Axial spondyloarthritis guidelines - aiming for maximum impact.

PURPOSE OF REVIEW: This review discusses international clinical practice guidelines (CPGs) for axial spondyloarthritis (axSpA) focusing on methodology, guideline quality, and implementation. RECENT FINDINGS: The Assessment of SpondyloArthritis International Society/European Alliance of Associations for Rheumatology (ASAS/EULAR) and Pan-American League of Associations for Rheumatology (PANLAR) recently published axSpA CPGs and updates of the American College of Rheumatology/Spondylitis Association of America/Spondyloarthritis Research and Treatment Network (ACR/SAA/SPARTAN) and Asia-Pacific League of Associations for Rheumatology (APLAR) CPGs are expected. GRADE has emerged as the dominant framework for CPG development and has been used by three of the four international axSpA guidelines. Notable differences exist among these guidelines in the way that the recommendations are presented. Two of the four acknowledge the need for implementation strategies, but little detail about this is provided. The few studies that have evaluated the implementation of axSpA CPGs have identified poor adherence to recommendations on physical therapy/exercise and disease activity monitoring. Implementation science has identified many barriers and facilitators affecting guideline uptake, including those related to healthcare professionals and to the guidelines themselves. Creation of a tailored implementation plan simultaneously with the CPG is recommended. SUMMARY: While methodological rigor in the creation of evidence-based recommendations is the focus of CPG development, recommendations must be presented in a user-friendly format that makes them easy to apply. 'Living guidelines' could facilitate keeping content up to date. Implementation is critical for the success of a CPG and should be emphasized in future axSpA guideline updates. Further research is needed to better understand the factors impacting the successful implementation of axSpA CPGs.

Axial Spondyloarthritis Treatment Recommendations and Disease Activity Monitoring in Clinical Practice: Results of an Online Survey.

OBJECTIVE: Clinical practice guidelines are not always followed consistently. To better understand potential barriers to the implementation of treatment recommendations in axial spondyloarthritis and ankylosing spondylitis (axSpA/AS), an online survey was conducted. METHODS: Email invitations were sent to US rheumatology care providers in January 2023. The questionnaire included 20 questions, with an estimated completion time of 5-7 minutes. RESULTS: One hundred four of 441 (24%) invitees participated, including 80/104 (77%) board-certified rheumatologists and 20/104 (19%) fellows. Survey participants identified UpToDate (85%), treatment guidelines (74%), and colleagues (54%) as relevant sources of knowledge for managing axSpA/AS. Of the participants, 64% and 53% considered themselves to be at least moderately familiar with the American College of Rheumatology/Spondylitis Association of America/Spondyloarthritis Research and Treatment Network (ACR/SAA/SPARTAN) and Assessment of Spondyloarthritis international Society/European Alliance of Associations for Rheumatology (ASAS/EULAR) treatment recommendations for axSpA/AS, respectively. Whereas 69% of participants agreed or strongly agreed that disease activity scores are useful for making treatment decisions in axSpA/AS, only 37% measure patient-reported outcomes (PROs) frequently (≥ 50% of clinic visits) while 82% do so for C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR). PROs are typically recorded during clinic encounters (65%) and CRP/ESR are obtained after the visit (86%). Of the participants, 57% and 47% considered the Bath Ankylosing Spondylitis Disease Activity Index and Ankylosing Spondylitis Disease Activity Score to be at least moderately useful for measuring disease activity in axSpA/AS, respectively; 41% and 37% thought the same about the ASAS 20% improvement criteria and Clinical Disease Activity Index, respectively. CONCLUSION: Treatment guidelines are an important resource for rheumatologists who manage patients with axSpA/AS. Although there is general agreement that disease activity monitoring is important, the implementation of the respective recommendations is lacking. Reasons may include lack of familiarity and an underdeveloped infrastructure to efficiently collect PROs.

Living with axial spondyloarthritis: a cross-sectional survey of patient knowledge and perceptions.

