scholarly journals POS0059-PARE DELAY TO DIAGNOSIS IN AXIAL SPONDYLOARTHRITIS – TIME FOR A GOLD STANDARD APPROACH

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 235.3-236
Author(s):  
D. Webb ◽  
K. Gaffney ◽  
R. Sengupta ◽  
S. S. Zhao ◽  
L. Swingler

Background:In the UK, the average time to diagnosis of axial SpA is 8.5 years (1). There is little evidence this has improved, despite the acceptance of MRI use in diagnosis (2). A recent review identified significant clinical, economic and humanistic burden from delayed diagnosis (3). Urgent action is needed to ensure delayed diagnosis is not normalized.Objectives:We created a proposal for a Gold Standard time to diagnosis for axial SpA and a national implementation plan (4) through consensus development with patients, healthcare professionals and professional bodies.Methods:A.A scoping literature review identifying where delays occur, from first symptom onset to diagnosis by a rheumatologist, and potential solutions. From this, a summary report / draft plan was produced for consultationB.A national consultation survey to elicit views on the proposals from clinicians, healthcare professionals, professional societies and patientsC.Structured feedback to written proposals via e-consultation with clinicians and patientsD.A consensus development workshop to finalise the Gold Standard and implementation plan.Results:The literature review identified four delays:1. People do not know axial SpA may be a cause of their chronic back pain2. Primary care practitioners may not recognise features of axial SpA3. People may be referred to non-rheumatologists who may not recognise axial SpA promptly4. Rheumatology and radiology teams may not optimally request or interpret investigations.202 participants responded to the summary report (74% patients, 21% healthcare professsionals, 5% professional societies). All supported the principles behind the gold standard time to diagnosis. Qualitive analysis confirmed agreement with the proposed solutions, underscoring the importance of education and visibility for axial SpA within primary care and increased public awareness. Additional proposals were suggested, including a tool in primary care to run audits on IT systems.40 clinicians contributed to the e-consultation and 55 clinicians, policy makers, social marketing experts, health journalists and patients attended the consensus workshop. Consensus was reached on a gold standard time to diagnosis of one year, and the principles, key components and phasing of the implemention plan. This included: public awareness about axial SpA symptoms; a primary care clinical champions programme; creating a referral pathway from primary care direct to rheumatology; a secondary care service educational programme.Conclusion:There is consensus from UK axial SpA clinicians, patients and professional societies on the need for a Gold Standard time to diagnosis of axial SpA of one year, so that patients can live happy, healthy and productive lives.References:[1]Hamilton L, Gilbert A, Skerett J, et al. Services for people with ankylosing spondylitis in the UK - a survey of rheumatologists and patients. Rheumatology 2011:50:1991[2]Sykes MP, Doll H, R Sengupta, Gaffney, K. Delay to diagnosis in axial spondyloarthritis: are we improving in the UK? Rheumatology, July 2015[3]Yi E, Ahuja A, Rajput T, et al. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther. 2020 Mar;7(1):65–87.[4]Webb D, Zhao S, Whalley S, et al. Gold Standard Time to Diagnosis in axial Spondyloarthritis: Consultation Document. 2020, NASS.Disclosure of Interests:Dale Webb Speakers bureau: Janssen, Novartis, Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB, Karl Gaffney Speakers bureau: Abbvie, Lilly, Novartis, UCB, Consultant of: Abbvie, Celltrion, Lilly, Grant/research support from: Abbvie, Pfizer, Lilly, UCB, Raj Sengupta Speakers bureau: Abbvie, Biogen, Celgene, Novartis, Roche, UCB, Consultant of: Advisory boards for Abbvie, Biogen, Novartis, UCB, Grant/research support from: Abbvie, Celgene, Novartis, Sizheng Steven Zhao: None declared, Lisa Swingler Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB.

