many symptoms corresponded to those cited in UK Referral Guidelines, but some were rarely reported (e.g. pain on drinking alcohol). By contrast others, absent from the guidance, were more frequent (e.g. stomach and bowel problems). Symptoms such as tiredness and pain were common across all diseases, although some specificity was evident by sub-type, such as lymphadenopathy in lymphoma and bleeding and bruising in acute leukaemia.ConclusionsPathways to diagnosis are varied and can be unacceptably prolonged, particularly for myeloma and some lymphomas. More evidence is needed, along with interventions to reduce time-to-diagnosis, such as public education campaigns and GP decision-making aids, as well as refinement of existing Referral Guidelines.
Highlights
Prior to diagnosis, patients with haematological cancers often have multiple primary care consultations, resulting in diagnostic delay
Established in 2004, HMRN is a collaboration between the clinical haematology network, researchers at the University of York and the Haematological Malignancy Diagnostic Service, which diagnoses all haematological malignancies in the area coding to the latest WHO classification scheme [20]
Three time intervals were examined in symptomatic patients; the total interval; the patient interval; and the diagnostic interval [38]
Summary
Patients with haematological cancers often have multiple primary care consultations, resulting in diagnostic delay They are less likely to be referred urgently to hospital and often present as emergencies. In comparison to many other cancers, the pathway to diagnosis of haematological malignancies (leukaemias, lymphomas and myeloma) can be fraught with difficulty, and is often associated with excessive time between symptom onset, help-seeking and diagnosis; multiple primary care consultations before referral to secondary care; and an increased chance of being diagnosed after emergency admission [1,2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17]. Diagnosis of haematological malignancies poses exacting challenges for patients and clinicians; patients must determine when to seek help and, when they do, practitioners must identify the symptoms of potential malignancy and make appropriate and timely referrals to secondary care
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