Diagnosis and effective treatment of axial spondyloarthritis (AxSpA) are often delayed due to inadequate awareness and poor patient-physician communication. Some AxSpA patients fail to maintain an active lifestyle by exercising regularly, further worsening their disease management. The evolving concept of patient-centred care necessitates better understanding of patient awareness and their needs. We aimed to survey AxSpA patients to reflect on healthcare planning and management perspectives. Our self-administered questionnaire focused on perceptions of AxSpA diagnosis and management, particularly exploring issues of physical activity and active lifestyle. Satisfaction with AxSpA medical care and its accessibility, diagnostic delays, patient-physician communication, and support for disease management were also explored. This offline survey was arranged at the Department of Rheumatology, Immunology, and Internal Medicine of Jagiellonian University Medical College and Krakow University Hospital. We surveyed patients with AxSpA attending outpatient clinics between December 1st, 2023 and April 22nd, 2024. The questionnaire included questions on types of physical activities, barriers to exercising, satisfaction with medical care, patient-physician interactions, diagnostic delays, and use of teleconsultations. A total of 117 patients with AxSpA were enrolled (mean age 41.62 years). The majority (n = 93, 79.5%) were employed. There was a male predominance (69, 59%). The average diagnostic delay was 5.5 years. Notably, 104 (88.9%) responders perceived physical activity as a factor influencing their disease course. However, only 32 (27.35%) managed to exercise regularly (≥ 30 min, 2-3 times a week). The majority (70, 59.83%) were irregularly engaged in some form of physical activity, with 15 (12.8%) not exercising at all, and nearly half (48%) reported at least one barrier to maintaining a physically active lifestyle. Pain (32, 27.35%), fatigue (27, 23.08%), lack of motivation (17, 14.53%), and lack of time (12, 10.26%) were noted as barriers to exercising. The respondents preferred to exercise at home. The survey identified critical areas where patient dissatisfaction or uncertainty were notably prevalent: 38 (32.5%) were uncertain and 35 (30%) were dissatisfied with rehabilitation access. For spa therapy, 63 (53.85%) reported uncertainty and 23 (19.7%) expressed dissatisfaction. Only 48 (41%) were treated by a rehabilitation specialist last year. Only 23% of AxSpA patients took part in teleconsultations last year, and 65% preferred in-person visits. While AxSpA patients recognize the importance of physical activity, significant barriers exist to engaging them regularly in exercising. Addressing these barriers through personalized, motivational, and educational strategies could improve patient outcomes. Improving patient satisfaction with healthcare services, particularly in areas of rehabilitation and physician-patient communication, is crucial for improving the overall care of AxSpA patients.

Evaluation of a hybrid telehealth care pathway for patients with axial spondyloarthritis including self-sampling at home: results of a longitudinal proof-of-concept mixed-methods study (TeleSpactive).

Patients with axial spondyloarthritis (axSpA) require close monitoring to achieve the goal of sustained disease remission. Telehealth can facilitate continuous care while relieving scarce healthcare resources. In a mixed-methods proof-of-concept study, we investigated a hybrid telehealth care axSpA pathway in patients with stable disease over 6 months. Patients used a medical app to document disease activity (BASDAI and PtGA bi-weekly, flare questionnaire weekly). To enable a remote ASDAS-CRP (TELE-ASDAS-CRP), patients used a capillary self-sampling device at home. Monitoring results were discussed and a decision was reached via shared decision-making whether a pre-planned 3-month on-site appointment (T3) was necessary. Ten patients completed the study, and eight patients also completed additional telephone interviews. Questionnaire adherence was high; BASDAI (82.3%), flares (74.8%) and all patients successfully completed the TELE-ASDAS-CRP for the T3 evaluation. At T3, 9/10 patients were in remission or low disease activity and all patients declined the offer of an optional T3 on-site appointment. Patient acceptance of all study components was high with a net promoter score (NPS) of +50% (mean NPS 8.8 ± 1.5) for self-sampling, +70% (mean NPS 9.0 ± 1.6) for the electronic questionnaires and +90% for the T3 teleconsultation (mean NPS 9.7 ± 0.6). In interviews, patients reported benefits such as a better overview of their condition, ease of use of telehealth tools, greater autonomy, and, most importantly, travel time savings. To our knowledge, this is the first study to investigate a hybrid approach to follow-up axSpA patients including self-sampling. The positive results observed in this scalable proof-of-concept study warrant a larger confirmatory study.