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 167.2-168
Author(s):  
J. Hamilton ◽  
D. Webb ◽  
S. Whalley

Background:Research carried out in 2016 by NASS showed that the range and quality of axial spondyloarthritis (axial SpA) services generally offered around the UK were variable 1. The publication by the regulator, the National Institute for Health and Care Excellence (NICE), of a Guideline for Spondyloarthritis (NG65) in 2017 2 and the corresponding Quality Standard (QS170) in 2018 3, for the first time provided national guidance and standards of services that should be available for people with axial SpA. National oversight of the implementation of these however was missing.Objectives:NASS worked with Parliamentarians to establish the All-Party Parliamentary Group for Axial Spondyloarthritis in January 2019. We gave it a very specific objective - to oversee the implementation of NH65 and QS170. The group seeks to improve axial SpA services in England whilst raising awareness of the condition at a parliamentary level, working closely with NASS.Methods:The group is a unique forum in the UK, bringing together patients, clinicians, researchers, policy makers, national bodies and parliamentarians. The group has met five times covering a range of topics including the delay to diagnosis, the uptake of NG65 and hydrotherapy.In 2019 the group carried out a national inquiry into the standards of axial SpA services in the UK, developing a ten-question quality framework, based largely on the NICE Guideline recommendations and Quality Standard. In July 2020 a meeting was convened to discuss the impact of COVID-19 on axial SpA services. The meeting presented research carried out by NASS and M&F Health with patients and clinicians respectively.Results:The results of the national inquiry for England were published in January 2020 4. The inquiry found that large discrepancies remain in the provision of axial SpA services. Only 21% of local commissioning bodies have an inflammatory back pain pathway, and less than half of NHS providers have a specialist axial SpA clinic.The results of COVID survey shows significant impacts on the health of axial SpA patients and on the availability and modality of rheumatology services. The APPG later published a report with a set of recommendations 5, creating minimum service specifications for axial SpA services during crisis periods such as the recent pandemic, as well as service recovery. Comment on this research was also published in The Lancet Rheumatology 6.In September 2020 the work of the APPG led to a debate in Parliament on delayed diagnosis in axial SpA.Discussions on the future of hydrotherapy services has resulted in the mobilisation of stakeholders across condition areas.Conclusion:All All Party Parliamentary Group is already proving to be an effective political lever to improve axial SpA care. It has shown huge variations in the standard of care and provision of services still remain and has brought this to the attention of Parliamentarians, policy makers and clinicians.References:[1]Mohammed H Derakhshan, Himanshu Pathak, Debbie Cook, Sally Dickinson, Stefan Siebert, Karl Gaffney, NASS and BRITSpA investigators, Services for spondyloarthritis: a survey of patients and rheumatologists, Rheumatology, February 2018[2]Spondyloarthritis in over 16s: diagnosis and management (NG65), https://www.nice.org.uk/guidance/ng65, February 2017[3]Spondyloarthritis (QS170), https://www.nice.org.uk/guidance/qs170, June 2018[4]Axial Spondyloarthritis Services in England – A national inquiry, https://nass.co.uk/wp-content/uploads/2020/01/Axial-Spondyloarthritis-Services-in-England-FINAL.pdf, January 2020[5]COVID-19 & Axial SpA: Government Recommendation Paper, https://nass.co.uk/wp-content/uploads/2020/10/APPG-Recommendation-Paper-COVID-19-Axial-SpA-for-website-1.pdf, October 2020[6]Helena Marzo Ortega, Simon Whalley, Jill Hamilton, Dale Webb, COVID-19 in axial spondyloarthritis care provision: helping to straighten the long and winding road, https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30413-6/fulltext, 1 December 2020Disclosure of Interests:Jill Hamilton Grant/research support from: Funding was received from Novartis to support APPG 1, 2 and 4, Dale Webb Grant/research support from: Funding was received from Novartis for APPG 1, 2 and 4, Simon Whalley: None declared


2018 ◽  
Vol 32 (4) ◽  
pp. 489-499 ◽  
Author(s):  
Omer Gendelman ◽  
Howard Amital ◽  
Yael Bar-On ◽  
Dana Ben-Ami Shor ◽  
Daniela Amital ◽  
...  

