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

BMC Hematology

Eve Roman⁵  Emma Mironska¹  Una Macleod²  Russell Patmore⁴  Andrew Jack³  Alexandra G Smith⁵  Debra A Howell⁵ 

[1] St James University Hospital, Leeds LS9 7TF, UK;Hull York Medical School, University of Hull, Hertford Building, Hull HU6 7RX, UK;Haematological Malignancy Diagnostic Service, Bexley Wing, St James University Hospital, Leeds LS9 7TF, UK;Queens Centre for Oncology, Castle Hill Hospital, Cottingham, Hull HU16 5JQ, UK;Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, York YO10 5DD, UK

关键词: Diagnostic delay;    Help-seeking;    Haematological malignancies;   

Others  :  848394
DOI  :  10.1186/2052-1839-13-9

 received in 2013-04-25, accepted in 2013-10-22,  发布年份 2013

【 摘 要 】

Background

Prior 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.

Methods

The UK’s Haematological Malignancy Research Network (http://www.hmrn.org webcite) 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.

Results

Around 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.

Conclusions

Pathways 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.

【 授权许可】

   
2013 Howell et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

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