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Abstract Background Healthcare professionals (HCPs) are increasingly recommended to play an important role in supporting people with chronic disease in work participation. An intervention for HCPs to provide work-related support to their patients in clinical care was developed with intervention mapping (Maastricht Work-Related Support; Maastricht WRS). Action research proposes ‘combining research and practice’, which allows us to incorporate experiences of HCPs while implementing and to realize intervention’s full potential. Therefore, the aim of this study is to explore, by integrating action research into an intervention mapping approach, how experiences of HCPs with early implementation can be used to optimize the Maastricht WRS in clinical care. Methods Semi-structured interviews were held with nine HCPs (response rate 82%), involved in care for people with inflammatory arthritis, knee problems or inflammatory bowel disease. Some of them were not yet trained in the Maastricht WRS while others had received the training and were providing the Maastricht WRS. Results All participants regarded WRS an important part of clinical care. Untrained HCPs indicated a lack of knowledge and skills in providing the Maastricht WRS, and a need for tools. Trained HCPs were satisfied with the training and tools, but stressed that practical limitations hindered providing the Maastricht WRS. Action research showed that the intervention meets the needs of HCPs, but need some optimizations: (1) organizing ‘intervision’ for HCPs, (2) inform and activate patients to discuss work with their HCP, (3) update initial tools and (4) including patients’ work status in the electronic patient system. Conclusions Action research integrated into intervention mapping proved to improve the Maastricht WRS intervention. By involving HCPs, the intervention could be optimized to provide to support people with chronic diseases in clinical care in healthy and sustainable work participation.

Objective To assess the impact of bimekizumab on physical functioning, sleep, work productivity and overall health-related quality of life (HRQoL) in patients with non-radiographic (nr-) and radiographic (r-) axial spondyloarthritis (axSpA) in the phase 3 studies BE MOBILE 1 and 2.Methods Patients were randomised to subcutaneous bimekizumab 160 mg or placebo every 4 weeks; from Week 16, all patients received bimekizumab 160 mg every 4 weeks. We report the following outcomes to Week 52: Bath Ankylosing Spondylitis Functional Index (BASFI), Medical Outcomes Study Sleep Scale Revised (MOS-Sleep-R) Index II, Work Productivity and Activity Impairment: axSpA (WPAI:axSpA), Short Form-36 Physical and Mental Component Summary (SF-36 PCS/MCS) and Ankylosing Spondylitis Quality of Life (ASQoL).Results At Week 16, bimekizumab-randomised patients demonstrated significantly greater improvement from baseline versus placebo in BASFI, SF-36 PCS and ASQoL (p

Objectives To determine if there were differences in the Assessment of SpondyloArthritis international Society Health Index (ASAS HI) scores between patients classified as radiographic axial spondyloarthritis (r-axSpA) and non-radiographic axSpA (nr-axSpA), and to identify factors associated with higher ASAS HI scores in both disease phenotypes.Methods This study was an ancillary analysis of the ASAS HI international validation project performed in 23 countries. Patients were included if they were ≥18 years of age and diagnosed with axSpA. Univariable and multivariable analysis were performed to determine if ASAS HI scores differed between the axSpA phenotypes, and to identify other variables associated with ASAS HI scores. We also tested for potential interactions between the axSpA phenotype and significant variables identified through the multivariable regression.Results A total of 976 patients were included, with 703 having r-axSpA and 273 nr-axSpA. Patients with r-axSpA reported higher (worse) ASAS HI scores compared with those with nr-axSpA (6.8 (4.4) vs 6.0 (4.0), p=0.02), but the axSpA phenotype was not associated with ASAS HI scores in the multivariable regression (β: −0.19, 95% CI: −0.56 to 0.19). Female gender, having worse physical function (Bath Ankylosing Spondylitis Functional Index), disease activity (Ankylosing Spondylitis Disease Activity Score) and anxiety and depressive symptoms (Hospital Anxiety and Depression Scale) were associated with higher ASAS HI scores. No interactions were found to be significant.Conclusion Overall health and functioning are similarly affected in patients with r-axSpA and nr-axSpA. Female patients, having worse physical function, disease activity, anxiety and depressive symptoms were independently associated with higher ASAS HI scores.

