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Jasmin K Pandhal, William J Gregory, Hasan Tahir, Sian Bamford, P259 Survey of diagnostic delay in axial spondyloarthritis across two NHS rheumatology services, Rheumatology, Volume 61, Issue Supplement_1, May 2022, keac133.258, https://doi.org/10.1093/rheumatology/keac133.258
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Abstract
Diagnostic delay is an ongoing challenge in axial spondyloarthritis (axSpA), with a recent, comprehensive literature review suggesting an 8.7-year delay between symptom onset and formal diagnosis in the UK. The aim of this study was to ascertain the axSpA delay in diagnosis and explore contributing factors locally within two major NHS trusts.
A 13-question survey was created to identify the delay in diagnosis and contributing factors across two urban NHS axSpA services, from onset of symptoms to diagnosis and commencement of treatment. Participants were recruited from clinic visits.
A cohort of 88 patients with a diagnosis of axSpA who attended the axSpA service at either Royal Free NHS Foundation Trust or Salford Royal NHS Foundation Trust responded between August and September 2021. See Table 1 for survey results. The average time from onset of symptoms to diagnosis was similar across centres despite the differences in demographics. Across the two sites, prior to diagnosis 89% of patients saw a general practitioner (GP), of which 68% of patients saw a GP one to five times, 16% five to ten times and 13.25% more than ten times. Many patients also saw other healthcare professionals (HCPs) (see Table 1) aside from the GP and rheumatologist prior to diagnosis. 31.9% saw one other HPC, 20.7% two other HPCs, 12.4% three, 2.4% four and 1.19% five other HCPs prior to diagnosis. 87.5% of patients received adequate axSpA education at diagnosis and 76.5% of patients were aware of who to contact in the event of a flare.
These data highlighted that the mean time to diagnosis for both trusts was less than six years, somewhat lower than the 8.7 years national UK average. However, despite being specialist centres, we are a long way away from the NASS gold standard of 1 year time to diagnosis. Contributors to this include lack of awareness about axSpA, its recognition and appropriate onwards referral. There is a need for concerted ways of working, development of patient pathways, and education to reduce this delay and allow the ambitious NASS gold standard of 1 year time to diagnosis to be achieved.
Measure . | . | Royal Free . | Salford Royal . |
---|---|---|---|
Responses (N) | 42 | 46 | |
Age, years (mean) | 41 | 42 | |
Sex, male (%) | 59.5% | 72% | |
BASDAI score (range) | 1-9 | 0.4-9.0 | |
On biologics, yes (%) | 64.3% | 66.6% | |
Primary language - English (%) | 76.2% | 98% | |
Primary language - other (%) | 23.8% (French, Romanian, Bulgarian, Kurdish, Turkish, Hungarian, Passto, Tamil, Portuguese) | 2% (1 person; Polish) | |
Ethnicity - White British (%) | 47.6% | 93.5% | |
Ethnicity - other (%) | 52.4% (Romanian, Turkish, Ashkenazi Jewish, Pashtun, Japanese, Brazilian, Cypriot, Asian, African, Caribbean) | 6.5% (Japanese, Jewish, Polish) | |
Majority area (%) | 73.8% (Barnet, Enfield, Hertfordshire) | 60% (Salford) | |
Area - other (%) | 26.2 % (Greenwich, Harringay, Bedfordshire, Ruislip, Camden, Redbridge, Harrow, Chingford, Surrey, Buckinghamshire) | 33.3% (Greater Manchester, but not Salford)6.6% (North-West, but not Greater Manchester) | |
Average time between first experiencing inflammatory back pain symptoms and being referred to rheumatology (mean years) | 4.12 | 5.54 | |
Average number of consults with health care professionals between symptom onset and onwards referral to rheumatology | GP | 3.93 | 5.0 |
Physiotherapist | 3.13 | 3.47 | |
Osteopath | 1.64 | 0.53 | |
Chiropractor | 0.94 | 0.59 | |
Orthopaedic surgeon | 0.916 | 0.12 | |
Pain consultant | 0.74 | 0.06 | |
Other HCP | 0.61 (musculoskeletal, neurology, trauma, back pain) | 0.47 (gastroenterology, dermatology, ophthalmology) | |
Average time between first experiencing inflammatory back pain symptoms and receiving an axSpA diagnosis (mean years) | 5.72 | 5.96 | |
Average time between being referred to rheumatology and receiving an axSpA diagnosis (mean years) | 1.6 | 0.42 |
Measure . | . | Royal Free . | Salford Royal . |
---|---|---|---|
Responses (N) | 42 | 46 | |
Age, years (mean) | 41 | 42 | |
Sex, male (%) | 59.5% | 72% | |
BASDAI score (range) | 1-9 | 0.4-9.0 | |
On biologics, yes (%) | 64.3% | 66.6% | |
Primary language - English (%) | 76.2% | 98% | |
Primary language - other (%) | 23.8% (French, Romanian, Bulgarian, Kurdish, Turkish, Hungarian, Passto, Tamil, Portuguese) | 2% (1 person; Polish) | |
Ethnicity - White British (%) | 47.6% | 93.5% | |
Ethnicity - other (%) | 52.4% (Romanian, Turkish, Ashkenazi Jewish, Pashtun, Japanese, Brazilian, Cypriot, Asian, African, Caribbean) | 6.5% (Japanese, Jewish, Polish) | |
