Introduction We describe the journey to diagnosis of ankylosing spondylitis (AS) from the patient perspective and examine differences in this journey by sex. Methods US adults aged ≥ 18 years with a self-reported AS diagnosis were recruited online through CreakyJoints, a patient support community, and ArthritisPower, a patient research registry. Respondents completed a web-based survey on sociodemographics, disease burden, and diagnosis history. Results were stratified by sex and time to diagnosis using two-sample t tests and χ 2 tests, respectively, to observe differences across the groups; P < 0.05 was considered statistically significant. Results Among 235 respondents, 174 (74.0%) were female. Mean (SD) ages of female and male respondents were 48.6 (10.6) and 53.1 (10.3) years, respectively. From the time respondents began seeking medical attention, 87 were diagnosed within ≤ 1 year, 71 in 2–9 years, and 77 after ≥ 10 years. Symptoms that led respondents to seek treatment were back pain (73.2%) and joint pain (63.8%); fatigue and difficulty sleeping were more common among respondents with longer times to diagnosis. During the diagnosis process, men with AS tended to receive quicker AS diagnosis compared with women. Overall, commonly reported initial diagnoses among respondents with longer time to AS diagnosis included back problems and psychosomatic disorders. Significantly more women reported misdiagnoses of fibromyalgia (20.7 vs. 6.6%) and psychosomatic disorders (40.8 vs. 23.0%) compared with men. Conclusions Diagnosis delays and misdiagnoses were common among respondents with AS. Increasing awareness about AS among referring providers may minimize diagnosis delay. Funding Novartis Pharmaceuticals Corporation. Plain Language Summary Plain language summary available for this article. Electronic Supplementary Material The online version of this article (10.1007/s40744-019-0153-7) contains supplementary material, which is available to authorized users.
BackgroundA US-based study demonstrated that patients with ankylosing spondylitis (AS) experience a significant delay (on average 14 years) from symptom onset to diagnosis of AS.1 Understanding the diagnosis journey of patients with AS and identifying opportunities to reduce misdiagnosis and incorrect referral are crucial to reducing time to diagnosis, preventing irreversible joint damage, and preserving mobility.ObjectivesTo describe the patient journey to AS diagnosis from the patient perspective and differences observed between females and males.MethodsUS adults aged ≥18 years with a self-reported diagnosis of AS were recruited through CreakyJoints, an online patient support community comprising patients with arthritis and arthritis-related diseases and their caregivers. Respondents completed a web-based survey on socio-demographics, clinical symptoms, disease burden, and diagnosis history, which included symptoms that led to seeking care, time from symptom onset to seeking care and from seeking care to AS diagnosis, types of healthcare providers seen, and misdiagnoses. Survey questions were developed following analysis of qualitative interviews of patients with AS and clinical experts, as well as a targeted literature review. Survey results were compared between females and males using 2-sample t tests for continuous variables and chi squared tests for categorical variables.ResultsAmong 235 respondents, 174 (74%) were female. Mean (SD) age of female and male respondents were 48.6 (10.6) and 53.1 (10.3) years, respectively. Although the majority (58% female and 54% male) sought medical care within the first year of symptom onset, female respondents reported a mean of 17.2 years since first symptom onset and 7.5 years since AS diagnosis; while male respondents reported a mean of 20.0 years since first symptom onset and 11.4 years since AS diagnosis. The most common symptoms that led to seeking medical care were back pain, joint pain, stiffness, and fatigue (figure 1A). During the diagnosis process, patients reported seeking medical care from a general practitioner (87%), rheumatologist (65%), orthopedist (27%), chiropractor (26%), and urgent care/emergency room doctor (21%) with no differences between females and males. The most commonly reported misdiagnoses were back problems (56%), psychosomatic (23%), and sciatica (21%) in males, while psychosomatic (41%), back problems (40%), and anxiety/depression (24%) were most common in females. Significantly higher proportions of females reported misdiagnoses of fibromyalgia (21% vs 7%) and psychosomatic (41% vs 23%) (figure 1B).Abstract FRI0180 – Figure 1Most common first symptom to prompt seeking care (A) and most common misdiagnoses (B) in patients with ASConclusionsThe diagnostic process differs among males and females with AS. Our study findings highlight gender differences in initial symptom presentation, misdiagnoses, and time to diagnosis of AS.Reference[1] Deodhar A. Arthritis Rheumatol2016;68:1669–76.AcknowledgementsThis study was sponsored by Novartis Pharma...