Knowledge, perceptions, and practices of axial spondyloarthritis diagnosis and management among healthcare professionals: an online cross-sectional survey.

Spondyloarthritis (SpA) is a group of inflammatory disorders, including axial SpA (axSpA), characterized by inflammation in the spine and sacroiliac joints. Healthcare professionals have a crucial role in diagnosing and managing axSpA. Assessing their knowledge, perceptions, and practices is essential to enhance patient care. The objective of this study is to evaluate these factors by conducting an online survey. This online survey was performed using SurveyMonkey.com to assess healthcare professionals' knowledge, perceptions, and practices related to axSpA diagnosis, management, and monitoring. The questionnaire included questions about definitions, management strategies, monitoring approaches, treatment options, and barriers to care. Convenience sampling was used, and the data were analyzed descriptively by Microsoft Excel. One hundred sixty-four healthcare professionals participated; most respondents were rheumatologists from various geographic locations (27 countries). Most participants were familiar with axSpA definitions and diagnostic criteria, demonstrating high expertise. Variations were seen in follow-up intervals and diagnostic preferences, reflecting clinical heterogeneity. Seventy-two (43.9%) individuals had a multidisciplinary team, frequently including rheumatologists, physiotherapists, and radiologists. Of the participants, 73 (44.5%) had online/telephone follow-up sessions. The pharmacological and non-pharmacological treatment approaches varied, pointing to the importance of personalized care. Glucocorticoid use varied among countries. Recognizing inflammatory back pain, interpreting radiographs, and diagnosing early was essential to medical education. This study provides beneficial data on healthcare professionals' knowledge, perceptions, and practices regarding axSpA. While diagnostic familiarity and multidisciplinary approach are positives, there is a potential to standardize management, improve telemedicine services, remove barriers to physical activity, and optimize treatment options.

Diagnosis, monitoring, and management of axial spondyloarthritis.

Axial spondyloarthritis (axSpA) is a chronic condition predominantly affecting the spine and sacroiliac joints. This article provides an in-depth overview of the current approaches to diagnosing, monitoring, and managing axSpA, including insights into developing terminology and diagnostic difficulties. A substantial portion of the debate focuses on the challenging diagnostic procedure, noting the difficulty of detecting axSpA early, particularly before the appearance of radiologic structural changes. Despite normal laboratory parameters, more than half of axSpA patients experience symptoms. X-ray and magnetic resonance imaging (MRI) are essential for evaluating structural damage and inflammation. MRI can be beneficial when there is no visible structural damage on X-ray as it can help unravel bone marrow edema (BME) as a sign of ongoing inflammation. The management covers both non-pharmacological and pharmacological approaches. Lifestyle modifications, physical activity, and patient education are essential components of the management. Pharmacological therapy, including nonsteroidal anti-inflammatory drugs (NSAIDs) and biologic disease-modifying anti-rheumatic drugs (bDMARDs), are explored, emphasizing individualized treatment. To effectively manage axSpA, a comprehensive and well-coordinated approach is necessary, emphasizing the significance of a multidisciplinary team. Telehealth applications play a growing role in axSpA management, notably in reducing diagnostic delays and facilitating remote monitoring. In conclusion, this article underlines diagnostic complexities and emphasizes the changing strategy of axSpA treatment. The nuanced understanding offered here is designed to guide clinicians, researchers, and healthcare providers toward a more comprehensive approach to axSpA diagnosis and care.