Majority area (%) | 73.8% (Barnet, Enfield, Hertfordshire) | 60% (Salford) | |
Area - other (%) | 26.2 % (Greenwich, Harringay, Bedfordshire, Ruislip, Camden, Redbridge, Harrow, Chingford, Surrey, Buckinghamshire) | 33.3% (Greater Manchester, but not Salford)6.6% (North-West, but not Greater Manchester) | |
Average time between first experiencing inflammatory back pain symptoms and being referred to rheumatology (mean years) | 4.12 | 5.54 | |
Average number of consults with health care professionals between symptom onset and onwards referral to rheumatology | GP | 3.93 | 5.0 |
Physiotherapist | 3.13 | 3.47 | |
Osteopath | 1.64 | 0.53 | |
Chiropractor | 0.94 | 0.59 | |
Orthopaedic surgeon | 0.916 | 0.12 | |
Pain consultant | 0.74 | 0.06 | |
Other HCP | 0.61 (musculoskeletal, neurology, trauma, back pain) | 0.47 (gastroenterology, dermatology, ophthalmology) | |
Average time between first experiencing inflammatory back pain symptoms and receiving an axSpA diagnosis (mean years) | 5.72 | 5.96 | |
Average time between being referred to rheumatology and receiving an axSpA diagnosis (mean years) | 1.6 | 0.42 |
Measure . | . | Royal Free . | Salford Royal . |
---|---|---|---|
Responses (N) | 42 | 46 | |
Age, years (mean) | 41 | 42 | |
Sex, male (%) | 59.5% | 72% | |
BASDAI score (range) | 1-9 | 0.4-9.0 | |
On biologics, yes (%) | 64.3% | 66.6% | |
Primary language - English (%) | 76.2% | 98% | |
Primary language - other (%) | 23.8% (French, Romanian, Bulgarian, Kurdish, Turkish, Hungarian, Passto, Tamil, Portuguese) | 2% (1 person; Polish) | |
Ethnicity - White British (%) | 47.6% | 93.5% | |
Ethnicity - other (%) | 52.4% (Romanian, Turkish, Ashkenazi Jewish, Pashtun, Japanese, Brazilian, Cypriot, Asian, African, Caribbean) | 6.5% (Japanese, Jewish, Polish) | |
Majority area (%) | 73.8% (Barnet, Enfield, Hertfordshire) | 60% (Salford) | |
Area - other (%) | 26.2 % (Greenwich, Harringay, Bedfordshire, Ruislip, Camden, Redbridge, Harrow, Chingford, Surrey, Buckinghamshire) | 33.3% (Greater Manchester, but not Salford)6.6% (North-West, but not Greater Manchester) | |
Average time between first experiencing inflammatory back pain symptoms and being referred to rheumatology (mean years) | 4.12 | 5.54 | |
Average number of consults with health care professionals between symptom onset and onwards referral to rheumatology | GP | 3.93 | 5.0 |
Physiotherapist | 3.13 | 3.47 | |
Osteopath | 1.64 | 0.53 | |
Chiropractor | 0.94 | 0.59 | |
Orthopaedic surgeon | 0.916 | 0.12 | |
Pain consultant | 0.74 | 0.06 | |
Other HCP | 0.61 (musculoskeletal, neurology, trauma, back pain) | 0.47 (gastroenterology, dermatology, ophthalmology) | |
Average time between first experiencing inflammatory back pain symptoms and receiving an axSpA diagnosis (mean years) | 5.72 | 5.96 | |
Average time between being referred to rheumatology and receiving an axSpA diagnosis (mean years) | 1.6 | 0.42 |
Measure . | . | Royal Free . | Salford Royal . |
---|---|---|---|
Responses (N) | 42 | 46 | |
Age, years (mean) | 41 | 42 | |
Sex, male (%) | 59.5% | 72% | |
BASDAI score (range) | 1-9 | 0.4-9.0 | |
On biologics, yes (%) | 64.3% | 66.6% | |
Primary language - English (%) | 76.2% | 98% | |
Primary language - other (%) | 23.8% (French, Romanian, Bulgarian, Kurdish, Turkish, Hungarian, Passto, Tamil, Portuguese) | 2% (1 person; Polish) | |
Ethnicity - White British (%) | 47.6% | 93.5% | |
Ethnicity - other (%) | 52.4% (Romanian, Turkish, Ashkenazi Jewish, Pashtun, Japanese, Brazilian, Cypriot, Asian, African, Caribbean) | 6.5% (Japanese, Jewish, Polish) | |
Majority area (%) | 73.8% (Barnet, Enfield, Hertfordshire) | 60% (Salford) | |
Area - other (%) | 26.2 % (Greenwich, Harringay, Bedfordshire, Ruislip, Camden, Redbridge, Harrow, Chingford, Surrey, Buckinghamshire) | 33.3% (Greater Manchester, but not Salford)6.6% (North-West, but not Greater Manchester) | |
Average time between first experiencing inflammatory back pain symptoms and being referred to rheumatology (mean years) | 4.12 | 5.54 | |
Average number of consults with health care professionals between symptom onset and onwards referral to rheumatology | GP | 3.93 | 5.0 |
Physiotherapist | 3.13 | 3.47 | |
Osteopath | 1.64 | 0.53 | |
Chiropractor | 0.94 | 0.59 | |
Orthopaedic surgeon | 0.916 | 0.12 | |
Pain consultant | 0.74 | 0.06 | |
Other HCP | 0.61 (musculoskeletal, neurology, trauma, back pain) | 0.47 (gastroenterology, dermatology, ophthalmology) | |
Average time between first experiencing inflammatory back pain symptoms and receiving an axSpA diagnosis (mean years) | 5.72 | 5.96 | |
Average time between being referred to rheumatology and receiving an axSpA diagnosis (mean years) | 1.6 | 0.42 |
J.K. Pandhal: None. W.J. Gregory: Honoraria; W.G. has received speaker, conference registration and advisory board fees from Abbvie, Pfizer Novartis and UCB. H. Tahir: None. S. Bamford: None.
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