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 757-757
Author(s):  
M. Al-Attar ◽  
W. J. Gregory ◽  
J. Mcbeth ◽  
W. Dixon

Background:Patients with Axial Spondyloarthritis (AxSpA) often suffer a significant delay to diagnosis. This is associated with poorer outcomes in quality of life, functional capabilities and work productivity [1]. These patients are frequent consulters to primary care in the years preceding rheumatology referral [2]. We hypothesise that analysis of primary care consultation patterns may identify as-yet undiagnosed disease, and suggest that implementing an automated diagnostic algorithm may support early action in primary care.Objectives:To undertake a preliminary exploration of primary care consultation patterns in patients with a delayed diagnosis of AxSpA and identify themes for further research.Methods:The study was run in Salford, UK, where unique linkage exists across electronic health records (EHR) from primary and secondary care. A dataset of patients with AxSpA was obtained from 2018-2020 hospital physiotherapy clinic records. Ten patients with a time to diagnosis ≥ 5 years were randomly selected for this exploratory analysis. Diagnostic delay was calculated based on rheumatology clinic letter documentation. Age, sex, and HLA-B27 status were recorded. All “Problem” codes from the primary care EHR up to the point of diagnosis were manually reviewed.Results:Age at diagnosis was 32-49 years with seven males and three females. Seven were HLA-B27 positive. The average delay to diagnosis was 15.8 years (range 5-30).On average, patients had 15 primary care consultations (range 5-24) between first coded AxSpA-related symptom and rheumatology referral. Around half of these codes were potentially AxSpA-related (for example, see Figure 1).Six patients had a coded history of back pain. Two patients presented with other axial symptoms, including: rib pain, MSK chest pain and sciatica.Five patients presented with peripheral joint symptoms, including: ankle pain, shoulder pain, knee problem, pain in arm, medial epicondylitis elbow, hip pain and groin pain. Of these, four had multiple presentations and three had a previous visit with axial pain.Two patients had uveitis preceding axial symptoms. One patient had peripheral joint symptoms (hip pain) preceding uveitis.Inconsistent codes were used for the same problem presenting at different times in nine cases, including: back pain, backache, low back pain, lower back pain.Other relevant codes were used in seven cases, including: stiffness, arthritis, saw physiotherapist and referred to pain clinic.Figure 1 illustrates the consultation pattern for a male patient who first presented to primary care with back pain at the age of 35. Despite a relatively typical presentation, his diagnosis was made incidentally 10 years later after an ESR was checked for unrelated reasons. He was significantly disabled in function at the point of being referred to rheumatology.Conclusion:Our preliminary analysis suggests that patients with a delayed diagnosis of AxSpA have repeated primary care visits with potentially recognisable symptoms of their disease. These findings support the feasibility of future automated detection, with areas of focus including recognition of non-back pain axial symptoms, extra-articular manifestations, and peripheral joint symptoms.Whilst half of presentations were not directly AxSpA-related, modern machine learning techniques have the ability to explore whether the pattern or frequency of these consultations are relevant to identifying undiagnosed disease. Such methods can also highlight patterns obscured by extensive data sets and inconsistent coding, with opportunity for implementation back into primary care.References:[1]Redeker I et al. Determinants of diagnostic delay in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data. Rheumatology (Oxford) 2019;58:1634–8.[2]Yi E et al. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther. 2020;7(1):65–87Disclosure of Interests:None declared.


BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e031537
Author(s):  
Kathryn Mansfield ◽  
Elizabeth Crellin ◽  
Rachel Denholm ◽  
Jennifer K Quint ◽  
Liam Smeeth ◽  
...  

