scholarly journals POS0959 DIAGNOSTIC DELAY IN AXIAL SPONDYLOARTHRITIS: RESULTS FROM THE NATIONAL EARLY INFLAMMATORY ARTHRITIS AUDIT

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 744.1-744
Author(s):  
M. Russell ◽  
F. Coath ◽  
M. Yates ◽  
K. Bechman ◽  
S. Norton ◽  
...  
Keyword(s):  
Inflammatory Arthritis ◽  
Clinical Characteristics ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
British Society ◽  
Standards Of Care ◽  
Symptom Duration ◽  
Research Support ◽  
England And Wales ◽  
Early Inflammatory Arthritis

Background:Diagnostic delay is a significant problem in axial spondyloarthritis (axSpA), and there is a growing body of evidence showing that delayed axSpA diagnosis is associated with worse clinical, humanistic and economic outcomes.1 International guidelines have been published to inform referral pathways and improve standards of care for patients with axSpA.2,3Objectives:To describe the sociodemographic and clinical characteristics of newly-referred patients with axSpA in England and Wales in the National Early Inflammatory Arthritis Audit (NEIAA), with rheumatoid arthritis (RA) and mechanical back pain (MBP) as comparators.Methods:The NEIAA captures data on all new patients over the age of 16 referred with suspected inflammatory arthritis to rheumatology departments in England and Wales.4 We describe baseline sociodemographic and clinical characteristics of axSpA patients (n=784) recruited to the NEIAA between May 2018 and March 2020, compared with RA (n=9,270) and MBP (n=370) during the same period.Results:Symptom duration prior to initial rheumatology assessment was significantly longer in axSpA than RA patients (p<0.001), and non-significantly longer in axSpA than MBP patients (p=0.062): 79.7% of axSpA patients had symptom durations of >6 months, compared to 33.7% of RA patients and 76.0% of MBP patients; 32.6% of axSpA patients had symptom durations of >5 years, compared to 3.5% of RA patients and 24.6% of MBP patients (Figure 1A). Following referral, median time to initial rheumatology assessment was longer for axSpA than RA patients (36 vs. 24 days; p<0.001), and similar to MBP patients (39 days; p=0.30). The proportion of axSpA patients assessed within 3 weeks of referral increased from 26.7% in May 2018 to 34.7% in March 2020; compared to an increase from 38.2% to 54.5% for RA patients (Figure 1B). A large majority of axSpA referrals originated from primary care (72.4%) or musculoskeletal triage services (14.1%), with relatively few referrals from gastroenterology (1.9%), ophthalmology (1.4%) or dermatology (0.4%).Of the subset of patients with peripheral arthritis requiring EIA pathway follow-up, fewer axSpA than RA patients had disease education provided (77.5% vs. 97.8%; p<0.001), and RA patients reported a better understanding of their condition (p<0.001). HAQ-DI scores were lower at baseline in axSpA EIA patients than RA EIA patients (0.8 vs 1.1, respectively; p=0.004), whereas baseline Musculoskeletal Health Questionnaire (MSK-HQ) scores were similar (25 vs. 24, respectively; p=0.49). The burden of disease was substantial across the 14 domains comprising MSK-HQ in both axSpA and RA (Figure 1C).Conclusion:We have shown that diagnostic delay remains a major challenge in axSpA, despite improved disease understanding and updated referral guidelines. Patient education is an unmet need in axSpA, highlighting the need for specialist clinics. MSK-HQ scores demonstrated that the functional impact of axSpA is no less than for RA, whereas HAQ-DI may underrepresent disability in axSpA.References:[1]Yi E, Ahuja A, Rajput T, George AT, Park Y. Clinical, economic, and humanistic burden associated with delayed diagnosis of axial spondyloarthritis: a systematic review. Rheumatol Ther. 2020;7:65-87.[2]NICE. Spondyloarthritis in over 16s: diagnosis and management. 2017.[3]van der Heijde D, Ramiro S, Landewe R, et al. 2016 update of the ASAS-EULAR management recommendations for axial spondyloarthritis. Ann Rheum Dis. 2017;76(6):978-91.[4]British Society for Rheumatology. National Early Inflammatory Arthritis Audit (NEIAA) Second Annual Report. 2021.Acknowledgements:The National Early Inflammatory Arthritis Audit is commissioned by the Healthcare Quality Improvement Partnership, funded by NHS England and Improvement, and the Welsh Government, and carried out by the British Society for Rheumatology, King’s College London and Net Solving.Disclosure of Interests:Mark Russell Grant/research support from: UCB, Pfizer, Fiona Coath: None declared, Mark Yates Grant/research support from: UCB, Abbvie, Katie Bechman: None declared, Sam Norton: None declared, James Galloway Grant/research support from: Abbvie, Celgene, Chugai, Gilead, Janssen, Lilly, Pfizer, Roche, UCB, Jo Ledingham: None declared, Raj Sengupta Grant/research support from: AbbVie, Biogen, Celgene, Lilly, MSD, Novartis, Pfizer, Roche, UCB, Karl Gaffney Grant/research support from: AbbVie, Biogen, Cellgene, Celltrion, Janssen, Lilly, Novartis, Pfizer, Roche, UCB.