Objective The objective of this study is to build a structural model visualising and quantifying the interrelationships of different disease outcomes with the Assessment of SpondyloArthritis International Society Health Index (ASAS HI) in patients with axial spondyloarthritis (axSpA).Methods Cross-sectional data collected at month 72 of the Devenir des Spondylarthropathies Indifferénciées Récentes cohort was analysed. Combining prior knowledge and observed data, probabilistic Bayesian network modelling was used to study how the interplay of different disease outcomes affects the ASAS HI, which measures disease-specific overall functioning and health. Disease outcomes comprised, among others, the Ankylosing Spondylitis (AS) Disease Activity Score (ASDAS) and the Bath AS Functional Index (BASFI).Results Data of 384 patients were analysed. The obtained structure suggests that ASAS HI is determined by both patient-reported physical function (BASFI) and disease activity (ASDAS). The parameters of the structural model show that an increase of ASDAS or BASFI by 1 unit corresponds to an increase of ASAS HI by 0.70 or 1.25 units, respectively. Moreover, the model suggests that disease activity has an indirect impact on ASAS HI via BASFI. No relationship between spinal mobility or structural damage and ASAS HI was found.Conclusions This is the first structural model developed to better understand the construct and the interplay between clinically relevant outcomes related to ASAS HI in axSpA patients. It shows that disease activity and physical function have a strong impact on ASAS HI, confirming it to be a valid construct of overall functioning and health in axSpA patients.

Background Axial spondyloarthritis (axSpA) can limit work participation. Our objective was to characterise productivity in patients with axSpA, including changes after 12–16 weeks of treatment with biological and targeted synthetic disease-modifying antirheumatic drugs (b/tsDMARDs).Methods A systematic literature review identified studies published from 1 January 2010 to 21 October 2021 reporting work productivity using the Work Productivity and Activity Impairment (WPAI) questionnaire in patients with axSpA initiating b/tsDMARDs. Baseline and Week 12–16 overall work productivity, absenteeism, presenteeism and activity impairment scores were used in a random-effects meta-analysis to calculate absolute mean change from baseline for each WPAI-domain.Results Eleven studies in patients with axSpA who received either placebo (n=727) or treatment with adalimumab, bimekizumab, etanercept, ixekizumab, secukinumab or tofacitinib (n=994) were included. In working patients initiating a b/tsDMARD, mean baseline overall work productivity impairment, absenteeism and presenteeism scores were 52.1% (N=7 studies), 11.0% and 48.8% (N=6 studies), respectively. At Week 12–16, the pooled mean change from baseline in overall work impairment for b/tsDMARDs or placebo was −21.6% and −12.3%. When results were extrapolated to 1 year, the potential annual reductions in cost of paid and unpaid productivity loss per patient ranged from €11 962.88 to €14 293.54.Conclusions Over 50% of employed patients with active axSpA experienced work impairment, primarily due to presenteeism. Overall work productivity improved at Weeks 12–16 to a greater extent for patients who received b/tsDMARDs than placebo. Work productivity loss was associated with a substantial cost burden, which was reduced with improvements in impairment.

Objectives To scope published reviews addressing fatigue in rheumatoid arthritis (RA), spondyloarthritis, osteoarthritis and fibromyalgia in areas relevant for clinical practice: (1) definition, (2) measurement instruments and diagnosis, (3) determinants, (4) consequences and (5) effectiveness of interventions.Methods A systematic literature search of reviews was performed in five bibliographical databases. A hierarchical data extraction was applied based on review type (Cochrane reviews (CRs), followed by non-Cochrane systematic reviews (SRs) and narrative reviews (NRs)) and year of publication. Extracted data were summarised in elaborated narrative syntheses. Results were discussed with a patient panel.Results One hundred and thirty-four reviews were included (19 CRs, 44 SRs, 71 NRs). No agreed on definition was reported for general fatigue, nor for types of fatigue. Twenty-five measurement instruments were found, all self-reported. Five instruments proposed a threshold for excessive fatigue. Pain, physical function and depressive symptoms were the most frequently studied disease-related determinants of fatigue; female sex and stress the most frequent contextual determinants. Work performance, followed by impact on pain, physical activity and social roles were the most frequently studied consequences. Whenever quantified, associations between fatigue with determinants and consequences were on average small. For non-pharmacological interventions, if effect sizes were reported, these were negligible to small and for pharmacological interventions negligible to moderate. Patients recommended actions for research and practice.Conclusion Syntheses of reviews point to the complexity of fatigue. The extensive amount of evidence could be used to offer tailored management plans to patients in clinical practice and inform future research agendas.