BackgroundSince 2010 the National Institute for Health and Care Excellence has recommended screening adults for excessive alcohol consumption to try and help prevent alcohol-use disorders. Little is known about the extent to which these recommendations are followed, and the resulting completeness and validity of alcohol-related data recording in primary care.ObjectiveTo investigate the completeness and accuracy of recording of alcohol use within primary care records in the UK.Design and settingCross-sectional study in the Clinical Practice Research Datalink.ParticipantsWe included all adult patients registered on 1st January 2018 with ≥1 year of follow-up.Primary and secondary outcome measuresWe calculated prevalence of alcohol consumption recording overall and within patient groups. We then validated alcohol consumption data against recommended screening tools (Alcohol Use Disorders Identification Test (AUDIT)) as the gold standard. We also calculated how prevalence of alcohol recording changed over the preceding decade.ResultsIn 2018, among 1.8 million registered adult patients, just over half (51.9%) had a record for a code related to alcohol in the previous 5 years. Recording of alcohol consumption was more common among women, older people, ex-smokers and those from more deprived areas, who were overweight/obese, or with comorbidities. A quarter of patients had units per week recorded in the last 5 years, but <10% had an AUDIT or Fast Alcohol Screening Test (FAST) alcohol screening test score. The recorded alcohol measures corresponded to results from gold standard AUDIT scores. The distribution of consumption among current drinkers was similar to the Health Survey for England.ConclusionsHalf of adults in UK primary care have no recorded alcohol consumption data. When consumption is recorded, we have demonstrated internal and external validity of the data, suggesting greater recording may help identify opportunities for interventions to reduce harms.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 521.1-521
Author(s):  
S. H. Liu ◽  
K. Lapane ◽  
D. Shridharmurthy ◽  
S. Khan ◽  
K. Ferrucci ◽  
...  

Background:The average delay in diagnosis for patients with any form of spondyloarthritis (SpA) ranges from 7 to 10 years [1–5]. In axial spondyloarthritis (axSpA), a subgroup of SpA, it is 5 to 14 years [4, 6, 7]. Factors that contribute to this delay include the lack of diagnostic criteria for axSpA and the difficulty in distinguishing inflammatory back pain (IBP), a key symptom of axSpA, from other highly prevalent forms of low back pain [8–10]. This impedes timely referral of these patients to rheumatologic care and initiation of appropriate treatment.Objectives:Describe understanding of, attitudes towards, and practices regarding axSpA among primary care physicians.Methods:We recruited 18 primary care physicians practicing in the United States as part of a larger qualitative study: theSpondyloArthritisScreening andEarlyDetection (SpA-SED) Study. We used purposive sampling with a goal of including an equal number of family medicine and internal medicine physicians who were balanced by gender. Physicians provided informed consent to participate in an in-depth interview (up to 60 minutes), conducted in person (n = 3) or over the phone (n = 15), between February and May 2019. The interview guide was developed by a multidisciplinary team, with input from rheumatologists. Topics included the physicians’ approaches to evaluating back pain, their awareness about axSpA, their differential diagnosis of axSpA, the laboratory tests and imaging studies ordered when axSpA is suspected, their referral patterns for patients with presumed axSpA, their thoughts about factors contributing to diagnostic delay in axSpA, and their opinions about an Inflammatory Back Pain Assessment – ASAS criteria screening tool [5].Results:Barriers to early diagnosis included patient factors (eg, multiple complaints, back pain not being the chief complaint), disease characteristics (eg, slow rate of disease progression), physician characteristics (eg, lack of rapport between patients and their primary care physicians), and structural/system issues (eg, lack of time). Most physicians reported that they would perform laboratory tests before referring a patient to a rheumatologist.Conclusion:Primary care physicians were surprised to learn of the average delay to axSpA diagnosis, considered that this lengthy delay was problematic, and agreed that improvements are needed in screening for and early detection of axSpA. Physicians believed that there would be a role for using a screening tool in the primary care setting to improve diagnostic delay, but that evidence to support its implementation is needed.References:[1]Dougados M et al.Arthritis Rheum.1991;34:1218–27.[2]Amor B et al.Rev Rhum Mal Osteoartic.1990;57:85–9.[3]van der Linden S et al.Arthritis Rheum.1984;27:361–8.[4]Deodhar A et al.Arthritis Rheumatol.2016;68:1669–76.[5]Sieper J et al.Ann Rheum Dis.2009;68:784–8.[6]Sykes MP et al.Rheumatology (Oxford).2015;54:2283–4.[7]Redeker I et al.Rheumatology (Oxford).2019;58:1634–8.[8]Strand V et al.Mayo Clin Proc.2017;92:555–64.[9]Proft F et al.Ther Adv Musculoskelet Dis. 2018;10:129–39.[10]Bohn R et al.Clin Exp Rheumatol.2018;36: 263–74.Acknowledgments:We thank the participants for sharing their insights as part of this study. This abstract was written using data from a research study originally funded by Novartis (Principal Investigator: Shao-Hsien Liu, Co-Investigators: Jonathan Kay, Kate Lapane, Catherine Dubé).Disclosure of Interests:Shao-Hsien Liu Grant/research support from: Novartis Pharmaceuticals Corporation, Kate Lapane Grant/research support from: Novartis Pharmaceuticals Corporation, Divya Shridharmurthy Grant/research support from: Novartis Pharmaceuticals Corporation, Sara Khan Grant/research support from: Novartis Pharmaceuticals Corporation, Katarina Ferrucci Grant/research support from: Novartis Pharmaceuticals Corporation, Catherine Dubé Grant/research support from: Novartis Pharmaceuticals Corporation, Esther Yi Employee of: Novartis Pharmaceuticals Corporation, Jonathan Kay Grant/research support from: Gilead Sciences, Inc., Pfizer, Novartis Pharmaceuticals Corporation, Consultant of: Alvotech Suisse AG; Arena Pharmaceuticals, Inc.; Boehringer Ingelheim GmbH; Celltrion Healthcare Co. Ltd.; Merck Sharp & Dohme Corp.; Mylan Inc.; Novartis AG; Samsung Bioepis; Sandoz, Inc; UCB, Inc.


Eye ◽  
2021 ◽  
Author(s):  
Sana Hamid ◽  
Parul Desai ◽  
Pirro Hysi ◽  
Jennifer M. Burr ◽  
Anthony P. Khawaja

AbstractEffective population screening for glaucoma would enable earlier diagnosis and prevention of irreversible vision loss. The UK National Screening Committee (NSC) recently published a review that examined the viability, effectiveness and appropriateness of a population-based screening programme for primary open-angle glaucoma (POAG). In our article, we summarise the results of the review and discuss some future directions that may enable effective population screening for glaucoma in the future. Two key questions were addressed by the UK NSC review; is there a valid, accurate screening test for POAG, and does evidence exist that screening reduces morbidity from POAG compared with standard care. Six new studies were identified since the previous 2015 review. The review concluded that screening for glaucoma in adults is not recommended because there is no clear evidence for a sufficiently accurate screening test or for better outcomes with screening compared to current care. The next UK NSC review is due to be conducted in 2023. One challenge for POAG screening is that the relatively low disease prevalence results in too many false-positive referrals, even with an accurate test. In the future, targeted screening of a population subset with a higher prevalence of glaucoma may be effective. Recent developments in POAG polygenic risk prediction and deep learning image analysis offer potential avenues to identifying glaucoma-enriched sub-populations. Until such time, opportunistic case finding through General Ophthalmic Services remains the primary route for identification of glaucoma in the UK and greater public awareness of the service would be of benefit.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 49.1-50
Author(s):  
S. Swain ◽  
C. Coupland ◽  
V. Strauss ◽  
C. Mallen ◽  
C. F. Kuo ◽  
...  

