Background: Prior to diagnosis, patients with haematological cancers often have multiple primary care consultations,\nresulting in diagnostic delay. They are less likely to be referred urgently to hospital and often present as emergencies.\nWe examined patient perspectives of time to help-seeking and diagnosis, as well as associated symptoms and\nexperiences.\nMethods: The UKââ?¬â?¢s Haematological Malignancy Research Network (www.hmrn.org) routinely collects data on all\npatients newly diagnosed with myeloma, lymphoma and leukaemia (>2000 annually; population 3.6 million).\nWith clinical agreement, patients are also invited to participate in an on-going survey about the circumstances\nleading to their diagnosis (presence/absence of symptoms; type of symptom(s) and date(s) of onset; date medical\nadvice first sought (help-seeking); summary of important experiences in the time before diagnosis). From 2004ââ?¬â??2011,\n8858 patients were approached and 5038 agreed they could be contacted for research purposes; 3329 requested and\nreturned a completed questionnaire. The duration of the total interval (symptom onset to diagnosis), patient interval\n(symptom onset to help-seeking) and diagnostic interval (help-seeking to diagnosis) was examined by patient\ncharacteristics and diagnosis. Type and frequency of symptoms were examined collectively, by diagnosis and\ncompared to UK Referral Guidelines.\nResults: Around one-third of patients were asymptomatic at diagnosis. In those with symptoms, the median patient\ninterval tended to be shorter than the diagnostic interval across most diseases. Intervals varied markedly by diagnosis:\nacute myeloid leukaemia being 41 days (Interquartile range (IQR) 17ââ?¬â??85), diffuse large B-cell lymphoma 98 days (IQR\n53ââ?¬â??192) and myeloma 163 days (IQR 84ââ?¬â??306). Many symptoms corresponded to those cited in UK Referral Guidelines,\nbut some were rarely reported (e.g. pain on drinking alcohol). By contrast others, absent from the guidance, were more\nfrequent (e.g. stomach and bowel problems). Symptoms such as tiredness and pain were common across all diseases,\nalthough some specificity was evident by sub-type, such as lymphadenopathy in lymphoma and bleeding and\nbruising in acute leukaemia.\nConclusions: Pathways to diagnosis are varied and can be unacceptably prolonged, particularly for myeloma and\nsome lymphomas. More evidence is needed, along with interventions to reduce time-to-diagnosis, such as public\neducation campaigns and GP decision-making aids, as well as refinement of existing Referral Guidelines
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