scholarly journals AB0892-HPR PATIENT PERSPECTIVES ON PROVIDER PRACTICES LEADING TO AN AXIAL SPONDYLOARTHRITIS DIAGNOSIS: A QUALITATIVE STUDY

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1469.2-1470
Author(s):  
K. Lapane ◽  
C. Dubé ◽  
K. Ferrucci ◽  
S. Khan ◽  
K. A. Kuhn ◽  
...  
Keyword(s):  
Back Pain ◽  
Qualitative Study ◽  
Focus Groups ◽  
Chronic Back Pain ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
Primary Care Providers ◽  
The United States ◽  
Research Support ◽  
The Impact

Background:People with Axial Spondyloarthritis (axSpA) experience a diagnostic delay between 7 to 10 years. (1-5) This delay contributes to increased depression and desperation in searching for an appropriate diagnosis. (6) Consequently, people with axSpA experience impaired physical function, structural damage, and overall worsened quality of life than those who experience a timely diagnosis. (7)Objectives:To gain knowledge and understand patients’ experiences with healthcare providers in diagnosis of axSpA.Methods:Using qualitative study design, we conducted six focus groups, with a total of 26 participants with a confirmed diagnosis of axSpA by rheumatologists from three different geographic locations: Worcester, MA, Aurora, CO and Philadelphia, PA. Focus groups were audio recorded and approximately 2 hours in duration. The focus groups were transcribed, deidentified, cleaned and stored in a secure location. NVivo software was used to code the data using a coding scheme which emerged from the focus group discussion topics. For intercoder reliability, two researchers coded the data and generated summary reports for data analysis.Results:Patients described their frustrating journeys to diagnosis and attributed the lengthy diagnosis delays to a multitude of factors. These elements include, lack of definitive diagnostic test, disease characteristics, lack of primary care providers’ awareness of axSpA, time, and trust. Patients felt that their physicians dismissed their complaints or would describe their symptoms as psychosomatic. The health care system also contributed to their diagnostic delays, including the lengthy referral process to a rheumatologist and the short clinical appointments. Patients believe that to reduce diagnostic delay, physicians must work with their patients; listening and believing their patients while allotting time for patients to discuss their experiences. In addition, patients believe earlier referral to a rheumatologist, and HLA-B27 genetic testing would decrease the diagnostic delay of axSpA.Conclusion:In this study, patients desire definitive testing in clinical practice for earlier diagnosis of axSpA. Additionally, more education regarding the guidelines to diagnose axSpA and earlier referral to rheumatologists might be needed. Until this is feasible, patients seek clinicians who will work with them until a diagnosis is made, listening, and believing their experiences and symptoms.References:[1]Deodhar A, Mease P, Reveille J, Curtis J, Karunaratne P, Malhotra K. Prevalence of axial spondyloarthritis among undiagnosed chronic back pain patients in the United States [abstract]. Ann Rheum Dis. 2014;73:198-199.[2]Deodhar A, Mease PJ, Reveille JD, et al. Frequency of Axial Spondyloarthritis Diagnosis Among Patients Seen by US Rheumatologists for Evaluation of Chronic Back Pain. Arthritis Rheumatol. 2016;68(2326-5205 (Electronic)):1669–1676.[3]Garrido-Cumbrera M, Poddubnyy D, Gossec L, et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep. 2019;21(1534-6307 (Electronic)):19.[4]Redeker I, Callhoff J, Hoffmann F, et al. Determinants of diagnostic delay in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data. Rheumatology (Oxford) 2019;58(1462-0332 (Electronic)):1634–1638.[5]Strand V, Singh JA. Evaluation and Management of the Patient With Suspected Inflammatory Spine Disease. Mayo Clin Proc 2017;92(1942-5546 (Electronic)):555–564.[6]Martindale J. The impact of delay in diagnosing ankylosing spondylitis/axial SpA. . Rheumatology. 2014;53.[7]Yi EA-O, 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(2198-6576 (Print)):65-87.Disclosure of Interests:Kate Lapane: None declared, Catherine Dubé Grant/research support from: Novartis, as personnel on such studies, Katarina Ferrucci: None declared, Sara Khan: None declared, 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, 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., Shao-Hsien Liu Grant/research support from: Novartis