THU0400 CLINICAL COURSE OF EARLY AXIAL SPONDYLOARTHRITIS OVER TEN YEARS: LONG-TERM RESULTS FROM THE GERMAN SPONDYLOARTHRITIS INCEPTION COHORT

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 437-437
Author(s):  
D. Poddubnyy ◽  
V. Rios Rodriguez ◽  
M. Torgutalp ◽  
M. Verba ◽  
J. Callhoff ◽  
...  
Keyword(s):  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Clinical Course ◽  
Symptom Duration ◽  
Disease Course ◽  
Inception Cohort ◽  
Research Support ◽  
Low Disease Activity ◽  
Similar Disease

Background:Previous studies showed that patients with non-radiographic and radiographic axial spondyloarthritis (nr- and r-axSpA) have similar disease burden and similar response to anti-inflammatory therapy given similar level of inflammatory activity. Only little is known, however, about long-term disease course in patients with early axSpA.Objectives:To investigate the long-term (up to 10 years) clinical course of patients with early axSpA.Methods:In total, 525 patients with early axSpA (r-axSpA with symptom duration ≤10 years and nr-axSpA with symptom duration ≤5 years) from the German Spondyloarthritis Inception Cohort (GESPIC) were included. The final patient classification was based on central reading results in 458 patients with available pelvic X-rays, and on local rheumatologist judgement in 67 patients. A total of 251 patients were finally classified as r-axSpA and 274 as nr-axSpA. Clinical evaluation, which included disease activity (BASDAI, C-reactive protein – CRP, ASDAS) as well as therapy recording, was performed at baseline and every 6 months thereafter until year 2 and annually thereafter till year 10. Treatment was conducted at the discretion of the local rheumatologist.Results:Since the cohort has started prior to introduction of TNF inhibitors (TNFi), only 2% patients received TNFi at baseline that increased to 23% at year 10 (15% in nr-axSpA and 31% in r-axSpA) – Figure 1. The use of NSAIDs and csDMARDs decreased in both groups (Figure 1), while use of systemic steroids did not change substantially (9% at baseline, 8% at year 10). The proportion of patients with low disease activity according to BASDAI (<4) was higher in r-axSpA as compared to nr-axSpA at almost all time points, while the proportion of patients with low disease activity according to ASDAS (<2.1), as well as with ASDAS inactive disease (<1.3) was similar between nr-axSpA and r-axSpA (Figure 2). In the group of patients who completed year 10 (n=134 in total, 68 with nr-axSpA, 67 with r-axSpA) the same trends in therapy and disease activity were observed.Conclusion:Patients with nr-axSpA and r-axSpA showed a similar disease course in terms of disease activity on the group level. The drop-out rate in this observational cohort was overall high, but comparable between groups. The lower proportion of patients with nr-axSpA being treated with TNFi might reflect a later introduction of TNFi for this indication.Acknowledgments:GESPIC has been financially supported by the German Federal Ministry of Education and Research as well as by Abbott, Amgen, Centocor, Schering–Plough, and Wyeth. From 2010 till 2019 GESPIC has been supported by Abbvie.Disclosure of Interests:Denis Poddubnyy Grant/research support from: AbbVie, MSD, Novartis, and Pfizer, Consultant of: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB, Valeria Rios Rodriguez Consultant of: Abbvie, Novartis, Murat Torgutalp: None declared, Maryna Verba: None declared, Johanna Callhoff: None declared, Mikhail Protopopov Consultant of: Novartis, Fabian Proft Grant/research support from: Novartis Pharma GmbH, Consultant of: Consultancy / speaker fees from: Abbvie, BMS, Celgene, Lilly, MSD, Novartis, Pfizer, Roche, UCB, Speakers bureau: Consultancy / speaker fees from: Abbvie, BMS, Celgene, Lilly, MSD, Novartis, Pfizer, Roche, UCB, Judith Rademacher: None declared, Hildrun Haibel Consultant of: Abbvie, Jansen, MSD, and Novartis, Speakers bureau: Abbvie, Jansen, MSD, and Novartis, Joachim Sieper Consultant of: AbbVie, Boehringer Ingelheim, Eli Lilly and Company, Janssen, Merck, Novartis, Pfizer, Roche, and UCB Pharma, Speakers bureau: AbbVie, Boehringer Ingelheim, Eli Lilly and Company, Janssen, Merck, Novartis, Pfizer, Roche, and UCB Pharma, Martin Rudwaleit Consultant of: AbbVie, BMS, Celgene, Janssen, Eli Lilly, MSD, Novartis, Pfizer, Roche, UCB Pharma

scholarly journals Real-world evidence of TNF inhibition in axial spondyloarthritis: can we generalise the results from clinical trials?

