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Pathways to diagnosis

Why did we do this research?

It is recognised that people found to have haematological malignancies, and particularly myeloma and lymphoma, experience prolonged routes to diagnosis, a greater number of GP consultations before hospital referral, and more emergency presentations. Collectively, such factors have been found to impact on outcomes, with respect to both disease stage, survival and quality of life. Evidence about these issues are in their infancy, and it is these issues that we aimed to address within the HMRN cohort.

What did we do?

In addition to the routine data collected from all patient records about disease stage at diagnosis, treatment and outcomes, HMRN has always collected patient self-reported survey data on symptoms and help-seeking. Further dedicated studies, set within HMRN’s infrastructure, have also collected additional data from medical records and Hospital Episode Statistics, over specific time-periods, about pathways to diagnosis. Data have also been collected via in-depth interviews with patients and relatives about their personal experiences leading to the point of diagnosis. 

What did we find?

Collectively, our various analyses have identified a range of novel findings and furthered knowledge around diagnostic pathways. Importantly, we confirmed prolonged time to diagnosis in many diagnostic groups, largely thought to be due to the way in which many haematological malignancies present, which typically involves a wide range of symptoms, that are likely to be common in the general population (such as fatigue and bone pain in myeloma; or swollen glands in lymphoma), and may only progress slowly. A cycle of repeat GP appointments was reported by the patients and relatives we interviewed, which required persistence and ongoing testing, and was said to be frustrating for patients, families and also healthcare providers, who could be similarly perplexed. Emergency presentation in myeloma, non-Hodgkin lymphoma and Hodgkin lymphoma was found to be associated with more advanced stage disease at diagnosis and poorer survival. It is important to recognise, however, that a large proportion of patients (around a third) have asymptomatic presentation, with their diagnosis identified via a routine blood test. This was common among patients with the more chronic cancers, such as chronic lymphocytic leukaemia (CLL) and chronic myeloid leukaemia (CML). 

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