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

scholarly journals SAT0380 ENHANCING RHEUMATOLOGY REFERRALS AMONG INFLAMMATORY BOWEL DISEASE PATIENTS WITH SUSPECTED AXIAL SPONDYLOARTHRITIS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1138.2-1138
Author(s):  
C. S. E. Lim ◽  
M. Tremelling ◽  
L. Hamilton ◽  
A. Macgregor ◽  
K. Gaffney
Keyword(s):  
Back Pain ◽  
Musculoskeletal Pain ◽  
Chronic Back Pain ◽  
Axial Spondyloarthritis ◽  
Inflammatory Back Pain ◽  
Aminosalicylic Acid ◽  
Research Support ◽  
Clinical Probability ◽  
Asas Criteria ◽  
History Of

Background:Axial spondyloarthritis (axSpA) is associated with inflammatory bowel disease (IBD). In IBD patients, the clinical probability of axSpA increases in those with chronic back pain (CBP) whose symptoms started before the age of forty-five years old. In practice, this should trigger a rheumatology review especially if accompanied by other symptoms suspicious of inflammatory disease. However, in any health system, the goal of identifying all possible cases need to be balanced with the practical realisation of the finite resources available.Objectives:The study aimed to define the clinical characteristics of a subgroup of IBD patients who are routinely managed in secondary care who have an increased clinical probability for axSpA. Identification of these characteristics may help improve the quality and specificity of referrals to Rheumatology from Gastroenterology clinics.Methods:An analytical cross-sectional study was undertaken. Consecutive IBD patients attending routine Gastroenterology clinics were sent a modified validated back pain questionnaire. The questionnaire included the presence or absence of a previous diagnosis of axSpA; components of validated inflammatory back pain criteria; diagrams to indicate the location of back pain and other musculoskeletal pain; personal and family history of known axSpA manifestations; and details of their IBD course, activity and treatment.IBD patients, with back pain duration > 3 months with onset before 45 years were considered to have a medium diagnostic probability (MDP) for axSpA. MDP-positive IBD patients were compared with MDP-negative IBD patients and logistic regression was used to model the association with clinical features.Results:Four hundred and seventy consecutive IBD patients (mean age 54 years; 46% male) were surveyed. Two hundred and nine patients (59%) replied, of whom 191 patients (69%) consented to participate. One hundred and seventy-three (91%) of those who consented had a valid completed questionnaire and were included for data analysis. Of these, 74% had Ulcerative Colitis and 26% had Crohn’s disease. Their mean age was 58 years, 39% male. Mean age at IBD diagnosis was 39 years, mean IBD disease duration 19 yrs. CBP (back pain greater than three months) was reported by 76%. Inflammatory back pain fulfilling Calin, Berlin, ASAS criteria was seen in 23%, 29%, and 15% respectively. In addition, 80% reported peripheral musculoskeletal pain. Self-reported personal history of enthesitis, reactive arthritis (ReA), acute anterior uveitis (AAU), skin psoriasis (PSO) and dactylitis were 50%, 30%, 24%, 15% and 0% respectively. Self-reported family history of IBD, ReA, PSO, axSpA and AAU were 60%, 36%, 22%, 11%, and 1% respectively.Ninety-one (53%) patients were MDP-positive and 82 (47%) patients were MDP-negative. The clinical characteristics associated with MDP (adjusted for age at invitation) were: the presence of inflammatory back pain using ASAS criteria [OR 8.84 (1.61,48.67); p=0.01], longer interval between symptom onset and gastroenterologist diagnosis of IBD [OR 1.09 (1.03,1.16); p=0.005], and use of rectal topical 5-aminosalicylic acid [OR 3.27 (1.11,9.68); p=0.03].Conclusion:Chronic back pain and peripheral musculoskeletal pain are common in a secondary care IBD population. In IBD patients, with back pain duration > 3 months and onset before 45 years, the presence of inflammatory back pain, longer diagnostic delay of IBD and the use of rectal topical 5-aminosalicylic acid were associated with a higher clinical probability of axSpA. The identification of these clinical features may not only improve the quality and specificity of Rheumatology referrals from Gastroenterology in this subgroup of patients but also lends real world evidence to current ASAS-endorsed recommendations for early referral of patients with a suspicion of axial spondyloarthritis.Disclosure of Interests:Chong Seng Edwin Lim Grant/research support from: AbbVie - Research support/grant but NOT for this study., Mark Tremelling: None declared, Louise Hamilton: None declared, Alexander Macgregor: None declared, 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