2020 ◽  
Vol 79 (7) ◽  
pp. 914-919 ◽  
Author(s):  
Gareth T Jones ◽  
Linda E Dean ◽  
Ejaz Pathan ◽  
Rosemary J Hollick ◽  
Gary J Macfarlane
Keyword(s):  
Clinical Trials ◽  
Ankylosing Spondylitis ◽  
Disease Activity ◽  
Treatment Response ◽  
Real World ◽  
Axial Spondyloarthritis ◽  
British Society ◽  
Symptom Duration ◽  
Clinical Records ◽  
Trial Participants

Management guidelines assume that results from clinical trials can be generalised, although seldom is data available to test this assumption. We aimed to determine the proportion of patients commencing tumour necrosis factor inhibition (TNFi) who would have been eligible for relevant clinical trials, and whether treatment response differs between these groups and the trials themselves. The British Society for Rheumatology Biologics Register for Ankylosing Spondylitis (BSRBR-AS) recruited a real-world cohort of TNFi-naïve spondyloarthritis patients with data collection from clinical records and patient questionnaires. Participant characteristics were extracted from trials identified from a recent Health Technology Assessment of TNFi for ankylosing spondylitis/non-radiographic axial spondyloarthritis. Descriptive statistics were used to determine the differences, including treatment response, between BSRBR-AS participants who would/would not have been eligible for the clinical trials and with trial participants. Among 2420 BSRBR-AS participants, those commencing TNFi (34%) had shorter symptom duration (15 vs 22 years) but more active disease (Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) 6.4 vs 4.0; Bath Ankylosing Spondylitis Disease Functional Index (BASFI) 6.2 vs 3.8). Of those commencing TNFi, 41% met eligibility criteria for ≥1 of fourteen relevant trials; they reported higher disease activity (BASDAI 6.9 vs 6.1) and poorer function (BASFI 6.6 vs 6.0). 61.7% of trial participants reported a positive treatment response, vs 51.3% of BSRBR-AS patients (difference: 10.4%; 95% CI 4.4% to 16.5%). Potential eligibility for trials did not influence treatment response (difference 2.0%; -9.4% to 13.4%). Fewer patients in the real world respond to TNFi than is reported in the trial literature. This has important implications for the generalisability of trial results, and the cost-effectiveness of TNFi agents.

scholarly journals POS0244 PATIENT JOURNEY WITH AXIAL SPONDYLOARTHRITIS: CRITICAL ISSUES FROM THE PATIENT PERSPECTIVE. RESULTS FROM THE EUROPEAN MAP OF AXIAL SPONDYLOARTHRITIS (EMAS)

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 343.2-344
Author(s):  
M. Garrido-Cumbrera ◽  
D. Poddubnyy ◽  
C. Bundy ◽  
L. Christen ◽  
R. Mahapatra ◽  
...  
Keyword(s):  
Disease Management ◽  
Disease Activity ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
X Rays ◽  
Research Support ◽  
Patient Journey ◽  
Medical Tests ◽  
Number Of Visits ◽  
Active Disease

Background:The journey of axial spondyloarthritis (axSpA) for most patients is slow and arduous.Objectives:The goal of this analysis is to describe the journey to diagnosis and further management in axSpA patients.Methods:2,846 unselected patients participated in EMAS, a cross-sectional study (2017-2018) across 13 European countries. Descriptive analysis of sociodemographic factors, insurance scheme, diagnostic journey and post diagnosis healthcare utilization was performed. Mann-Whitey test was used to analyse possible differences between BASDAI (>4 v ≤4) and the number of visits to healthcare professionals and follow-up tests undertaken.Results:Mean age was 43.9 years, 61.3% were female, 48.1% university educated, 67.9% married, 53.9% employed and 81.7% had public health insurance. Mean age at symptoms onset was 26.6 (11.1), while mean age at diagnosis was 33.7 (11.5) and mean diagnostic delay was 7.4 years. Over 50% had a diagnostic delay of ≥4 years. Prior to receiving a diagnosis, patients visited on average 2.6 specialists. The most commonly performed diagnostic tests were x-rays (72.3%), HLA B27 tests (65.4%) and MRIs (64.3%). 78.4% were diagnosed by a rheumatologist while 14.9% received their diagnosis by a GP. Patients who experienced a diagnostic delay of more than a year (n= 2,208) undertook a considerable number of visits to specialists and medical tests in the year prior to participating in EMAS, which increased with disease activity. Patients with active disease (BASDAI >4) reported a higher number of visits to rheumatologists (3.7±3.5 vs 2.9±2.6), general practitioners (6.6±10.0 vs 3.5±4.1), physiotherapists (19.3±25.0 vs 11.7±17.0), and psychologists/psychiatrists (3.4±10.7 vs 1.9±7.7). Patients with active disease also undertook more x-rays (1.8±2.8 vs. 1.3±1.9), MRI scans (0.9±1.2 vs. 0.6±1.1), and blood tests (4.7±4.4 vs 3.6±3.2). However, one in five patients visited the rheumatologist only once in the year prior to EMAS (21.1%).Conclusion:Diagnostic delay continues to be a key challenge in the axSpA patient journey, with patients waiting an average of 7.4 years and visiting multiple doctors prior to diagnosis. Once diagnosed, disease management presents a further challenge, as patients with higher disease activity reported more healthcare professional visits as well as medical tests. Safeguarding health and controlling healthcare utilization requires effective disease management, greater education for non-specialists, rapid referral routes for diagnosis and collaborative care between specialists and non-specialists.Figure 1.axSpA Patient journey according to EMASAcknowledgements:This study was supported by Novartis Pharma AG. The authors would like to thank all participants who participated in this study.Disclosure of Interests:Marco Garrido-Cumbrera: None declared, Denis Poddubnyy Consultant of: Abbvie, BMS, Celgene, Janssen, Lilly, MSD, Novartis, Pfizer, Roche, and UCB, Grant/research support from: Abbvie, MSD, Novartis and Pfizer, Christine Bundy Consultant of: Abbvie, Celgene, Janssen, Lilly, Novartis, and Pfizer, Laura Christen Employee of: Novartis Pharma AG, Raj Mahapatra: None declared, Souzi Makri: None declared, Carlos Jesús Delgado-Domínguez: None declared, Sergio Sanz-Gómez: None declared, Pedro Plazuelo-Ramos: None declared, Victoria Navarro-Compán Grant/research support from: Abbvie, BMS, Lilly, MSD, Novartis, Pfizer, Roche, and UCB

