Diagnostic Journeys in Myeloma (DJiM)

• Research type

  Research Study

• Full title

  Diagnostic Journeys in Myeloma (DJiM):Why are they so long and what may facilitate earlier diagnosis?

• IRAS ID

  141486

• Contact name

  Tania D Seale

• Contact email

  t.d.seale@bangor.ac.uk

• Sponsor organisation

  Bangor University

• Research summary

  Primary outcome: to describe in detail diagnostic journeys in myeloma
  Research questions:

  • How do diagnostic journeys occur in myeloma patients across Wales?
  • What factors, interactions and experiences influence the pathway to individual diagnosis?
  • What factors can facilitate timely diagnosis?

  Background:

  There is a dearth of information relating to the diagnostic journeys of myeloma patients. Myeloma is a rare cancer and is ‘hard to diagnose’, it is characterised by non-specific and vague presenting symptoms and is mainly a disease of the elderly, where comorbidities may mask its presentation. Its rarity (myeloma accounts for 1.5% of all newly diagnosed cancers in the UK) results in primary care physicians having little exposure to the disease and higher levels of GP consultations are seen with longer time intervals to diagnosis. The general hypothesis of earlier diagnosis of cancer is that timely diagnosis decreases burden of the disease and elicits better outcomes.

  Methods: This is a prospective mixed methods designed study protocol.

  Phase 1: Collection of data through myeloma specific questionnaires directly from the patient, the GP and diagnosing specialist (usually a haematologist) will produce data on complex pathways components and intervals. Prospective recruitment reduces recall bias in patient and clinicians. Questionnaires, additionally, through open ended questions collect narrative data of perceptions and experiences which informs Phase 2
  Phase 2: A qualitative study, using individual semi-structured interviews from a purposully selected group of patients, is proposed to explore in more detail patients individual and subjective experience and understanding of the diagnosis journey for myeloma. This will include consideration of the interaction between patient, health professional (GP) and health services associated with the diagnosis of myeloma.

  190 Patients will be recruited from across the 7 health boards in Wales through the established MDT infrastructure, facilitated by the research network workforce NISCHR CRC.

  Eligibility

  • Patient over 18 years of age
  • Able and willing to give informed consent
  • Able and willing to complete the study interventions-complete questionnaire
  • Has been diagnosed with asymptomatic or symptomatic myeloma as defined by the MDT
  • Diagnosed within 6 months of study registration

  Exclusion criteria
  • In the last few days/weeks of life and too unwell to complete questionnaire

  - as determined by clinician
  • Mentally incapacitated
  • Not at liberty

  Results: Results will be used to inform practice and policy

  Project duration: 3 years

• REC name

  Wales REC 5

• REC reference

  14/WA/0186

• Date of REC Opinion

  4 Jul 2014

• REC opinion

  Further Information Favourable Opinion