General Practitioners’ Perceptions of Their Ability to Identify and Refer Patients with Suspected Axial Spondyloarthritis: A Qualitative Study

2014 ◽  
Vol 41 (5) ◽  
pp. 897-901 ◽  
Author(s):  
Marloes van Onna ◽  
Simone Gorter ◽  
Aniek van Meerendonk ◽  
Astrid van Tubergen
Keyword(s):  
Back Pain ◽  
Qualitative Study ◽  
General Practitioners ◽  
Chronic Back Pain ◽  
Axial Spondyloarthritis ◽  
Inflammatory Back Pain ◽  
Coding System ◽  
Disease Spectrum ◽  
Insidious Onset ◽  
Mechanical Back Pain

Objective.To explore the knowledge, beliefs, and experiences of general practitioners (GP) about inflammatory back pain (IBP) and axial spondyloarthritis (axSpA) and potential barriers for referral of patients suspected of having axSpA.Methods.A qualitative study involving semistructured interviews with GP was conducted. Transcripts of the interviews were independently read and annotated by 2 readers. Illustrative themes were identified and a coding system to categorize the data was developed.Results.Ten GP (all men; mean age 49 yrs) were interviewed. All could adequately describe “classic” ankylosing spondylitis (AS) and mentioned chronic back pain and/or stiffness as key features. All GP thought that AS is almost exclusively diagnosed in men. Six GP knew that there is a difference between mechanical back pain and IBP, but could recall only a limited number of variables indicative of IBP, such as awakening night pain (4 GP), insidious onset of back pain (1 GP), improvement with movement (1 GP), and (morning) stiffness (2 GP). Two GP mentioned peripheral arthritis as other SpA features, none mentioned dactylitis or enthesitis. GP awareness of associated extraarticular manifestations was low. Most GP expressed that (practical) referral measures would be useful.Conclusion.GP are aware of “classic”, but longterm features of axSpA. Knowledge about the disease spectrum and early detection is, however, limited. Addressing these issues in training programs may improve recognition of axSpA in primary care. This may ultimately contribute to earlier referral, diagnosis, and initiation of effective treatment in patients with axSpA.

THU0065 Prevalence of Axial Spondyloarthritis among Undiagnosed Chronic Back Pain Patients in the United States: Table 1.

2014 ◽  
Vol 73 (Suppl 2) ◽  
pp. 198.3-199 ◽  
Author(s):  
A. Deodhar ◽  
P.J. Mease ◽  
J.D. Reveille ◽  
J.R. Curtis ◽  
P.M. Karunaratne ◽  
...  
Keyword(s):  
United States ◽  
Back Pain ◽  
Chronic Back Pain ◽  
Axial Spondyloarthritis ◽  
The United States ◽  
Pain Patients

scholarly journals POS0035 ONE IN TWENTY INFLAMMATORY BOWEL DISEASE PATIENTS WHO UNDERWENT ABDOMINOPELVIC COMPUTED TOMOGRAPHY HAVE UNDIAGNOSED AXIAL SPONDYLOARTHRITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 223.1-223
Author(s):  
C. S. E. Lim ◽  
L. Hamilton ◽  
S. Low ◽  
A. Toms ◽  
A. Macgregor ◽  
...  
Keyword(s):  
Computed Tomography ◽  
Inflammatory Bowel Disease ◽  
Back Pain ◽  
Bowel Disease ◽  
Screening Tool ◽  
Chronic Back Pain ◽  
Axial Spondyloarthritis ◽  
Research Support ◽  
Abdominopelvic Ct ◽  
Inflammatory Bowel