Ten-year clinical outcome of recent-onset axial spondyloarthritis: Results from the DESIR inception Cohort.

OBJECTIVES: This study aimed to evaluate the 10-year clinical outcome of patients with recent-onset axial spondyloarthritis (axSpA). METHODS STUDY DESIGN: The DESIR cohort is an inception cohort of axSpA patients. METHODS DIAGNOSIS AND MANAGEMENT: The diagnosis and management of patients were based on the decision of the treating rheumatologist. METHODS STATISTICAL ANALYSIS: Both complete cases and imputed data analyses were conducted. RESULTS: Of the 708 enrolled patients, 45 were excluded due to a change in the baseline diagnosis, 3 patients died, and 300 were lost to follow-up over the 10years. In the completer population, one patient required bilateral total hip replacement, and 56 patients received a pension due to invalidity. The prevalence of main extra-musculoskeletal features increased from baseline to year 10: psoriasis from 18% to 30%, acute anterior uveitis from 10% to 18%, and inflammatory bowel disease from 5% to 10%. The most frequent comorbidity was hypertension, with an increase from 5% to 15% from baseline to year 10. In the imputed data analysis the estimated proportions of patients with an acceptable status at year 10 were 70% [95% CI: 63; 77] for acceptable PASS, 43% [95% CI: 37; 49] for BASDAI<3, and 48% [95% CI: 41; 56] for ASDAS<2.1. CONCLUSION: These findings suggest that despite a quite favorable 10-year outcome exists for severe outcomes, a large proportion of patients present with an important disease burden reflected by patient-reported outcomes. This information can be valuable for providing patients with information at the time of diagnosis.

Põletikulise liigeshaigusega patsiendi käsitlus esmatasandil / Management of the patient with inflammatory joint disease in primary care

Inflammatory joint diseases are a group of diseases characterized by autoimmune inflammation in the joints and sometimes in other tissues and organs. The most common inflammatory joint diseases are rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) and spondyloarthritis (SpA). Spondyloarthritis is a group of inflammatory diseases that includes ankylosing spondylitis (AS), psoriatic arthritis (PsA), reactive arthritis, and inflammatory bowel disease-related arthritis. Diseases of this group are characterized by peripheral arthritis and/or sacroiliitis with or without spondylitis. The most common inflammatory joint disease in Estonia is RA, which typically manifests as symmetrical polyarthritis. The prevalence of RA in Estonia is 0.46% (1). People between the ages of 55 and 74 get sick the most, women up to three times more often than men (2). JIA is an inflammatory joint disease that begins in childhood. JIA usually progresses as oligoarthritis, somewhat less often as mono- or polyarthritis. According to the data of the survey of first cases of JIA in Estonia in 1998­2000, the first incidence was 21.7 cases per 100,000 children aged 0­15 years (3). The disease most often occurs in early childhood or adolescence. Of the spondyloarthritis, PsA, reactive arthritis, and arthritis related to inflammatory bowel disease are the most common types of peripheral arthritis. AS typically involves the sacroiliac joints and spine, sometimes peripheral joints. Spondyloarthritis usually manifests as oligoarthritis, while PsA can often present as polyarthritis and can initially be difficult to distinguish from RA. All of the aforementioned inflammatory joint diseases are characterized by the fact that joint inflammation can lead to joint damage and, as a result, joint dysfunction and a decrease in the quality of life of those affected. The pain associated with joint inflammation and the established joint deformations significantly reduce the working capacity of those affected, making them more and more dependent on outside help and the social system as the disease progresses. However, the prognosis of the disease has improved significantly over the past decades due to earlier diagnosis, new drugs and the understanding that early intensive treatment significantly improves the prognosis. With timely treatment, the patient continues his normal life and maintains the ability to work and self-sufficiency for many years. In Estonia, the primary diagnosis and treatment monitoring of inflammatory joint diseases in primary care is sometimes different, and the movement of the patient between representatives of different specialties is not always optimal. The purpose of this guide is to standardize the knowledge of healthcare workers about the diagnosis and treatment of inflammatory joint diseases in order to promote faster recognition of the disease. It is also hoped that this guide will improve the cooperation between family doctors and other specialties in the treatment of patients with inflammatory joint diseases and in keeping the chronic disease under control.