scholarly journals OP0103 DOES GENDER, AGE OR SUBPOPULATION INFLUENCE THE MAINTENANCE OF CLINICAL REMISSION IN AXIAL SPONDYLOARTHRITIS FOLLOWING CERTOLIZUMAB PEGOL DOSE REDUCTION?

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 66.1-67
Author(s):  
R. B. M. Landewé ◽  
D. Van der Heijde ◽  
M. Dougados ◽  
X. Baraliakos ◽  
F. Van den Bosch ◽  
...  
Keyword(s):  
Induction Period ◽  
Dose Reduction ◽  
Maintenance Dose ◽  
Axial Spondyloarthritis ◽  
Certolizumab Pegol ◽  
Symptom Duration ◽  
Sustained Remission ◽  
Maintenance Period ◽  
Research Support ◽  
Gender And Age

Background:Previous studies have shown that withdrawing tumour necrosis factor inhibitors (TNFi) in patients (pts) with axial spondyloarthritis (axSpA) who have achieved sustained remission often leads to relapse.1However, none have formally tested TNFi dose reduction strategies in a broad axSpA population or evaluated whether relapse following TNFi dose reduction and withdrawal is associated with a specific demographic subgroup.Objectives:C-OPTIMISE evaluated the percentage of pts without flare after TNFi dose continuation, reduction or withdrawal in adults with early axSpA treated with the Fc-free, PEGylated TNFi certolizumab pegol (CZP). Here, we analyse whether responses to reduced maintenance dose were comparable in pts stratified by axSpA subpopulation, gender and age.Methods:C-OPTIMISE (NCT02505542) was a multicentre, two-part phase 3b study in adults with early (<5 years’ symptom duration) active axSpA (stratified for radiographic [r]- and non-radiographic [nr]- axSpA). Pts received CZP 200 mg every 2 weeks (wks) (Q2W; 400 mg loading dose at Wks 0, 2 and 4) during the open-label induction period. At Wk 48, pts in sustained remission (Ankylosing Spondylitis Disease Activity Score [ASDAS] <1.3 at Wk 32 or 36 [if ASDAS <1.3 at Wk 32, it must be <2.1 at Wk 36, or vice versa] and at Wk 48) were randomised to double-blind full maintenance dose (CZP 200 mg Q2W); reduced maintenance dose (CZP 200 mg every 4 wks [Q4W]) or placebo (PBO) for a further 48 wks (maintenance period). The primary endpoint was the percentage of pts not experiencing a flare (ASDAS ≥2.1 at two consecutive visits or ASDAS >3.5 at any timepoint) during Wks 48–96. Analyses were conducted on subgroups according to axSpA subpopulation, gender and age ≤/> the median age of the randomised set (32 years).Results:During the 48-wk induction period, 43.9% of patients (323/736) achieved sustained remission and 313 pts entered the 48-wk maintenance period (r/nr-axSpA: 168/145 pts; males/females: 247/66 pts; age ≤32/>32: 165/148 pts). During the maintenance period, responses in r- and nr-axSpA pts were comparable across all three randomised arms. 83.9% r-axSpA and 83.3% nr-axSpA pts receiving the full CZP maintenance dose did not experience a flare, and in the reduced maintenance dose arm 82.1% r-axSpA and 75.5% nr-axSpA pts did not experience a flare. In the PBO group this was reduced to 17.9% and 22.9%, respectively. Similar responses were seen in pts stratified by gender or age, with substantially higher percentages of pts randomised to CZP full or reduced maintenance dose remaining free of flares compared to PBO in all subgroups (Figure).Conclusion:The results of C-OPTIMISE indicate that a reduced maintenance dose is suitable for pts with axSpA who achieve sustained remission following 1 year of CZP treatment, regardless of axSpA subpopulation, gender or age. Complete treatment withdrawal is not recommended due to the high risk of flare.References:[1]Landewe R. Lancet 2018;392:134–44.Acknowledgments:This study was funded by UCB Pharma. Editorial services were provided by Costello MedicalDisclosure of Interests:Robert B.M. Landewé Consultant of: AbbVie; AstraZeneca; Bristol-Myers Squibb; Eli Lilly & Co.; Galapagos NV; Novartis; Pfizer; UCB Pharma, Désirée van der Heijde Consultant of: AbbVie, Amgen, Astellas, AstraZeneca, BMS, Boehringer Ingelheim, Celgene, Cyxone, Daiichi, Eisai, Eli-Lilly, Galapagos, Gilead Sciences, Inc., Glaxo-Smith-Kline, Janssen, Merck, Novartis, Pfizer, Regeneron, Roche, Sanofi, Takeda, UCB Pharma; Director of Imaging Rheumatology BV, Maxime Dougados Grant/research support from: AbbVie, Eli Lilly, Merck, Novartis, Pfizer and UCB Pharma, Consultant of: AbbVie, Eli Lilly, Merck, Novartis, Pfizer and UCB Pharma, Speakers bureau: AbbVie, Eli Lilly, Merck, Novartis, Pfizer and UCB Pharma, Xenofon Baraliakos Grant/research support from: Grant/research support from: AbbVie, BMS, Celgene, Chugai, Merck, Novartis, Pfizer, UCB and Werfen, Consultant of: AbbVie, BMS, Celgene, Chugai, Merck, Novartis, Pfizer, UCB and Werfen, Speakers bureau: AbbVie, BMS, Celgene, Chugai, Merck, Novartis, Pfizer, UCB and Werfen, Filip van den Bosch Consultant of: AbbVie, Celgene Corporation, Eli Lilly, Galapagos, Janssen, Novartis, Pfizer, and UCB, Speakers bureau: AbbVie, Celgene Corporation, Eli Lilly, Galapagos, Janssen, Novartis, Pfizer, and UCB, Karl Gaffney Grant/research support from: AbbVie, Celgene, MSD, Novartis, Pfizer, and UCB Pharma, Consultant of: AbbVie, Celgene, MSD, Novartis, Pfizer, and UCB Pharma, Speakers bureau: AbbVie, Celgene, MSD, Novartis, Pfizer, and UCB Pharma, Lars Bauer Employee of: UCB Pharma, Bengt Hoepken Employee of: UCB Pharma, Natasha de Peyrecave Employee of: UCB Pharma, Karen Thomas Employee of: UCB Pharma, Lianne S. Gensler Grant/research support from: Pfizer, Novartis, UCB, Consultant of: AbbVie, Eli Lilly, GSK, Novartis, UCB