Key messages Rheumatology organisations reported efforts to align with principles of crisis communication and health literacy. Patients’ health literacy needs were insufficiently considered and patient information materials were too difficult. Improving preparedness, collaboration between organisations and disciplines, and adaptation to patients’ needs is necessary.

Objectives To develop a web-based evidence-based decision aid to support shared decision-making in patients with axial spondyloarthritis (axSpA) who face a treatment decision to initiate or switch a biological or targeted synthetic disease modifying antirheumatic drug (b/tsDMARDs).Methods Through an iterative process, we systematically developed a decision aid based on evidence from the literature, explorative needs assessment interviews among patients and care providers, and input from experts of the SpA working group of the Dutch Society for Rheumatology and professionals on patient information employed at the Dutch Arthritis Society. The usability, ease of use and feasibility of the pilot version were tested among stakeholders and feedback was used to adapt the decision aid. Finally, a multifaceted strategy was used to introduce the decision aid in clinical practice.Results The decision aid consists of (1) consultation support instructions in the context of disease control and treatment needs, (2) an overview of available treatment options for axSpA, (3) detailed information on b/tsDMARDs and an interactive option grid that facilitates comparison of characteristics and (4) a final check supporting patients to deliberate on the decision to initiate or switch a b/tsDMARD. Rheumatologists introduced the decision aid in several Dutch rheumatology settings and the Dutch Arthritis Society posted it on their website, social media and in their monthly newsletter.Conclusion We developed an evidence-based decision aid to support axSpA patients who face a treatment decision to initiate or switch a b/tsDMARD and introduced this in clinical practice.

Abstract Background The aim of this study is to develop and assess usability of a web-based patient-tailored tool to support adherence to urate-lowering therapy (ULT) among gout patients in a clinical setting. Methods The content of the tool was based on the Integrated Change (I-Change) model. This model combines various socio-cognitive theories and assumes behavioral change is a result of becoming aware of the necessity of change by integrating pre-motivational, motivational, and post-motivational factors. An expert group (five gout experts, three health services researchers, and one health behavior expert) was assembled that decided in three meetings on the tool’s specific content (assessments and personalized feedback) using information from preparatory qualitative studies and literature reviews. Usability was tested by a think aloud approach and validated usability questionnaires. Results The I-Change Gout tool contains three consecutive sessions comprising 80 questions, 66 tailored textual feedback messages, and 40 tailored animated videos. Navigation through the sessions was determined by the patients’ intention to adapt suboptimal ULT adherence. After the sessions, patients receive an overview of the personalized advices and plans to support ULT adherence. Usability testing among 20 gout patients that (ever) used ULT and seven healthcare professionals revealed an overall score for the tool of 8.4 ± 0.9 and 7.7 ± 1.0 (scale 1–10). Furthermore, participants reported a high intention to use and/or recommend the tool to others. Participants identified some issues for further improvement (e.g. redundant questions, technical issues, and text readability). If relevant, these were subsequently implemented in the I-Change Gout tool, to allow further testing among the following participants. Conclusion This study provides initial support for the usability by patients and healthcare professionals of the I-Change Gout tool to support ULT adherence behavior.

Introduction During the COVID-19 pandemic, an accelerated uptake of remote monitoring strategies, replacing traditional face-to-face care, has been observed. However, data on the effects of remote care interventions for patients with rheumatic and musculoskeletal diseases remain scarce and interpretation is hampered by study heterogeneity and research quality concerns. High-quality evidence is required to guide future implementation in clinical practice, with health economic analyses identified as an important knowledge gap. Randomised controlled trials (RCTs) comparing telemonitoring with conventional care for patients with spondyloarthritis (SpA) are currently lacking.Methods and analysis TeleSpA is a pragmatic, multicentre RCT investigating the effectiveness and cost-effectiveness of combined asynchronous telemonitoring and patient-initiated follow-up for patients with SpA, compared with conventional care. Two-hundred patients will be recruited at two hospitals and randomised (1:1) to the study intervention or standard care. The primary endpoint is a reduction in the number of follow-up visits by ≥25% in the intervention compared with standard care group, during a 1-year period. Secondary endpoints are (a) non-inferiority of the study intervention with regard to health outcomes, quality of care and patient-reported experience with care; and (b) cost-effectiveness of the intervention, evaluated through a prospective trial-based cost-utility analysis. In addition, experiences with the study intervention will be assessed among patients and healthcare providers, and factors associated with primary and secondary endpoints will be identified.Ethics and dissemination This study was approved by the Medical Research Ethics Committee of the Academic Hospital Maastricht/Maastricht University (NL71041.068.19/METC 19-059). Results will be disseminated through publications in peer-reviewed journals and conference presentations.Trial registration number NCT04673825.

BackgroundDetrimental associations of sedentary behaviour (time spent sitting) with musculoskeletal pain (MSP) conditions have been observed. However, findings on those with, or at risk of, type 2 diabetes (T2D) have not been reported. We examined the linear and non-linear associations of device-measured daily sitting time with MSP outcomes according to glucose metabolism status (GMS).MethodsCross-sectional data from 2827 participants aged 40-75 years in the Maastricht Study (1728 with normal glucose metabolism (NGM); 441 with prediabetes; 658 with T2D), for whom valid data were available on activPAL-derived daily sitting time, MSP [neck, shoulder, low back, and knee pain], and GMS. Associations were examined by logistic regression analyses, adjusted serially for relevant confounders, including moderate-to-vigorous intensity physical activity (MVPA) and body mass index (BMI). Restricted cubic splines were used to further examine non-linear relationships.ResultsThe fully adjusted model (including BMI, MVPA, and history of cardiovascular disease) showed daily sitting time to be significantly associated with knee pain in the overall sample (OR = 1.07, 95%CI: 1.01-1.12) and in those with T2D (OR = 1.11, 95%CI: 1.00-1.22); this was not statistically significant in those with prediabetes (OR = 1.04, 95%CI: 0.91-1.18) or NGM (OR = 1.05, 95%CI: 0.98-1.13). There were no statistically significant associations between daily sitting time and neck, shoulder, or low back pain in any of the models. Furthermore, the non-linear relationships were statistically non-significant.ConclusionAmong middle-aged and older adults with T2D, daily sitting time was significantly associated with higher odds of knee pain, but not with neck, shoulder, or low back pain. No significant association was observed in those without T2D for neck, shoulder, low back, or knee pain. Future studies, preferably those utilising prospective designs, could examine additional attributes of daily sitting (e.g., sitting bouts and domain-specific sitting time) and the potential relationships of knee pain with mobility limitations.

Abstract Background Given the health and economic burden of fractures related to osteoporosis, suboptimal adherence to medication and the increasing importance of shared-decision making, the Improvement of osteoporosis Care Organized by Nurses (ICON) study was designed to evaluate the effectiveness, cost-effectiveness and feasibility of a multi-component adherence intervention (MCAI) for patients with an indication for treatment with anti–osteoporosis medication, following assessment at the Fracture Liaison Service after a recent fracture. The MCAI involves two consultations at the FLS. During the first consultation, a decision aid is will be used to involve patients in the decision of whether to start anti-osteoporosis medication. During the follow-up visit, the nurse inquires about, and stimulates, medication adherence using motivational interviewing techniques. Methods A quasi-experimental trial to evaluate the (cost-) effectiveness and feasibility of an MCAI, consisting of a decision aid (DA) at the first visit, combined with nurse-led adherence support using motivational interviewing during the follow-up visit, in comparison with care as usual, in improving adherence to oral anti-osteoporosis medication for patients with a recent fracture two Dutch FLS. Medication persistence, defined as the proportion of patients who are persistent at one year assuming a refill gap

Objectives Data on work participation impairment and related societal costs for patients with hand osteoarthritis (OA) are scarce. Therefore, we aimed to investigate the association of hand OA with work limitations and costs of productivity loss in paid and unpaid work.Methods We used data from the Hand Osteoarthritis in Secondary Care cohort, including patients with hand OA diagnosed by their treating rheumatologist. Using the validated Health and Labour Questionnaire, we assessed experienced unpaid and paid work restrictions, unpaid work replacement by others and inefficiency and absence during paid work related to hand OA over the last 2 weeks. Societal costs (€) per hour of paid and unpaid work were estimated using Dutch salary data in 2019.Results 381 patients were included (mean age 61 years, 84% women, 26% high education level, 55% having any comorbidity). Replacement of unpaid work by others due to hand OA was necessary for 171 out of 381 patients (45%). Paid work was reported by 181/381 patients (47%), of whom 13/181 (7%) reported absenteeism, 28/181 (15%) unproductive hours at work and 120/181 (66%) paid work restrictions due to hand OA.Total estimated work-related societal costs per patient with hand OA (381 patients) were €94 (95% CI 59 to 130) per 2 weeks (€2452, 95% CI 1528 to 3377 per year).Conclusions Hand OA is associated with impairment in paid and unpaid work participation, which translates into substantial societal costs of lost productivity. These results highlight the importance of adequate hand OA treatment.

Objective Integrating patient’s and physician’s goals, especially in elderly patients with multimorbidity, might ultimately improve care. Efforts to develop such care innovations in patients with rheumatoid arthritis (RA) are lacking. The objective of our study was to develop and to pilot test a clinic for elderly patients with RA and multimorbidity. Methods First, a referral strategy for and the content of an Elderly Multimorbidity Clinic (EMC) was developed. Next, the EMC was implemented, and it primarily focused on the personal goals of patients and medication review. The EMC was evaluated in a quantitative–qualitative approach. Results Referral considered useful by the rheumatologist was chosen as the referral criterion. A rheumatologist and internist–geriatrician provided care to referred patients (≥ 55 years) at the EMC during three visits over 1 year. Twenty patients with RA participated in the pilot study (mean age 76.8±7.7 years; 30% male). Only 12 (60%) patients attended the first follow‐up consultation, and three (15%) attended the second follow‐up consultation. During any follow‐up visit, 9/12 (75%) patients achieved one or more goals. Examples of accomplished goals were reduction of medication and improvement of mobility. In 19/20 (95%) patients, medication was remediated (stop medication for 13 patients; start medication for five patients) during the first visit. After 1 year, medication was changed back in 10 patients. Rheumatologists revealed uncertainty about meaningful referral, and patients and rheumatologists mentioned high (caregiver) burden because of extra visits as reasons for not attending follow‐up. Patients were satisfied with the care provided. Conclusion This goal‐directed EMC led to the accomplishment of at least one goal in 75% of patients. Sustained benefits could not be demonstrated because of low follow‐up.

Abstract Background Patients with ankylosing spondylitis (AS) are at increased risk of depression. This increased risk has been hypothesized to be solely secondary due to AS-related symptoms, or additionally due to a common inflammatory pathway. From a clinical perspective, it is important to know whether treatment with tumor necrosis factor alpha inhibitors reduces depressive symptoms, while from a pathophysiological point of view, it would be insightful to understand whether such an effect would be a direct result of reduced inflammation, the result of reduced AS-related symptoms, or both. The objective of this study was to evaluate the effect of infliximab on depressive symptoms in patients with AS in a randomized-controlled trial setting. Methods Data were retrieved from a subgroup of patients from the AS Study for the Evaluation of Recombinant Infliximab Therapy (ASSERT). Patients were randomly allocated to infliximab (n = 16) or placebo (n = 7) until week 24, after which all received infliximab until week 54. Associations between treatment group and depressive symptoms, measured with the Center for Epidemiological Studies Depression scale (CES-D, range 0–60 (best-worst)) at baseline and over time, were explored with generalized estimating equations (GEE). Results Mean CES-D score at baseline was 15.5 (SD 9.3) in the infliximab group and 17.3 (SD 5.7) in the placebo group. Twelve patients (52%) had a CES-D score > 16, suggestive for clinical depression. After 24 weeks, mean CES-D had decreased to 9.5 (SD 11.4) in the infliximab group, but was 18.0 (SD 6.9) in the placebo group. GEE revealed larger improvements in depressive symptoms (B = − 6.63, 95%CI − 13.35 to 0.09) and odds of possible depression (OR = 0.02, 95%CI 0.00 to 0.72) in the infliximab group, compared to the placebo group. Both associations largely disappeared when adjusted for self-reported disease activity and/or physical function. Additional adjustment for C-reactive protein (CRP) did not change results. Conclusions Depressive symptoms are common in patients with AS and active disease. Infliximab improves these depressive symptoms in AS when compared to placebo by improving disease symptoms. We did not find an indication for a direct link between CRP-mediated inflammation and depressive symptoms. Trial registration Trial registration (ASSERT): NCT00207701 . Registered on September 21, 2005 (retrospectively registered).

Abstract Background Societal expenditures on work-disability benefits is high in most Western countries. As a precursor of long-term work restrictions, long-term sickness absence (LTSA) is under continuous attention of policy makers. Different healthcare professionals can play a role in identification of persons at risk of LTSA but are not well trained. A risk prediction model can support risk stratification to initiate preventative interventions. Unfortunately, current models lack generalizability or do not include a comprehensive set of potential predictors for LTSA. This study is set out to develop and validate a multivariable risk prediction model for LTSA in the coming year in a working population aged 45–64 years. Methods Data from 11,221 working persons included in the prospective Study on Transitions in Employment, Ability and Motivation (STREAM) conducted in the Netherlands were used to develop a multivariable risk prediction model for LTSA lasting ≥28 accumulated working days in the coming year. Missing data were imputed using multiple imputation. A full statistical model including 27 pre-selected predictors was reduced to a practical model using backward stepwise elimination in a logistic regression analysis across all imputed datasets. Predictive performance of the final model was evaluated using the Area Under the Curve (AUC), calibration plots and the Hosmer-Lemeshow (H&L) test. External validation was performed in a second cohort of 5604 newly recruited working persons. Results Eleven variables in the final model predicted LTSA: older age, female gender, lower level of education, poor self-rated physical health, low weekly physical activity, high self-rated physical job load, knowledge and skills not matching the job, high number of major life events in the previous year, poor self-rated work ability, high number of sickness absence days in the previous year and being self-employed. The model showed good discrimination (AUC 0.76 (interquartile range 0.75–0.76)) and good calibration in the external validation cohort (H&L test: p = 0.41). Conclusions This multivariable risk prediction model distinguishes well between older workers with high- and low-risk for LTSA in the coming year. Being easy to administer, it can support healthcare professionals in determining which persons should be targeted for tailored preventative interventions.

Abstract Background Patients with obstructive sleep apnea (OSA) might be at risk of gout because of pathophysiological mechanisms that can lead to hyperuricemia and eventually gout or because of shared risk factors between both diseases. The objective of the present study was to investigate the risk of gout in patients with OSA. Methods A population-based case-control study using the UK Clinical Practice Research Datalink GOLD including all patients aged 40 years and older with a first diagnosis of gout between 1987 and 2014. Gout cases were matched by year of birth, sex, and practice to non-gout controls. Conditional logistic regression estimated the risk of gout with an earlier diagnosis of OSA. Analyses were adjusted for lifestyle factors, comorbidities, and recent drug use. Results One hundred eleven thousand five hundred nine cases were matched with 210,241 controls. Patients with OSA were at increased risk of gout (OR 1.86; 95%CI (1.71–2.02). However, this association disappeared (OR 1.05; 95% CI 0.96–1.16) after adjustment for smoking status, body mass index (BMI), alcohol use, a history of heart failure, diabetes mellitus, renal function, and recent use of diuretics and other medications. Among females with OSA and patients with OSA associated with heart failure, renal impairment, or higher BMI, the risk of gout was however still increased when compared to the total control population. Conclusion This study showed that the observed association between OSA and gout disappeared after adjustment.

Objectives To investigate the occurrence of sick leave (SL) and the impact of clinical and socioeconomic factors on SL in early axial spondyloarthritis (axSpA).Methods Patients with a clinical diagnosis of axSpA from the DEvenir des Spondyloarthrites Indifférenciées Récentes (DESIR) cohort with work-related data and up to 5-year follow-up were studied. Incidence, time to first SL and potential role of baseline and time-varying clinical and socioeconomic factors (age, gender, ethnicity, education, job type, marital and parental status) were analysed. Univariable analyses, followed by collinearity and interaction tests, guided subsequent multivariable time-varying Cox survival model building.Results In total, 704 axSpA patients were included (mean (SD) age 33.8 (8.6); 46% men). At baseline, 80% of patients were employed; of these, 5.7% reported being on SL. The incidence of SL among those at risk during the study period (n=620, 88%) was 0.05 (95% CI 0.03 to 0.06) per 1000 days of follow-up. Mean (SD) time to first SL was 806 (595) days (range: 175–2021 days). In multivariable models, male gender (HR 0.41 (95% CI 0.20 to 0.86)) and higher education (HR 0.48 (95% CI 0.24 to 0.95)) were associated with lower hazard of SL, while higher disease activity (HR 1.49 (95% CI 1.04 to 2.13)), older age, smoking and use of tumour necrosis factor inhibitors were associated with higher hazard of SL.Conclusions In this early axSpA cohort of young, working-age individuals, male gender and higher education were independently associated with a lower hazard of SL, whereas older age and higher disease activity were associated with higher hazard of SL. The findings suggest a role of socioeconomic factors in adverse work outcomes, alongside active disease.

Abstract Background Patients with ankylosing spondylitis (AS) have a higher prevalence of depression compared to the general population. Comorbid depression in AS likely has a multifactorial origin. While several disease-related and contextual factors have been associated with depressive symptoms in AS, a comprehensive model of their interrelations is currently lacking. Such a model could help understand the mechanisms leading to, or maintaining, depression in AS. The objectives of the current study were to determine which factors are associated with depressive symptoms in AS and to understand their underlying relationships. Methods Data from a cross-sectional survey-based multicentre study were used. Potential determinants included both contextual and disease-related factors. Depressive symptoms were assessed by the Hospital Anxiety and Depression Subscale (HADS-D). Direct and indirect associations between risk factors and the latent depressive symptom outcome were explored using structural equation modelling. A final model was selected based on model fit criteria and clinical plausibility. Results Among 245 patients, median HADS-D score was 3 (interquartile range 1–6), and 44 patients (18%) had a HADS-D score ≥ 8, indicating possible depression. In the final model, contextual factors significantly associated with depressive symptoms were male gender, being employed, lower income, lower mastery and worse satisfaction with social role participation. Bath AS Disease Activity Index (BASDAI) was the only disease-related factor that was associated with depressive symptoms, acted only indirectly via mastery, and its standardized total effect on depressive symptoms was smaller than that of several contextual factors. Mastery had a central role in the path diagram and mediated the effects of BASDAI, income and satisfaction with social role participation on depressive symptoms. The final model explained 64% of the variance in the depression outcome. Conclusions Both contextual and disease-related factors are associated with depressive symptoms in AS. Mastery, the extent to which one feels in control over life and disease, has a key role in this process. Results support a relevance of self-efficacy in disease management and patient education. In order to improve patients’ mental health, research is warranted whether mastery and its relation with depression can be modified.

Objective To summarise the methodological aspects in studies with work participation (WP) as outcome domain in inflammatory arthritis (IA) and other chronic diseases.Methods Two systematic literature reviews (SLRs) were conducted in key electronic databases (2014–2019): search 1 focused on longitudinal prospective studies in IA and search 2 on SLRs in other chronic diseases. Two reviewers independently identified eligible studies and extracted data covering pre-defined methodological areas.Results In total, 58 studies in IA (22 randomised controlled trials, 36 longitudinal observational studies) and 24 SLRs in other chronic diseases were included. WP was the primary outcome in 26/58 (45%) studies. The methodological aspects least accounted for in IA studies were as follows (proportions of studies positively adhering to the topic are shown): aligning the studied population (16/58 (28%)) and sample size calculation (8/58 (14%)) with the work-related study objective; attribution of WP to overall health (28/58 (48%)); accounting for skewness of presenteeism/sick leave (10/52 (19%)); accounting for work-related contextual factors (25/58 (43%)); reporting attrition and its reasons (1/58 (2%)); reporting both aggregated results and proportions of individuals reaching predefined meaningful change or state (11/58 (16%)). SLRs in other chronic diseases confirmed heterogeneity and methodological flaws identified in IA studies without identifying new issues.Conclusion High methodological heterogeneity was observed in studies with WP as outcome domain. Consensus around various methodological aspects specific to WP studies is needed to improve quality of future studies. This review informs the EULAR Points to Consider for conducting and reporting studies with WP as an outcome in IA.

Objectives To compare the construct validity of three presenteeism instruments, using health and economic outcomes as external references, among working persons reporting musculoskeletal complaints.Methods Data from the prospective Study on Transitions in Employment, Ability and Motivation were used. Presenteeism measurement comprised a global rating of work-ability, and two instruments indicating at-work productivity, and was assessed yearly over 6 years of follow-up. Longitudinal associations between measures of health and subsequent presenteeism, and between presenteeism and subsequent days of sick leave were assessed using generalised estimating equation models. The effect of groups of contextual factors (socio-demographic, lifestyle, personal and work-related factors) was investigated by assessing the change in explained variability.Results In total, 4523 persons were analysed. The association between physical health and work-ability was stronger than both at-work productivity measures; 10 points increase in physical health (0–100, higher is better) was associated with 0.79 points (95% CI 0.75 to 0.84) better work-ability (0–10, higher is better) in the subsequent year. Besides, work-ability best predicted sick leave; one point higher work-ability was associated with 4 days less sick leave (95% CI −5.09 to −3.63) the subsequent year. Personal factors improved model fit for models on health and work-ability, but conflicting results were seen for both at-work productivity instruments.Conclusion Work-ability showed higher construct validity against health and economic outcomes as compared to at-work productivity, which shows that work-ability is different to productivity (losses). Personal factors are especially relevant when interpreting the relation between health and work-ability or self-reported quantity of work.

