Time-to-diagnosis and symptoms of myeloma, lymphomas and leukaemias: a report from the Haematological Malignancy Research Network

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.

Multiple myeloma: routes to diagnosis, clinical characteristics and survival – findings from a UK population‐based study

“…Presenting symptoms are often vague and include musculoskeletal pain and tiredness; and patients are more likely than those with other cancers to have three or more General Practitioner (GP) visits before a secondary care referral is initiated (Lyratzopoulos et al , 2012; Howell et al , 2013). Delayed diagnosis of MM is associated with increased risk of complications (bone disease, anaemia and renal failure) and poorer survival (Kariyawasan et al , 2007; Friese et al , 2009).…”

Quantifying the risk of multiple myeloma from symptoms reported in primary care patients: a large case–control study using electronic records

“…9 Myeloma has myriad symptoms, which are often at multiple sites and non-specific, with musculoskeletal pain, fatigue, and fractures often reported. 10 However, nearly all previous reports of myeloma symptoms have originated from secondary care, where it is likely there is more advanced disease, with potentially different features, including hypercalcaemia, bone lesions, renal impairment, and anaemia. 11 Current National Institute for Health and Care Excellence (NICE) diagnostic guidelines relate to haematological cancer as a whole.…”

Quantifying the risk of non-Hodgkin lymphoma in symptomatic primary care patients aged ≥40 years: a large case–control study using electronic records

“…6,15,16 Abdominal pain, fatigue, stomach/bowel problems, infection, back pain, and pain on drinking alcohol have also been reported. 6,17 This study aimed to identify and quantify…”

“…4,5 Patient delay in presentation to medical care and diagnostic or treatment delays are possible causes. [6][7][8][9] Mean diagnostic delay is estimated as 103 days, 9 while greater delays are found in younger patients. 10 Currently, over 30% of patients with NHL visit a GP three or more times before referral.…”