scholarly journals Exploring the macro-level, meso-level and micro-level barriers and facilitators to the provision of good quality early inflammatory arthritis (EIA) care in England and Wales

RMD Open ◽  
2021 ◽  
Vol 7 (3) ◽  
pp. e001616
Author(s):  
Magdalena Zasada ◽  
Mark Yates ◽  
Nicola Ayers ◽  
Zoë Ide ◽  
Sam Norton ◽  
...  
Keyword(s):  
Inflammatory Arthritis ◽  
Care Quality ◽  
Barriers And Facilitators ◽  
Macro Level ◽  
Healthcare Team ◽  
England And Wales ◽  
Meso Level ◽  
Early Inflammatory Arthritis ◽  
Micro Level

BackgroundEvidence from a national clinical audit of early inflammatory arthritis (EIA) shows considerable variability between hospitals in performance, unexplained by controlling for case-mix.ObjectiveTo explore the macro-level, meso-level and micro-level barriers and facilitators to the provision of good quality EIA care.MethodsA qualitative study within 16 purposively sampled rheumatology units across England and Wales. Quality was assessed in relation to 11 quality indicators based on clinical opinion, evidence and variability observed in the data. Data from semi-structured interviews with staff (1–5 from each unit, 56 in total) and an online questionnaire (n=14/16 units) were integrated and analysed using the framework method for thematic analysis using a combined inductive and deductive approach (underpinned by an evidence-based framework of healthcare team effectiveness), and constant comparison of data within and between units and its relationship with the quality criteria.FindingsQuality of care was influenced by an interplay between macro, meso and micro domains. The macro (eg, shared care arrangements and relationships with general practitioners) and meso (eg, managerial support and physical infrastructure) factors were found to act as crucial enablers of and barriers to higher quality service provision at the micro (team) level. These organisational factors directly influenced team structure and function, and thereby EIA care quality.ConclusionsVariability in quality of EIA care is associated with an interplay between macro, meso and micro service features. Tackling macro and meso barriers is likely to have a significant impact on quality of EIA service, and ultimately patient experience and outcomes.

scholarly journals POS1474-HPR PERSONAL EXPERIENCES WITH DIAGNOSTIC DELAY AMONG AXIAL SPONDYLOARTHRITIS PATIENTS – A QUALITATIVE STUDY

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1022.2-1022
Author(s):  
C. Dubé ◽  
K. Lapane ◽  
K. Ferrucci ◽  
A. Beccia ◽  
S. Khan ◽  
...  
Keyword(s):  
Focus Groups ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
Screening Tools ◽  
Research Support ◽  
Self Advocacy ◽  
Emotional Suffering ◽  
Receive Treatment ◽  
Age Range ◽  
The Impact

