Diagnostic journeys in myeloma – why are they so long, what interventions may facilitate earlier diagnosis, and does more timely diagnosis improve outcomes?
Student: Tania Seale
Supervisor: Professor Richard Neal
Location: Bangor University
Cancer type: Myeloma
Start and end date: Oct 2013 – Sept 2017
Myeloma is recognised as a difficult to diagnose cancer. Understanding how long it takes to diagnose it and what influences the diagnostic journey is limited. This study aimed to fill this gap in knowledge by defining the diagnostic journey of newly diagnosed patients across Wales from the first symptom experienced to diagnosis and treatment of their disease. In-depth questionnaires collected data from patients, their diagnosing GPs and hospital haematologists. Additionally, through the use of interviews the personal, social and contextual understandings and perceptions of patients and their GPs were explored. This provided a rich and detailed dataset to produce overall recommendations for the timely diagnosis of myeloma.
The journey to a diagnosis for the myeloma patient was highly complex and influenced across the pathway. The intervals of patient, primary care and total were longer in myeloma than any other cancer type. The secondary care interval was recorded as longer than the primary care interval. The most important symptoms in myeloma were muscle/joint pain, fatigue and bone pain. Over 80% of patients presented to their primary care doctor and half the patients had three consultations. Longer intervals were associated with consulting different GPs. There was low use of physical examination, radiography of symptomatic areas and proteinelectrophoresis (measurement of proteins in the blood to identify diseases). 15 Patients were referred to multiple secondary care teams, less than 50% had an urgent cancer referral. Longer secondary care intervals were associated with routine referrals. All patients initially blamed symptoms on ageing. Delayed help-seeking resulted in rapid deterioration and unscheduled presentation to secondary care. GPs did not recognise symptoms were sinister, and delayed investigation. Patients were not encouraged to come back if symptoms persisted. Overall GPs failed to suspect myeloma.
From this research we recommend GPs should:
- Suspect myeloma in patients presenting with fatigue or pain in muscles, joints or bones; and
- Have a lower threshold for examining patients and ordering radiographs and protein electrophoresis of serum or urine.
Patients diagnosed with myeloma in the future may benefit from earlier suspicion and optimal investigation of symptoms in primary care. This has the potential to result in faster referrals to a haematologist and treatment for their disease and a reduction in the disease burden and better survival outcomes.
The team are working with Myeloma UK and the Early Diagnosis of Myeloma Advisory Group to use these findings to gain and possibly produce interventions that will accelerate a diagnosis of myeloma