Background:In clinical practice, it is often challenging to distinguish fibromyalgia syndrome (FMS) from axial spondyloarthritis (axSpA), which includes ankylosing spondylitis and non-radiographic axSpA.1,2Early stages of axSpA may present with an onset similar to FMS,3and likewise patients with FMS may have symptoms that are similar to axSpA. Differentiating between axSpA and FMS can also be challenging for patients and cause confusion about their diagnosis.Objectives:To examine the prevalence of axSpA symptoms among patients with FMS and differences in the pathway to diagnosis among patients with and without concomitant axSpA.Methods:Adult US patients with FMS without concomitant rheumatoid arthritis or psoriatic arthritis in the ArthritisPower registry received email invitations to participate. Participants (pts) were asked whether they had a diagnosis of axSpA or ankylosing spondylitis and completed patient-reported outcome measures including Patient Reported Outcomes Measurement Information System (PROMIS) measures for Pain Interference, Sleep Disturbance and Fatigue, and the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI). Pts then responded to a 57-item customized survey developed by the researchers in collaboration with patient partners. Results are descriptively reported.Results:As of January 2020, 231 pts completed the survey; 97% female, 89% White, mean (SD) age of 52 (11). Mean (SD) Pain Interference score was 68 (5); Sleep Disturbance 63 (8); Fatigue 68 (7); and BASDAI 46 (9). Of the pts, 40 (17%) reported concomitant axSpA, 64% osteoarthritis, 6% gout, 5% Crohn’s or ulcerative colitis, and 4% lupus. Half of all pts perceived their FMS to be ‘rarely’ or ‘never’ well managed and 80% felt that they have had an undiagnosed condition in addition to their FMS and their other current diagnoses. Three-fourths (75%) of pts reported being able to tell the difference between their FMS pain and pain they experience as a part of the concomitant disorder. Back pain lasting >3 months was reported by 95% of axSpA pts and 94% of non-axSpA pts and 12% reported all of the symptoms consistent with patient reported versions of the Assessment of SpondyloArthritis International Society (ASAS) criteria (back/buttock pain >3 months; age of symptom onset <45; sacroiliitis diagnosis; at least on spondyloarthritis feature) (Figure 1), and of these, 39% reported an axSpA diagnosis. More pts with axSpA received their FMS diagnosis by a rheumatologist (45%) than without (41%) (Figure 2), and of the pts without an axSpA diagnosis (n=191), only 6% had recalled their provider ever discussing with them the possibility of axSpA, including non-radiographic axSpA diagnosis. Half (53%) of pts with axSpA believe that their axSpA should have been diagnosed earlier, with 33% reporting that one reason for the delay was their doctors’ belief that FMS was the cause of any axSpA symptoms they experienced.Conclusion:Patients with FMS often experience symptoms of axSpA and the two conditions can occur concomitantly. Additional research is needed to improve the triage, diagnosis, and education of patients with FMS and symptoms of axSpA.References:[1]Roussou E, et al. Clin Ex Rheum Suppl. 2012;30(74):24-30.[2]Kaskari D, et al. Mod Rheum. 2017;27(5):875-880.[3]Hauser W, et al. Pain Rep. 2017;2(3):e598.Disclosure of Interests:Kelly Gavigan: None declared, W. Benjamin Nowell: None declared, Regan Reynolds: None declared, Laura Stradford: None declared, Jeffrey Curtis Grant/research support from: AbbVie, Amgen, Bristol-Myers Squibb, Corrona, Janssen, Lilly, Myriad, Pfizer, Regeneron, Roche, UCB, Consultant of: AbbVie, Amgen, Bristol-Myers Squibb, Corrona, Janssen, Lilly, Myriad, Pfizer, Regeneron, Roche, UCB, Alexis Ogdie Grant/research support from: Pfizer, Novartis, Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Janssen, Lilly, Pfizer, Novartis
BackgroundPatient-reported outcome (PRO) measures are important in managing and improving the quality of care in patients with chronic rheumatic conditions including ankylosing spondylitis (AS). The RAPID3 was developed for use in patients with rheumatoid arthritis, but it has shown good correlation with the BASDAI and ASDAS in patients with AS.1 The PROMIS10 is a universal (non-disease specific) PRO measure that quantifies physical and mental health;2 validity of PROMIS10 has not been examined in patients with AS.ObjectivesTo evaluate the relationship between RAPID3 and PROMIS10 in patients with AS.MethodsUS patients aged ≥18 years with a self-reported diagnosis of AS were recruited through CreakyJoints (www.CreakyJoints.org), an online patient support community comprising patients with arthritis and arthritis-related diseases and their caregivers and via outreach on social media. Respondents completed a web-based survey designed to collect data on socio-demographics and clinical symptoms, RAPID3, and PROMIS10. The RAPID3 score consists of three patient self-reported scores (0–10): functional impairment, pain, and patient global assessment; total scores≤3.0=near remission, 3.1 to 6.0=low disease severity, 6.1 to 12.0=moderate disease severity, and ≥12.1 = high disease severity. PROMIS10 is a 10-item questionnaire measuring physical, mental, and social domains; physical and mental health domain scores are transformed to T-score distributions normalised to the general population (mean score=50). PROMIS10 individual scores and global physical and mental health T-scores were stratified by RAPID3 disease severity and compared across RAPID3 severity levels using Kruskal-Wallis or ANOVA or tests, respectively. Spearman’s correlation coefficient was calculated between the RAPID3 total score and the PROMIS10 physical health and mental health T-scores, respectively.ResultsAmong 235 respondents, 174 (74%) were female, with a mean (SD) age of 49.8 (10.7) years. The mean (SD) RAPID3 cumulative score was 15.4 (5.4) The mean (SD) PROMIS10 global physical and mental health T-scores were 35.60 (7.39) and 39.89 (8.76), respectively, with individual domain scores and global T-scores decreasing with worsening RAPID3 disease activity (table 1; p<0.0001 for all). PROMIS10 physical and mental health T-scores showed a showed a strong correlation with RAPID3 (r s=−0.84 and −0.63, respectively).Abstract AB0849 – Table 1PROMIS10 Scores by RAPID3 Disease Activity in Patients with ASAS, ankylosing spondylitis; PROMIS10, Patient-Reported Outcome Management Information System Global Health short form; RAPID3, Routine Assessment of Patient Index Data 3.* Disease severity classified by RAPID3 scores:≤3.0=near remission; 3.1 to 6=low severity; 6.1 to 12.0=moderate severity;≥12.1= high severity.ConclusionsRAPID3 and PROMIS10 are relatively short questionnaires that can be used in the real world to track and monitor disease symptoms and health-related quality of life in patients with AS. RAPID3 and PROMIS10 were strongly correlated in patients with...
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