Background:The estimated prevalence of axial Spondyloarthritis (axSpA) in the U.S. is 0.4 to 1.3 percent. Undiagnosed axSpA patients suffer from symptoms on average 7 to 10 years, which can also contribute to psychological suffering and healthcare burden due to the prolonged search for diagnosis and treatment.Objectives:To explore the experiences of diagnostic delay of axSpA patients as part of the SpondyloArthritis Screening and Early Detection (SpA-SED) Study.Methods:We conducted exploratory semi-structured patient focus groups. English-speaking participants ≥18 years of age with a rheumatologist-verified clinical diagnosis of axSpA were recruited from three rheumatology practices in Massachusetts, Colorado, and Pennsylvania. Six focus groups were conducted with 26 total participants (16 men, 10 women, age range 21-76 years). Discussions ranged from 1.33 to 2.13 hours. Verbatim transcripts were deidentified, cleaned and coded using NVivo qualitative software. A coding list was generated and summary themes were constructed.Results:Participants described meandering and frustrating journeys in search of a diagnosis. When doctors gave up, it was experienced by patients as profoundly negative. Intermittent axSpA symptoms confused some physicians and caused some patients to either delay seeking medical care (e.g., sporadic flare-up) or use dramatic language to convey the magnitude of the impact on their symptoms. Patients explained their experiences where physicians presumed that patients were trying to obtain narcotics or were “imagining/exaggerating” symptoms. Early symptom stories fell into five areas of importance for patients: pain, stiffness and lack of mobility, impact on sleep, impact on daily life, and changes with weather. Tenacity on the part of the patient and/or their family, patient research and confidence to challenge their physicians were important. Self-advocacy was challenging but necessary and particularly difficult when patients were sick. During the typically lengthy time that participants waited to be diagnosed, they experienced frustration and mental suffering due to lack of answers and/or not being heard, believed, or taken seriously. Some participants described the fatigue they experienced after trying without success to obtain a diagnosis or receive treatment. Early administration of a definitive diagnostic test or screening tools for axSpA would have alleviated both physical and emotional suffering for these participants.Conclusion:Overall, participants expressed satisfaction with physicians who sought to understand them and believed them, took them seriously, and did not give up even with long delays. Patients with axSpA described significant suffering prior to diagnosis which could have been prevented and treated. Further research is needed with axSpA patients who are early in their diagnostic journey to determine best practices to support patients and reduce diagnostic delay.Disclosure of Interests:Catherine Dubé Grant/research support from: Novartis, as personnel on such studies, Kate Lapane: None declared, Katarina Ferrucci: None declared, Ariel Beccia: None declared, Sara Khan: None declared, Esther Yi Employee of: Novartis Pharmaceuticals, Jonathan Kay Consultant of: AbbVie, Inc.; Boehringer Ingelheim GmbH; Celltrion Healthcare Co. Ltd.; Jubilant Radiopharma; Merck & Co.,Inc.; Pfizer Inc.; Samsung Bioepis; Sandoz Inc.; Scipher Medicine; UCB, Inc., Grant/research support from: (paid to UMass Medical School) Gilead Sciences Inc.; Novartis Pharmaceuticals Corp.; Pfizer Inc., Kristine A. Kuhn Consultant of: UCB, Eli Lilly, Novartis, Grant/research support from: Pfizer, Alexis Ogdie Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Gilead, Janssen, Lilly, Novartis, Pfizer, UCB, Grant/research support from: Pfizer to Penn, Novartis to Penn, Amgen to Forward/NDB, Shao-Hsien Liu Grant/research support from: Novartis

SAT0548 DEVELOPMENT AND VALIDATION OF THREE PRELIMINARY MRI SACROILIAC JOINT COMPOSITE STRUCTURAL DAMAGE SCORES IN A 5-YEAR LONGITUDINAL STUDY OF PATIENTS WITH AXIAL SPONDYLOARTHRITIS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1231.1-1231
Author(s):  
M. Wetterslev ◽  
M. Ǿstergaard ◽  
I. J. Sørensen ◽  
U. Weber ◽  
A. G. Loft ◽  
...  
Keyword(s):  
Structural Damage ◽  
Axial Spondyloarthritis ◽  
Bone Destruction ◽  
Symptom Duration ◽  
Tnf Inhibitor ◽  
Research Support ◽  
Erosion Score ◽  
Asas Criteria ◽  
Structural Progression ◽  
Score Range

Background:In axial spondyloarthritis (axSpA), MRI reliably detects structural lesions in the sacroiliac joints (SIJs). The SPARCC SIJ Structural Score (SSS)(1) is a reliable and validated method to assess the individual structural lesions of the SIJs, i.e. fat lesion, erosion, backfill (fat metaplasia in an erosion cavity) and ankylosis. Several MRI studies have indicated that bone destruction, i.e. erosion, is often followed by formation of new bone in the erosion cavity (backfill), ultimately leading to ankylosis(2).Objectives:The aim was to combine SPARCC SSS for erosion, backfill and ankylosis into a composite score for SIJ structural damage and to test this score in a 5-year follow up study.Methods:Thirty-three patients fulfilling ASAS criteria for axSpA were followed for 5 years after initiation of TNF inhibitor in the BIOSPA study(3). T1-weighted and STIR MRI sequences of the SIJs acquired at week 0, 46 and year 2, 3, 4, 5 were evaluated with SPARCC SSS. In each of 5 slices of each SIJ, erosion is scored 0-1 per joint quadrant (score range 0-40), backfill 0-1 per joint half (score range 0-20) and ankylosis 0-1 per joint half (score range 0-20). Based on the scores for erosion, backfill and ankylosis 3 versions of a preliminary Composite axSpA MRI SIJ Structural Damage Score (CSDS) were calculated:CSDS–A: (erosion score x0.5) + backfill score + ankylosis scoreCSDS–B: (erosion score x1) + (backfill score x4) + (ankylosis score x6)CSDS–C: (erosion score x1) < (backfill score x4) < (ankylosis score x6)The “<” indicates a hierarchical order, meaning that erosion was not scored if backfill was present in the same joint half and erosion and backfill were not scored if ankylosis was present in the joint half.Results:Patients were divided into two groups: patients with almost complete bilateral ankylosis (baseline SPARCC SSS Ankylosis ≥18, n=10) and patients with no/minor ankylosis (baseline SPARCC SSS Ankylosis ≤7, n=23). At baseline patients with no/minor ankylosis were younger, had shorter symptom duration, lower BASMI, higher SPARCC SIJ Inflammation, lower SSS Fat, Erosion, Backfill and Ankylosis, as compared with patients with almost complete ankylosis.At baseline, CSDS-A, -B and -C correlated positively with SPARCC SSS Fat and Ankylosis and modified New York criteria grading, and negatively with BASDAI and SPARCC inflammation. Change in CSDS-B and -C over 5 years correlated positively with change in SSS Fat and Ankylosis and negatively with change in SPARCC Inflammation. There was no change in the group with almost complete ankylosis.The annual progression for CSDS-B and -C was statistically significantly larger in year 1 compared with year 4 (p=0.01) and numerically larger compared with year 2 (p=0.075), 3 (p=0.382) and 5 (p=0.073). Figure 1 shows the annual change in patients with no/minor ankylosis.Conclusion:Three preliminary Composite Structural Damage Scores for MRI assessment of the SIJs in patients with axSpA, which allows scoring of MRI progression of erosion through backfill to ankylosis, were introduced. Progression was most pronounced the first year after TNF inhibitor initiation. This novel approach may be useful for monitoring structural progression in axSpA. We suggest that these methods are further tested for responsiveness and ability to differentiate between different therapies in randomized controlled trials.References:[1]Maksymowych WP et al. J Rheum 2015;42:79-86.[2]Maksymowych WP et al. Art Rheum 2014;66:2958-67.[3]Pedersen SJ et al. Scand J Rheum 2019;48:185-197.Disclosure of Interests:Marie Wetterslev: None declared, Mikkel Ǿstergaard Grant/research support from: AbbVie, Bristol-Myers Squibb, Celgene, Merck, and Novartis, Consultant of: AbbVie, Bristol-Myers Squibb, Boehringer Ingelheim, Celgene, Eli Lilly, Hospira, Janssen, Merck, Novartis, Novo Nordisk, Orion, Pfizer, Regeneron, Roche, Sandoz, Sanofi, and UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Boehringer Ingelheim, Celgene, Eli Lilly, Hospira, Janssen, Merck, Novartis, Novo Nordisk, Orion, Pfizer, Regeneron, Roche, Sandoz, Sanofi, and UCB, Inge Juul Sørensen: None declared, Ulrich Weber: None declared, Anne Gitte Loft Grant/research support from: Novartis, Consultant of: AbbVie, MSD, Novartis, Pfizer and UCB, Speakers bureau: AbbVie, MSD, Novartis, Pfizer and UCB, Gina Kollerup Speakers bureau: Eli Lilly, Lars Juul: None declared, Gorm Thamsborg: None declared, Ole Madsen: None declared, Jakob Møllenbach Møller: None declared, Susanne Juhl Pedersen Grant/research support from: Novartis

FRI0595 CAN A SINGLE QUESTION ON FUNCTIONAL IMPAIRMENTS FACILITATE THE IDENTIFICATION OF EARLY INFLAMMATORY ARTHRITIS? A LARGE CROSS-SECTIONAL DERIVATION AND VALIDATION STUDY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 903-904
Author(s):  
B. Van Dijk ◽  
H. W. Van Steenbergen ◽  
E. Niemantsverdriet ◽  
E. Brouwer ◽  
A. Van der Helm - van Mil
Keyword(s):  
Early Identification ◽  
Inflammatory Arthritis ◽  
Clinical Characteristics ◽  
Early Arthritis ◽  
Functional Impairments ◽  
Discriminative Ability ◽  
Derivation Cohort ◽  
Early Inflammatory Arthritis ◽  
Joint Examination ◽  
Single Question

