Why did we do this research?
Haematological malignancies are often difficult to detect. Because of this, it is recognised that people can experience:
- prolonged routes to diagnosis
- a greater number of GP consultations before hospital referral
- more emergency presentations.
This is especially true for people with myeloma and lymphoma. This delay then impacts on outcomes, adversely affecting each disease stage, including treatment, survival and quality of life during diagnosis. Evidence about the causes of these delays were in their infancy. HMRN was uniquely placed to follow the patient pathway in thousands of cases and it enabled us to explore these issues in depth.
What did we do?
- We analysed data from HMRN and drilled down into it to discover the most prevalent reasons why diagnosis was delayed. 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.
- We also undertook dedicated studies into this question. They were set over specific time periods and collected additional data about pathways to diagnosis from medical records and Hospital Episode Statistics.
- Information has also been collected via in-depth interviews with patients and relatives about their personal experiences leading to the point of diagnosis.
With these rich sources of data we were able to analyse what was happening.
What did we find?
- Symptoms - prolonged time to diagnosis is largely due to the way in which haematological malignancies present - typically they involve a wide range of symptoms most of which are common in the general population such as fatigue and bone pain (myeloma), or swollen glands (lymphoma). Symptoms are also prone to progress slowly which further exacerbates time delays to diagnosis.
- Appointments - 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.
- Emergencies - 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.
- Asymptomatic - 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).
Publications
Below are the series of findings from research projects over the last ten years, which will give you a deeper and more detailed insight into what we found: