The Taiwanese Map of Axial Spondyloarthritis: Living with the Condition.

Background and Objective: The International Map of Axial Spondyloarthritis (IMAS) explores the physical, psychological, and social experiences of patients with axial spondyloarthritis (axSpA). This initiative is now being expanded to Taiwan as the Taiwanese Map of Axial Spondyloarthritis (TMAS). We aim to provide rheumatologists with insights into the perspectives of Taiwanese patients, enabling physicians to better understand the unmet needs of these patients and optimize their management. Materials and Methods: The TMAS is a cross-sectional study gathering data through an online survey of axSpA patients, promoted by the Ankylosing Spondylitis Caring Society of R.O.C. (ASCARES), conducted from July 2017 to March 2018 by Ipsos, and analyzed by the Health & Territory Research (HTR) group of the University of Seville. The questionnaire includes 99 questions that cover domains such as patient profile, diagnosis, habits/lifestyle, employment status, physical/psychological health status, social support, use of healthcare services, and treatments. Results: A total of 112 axSpA patients were included in this survey. The mean age was 38.6 years and 75.0% were male. The average diagnostic delay was 3 years, and 19.6% reported extra-articular manifestations. Out of the 49 respondents who reported HLA-B27 information, 35 were HLA-B27-positive. The disease burden was high, with a mean BASDAI score of 4.9 and 75.9% having a mild to moderate degree of spinal stiffness. Furthermore, they were socially and psychologically burdened, with 88.4% experiencing work-related issues and 25.9% suffering from anxiety. Conclusions: The TMAS sheds light on the overall perspective of axSpA patients in Taiwan. The TMAS shows shorter diagnostic delay compared to patients from the EMAS. However, high disease activity and significant psychological distress still trouble the patients, causing functional impairments and even leading to career failures. Understanding the perspective of axSpA patients can help rheumatologists adjust treatment strategies to their unmet needs and improve their disease outcomes.

Implementation of the recommendations for the psychological management of patients with spondyloarthritis and inflammatory bowel disease / Implementación de las recomendaciones para el manejo psicológico de pacientes con espondiloartritis y enfermedad inflamatoria intestinal

Objective: To assess and improve the level of implementation of the recommendations for the psychological management of patients with spondyloarthritis (SpA) and associated inflammatory bowel disease (IBD). Methods: Qualitative study. We performed a narrative literature review to identify the recommendations for the psychological management of SpA and associated IBD and to explore their level of implementation. Based on the findings, we developed a national survey to assess: (1) current level of knowledge and implementation of the recommendations; (2) attitudes towards the recommendations; and (3) barriers and facilitators to their implementation. The results of the review and survey were discussed by a multidisciplinary group of 9 expert rheumatologists and gastroenterologists, who defined implementation strategies to increase the uptake of the recommendations. Results: The review included 4 articles, 2 of them included direct recommendations on the identification and management of psychological problems in patients with SpA and IBD. None assessed the level of implementation of the recommendations in routine clinical practice. Our survey showed a great lack of awareness and implementation of the recommendations, even though psychological issues are very relevant for health professionals. Lack of time, resources, and knowledge are considered the main barriers to adherence to the recommendations. We propose several implementation strategies related to educational activities, clinical practice, and others to increase the uptake of reported recommendations. Conclusions: Further research and efforts are required to achieve behaviour changes in clinical practice to improve the identification and management of psychological problems and needs in patients with SpA and IBD. (AU)

Objetivo: Analizar y mejorar la implementación de las recomendaciones sobre la evaluación y el manejo psicológico de pacientes con espondiloartritis (EspA) y enfermedad inflamatoria intestinal (EII) asociada. Métodos: Estudio cualitativo. Se realizó una revisión narrativa de la literatura para identificar las recomendaciones sobre el manejo psicológico de pacientes con EspA y EII asociada y explorar su grado de implementación. En base a ello se diseñó una encuesta para analizar el nivel de conocimiento de las recomendaciones, las barreras y los facilitadores a su implementación. Todos los resultados fueron discutidos por un grupo multidisciplinar de expertos reumatólogos y gastroenterólogos que definieron estrategias para incrementar el seguimiento de las recomendaciones. Resultados: La revisión incluyó 4 artículos, de los que 2 aportan recomendaciones directas sobre la evaluación y el manejo psicológico de pacientes con EspA y EII. Ninguno ha evaluado el grado de implementación de las recomendaciones en la práctica diaria. La encuesta mostró que el conocimiento de las mismas y la implementación de estas recomendaciones son prácticamente nulos a pesar de ser un tema muy relevante para los profesionales que manejan estos pacientes. La falta de tiempo, la escasez de recursos y la falta de reconocimiento se consideran las principales barreras para la correcta identificación y manejo de los aspectos psicológicos en pacientes con EspA y EII. Se proponen una serie de actividades formativas y relacionadas con la práctica clínica para mejorar esta situación. Conclusiones: Se precisa seguir trabajando en la implementación para conseguir cambios en la práctica diaria para mejorar la evaluación y el manejo psicológico de los pacientes con EspA y EII. (AU)

Impairment in cognitive function in patients with axial spondyloarthritis and psoriatic arthritis.

Spondyloarthritis may contribute to deficits in cognition. The objective of this study was to compare cognitive abilities in patients with axial spondyloarthritis (axSpA) or psoriatic arthritis (PsA) with matched reference groups. This investigator-initiated, cross-sectional, exploratory study of adults with axSpA or PsA was conducted at two German rheumatology centres (November 2018-September 2019). All data on patient and disease characteristics and cognitive abilities were collected at a single visit. Cognitive function was assessed by the previously validated Memory and Attention Test subscores of selective attention, episodic working memory, and episodic short-term memory and compared with subscores from healthy age-, sex-, and education-matched reference subjects. The mean patient age was 51.1 and 55.8 years in the axSpA (n = 101) and PsA (n = 117) groups, respectively, and mean symptom duration was 13.7 and 10.3 years. Compared with matched reference subjects, axSpA and PsA patients showed significant impairments in selective attention (mean difference of -6.5 and -4.5, respectively, on a 45-point scale; P < 0.001 for both) and no significant differences in episodic working memory. The PsA cohort, but not the axSpA cohort, had significantly better episodic short-term memory subscores compared with matched reference subjects (mean change of 2.0 on a 15-point scale; P < 0.001). Explorative subgroup analyses were unable to identify factors influencing cognitive changes, including disease activity, pain, and function, but may have been underpowered. We conclude that impairments in selective attention may impact the ability of axSpA and PsA patients to process information. These findings warrant additional studies, including longitudinal analyses, in patients with spondyloarthritis.

Work-Related Issues and Physical and Psychological Burden in Canadian Patients With Axial Spondyloarthritis: Results From the International Map of Axial Spondyloarthritis.

OBJECTIVE: To identify factors associated with work-related issues in Canadian patients with axial spondyloarthritis. METHODS: Data from 542 Canadian patients who participated in the International Map of Axial Spondyloarthritis online survey were analyzed. Participants who were employed, unemployed, or on short-term disability were included in this analysis. Regression analysis was used to study the association between work-related issues, disease activity (Bath Ankylosing Spondylitis Disease Activity Index [BASDAI]), and psychological distress (12-item General Health Questionnaire [GHQ-12]). RESULTS: The mean age of surveyed participants was 44.3 (SD 13.9) years, 81% were university educated, and 52.6% employed. A substantial proportion had high disease activity (BASDAI ≥ 4, 72.1%) and psychological distress (GHQ-12 ≥ 3, 53.1%); 81% had work-related issues. This study analyzed responses from a subset of participants who were either employed, unemployed, or on short-term disability (n = 339). Ninety percent of this subset reported at least 1 work-related issue in the year before questionnaire completion, with the most frequent being absenteeism (49.3%) and missing work for healthcare provider visits (42.5%). Factoring in disability benefits eliminated the association between work-related issues and disease activity for all variables except fatigue (r = 0.217; P = 0.03) and discomfort (r = 0.196; P = 0.047). Difficulty fulfilling working hours (ß 2.342, 95% CI 1.413-3.272) and effect on professional advancement (ß 1.426, 95% CI 0.355-2.497) were associated with psychological distress. In the presence of disability benefits, only the effect on professional advancement remained (ß 2.304, 95% CI 0.082-4.527). CONCLUSION: Work-related issues are associated with worse patient-reported outcomes, both physical and psychological.

Correlates of physical activity in adults with spondyloarthritis and rheumatoid arthritis: a systematic review.

Physical activity (PA) is a primary non-pharmacological treatment option for those living with rheumatoid arthritis (RA) and spondyloarthritis (SpA). The aim of this systematic literature review was to summarize and present an updated synthesis of the factors associated with PA in the RA and SpA populations. A tailored search of PubMed (inc. Medline), Web of Science, Embase, APA PsycNET, and Scopus was conducted for research published between 2004 and June 2019. Methodological quality was assessed using The National Institutes of Health (NIH) Quality Assessment Tools for Observational Cohort and Cross-sectional Studies, Case-Control Studies, and Controlled Intervention Studies. Forty RA and eleven SpA articles met the inclusion criteria. Methodological quality was generally fair to good, with two RA studies rated as poor. Correlates are discussed in the sociodemographic, physical, psychological, social, and environmental categories. Environmental factors were not measured in any RA study. In individuals living with RA, consistent positive associations were found between PA and high-density lipoprotein, self-efficacy, and motivation. Consistent negative associations were found for functional disability and fatigue. In individuals with SpA, consistent positive associations were found between PA and quality of life, and consistent negative associations with functional disability. Physical and psychological factors are most consistently related with PA parameters in those living with RA and SpA. Many variables were inconsistently studied and showed indeterminant associations. Studies with prospective designs are needed to further understand the factors associated with PA in these populations, especially in those living with SpA.

Similarities and differences between non-radiographic and radiographic axial spondyloarthritis: The patient perspective from the Spanish atlas.

AIM: Although non-radiographic axial spondyloarthritis (EspAax-nr) is well understood within health institutions, being considered along with radiographic EspAax (EspAax-r) as part of the same disease spectrum, patient understanding is unknown. The aim is to describe the patient's knowledge of the EspAax-nr entity. METHODS: Atlas 2017, promoted by the Spanish Federation of Spondylarthritis Associations (CEADE), aims to comprehensively understand the reality of EspAax patients from a holistic approach. A cross-sectional on-line survey of unselected patients with self-reported EspAax diagnosis from Spain was conducted. Participants were asked to report their diagnosis. Socio-demographic, disease characteristics and patient-reported outcomes (PROs) were compared between those patients self-reporting as EspAax-nr and EspAax-r. RESULTS: 634 EspAax patients participated. Mean age 45.7±10.9 years, 50.9% female and 36.1% university-educated. 35 (5.2%) self-reported as EspAax-nr. Compared to EspAax-r patients, those with EspAax-nr were more frequently women (48.6% vs 91.4%, p<0.001), had longer diagnostic delay (10.1±8.9 vs 8.5±7.6 years), higher psychological distress (GHQ-12: 7.5±4.9 vs 5.6±4.4) and similar degree of disease activity (BASDAI: 5.7±2.1 vs 5.7±2.0), and unemployment rates (20.0% vs 21.6%). 20.0% of EspAax-nr received biologics vs 36.9% of EspAax-r, p=0.043. Visits to the rheumatologist in the past year were similar in both groups (3.8±4.5 vs 3.2±3.8), while GP visits were much higher within EspAax-nr (8.0±10.7 vs 4.9±13.3 p=0.003). CONCLUSION: For the first time, EspAax-nr characteristics and PROs have been analyzed from the patient's perspective. Both groups reported similar trends with the exception of EspAax-nr being more frequently women, younger, having longer diagnostic delay and lower use of biologic therapy.

Understanding the Disease Burden of Unemployed Patients With Axial Spondyloarthritis: Results From the Spanish Atlas 2017.

OBJECTIVE: To evaluate differences in sociodemographic factors and patient-reported outcomes (PROs) between unemployed and employed patients with axial spondyloarthritis (axSpA), and to explore work-related issues (WRIs). METHODS: Data from an online survey of 680 unselected patients of the Atlas of Axial Spondyloarthritis in Spain 2017 were analyzed. Active workforce participants were divided into employed and unemployed groups according to International Labour Organization definitions. Sociodemographic characteristics, PROs (Bath Ankylosing Spondylitis Disease Activity Index [0-10], Spinal Stiffness Index [3-12], Functional Limitation Index [0-54], and psychological distress through the 12-item General Health Questionnaire [0-12]) were assessed. Logistic regression analysis was used to evaluate the association with unemployment status. RESULTS: Four hundred fifteen (63.6%) patients with axSpA were categorized in the active population, of which 325 (78.3%) were employed and 90 (21.7%) unemployed. Of the unemployed patients, 62.8% (n = 54) declared that their joblessness was due to axSpA. Of the employed patients, 170 (54.3%) reported WRIs in the year prior to the survey, the most frequent being difficulty fulfilling working hours (44.1%), missing work for doctor appointments (42.9%), and taking sick leave (37.1%). Being unemployed was associated with lower educational level (OR = 2.92), disease activity (OR = 1.37), spinal stiffness (OR = 1.21), functional limitation (OR = 1.05), worse mental health (OR = 1.15), anxiety (OR = 2.02), and depression (OR = 2.69) in the univariable models; and with lower educational level (OR = 2.76) and worse mental health (OR = 1.15) in the multivariable analysis. CONCLUSION: Results show significant differences between employed and unemployed patients with axSpA. Employed patients with axSpA endure many problems at work related to their condition, whereas unemployed patients present worse disease outcomes associated with greater psychological distress.

Central sensitization, illness perception and obesity should be considered when interpreting disease activity in axial spondyloarthritis.

OBJECTIVES: Many patients with axial spondyloarthritis (axSpA) report persistent pain even when treated with anti-inflammatory agents. Our aim was to explore the presence of central sensitization (CS) and different types of illness perceptions in patients with axSpA, and to assess their associations with disease activity assessments. METHODS: Consecutive outpatients from the Groningen Leeuwarden Axial Spondyloarthritis (GLAS) cohort were included. Besides standardized assessments, patients filled out the Central Sensitization Inventory (CSI), Illness Perception Questionnaire (IPQ-R) and Pain Catastrophizing Scale (PCS). Univariable and multivariable linear regression analyses were used to investigate the association between questionnaire scores, patient characteristics and disease activity assessments ASDASCRP, BASDAI and CRP. RESULTS: We included 182 patients with a mean symptom duration of 21.6 years. Mean ASDASCRP was 2.1, mean BASDAI 3.9, and median CRP 2.9. Mean CSI score was 37.8 (scale 0-100) and 45% of patients scored ≥40, indicating a high probability of CS. CSI score, IPQ-R domain identity (number of symptoms the patient attributes to their illness), and IPQ-R domain treatment control (perceived treatment efficacy), and obesity were significantly and independently associated with both ASDASCRP and BASDAI, explaining a substantial proportion of variation in these disease activity scores (R2=0.35 and R2=0.47, respectively). Only obesity was also independently associated with CRP. CONCLUSION: CS may be common in patients with long-term axSpA. CS, as well as specific illness perceptions and obesity were all independently associated with the widely used (partially) patient-reported disease activity assessments ASDASCRP and BASDAI. Treating physicians should take this into account in the follow-up and treatment of their patients.

Increased proportion of comorbidities but no deterioration of sexual quality of life during a 5-year follow-up in patients with axial spondyloarthritis in the biologic treatment era.

OBJECTIVE: To explore patient perception of sexual quality of life (SQOL), an important category of QOL, in male and female patients with axial SpA (axSpA) after a 5 year follow-up. METHODS: A broad spectrum of demographic, disease-related, treatment and SQOL data was collected at baseline and at the 5 year follow-up. SQOL was assessed by the SQOL-Female (SQOL-F) questionnaire. For statistical analysis, McNemar's tests, paired t-tests and multiple regression analyses were applied. RESULTS: A total of 245 axSpA patients (168 men and 77 women) from outpatient clinics were examined (mean age 46 years, mean disease duration 11.9 years at baseline). Compared with baseline, the patients had lower CRP, lower Maastricht Ankylosing Spondylitis Enthesitis Scores, lower BASFI scores, less use of smoking and significantly more patients were treated with biologic DMARDs at the 5 year follow-up. Patient perception of SQOL was basically unchanged at the 5 year follow-up despite a significantly increased proportion of comorbidities, including cardiovascular, endocrine and gastrointestinal disease. A decrease in SQOL after 5 years was observed only in patients exercising <1 h/week at baseline (P = 0.048) and in patients >65 years old. CONCLUSION: In our axSpA patients, no statistically significant changes in SQOL were observed over 5 years, despite a significant increase in comorbidities. Overall disease symptoms decreased, indicating better disease control. Increased use of biologic drugs at the 5 year follow-up may have contributed to this favourable outcome.

Preferences for Self-Management and Support Services in Patients With Inflammatory Joint Disease: A Danish Nationwide Cross-Sectional Study.

OBJECTIVE: To explore preferences for self-management and support services in patients with inflammatory joint disease (IJD) and to investigate whether these preferences differ by age, sex, diagnosis, and disease duration. METHODS: We used a nationwide cross-sectional online survey for patients with rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis. Descriptive statistics were applied to explore preferences and to test for differences according to the different subgroups of patients. RESULTS: The questionnaire was completed by 664 patients. Younger patients indicated greater interest in 1-to-1 discussions with psychologists or another patient, educational sessions, events, and online services, and older patients indicated greater interest in talks by researchers. More women than men indicated interest in health professionals' 1-to-1 discussions, occupational therapists' question-and-answer (Q and A) sessions, physical activity, and informational websites. Patients with axial spondyloarthritis tended to indicate the most interest in the different services, and patients with rheumatoid arthritis the least interest, reaching statistical significance regarding discussion groups about IJD experiences, 1-to-1 discussions with psychologists or another patient, Q and A with another patient, stress/anger management, and online patient communication. More patients with short rather than long disease duration indicated interest in 1-to-1 discussions with rheumatologists or nurses, organized talks with experienced patients, and online services for patient communication and stories. CONCLUSION: Patients with IJD report various needs regarding self-management and support services, including 1-to-1 services traditionally delivered as part of usual care, but also talks, physical activity, and educational and online services. Although preferences differed across age, sex, diagnosis, and disease duration, all subgroups indicated great need for support, with only small differences in their top preferences.

French survey on the crossed needs on sexual health for chronic inflammatory rheumatism patients and healthcare professionals.

Patients with Inflammatory Chronic Rheumatic disease have approximately three times more sexual dysfunction than the healthy population. However, health professionals do not dare to discuss the subject with them, largely because they do not feel educated on the subject. To define the educational needs in the sexual health of health professionals involved in patient education and those of patients with Inflammatory Chronic Rheumatic disease. This French multicenter cross-sectional online study included health professionals involved in patient education and patients with Inflammatory Chronic Rheumatic disease. Two surveys were designed to assess, both of them the specific needs. They were filled out anonymously online with a secured server. The influence of professionals and patients' characteristics on their sexual health needs were tested. 57 health professionals and 239 patients answered. 71,6% of the patients reported sexual difficulties and 79,9% had never discussed them with health professionals. To facilitate discussion, the health professionals most often wanted a colleague specialized in sexual health in their team (59,7%) and access to tools (52,6%). The patients' primary expectations were psychological support (65.7%), information (51.9%), and referral to specialists if needed (43.1%). The topics the health professionals and patients considered most useful were adverse effects of treatment and impact of rheumatism on sexuality and body image. 70,2% of the health professionals felt they needed training. This survey demonstrates the need to offer educational training to health professionals designed to enable them to address and discuss sexual health issues and give their patients appropriate advice.

The European Portuguese version of the ASAS Health Index for Patients with Spondyloarthritis: Measurement properties.

OBJECTIVE: The Assessments of SpondyloArthritis international Society Health Index (ASAS HI), estimates the impact of Spondyloarthritis (SpA) on global functioning and health. This article assesses the construct validity, reliability and responsiveness of the Portuguese version of the ASAS HI. PATIENTS AND METHODS: Patients fulfilling ASAS classification criteria for axial (axSpA) or peripheral SpA (pSpA) were included. Construct validity was assessed through Spearman's correlation analysis with other health outcomes. Discriminant validity was tested comparing the ASAS HI across disease activity and functional states using the Kruskal-Wallis test. Internal consistency was assessed by Cronbach's α, and test-retest reliability by intraclass correlation coefficients (ICC). Responsiveness was evaluated by the standardized response mean (SRM) in patients with active disease who required therapy escalation. RESULTS: Among the 91 patients included, 67% were male, mean (SD) age 47.2 (12.9) years, 63 patients with axSpA and 28 patients with pSpA. The hypothesis defined a priori to test construct validity were confirmed. The ASAS HI showed ability to discriminate between patients with different disease activity and functional states (p<0.001). Internal consistency (Cronbach's α: 0.88) and test-retest reliability [ICC=0.76 (95%CI 0.09-0.91)] were good. Responsiveness was moderate (SRM=-0.53). The smallest detectable change was 3.0. CONCLUSIONS: The Portuguese version of the ASAS HI is a comprehensible questionnaire that is valid, reliable and responsive. It can be used to assess the impact of SpA and its treatment on functioning and health, in clinical practice and for research purposes.

Amongst patients taking biologic therapies for axial spondyloarthritis, which factors are associated with work non-participation?

BACKGROUND: Axial spondyloarthritis (axSpA) frequently presents during working age and therefore impacts work participation. Biologic therapies have demonstrated a positive impact on work-related outcomes in clinical trials but real world data are limited. Therefore, we investigated the prevalence and predictors of work impairment and disability among axSpA patients attending a biologic therapy clinic. METHODS: This was a single-centre, cross-sectional study of patients with axSpA treated with biologic therapy. Work participation was assessed with the Work Productivity and Activity Impairment (WPAI) Questionnaire. Work outcomes (presenteeism, absenteeism, health-related job loss) were compared for gender, time since diagnosis, smoking status and disease outcome measures. RESULTS: Data were available for 165 patients (mean age 47.6 years, 75% male, 21% current smokers). Mean time since diagnosis was 15.5 years and mean duration of biologic therapy 4.7 years; 19/165 (11.5%) were on a tapered-dose regimen. Occupational data were available for 144 patients amongst whom 101 (70.1%) were either currently employed or in full time education. Of those eligible to work, 17/118 (14.4%) reported inability to work due to their axSpA. Amongst those in employment, 10.8% reported absenteeism due to axSpA in the week prior to their clinic visit (mean hours missed = 13). The mean work productivity impairment was 23%. Higher disease activity (BASDAI) and markers of global health, quality of life and pain, (BAS-G, ASQoL and spinal pain VAS) were associated with axSpA related job loss, absenteeism and presenteeism. CONCLUSIONS: In this group of axSpA patients on biologic therapy (mean age 47.6 years), almost 1 in 6 (14.4%) reported axSpA related job loss. Poor work outcomes: axSpA-related work disability, absenteeism and presenteeism were associated with poorer scores for patient-reported disease outcome measures. Strategies for enhancing work productivity should be directed towards those patients at risk of poor work outcomes. More data are needed including details of the types of work that are most difficult with axSpA.

Patient Satisfaction with CIMZIA® (Certolizumab Pegol) AutoClicks® in the UK.

INTRODUCTION: The CIMZIA® AutoClicks® pre-filled pen (CZP PFP) was developed to overcome barriers to self-injection, by improving self-injection confidence, reducing fear associated with needle use, and supporting patients with impaired dexterity. The purpose of this research was to gather feedback on injection experience and the usefulness of training materials. METHODS: Eligible patients with rheumatoid arthritis (RA), axial spondyloarthritis (axSpA) or psoriatic arthritis (PsA) were at least 18 years of age and initiated onto the CZP PFP. Routine self-injection training and support were provided by trained specialist nurses. Patient experience (pain and skin reactions, confidence, satisfaction, and ease of use) was evaluated at visits 1-3 using an amended version of the self-injection assessment questionnaire (SIAQ) v2.0. Nurse and patient feedback on the training materials, and nurse opinions on patient self-injection after self-injection at visit 1, were also collected. RESULTS: Of 355 patients invited to participate, 196 provided informed consent and 79 participated in all three visits. Patients generally found the CZP PFP easy to use, and self-confidence and satisfaction were high. From visit 1 to visit 3, there was a numerical trend towards improvement in all three aspects of patient experience, most notably in both confidence and satisfaction. After self-injection at visit 1, confidence around safe patient self-injection was higher among nurses than among patients. Meanwhile, "pain and skin reactions" remained low at all visits. Patients thought the training materials contained sufficient information and were easy to understand and useful. CONCLUSION: After training, patients generally found the device easy to use and showed high confidence and satisfaction with self-injection. Some patients may have been competent (based on nurse opinion), but initially lacked self-confidence. Increasing self-injection experience, together with patient training and continued support, may have facilitated high patient confidence and satisfaction, thereby potentially overcoming some of the barriers to self-injection.

Dose reduction and withdrawal strategy for TNF-inhibitors in psoriatic arthritis and axial spondyloarthritis: design of a pragmatic open-label, randomised, non-inferiority trial.

BACKGROUND: Tumour necrosis factor inhibitors (TNFi) are effective in the treatment of patients with spondyloarthritis (SpA), including psoriatic arthritis (PsA) and axial spondyloarthritis (axSpA). However, these drugs come with some disadvantages such as adverse events, practical burden for patients and high costs. Dose optimisation of TNFi after patients have reached low disease activity (LDA) has been shown feasible and safe in rheumatoid arthritis (RA). However, data on TNFi dose optimisation in PsA and axSpA are scarce, especially pragmatic, randomised strategy studies. METHODS: We developed an investigator-driven, pragmatic, open-label, randomised, controlled, non-inferiority trial (DRESS-PS) to compare the effects of a disease activity-guided treat-to-target strategy with or without a tapering attempt in patients with SpA (PsA and axSpA combined), ≥ 16 years of age, who are being treated with TNFi, and have had at least 6 months of low disease activity. The primary outcome is the percentage of patients in LDA after 12 months of follow up. Patients are assessed at baseline, 3, 6, 9, and 12 months of follow up. Bayesian power analyses with a weakened prior based on a similar study performed in RA resulted in a sample size of 95 patients in total. DISCUSSION: More knowledge on disease activity-guided treatment algorithms would contribute to better treatment choices and cost savings and potentially decrease the risk of side effects. In this article we elucidate some of our design choices on TNFi dose optimisation and its clinical and methodological consequences. TRIAL REGISTRATION: Dutch Trial Register, NL6771. Registered on 27 November 2018 (CMO NL66181.091.18, 23 October 2018).

The Impact of Spondyloarthritis and Joint Symptoms on Health-Related Quality of Life and Fatigue in IBD Patients. Results From a Population-Based Inception Cohort (20-Year Follow-up in the Ibsen Study).

BACKGROUND: Patients with inflammatory bowel disease (IBD) often suffer from musculoskeletal manifestations. Health-related quality of life (HRQoL) and fatigue are known to be associated with IBD activity and musculoskeletal complaints. The aim of this study was to determine the association between spondyloarthritis, arthralgia, or back pain and the patient-reported outcomes of HRQoL and fatigue in IBD patients 20 years after their diagnosis. METHODS: The IBSEN cohort was followed prospectively for 20 years. At the 20-year follow-up, the patients answered detailed questionnaires regarding rheumatological manifestations, intestinal symptoms, HRQoL, and fatigue. Multiple regression analyses were used to evaluate associations between spondyloarthritis or joint symptoms and HRQoL or fatigue. Sex, IBD diagnosis, and age were included in all the multiple regression models, in addition to other clinically relevant confounders. RESULTS: In total, 441 patients (94%) completed the questionnaires at the 20-year follow-up. The criteria for spondyloarthritis (axial or peripheral) were fulfilled in 158 patients (36%), current back pain during the previous 3 months was reported by 79 patients (18%), and current arthralgia was reported by 178 patients (40%). Current back pain and arthralgia were independently associated with lower HRQoL, higher levels of fatigue, and chronic fatigue. A diagnosis of spondyloarthritis was not associated with reduced HRQoL or fatigue when adjusted for possible confounders. CONCLUSIONS: Current joint symptoms in IBD patients 20 years after diagnosis were associated with poorer HRQoL, higher levels of fatigue, and chronic fatigue, whereas spondyloarthritis did not impact HRQoL or fatigue negatively in this cohort.

Determining factors related to poor quality of life in patients with axial spondyloarthritis: results from the British Society for Rheumatology Biologics Register (BSRBR-AS).

OBJECTIVE: To determine modifiable factors associated with poor quality of life (QoL) in patients with axial spondyloarthritis (axSpA). METHODS: Analysis of data from the British Society for Rheumatology Biologics Register in Ankylosing Spondylitis (BSRBR-AS) and validation of a previous model using data from 1810 patients with axSpA recruited during 2012-2017. Data collected included clinical and patient-reported measures. QoL was assessed using the Ankylosing Spondylitis Quality of Life (ASQoL) measure. Linear regression models predicting ASQoL scores were used first to validate a previous model from a national study, to extend this with additional information available in BSRBR-AS and finally to identify a 'de novo' model from BSRBR-AS of which factors impact on poor QoL. RESULTS: Four out of five factors included in a previous model of poor QoL in patients with axSpA were confirmed: Bath Ankylosing Spondylitis Disease Activity Index and Bath Ankylosing Spondylitis Functional Index, fatigue and widespread pain, although the performance of the model was improved by the addition of measures of mood and sleep disturbance. In a de novo model in BSRBR-AS, there were six factors (other than disease activity and function) that predicted ASQoL: depression (ß=0.16), sleep disturbance (ß=0.08), activity impairment (ß=0.04), fibromyalgia (Symptom Severity Scale (ß=0.24) and Widespread Pain Index (ß=0.10)) and tobacco smoking (ß=0.66). CONCLUSION: This study confirms that poor QoL in patients with axSpA, in addition to high disease activity and poor function, is independently influenced by sleep disturbance, mood and widespread pain. These additional factors are not considered targets for treatment in current European League Against Rheumatism (EULAR) guidelines for managing the condition.

Physical activity and attitudes and perceptions towards physical activity in patients with spondyloarthritis: A systematic review.

OBJECTIVE: To review systematically and synthesize qualitatively the literature about physical activity and perceptions and attitudes towards physical activity/exercise among patients with spondyloarthritis (SpA). METHODS: PubMed, CINAHL and Scopus and reference lists were searched for quantitative and qualitative studies reporting on beliefs towards exercise in patients with SpA. Searches were limited to studies published from January 2000 through December 2018. The PRISMA guidelines were followed. Systematic searches identified 128 publications which underwent a title, abstract, or full-text review. Studies were excluded if articles were not in English or did not include original data. We summarized the methodologic quality using modified criteria for quantitative and qualitative studies. RESULTS: Eight quantitative and three qualitative studies met eligibility criteria, with variable study quality. Based on self-reported data, 50% to 68% of patients with SpA met physical activity recommendations with walking, swimming/pool exercise, and cycling the most common forms reported. Intrinsic factors such as motivation and improvement in symptoms and health were commonly reported as facilitators associated with physical activity/exercise. Barriers included lack of time, fatigue, and symptoms such as pain. CONCLUSION: One third to one half of patients with SpA do not meet physical activity recommendations. Given the potential for regular physical activity to reduce symptom burden in this patient population and the recommendation for regular physical activity as part of the management of these patients, more rigorous studies of physical activity behaviors and attitudes will be useful to inform interventions and promote exercise among individuals with SpA.

Presence of Fibromyalgia Syndrome and Its Relationship with Clinical Parameters in Patients with Axial Spondyloarthritis.

BACKGROUND: Fibromyalgia syndrome (FMS) is a disorder with a population prevalence of 1% to 5%. There are insufficient data in the literature on the incidence of FMS in patients with axial spondyloarthritis (SpA), with only a limited number of studies conducted. OBJECTIVES: The aim of this study was to determine the presence of FMS in patients diagnosed with axial SpA and to investigate the effect of this coexistence on clinical and laboratory assessments in patients with ankylosing spondylitis. STUDY DESIGN: This research involved a retrospective analysis of prospectively collected data. SETTING: The research took place in an outpatient rheumatology clinic. METHODS: This study included 125 patients diagnosed with axial SpA according to the Assessment of Spondyloarthritis International Society criteria. The presence of FMS was investigated according to the 2010 American College of Rheumatology criteria. Pain during activity, resting, and at night was examined using the Visual Analog Scale. Ankylosing Spondylitis Disease Activity Scores were used for assessment of disease activity, Ankylosing Spondylitis Quality of Life Scale was used for quality of life, Bath Ankylosing Spondylitis Functional Index was used for functionality, and Pittsburgh Sleep Quality Index was used for sleep quality. RESULTS: Incidence of FMS was 29.6% in the study population, which consisted of patients who were all diagnosed with axial SpA. Comparison of patient groups with and without FMS revealed no statistically significant differences in age, weight, body mass index, marital status, family history, and smoking history (P > .05), with a higher rate of female patients in the group with FMS at 55% (P < .05). Ankylosing Spondylitis Disease Activity Score-C-Reaktif Protein, Ankylosing Spondylitis Disease Activity Score-Erythyrocyte Sedimentation Rate, Ankylosing Spondylitis Quality of Life Scale, Bath Ankylosing Spondylitis Functional Index, Pittsburgh Sleep Quality Index, and Visual Analog Scale pain scores were significantly higher in the group with FMS (P < .05). LIMITATION: The study involved a limited number of patients. CONCLUSIONS: FMS is observed in one-third of patients with axial SpA. The presence of FMS negatively affects quality of life, functional status, sleep quality, disease activity, and pain level of patients with ankylosing spondylitis. The possibility for coexistence of FMS should be kept in mind when determining the treatment protocols for patients with axial spondyloarthritis, and adjunctive treatment should be given if necessary. KEY WORDS: Disease activity, fibromyalgia, quality of life, spondyloarthritis, sleep quality.