Background:The diagnosis of axial spondyloarthritis (axSpA) is challenging and hindered by delay. There may be an opportunity to identify sacroiliitis for further rheumatology review in inflammatory bowel disease (IBD) patients who undergo Computed Tomography (CT) for non-musculoskeletal (MSK) indications.Objectives:To identify what proportion of IBD patients who underwent abdominopelvic CT for non-MSK indications have axSpA and to explore the role of an imaging strategy for identifying axSpA.Methods:Abdominopelvic CT scans of verified IBD patients were identified retrospectively from eight years of imaging archive. Patients between 18-55 yrs. were selected as having the highest diagnostic yield for axSpA. CT review (using criteria from a validated CT screening tool developed by Chan1) was undertaken by a trained radiology team for presence of CT-defined sacroiliitis (CTSI). All CTSI patients were sent a screening questionnaire. Those with self-reported chronic back pain (CBP), duration > 3 months, onset < 45 years were invited for rheumatology review. This included a medical interview, physical examination (joint count, MASES, dactylitis count, BASMI), patient reported outcomes (BASDAI, BASFI, BASGI, Harvey-Bradshaw-Index, Partial-Mayo-Index), relevant laboratory tests (CRP, ESR, HLA-B27), axSpA protocol MRI, and remote review by a panel of experienced rheumatologists with a special interest in axSpA.Results:CTSI was identified in 60 of 301 patients. Thirty-two (53%) responded to the invitation to participate and 27 (84%) were enrolled. Of these, eight had a pre-existing axSpA diagnosis and five did not report chronic back pain. Fourteen patients underwent rheumatological assessment; three of 14 (21.4% [95% CI: 4.7%, 50.8%]) had undiagnosed axSpA. In total, 11 of 27 (40.7% [95% CI: 22.4%, 61.2%]) patients had a rheumatologist verified diagnosis of axSpA.Conclusion:One in five patients (60/301) with IBD who underwent abdominopelvic CT for non-MSK indications have CTSI and at least one in five (11/60) have axSpA. Five percent (3/60) were previously undiagnosed. This highlights a hidden disease burden and a potential strategy for identifying new cases.References:[1]Chan J, Sari I, Salonen D, Inman RD, Haroon N. Development of a Screening Tool for the Identification of Sacroiliitis in Computed Tomography Scans of the Abdomen. J Rheumatol 2016; 43(9); 1687-94.Acknowledgements:We are indebted to Baljeet Dhillon and Shin Azegami for their assistance in the scoring of the CTSI.Disclosure of Interests:Chong Seng Edwin Lim Grant/research support from: AbbVie, Louise Hamilton: None declared, Samantha Low: None declared, Andoni Toms: None declared, Alex MacGregor: None declared, Karl Gaffney Speakers bureau: AbbVie, Eli Lilly, Novartis, UCB Pharma, Consultant of: AbbVie, Eli Lilly, Novartis, UCB Pharma, Grant/research support from: AbbVie, Gilead, Eli Lilly, Novartis, UCB Pharma.

scholarly journals THU0560 PRIMARY CARE PHYSICIAN PERSPECTIVES ON DELAYS IN DIAGNOSIS OF AXIAL SPONDYLOARTHRITIS: A QUALITATIVE STUDY

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 521.1-521
Author(s):  
S. H. Liu ◽  
K. Lapane ◽  
D. Shridharmurthy ◽  
S. Khan ◽  
K. Ferrucci ◽  
...  
Keyword(s):  
Primary Care ◽  
Back Pain ◽  
Primary Care Physicians ◽  
Laboratory Tests ◽  
Screening Tool ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
Inflammatory Back Pain ◽  
Research Support ◽  
Average Delay

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.

scholarly journals Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Kate L. Lapane ◽  
Catherine Dubé ◽  
Katarina Ferrucci ◽  
Sara Khan ◽  
Kristine A. Kuhn ◽  
...  
Keyword(s):  
Primary Care ◽  
Qualitative Research ◽  
Focus Groups ◽  
Research Study ◽  
Axial Spondyloarthritis ◽  
Diagnostic Delay ◽  
The United States ◽  
Patient Experiences ◽  
Qualitative Research Study ◽  
Diagnostic Delays