Background:Multimorbidity (≥2 chronic conditions) escalates the risk of adverse health outcomes. However, its burden in people with osteoarthritis (OA) remains largely unknown.Objectives:To identify the clusters of patients with multimorbidity and associated factors in OA and non-OA populations and to estimate the risk of developing multimorbidity clusters after the index date (after diagnosis).Methods:The study used the Clinical Practice Research Datalink – a primary care database from the UK. Firstly, age, sex and practice matched OA and non-OA people aged 20+ were identified to explore patterns and associations of clusters of multimorbidity within each group. Non-OA controls were assigned with same index date as that of matched OA cases. Secondly, multimorbidity trajectories for 20 years after the index date were examined in people without any comorbidities at baseline in both OA and non-OA groups. Latent class analysis was used to identify clusters and latent class growth modelling was used for cluster trajectories. The associations between clusters and age, sex, body mass index (BMI), alcohol use, smoking habits at baseline were quantified through multinomial logistic regression.Results:In total, 47 long-term conditions were studied in 443,822 people (OA- 221922; non-OA- 221900), with a mean age of 62 years (standard deviation ± 13 years), and 58% being women. The prevalence of multimorbidity was 76.6% and 68.9% in the OA and non-OA groups, respectively. In the OA group five clusters were identified including relatively healthy (18%), ‘cardiovascular (CVD) and musculoskeletal (MSK)’ (12.3%), metabolic syndrome (28.2%), ‘pain and psychological (9.1%), and ‘musculoskeletal’ (32.4%). The non-OA group had similar patterns except that the ‘pain+ psychological’ cluster was replaced by ‘thyroid and psychological’. (Figure 1) Among people with OA, ‘CVD+MSK’ and metabolic syndrome clusters were strongly associated with obesity with a relative risk ratio (RRR) of 2.04 (95% CI 1.95-2.13) and 2.10 (95% CI 2.03-2.17), respectively. Women had four times higher risk of being in the ‘pain+ psychological’ cluster than men when compared to the gender ratio in the healthy cluster, (RRR 4.28; 95% CI 4.09-4.48). In the non-OA group, obesity was significantly associated with all the clusters.Figure 1: Posterior probability distribution of chronic conditions across the clusters in Osteoarthritis (OA, n=221922) and Non-Osteoarthritis (Non-OA, n=221900) group. COPD- Chronic Obstructive Pulmonary Disease; CVD- Cardiovascular; MSK- MusculoskeletalOA (n=24139) and non-OA (n=24144) groups had five and four multimorbidity trajectory clusters, respectively. Among the OA population, 2.7% had rapid onset of multimorbidity, 9.5% had gradual onset and 11.6% had slow onset, whereas among the non-OA population, there was no rapid onset cluster, 4.6% had gradual onset and 14.3% had slow onset of multimorbidity. (Figure 2)Figure 2: Clusters of multimorbidity trajectories after index date in OA (n=24139) and Non-OA (n=24144)Conclusion:Distinct identified groups in OA and non-OA suggests further research for possible biological linkage within each cluster. The rapid onset of multimorbidity in OA should be considered for chronic disease management.Supported by:Acknowledgments:We would like to thank the University of Nottingham, UK, Beijing Joint Care Foundation, China and Foundation for Research in Rheumatology (FOREUM) for supporting the study.Disclosure of Interests:Subhashisa Swain: None declared, Carol Coupland: None declared, Victoria Strauss: None declared, Christian Mallen Grant/research support from: My department has received financial grants from BMS for a cardiology trial., Chang-Fu Kuo: None declared, Aliya Sarmanova: None declared, Michael Doherty Grant/research support from: AstraZeneca funded the Nottingham Sons of Gout study, Consultant of: Advisory borads on gout for Grunenthal and Mallinckrodt, Weiya Zhang Consultant of: Grunenthal for advice on gout management, Speakers bureau: Bioiberica as an invited speaker for EULAR 2016 satellite symposium


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