Table 1. Characteristics of interviewed myeloma patients (n = 20), health changes/symptoms and pathway to diagnosis.
| Patient ID | Sex | Age (Yrs) | Health changes/symptoms reported prior to myeloma diagnosis | Healthcare professionals consulted1 and secondary care referrer (R)2 | Referral specialities consulted prior to diagnosis1,3 | Primary care consultations with myeloma symptoms1 | Estimated duration of intervals (months) | Patient perceived delay | |
|---|---|---|---|---|---|---|---|---|---|
| Appraisal & help-seeking | Diagnostic | ||||||||
| P01 | M | 67 | Under-performance4, trouble breathing, pain (shoulder blades), tiredness. | GP Practice nurse (R1) |
R1-Respiratory medicine5 • Haematology |
6 | 1 | 2.5 | Yes |
| P02* | M | 63 | Heartburn/indigestion, pain (chest, armpits, arms), under-performance, tiredness, poor sleep (due to pain), visible lump (sternum), pale. | GP (R1) |
R1-Rheumatology • Haematology • Oncology |
3 | 2.5 | 7 | Yes |
| P03 | M | 71 | Irritable/restless knee (post-replacement), under-performance, pain (back, ribs–later identified as fractures), cramp, abnormal blood test (blood ‘a bit thick’). | GP (R1) Physiotherapist (x 2 –one new; one ongoing due to knee replacement–x-ray normal) |
R1-Haematology | 6 | 1 | 17 | Yes |
| P04 | F | 78 | Consulted regarding discomfort associated with existing condition (hernia). Abnormal blood test (‘rather anaemic’), tiredness, under-performance, shivers. | GP (R1 & R2) |
R1-Gastroenterology (endoscopy and colonoscopy) R2-Haematology |
3 | n/a (existing condition) | 5 | Yes |
| P05 | F | 55 | Tiredness, pain (chest, ribs, back), nosebleeds, infection (persistent sore throat), abnormal blood test (‘severely anaemic… immune system shot to bits’). | GP (R1) Locum GP (requested bloods/x-ray) |
R1-ENT (GP approves patient’s decision not to attend due to improvement) 2-Haematology (hospital re-called patient–abnormal blood test) |
4 | 1 | 4 | No |
| P06 | F | 71 | Nausea, sickness (eventually intolerant of sips of water), oral thrush, couldn’t eat, weight loss, abnormal blood test (‘severely dehydrated’). | Chemist GP (R1) |
R1-Gastroenterology (endoscopy) • Acute medical unit (emergency admission due to blood test result) • Renal medicine • Haematology |
2 | 1 | 1.5 | No |
| P07 | F | 56 | Recurrent mouth ulcers, abnormal blood test (‘folic acid deficiency’), under-performance, breathless, dizzy, palpitations, ‘run-down’, abnormal blood test (‘everything below range’), abnormal urine test (‘Bence Jones positive’). | GP Nurse practitioner (R1) |
R1-Haematology (urgent) | 5 | 3 | 8 | Yes |
| P08 | M | 68 | ‘Flu’ symptoms (diagnosed as pneumonia); abnormal blood test (unknown what). | GP (R1) |
R1-Acute medical unit (emergency admission via GP) • High dependency unit • Haematology (patient called in–abnormal bloods) |
1 | 1 | 3 | No |
| P09 | M | 70 | (Consulted for groin pain/swelling–hernia), abnormal blood test (‘paraprotein spike’). | GP (R1) Practice nurse |
R1-Haematology | 2 | 1 | 2 | No |
| P10 | M | 74 | Breathlessness, tiredness, under-performance, swollen legs, abnormal blood test (‘kidneys shutting down’, other abnormality–unknown what). | GP (R1) |
R1-Acute medical unit (emergency admission via GP) • Haematology |
2 | 2 | 0.5 | No |
| P11 | M | 59 | (Consulted for PSA test), frothy urine, pain (rib–later identified as fractured). | GP (R1, R2 & R3) |