Põletikulised liigesehaigused on rühm haiguseid, mida iseloomustab autoimmuunse põletiku esinemine liigestes ning mõnikord ka teistes kudedes ja organites. Põletikuliste liigesehaiguste hulka kuuluvatest haigustest esinevad kõige sagedamini reumatoidartriit (RA), juveniilne idiopaatiline artriit (JIA) ja spondüloartriit (SpA). Spondüloartriidid on rühm põletikulisi haiguseid, kuhu kuuluvad anküloseeriv spondüliit (AS), psoriaatiline artriit (PsA), reaktiivne artriit ja põletikulise soolehaigusega seostuv artriit. Selle rühma haigustele on iseloomulik perifeerne artriit ja/või sakroiliit koos spondüliidiga või ilma. Kõige sagedasem põletikuline liigesehaigus Eestis on RA, mis avaldub tüüpiliselt sümmeetrilise polüartriidina. RA levimus Eestis on 0,46% (1). Kõige enam haigestuvad 55­74-aastased inimesed, naised kuni kolm korda sagedamini kui mehed (2). JIA on lapseeas algav põletikuline liigesehaigus. Tavaliselt kulgeb JIA oligoartriidina, mõnevõrra harvem mono- või polüartriidina. Aastatel 1998­2000 Eestis tehtud JIA esmasjuhtude uuringu andmetel oli esmashaigestumus 21,7 juhtu 100 000 0­15-aastase lapse kohta (3). Kõige sagedamini haigestutakse väikelapse- või murdeeas. Spondüloartriitidest kulgevad perifeerse artriidiga põhiliselt PsA, reaktiivne artriit ja põletikulise soolehaigusega seostuv artriit. AS haarab tüüpiliselt sakroiliakaalliigesed ja lülisamba, mõnikord ka perifeersed liigesed. Spondüloartriidid avalduvad tavaliselt oligoartriidina, PsA võib aga sageli kulgeda ka polüartriidina ja olla esialgu RA-st raskesti eristatav. Kõikidele eelnimetatud põletikulistele liigesehaigustele on iseloomulik, et liigesepõletik võib viia liigesekahjustuste tekkeni ning sellest tulenevalt liigeste funktsioonihäireni ja haigestunute elukvaliteedi languseni. Liigesepõletikuga seonduv valu ja väljakujunenud liigesedeformatsioonid vähendavad oluliselt haigestunute töövõimet, muutes nad haiguse arenedes üha enam sõltuvaks kõrvalisest abist ja sotsiaalsüsteemist. Haiguse prognoos on viimaste aastakümnete jooksul siiski oluliselt paranenud tänu varasemale diagnoosimisele, uutele ravimitele ning arusaamale, et varane intensiivne ravi parandab prognoosi märgatavalt. Õigeaegse ravi korral jätkab patsient oma tavapärast elu ning säilitab töövõime ja iseseisva toimetuleku paljudeks aastateks. Eestis on põletikuliste liigesehaiguste esmane diagnostika ja ravi jälgimine esmatasandi arstiabis kohati erinev, samuti ei ole patsiendi liikumine erinevate erialade esindajate vahel alati optimaalne. Käesoleva juhendi eesmärk on ühtlustada tervishoiutöötajate teadmisi põletikuliste liigesehaiguste diagnostika ja ravi kohta, et soodustada haiguse kiiremat äratundmist. Samuti loodetakse käesoleva juhendiga tõhustada perearstide ja teiste erialade koostööd põletikuliste liigesehaigustega patsientide käsitlemisel ning kroonilise haiguse kontrolli all hoidmisel.