Background:Early treatment initiation in inflammatory arthritis (IA), and specifically in RA, is associated with improved outcomes but requires early identification of synovitis. However, healthcare professionals other than rheumatologists, e.g. general practitioners (GPs), experience difficulties in detecting early IA by joint examination. In this light, two Early ArthritisRecognitionClinics (EARCs) were initiated in the Netherlands in 2010. EARCs are easy-access outpatient rheumatology clinics, intermediary between primary and secondary care, to which GPs can refer patients when in doubt about the presence of IA (instead of ‘watchful waiting’). Although this approach markedly reduced referral delay,[1] it may not be easily implemented in other places due to shortage of rheumatologists. Therefore, other new tools to support early identification of IA are needed.Objectives:Aiming for simple and time-efficient use in daily practice, we evaluated if just a single question on functional impairments could aid the identification of early IA.Methods:Data from two EARCs in the Netherlands were studied. Between 2010 and 2014, 997 patients with suspected IA visited the Leiden EARC (derivation cohort). Patients visiting the Groningen EARC (2010–2014, n = 506) and Leiden EARC (2015–2018, n = 557) served as validation cohorts. Physical functioning was assessed with the Health Assessment Questionnaire Disability Index (HAQ); IA by joint examination by rheumatologists. Discriminative abilities for IA of the 20 HAQ-questions were compared based on the area under the curve (AUC). For the best discriminating question, test characteristics and odds ratios (ORs) were calculated. ORs were adjusted for clinical characteristics that were previously reported to be predictive of the presence of IA (gender, age ≥60 years, symptom duration, acuteness of symptom onset, morning stiffness >60 minutes, number of painful joints, presence of patient-reported swollen joint(s) and difficulty with making a fist)[2] using multivariable logistic regression.Results:IA was identified in 43% (derivation cohort), 53% and 35% (validation cohorts). In the derivation cohort, presence of IA associated with higher mean HAQ-scores (0.84 versus 0.73, p=0.003). The HAQ-question on difficulties with dressing yielded the highest AUC (0.58), which equalled discriminative ability of the total HAQ-score (AUC 0.55). Responses to this question were dichotomised into a simple binary score since loss of discriminative ability was minimal (AUC 0.57). Presence of any difficulties with dressing yielded ORs for IA of 1.80 (95%CI 1.39–2.33) in the derivation cohort; 2.00 (1.39–2.87) and 2.14 (1.48–3.10) in the validation cohorts. After adjustments for clinical characteristics the presence of any difficulties with dressing remained associated with the presence of IA; OR 1.71 (1.27–2.32) in derivation cohort and 1.64 (1.08–2.50) and 1.87 (1.20–2.92) in the validation cohorts. The prevalence of IA in case of presence of difficulties with dressing (positive predictive value) ranged 42–60% (see Figure).Conclusion:A yes/no answer on a simple question (“Are you able to dress yourself, including shoelaces and buttons?”) was helpful in discriminating patients with and without IA. Findings were validated in independent 1.5-line settings and need to be validated further in primary care. This is a step forward to arrive at practical tools that are helpful for GPs in identifying early IA.References:[1] van Nies JA et al. Improved early identification of arthritis: evaluating the efficacy of Early Arthritis Recognition Clinics. Ann Rheum Dis. 2013;72(8):1295–301.[2] ten Brinck RM et al. Development and validation of a clinical rule for recognition of early inflammatory arthritis. BMJ Open. 2019 Feb 22;8(11):e023552.Disclosure of Interests:Bastiaan van Dijk: None declared, Hanna W. van Steenbergen: None declared, Ellis Niemantsverdriet: None declared, Elisabeth Brouwer Consultant of: Roche (consultancy fee 2017 and 2018 paid to the UMCG), Speakers bureau: Roche (2017 and 2018 paid to the UMCG), Annette van der Helm - van Mil: None declared

Missing Anticitrullinated Protein Antibody Does Not Affect Short-term Outcomes in Early Inflammatory Arthritis: From the Canadian Early Arthritis Cohort

2015 ◽  
Vol 42 (11) ◽  
pp. 2023-2028 ◽  
Author(s):  
Jenny Shu ◽  
Vivian P. Bykerk ◽  
Gilles Boire ◽  
Boulos Haraoui ◽  
Carol Hitchon ◽  
...  
Keyword(s):  
Disease Activity ◽  
Inflammatory Arthritis ◽  
Smoking Status ◽  
Health Assessment ◽  
Symptom Duration ◽  
Care Gap ◽  
American College Of Rheumatology ◽  
European League Against Rheumatism ◽  
Early Inflammatory Arthritis ◽  
Group 3

Objective.Anticitrullinated protein antibody (ACPA) is as sensitive as, but more specific than, rheumatoid factor (RF) and is detected earlier in rheumatoid arthritis (RA). Although part of the RA classification criteria, ACPA testing is not routinely paid for/accessible in all jurisdictions. The effect of missing ACPA testing was studied to determine whether failure to perform ACPA testing could cause a care gap in early inflammatory arthritis.Methods.Nearly 2000 patients (n = 1998) recruited to an early inflammatory arthritis cohort were allocated into 3 groups: (1) seropositive (either RF+ or ACPA+), (2) seronegative (RF− and ACPA−), and (3) missing ACPA and RF−. Analyses were adjusted for age, sex, symptom duration, and smoking status if p < 0.1. Disease Activity Score at 28 joints (DAS28) at 3 months was studied, because beyond then, disease activity is expected to determine ongoing treatment.Results.More seropositive patients fulfilled the 2010 American College of Rheumatology/European League Against Rheumatism RA criteria than seronegative patients. Group 3 was slightly older and had a smaller percentage of females, as well as shorter symptom duration and less smoking. At 3 months, group 3 was treated with fewer disease-modifying antirheumatic drugs and methotrexate (p < 0.00002) than groups 1 and 2, but there were no significant differences in DAS28, Health Assessment Questionnaire-Disability Index (HAQ-DI), proportion receiving corticosteroids, or physician’s/patient’s global assessments.Conclusion.There was no care gap in the RF-negative, unknown ACPA group because there were no significant differences in the DAS28, 3-month change in DAS28, or HAQ-DI, despite less treatment. Cost-effectiveness of ensuring ACPA testing availability in suspected RA is unknown because early outcomes did not differ, whether or not ACPA was available.

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