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01-09-2015 | Hematologic cancers | Article

Risk factors and time to symptomatic presentation in leukaemia, lymphoma and myeloma

Authors: Debra A Howell, Fiona Warburton, Amanda-Jane Ramirez, Eve Roman, Alexandra G Smith, Lindsay J L Forbes

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Abstract

Background: UK policy aims to improve cancer outcomes by promoting early diagnosis, which for many haematological malignancies is particularly challenging as the pathways leading to diagnosis can be difficult and prolonged.

Methods: A survey about symptoms was sent to patients in England with acute leukaemia, chronic lymphocytic leukaemia (CLL), chronic myeloid leukaemia (CML), myeloma and non-Hodgkin lymphoma (NHL). Symptoms and barriers to first help seeking were examined for each subtype, along with the relative risk of waiting >3 months’ time from symptom onset to first presentation to a doctor, controlling for age, sex and deprivation.

Results: Of the 785 respondents, 654 (83.3%) reported symptoms; most commonly for NHL (95%) and least commonly for CLL (67.9%). Some symptoms were frequent across diseases while others were more disease-specific. Overall, 16% of patients (n=114) waited >3 months before presentation; most often in CML (24%) and least in acute leukaemia (9%). Significant risk factors for >3 months to presentation were: night sweats (particularly CLL and NHL), thirst, abdominal pain/discomfort, looking pale (particularly acute leukaemias), and extreme fatigue/tiredness (particularly CML and NHL); and not realising symptom(s) were serious.

Conclusions: These findings demonstrate important differences by subtype, which should be considered in strategies promoting early presentation. Not realising the seriousness of some symptoms indicates a worrying lack of public awareness.

Br J Cancer 2015; 113: 1114–1120. doi:10.1038/bjc.2015.311

Keywords: diagnostic delay; patient interval; help seeking

Cancer outcomes in England are poorer than European averages and this is considered to be due, at least in part, to diseases being identified at a late stage as a consequence of delayed diagnosis (Richards, 2009). Promotion of early diagnosis is therefore a central tenet of the UK Department of Health’s strategy, the overarching aim being to align UK survival rates with the best in Europe (Department of Health, 2011a). A range of interventions to promote early diagnosis have been introduced in the United Kingdom (including guidelines, targets and education campaigns) (Department of Health, 2000; NICE, 2005). These have had a mixed impact, however (Peacock et al, 2013; Neal et al, 2014), and as many as a quarter of people are still diagnosed with cancer after emergency presentation to secondary care (Elliss-Brookes et al, 2012), a route often associated with prolonged time to diagnosis, advanced stage disease and poorer survival (McPhail et al, 2013).

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