Diagnostic Journeys in Myeloma: why are they so long and what might facilitate earlier diagnosis: A PhD Project
PhD Student
Tania Seale
Funder
Tenovus Cancer Care
Project Summary
Background
Myeloma is a rare malignancy of plasma cells, one of the cells of the immune system. Myeloma causes bony complications, anaemia, renal failure and increased susceptibility to infection. It is more common in the elderly and approximately 250 new cases are diagnosed in Wales each year.
There is often a long delay between presentation and diagnosis in myeloma compared with other cancers. Existing research into the reasons for this is scanty, but theories include the non-specific nature of symptoms, the rarity of the condition and the lack of knowledge of the disease amongst general practitioners.
Earlier diagnosis of myeloma has the potential to prevent complications developing and allows patients to be fit to receive treatment resulting in better outcomes.
Aims
The primary aim is to describe, in detail, the diagnostic journey for patients with myeloma and determine potential interventions to prevent unnecessary delays in diagnosis.
Specific objectives are:
- Prospectively recruit new patients with myeloma in Wales, and obtain data relating to their diagnostic journey, and obtain complementary data from their GPs and diagnosing clinicians
- From these data, identify patients that have had longer diagnostic journeys and undertake semi-structured interviews with a sample of these patients, and with their GPs, to explore the reasons for the diagnostic delay, and identify potential interventions that may hasten myeloma diagnosis in the future.
- To determine the effect of the time from first symptom to diagnosis, stage of disease at diagnosis and early mortality.
Methods
A systematic review of the existing literature in this area will be carried out followed by three phases of data collection and analysis.
Phase 1:
New patients with myeloma will be identified prospectively. Eligible patients will be sent an invitation letter, consent form and a structured questionnaire regarding symptoms, timings of presentation and referral, treatments and co-morbidities. Similar questionnaire data will be collected (with patient permission) from the referring general practitioner and hospital specialist. Descriptive statistical analysis will be undertaken. This design largely replicates the International Cancer Benchmarking Partnership Module 4 (http://www.cancerresearchuk.org/cancer-info/spotcancerearly/ICBP/).
Phase 2:
A semi-structured qualitative face to face interview study with a sample of myeloma patients recruited to the study and their GPs will be conducted. Participants will be purposively sampled. Responses from Phase 1 will be used as a basis for discussion and interviews will continue until saturation of individual themes has emerged. Analysis will be conducted using the Framework approach.
Phase 3:
Data will be modelled to ascertain the effect of time to diagnosis on clinical outcomes using established methodology.
How the results of this research will be used?
The main findings will be assimilated as recommendations, for practice, policy and future research; these will relate to myeloma, and possibly act as a model for other rarer, and hard to diagnose, cancers. Some of these recommendations will be for innovations that can be immediately implemented; these will be disseminated to clinicians and policy makers. Others will require further development and trialling. The findings will also inform the development of guidelines.
For further information, contact Tania Seale: t.d.seale@bangor.ac.uk