Abstract Background The average time to a diagnosis for people with axial spondyloarthritis (axSpA) is 7-10 years. Delayed diagnosis may result in increased structural damage, worse physical function, and worse quality of life relative to patients with a timely axSpA diagnosis. Understanding patient experiences may provide insights for how to reduce diagnostic delays. Objective To provide foundational knowledge about patient experiences with healthcare providers leading to an axSpA diagnosis. Methods We conducted an exploratory qualitative research study with six focus groups interviews with participants recruited from three rheumatology clinics within the United States (MA (n = 3); CO (n = 2); PA (n = 1)) that included a total of 26 adults (10 females, 16 males) with rheumatologist confirmed diagnosis of axSpA in 2019. Focus groups were ~ 2 h, audio recorded, transcribed, and subject to dual coding. The codes reviewed were in relation to the patients’ diagnostic experiences. Results Patients described frustrating and lengthy diagnostic journeys. They recognized that the causes of diagnostic delays in axSpA are multifactorial (e.g., no definitive diagnostic test, disease characteristics, lack of primary care provider’s awareness about axSpA, trust). Patients described how doctors minimized or dismissed complaints about symptoms or told them that their issues were psychosomatic. Patients believed the healthcare system contributed to diagnostic delays (e.g., lack of time in clinical visits, difficulty accessing rheumatologists, health insurance challenges). Advice to physicians to reduce the diagnostic delay included allowing time for patients to give a complete picture of their illness experience, listening to, and believing patients, earlier referral to rheumatology, provision of HLA-B27 gene testing, and that physicians need to partner with their patients. Conclusions Patients desire a definitive test that could be administered earlier in the course of axSpA. Until such a test is available, patients want clinicians who listen to, believe, and partner with them, and who will follow them until a diagnosis is reached. Educating primary care clinicians about guidelines and referral for diagnosis of axSpA could reduce diagnostic delay.

59. General medicine residents' perception of the mini-CEXs

2007 ◽  
Vol 30 (4) ◽  
pp. 61
Author(s):  
S. Malhotra ◽  
R. Hatala ◽  
C.-A. Courneya
Keyword(s):  
Internal Medicine ◽  
Medical Education ◽  
Focus Group ◽  
Qualitative Study ◽  
Focus Groups ◽  
General Medicine ◽  
Clinical History ◽  
Phenomenological Approach ◽  
Medical Teacher ◽  
The Impact

The mini-CEX is a 30 minute observed clinical encounter. It can be done in the outpatient, inpatient or emergency room setting. It strives to look at several parameters including a clinical history, physical, professionalism and overall clinical competence. Trainees are rated using a 9-point scoring system: 1-3 unsatisfactory, 4-6 satisfactory and 7-9 superior. Eight months after the introduction of the mini-CEX to the core University of British Columbia Internal Medicine Residents, a one hour semi-structured focus group for residents in each of the three years took place. The focus groups were conducted by an independent moderator, audio-recorded and transcribed. Using a phenomenological approach the comments made by the focus groups participants were read independently by three authors, organized into major themes. In doing so, several intriguing common patterns were revealed on how General Medicine Residents perceive their experience in completing a mini-CEX. The themes include Education, Assessment and Preparation for the Royal College of Physicians and Surgeons Internal Medicine exam. Resident learners perceived that the mini-CEX process provided insight into their clinical strengths and weaknesses. Focus group participants favored that the mini-CEX experience will benefit them in preparation, and successful completion of their licensing exam. Daelmans HE, Overmeer RM, van der Hem-Stockroos HH, Scherpbier AJ, Stehouwer CD, van der Vleuten CP. In-training assessment: qualitative study of effects on supervision and feedback in an undergraduate clinical rotation. Medical Education 2006; 40(1):51-8. De Lima AA, Henquin R, Thierer J, Paulin J, Lamari S, Belcastro F, Van der Vleuten CPM. A qualitative study of the impact on learning of the mini clinical evaluation exercise in postgraduate training. Medical Teacher January 2005; 27(1):46-52. DiCicco-Bloom B, Crabtree BF. The Qualitative Research Interview. Medical Education 2006; 40:314-32.

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.

Listening to the body and talking to myself – the impact of chronic lower back pain: A qualitative study

2010 ◽  
Vol 47 (5) ◽  
pp. 586-592 ◽  
Author(s):  
Marie Crowe ◽  
Lisa Whitehead ◽  
Mary Jo Gagan ◽  
G. David Baxter ◽  
Avin Pankhurst ◽  
...  
Keyword(s):  
Back Pain ◽  
Qualitative Study ◽  
Lower Back Pain ◽  
The Body ◽  
Chronic Lower Back Pain ◽  
Lower Back ◽  
The Impact
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