R1-Urology (biopsy, in relation to results of PSA tests) R2-Renal medicine (cancelled by hospital—‘clinical decision’) R3-Renal medicine • Haematology |
5 | 3 | 15 | Yes |
| P12* | M | 43 | Altered sensations (head/ear), enlarging lumps (head, under hair), stiffness and pain (neck), tiredness, lethargy, apathy, ‘run-down’, headaches; unable to open mouth/eat, under-performance. | GP (R1) Osteopath |
R1-General surgery5 • Haematology |
6 |
3 | 8 | Yes |
| P13 | M | 71 | Pain (ribs), breathlessness, under-performance. | GP (R1) |
R1-Oncology (Cancer of Unknown Primary) • Haematology |
3 | 1 | 7 | Yes |
| P14 | F | 59 | Pain (back–later identified as ‘vertebral collapses’), ‘malaise’, ‘unwell’, height loss, nausea, pins and needles (feet), infections, loss of appetite, weight loss; abnormal blood test (unknown what–‘positive markers’). | Self-referral to A&E6 (R1) NHS Helpline to A&E (R2) GP (R3 & R4) Physiotherapist |
R1-A&E (via self-referral) R2-A&E (via NHS helpline) • Medical assessment unit R3-Acute medical unit (emergency admission via GP) R4-Endocrinology (P) • Haematology |
10 | 1 | 8 | Yes |
| P15 | M | 58 | Pain (back), impaired posture, reduced mobility, sleepiness; abnormal blood test (unknown what). | GP (R1) Physiotherapist |
R1-Haematology (‘straight away’) | ‘Loads of times’ | 1 | 17 | Yes |
| P16 | M | 66 | Infections, pain (ribs, chest), under-performance, abnormal blood test and scan (unknown what). | GP (R1) Physiotherapist |
R1-Oncology (urgent) • Haematology |
6 | 3 | 15 | Yes |
| P17 | M | 70 | Feeling ‘off’, pain (back–later identified as fracture), reduced mobility, nausea, vomiting, abnormal blood test (‘anaemia’, ‘renal failure’). | Self-referral to A&E (R1) GP (R2 & R3) |
R1-A&E (via self-referral) R2-Musculoskeletal clinic R3-Haematology (urgent, then emergency admission) |
5 | 0.5 | 2 | No |
| P18 | M | 71 | Weight loss, abnormal blood test (‘anaemia’), infection (viral–‘flu’), pain (back), height loss, abnormal blood test (‘paraprotein’). | GP (R1 & R2) Physiotherapist |
R1-Colorectal surgeon (endoscopy and colonoscopy) R2-Haematology (urgent) |
2 | 1 | 11 | Yes |
| P19 | M | 62 | Pain (back–later diagnosed as acute fractures), bloating, abnormal blood test (‘protein’), under-performance. | GP (R1) NHS helpline to A&E (R2) |
R1-Haematology (urgent) R2-A&E (via NHS helpline) |
2 | 1 | 1 | No |
| P20 | F | 74 | Low mood (‘almost depressed’), lack of energy, pain (ribs, shoulder blades, leg), headaches, weight loss, under-performance, abnormal blood tests (‘anaemia’). | GP Self-referral to A&E (R1) |
R1-A&E (self-referral via ambulance) • Acute admissions unit • Orthopaedics • Haematology |
4 | 7 | 5 | No |
1Based on information from interview and HMRN questionnaire
2R indicates secondary care referral and the number indicates the referral sequence
3bold indicates new referral; → indicates consultant to consultant referral
4Inability to perform usual activities, including: mobilising and moving (walking, bending, getting upstairs, getting into car, getting in and out of bed, driving, sitting, moving in bed, lying down, getting up); bodily actions (sneezing, coughing); hobbies/sports (golf, hiking, bell ringing, exercise bike, swimming); household jobs (gardening, washing up, moving furniture); work (lifting, general manual work)
5Private appointment
6Accident and Emergency department
*Patient also diagnosed with soft tissue plasmacytoma(s).