Abstract Background We aimed to explore whether country of residence or specific country characteristics are associated with work outcomes in rheumatoid arthritis (RA). Methods Data from the 17 countries participating in the Comorbidities in RA (COMORA) study were used. Work outcomes were measured by the Work Productivity and Activity Impairment Questionnaire, addressing employment (yes/no), absenteeism (percentage of time; 3 categories) and presenteeism (percentage of at-work productivity restrictions; 4 categories). Contribution of country of residence, gross domestic product (GDP), Human Development Index (HDI), unemployment rate, social protection expenditures (SPE) or world region to work outcomes was investigated in adjusted (ordered) logistic regressions. Results The patients (n = 2395) were younger than 60 years; mean age 48 (SD 9.2) years, 1972 (84%) female and 1065 (45%) employed. Large country differences were found. Taking the country with the best work outcome as reference, Moroccan patients had the lowest odds of being employed (OR 0.2 (95% CI 0.1; 0.3) vs. Germany) and highest odds of absenteeism (OR 13.2 (3.6; 48.3) vs. Japan). Patients in Taiwan had the highest odds of presenteeism (OR 13.0 (5.5; 30.9) vs. Venezuela). All country indices except SPE were associated with work outcomes. For example, patients in low-GDP countries had lower odds of employment (OR 0.6 (0.5; 0.8)), higher odds of absenteeism (OR 2.8 (2.0; 4.1)), but lower odds of presenteeism (OR 0.5 (0.4; 0.7)) compared to higher-GDP countries. Conclusion Substantial differences in work outcomes among patients with RA were observed between countries. Lower economic wealth and human development of countries were associated with worse employment and higher absenteeism, but lower presenteeism.

Objective To develop and test the usability and acceptability of a disease-specific integrated electronic health (eHealth) system for spondyloarthritis (SpA) in the Netherlands (‘SpA-Net’).Methods SpA-Net was developed in four phases. First, content and design were discussed with experts on SpA and patients. Second, the database, electronic medical record (EMR) and quality management system were developed. Third, multiple rounds of testing were performed. Fourth, the eHealth system was implemented in practice and feasibility was tested among patients through semistructured focus interviews (n=16 patients) and among care providers through feedback meetings (n=11 rheumatologists/fellows and 5 nurses).Results After completion of the first three steps of development in 2015, SpA-Net was implemented in 2016. All patients included have a clinical diagnosis of SpA. Information on domains relevant to clinical record-keeping is prospectively collected at routine outpatient consultations and readily available to care providers, presented in a clear dashboard. Patients complete online questionnaires prior to outpatient visits. In February 2019, 1069 patients were enrolled (mean [SD] age 54.9 [14.1] years, 52.4% men). Patients interviewed (n=16) considered SpA-Net an accessible system that was beneficial to disease insight and patient–physician communication, and had additional value to current care. Care providers appreciated the additional information for (preparing) consultations. Barriers were the initial time required to adopt the EMR and the quantity of data entry.Conclusion SpA-Net enables monitoring of patients with SpA and real-life data collection, and could help improve knowledge and optimise communication between patients and care providers. Both considered SpA-Net a valuable addition to current care.Trial registration number NTR6740.

Objective Health utilities represent preference values that persons attach to health states. This study aims to develop one general and six country-specific algorithms to calculate societal preference values for health of patients with spondyloarthritis (SpA), as assessed by the disease-specific Assessment of SpondyloArthritis international Society Health Index (ASAS HI).Methods A survey was performed in random population samples from six European countries. In a best-worst choice experiment, subjects were asked to indicate repeatedly which of 4 random aspects of the 17-item ASAS HI was were most and least important. Bayesian analysis provided the relative importance of each of the 17 items. To rescale the relative importance scores on the absolute utility scale between 0 and 1, participants additionally completed two lead time trade-off experiments, one for ‘severe SpA’ and one for ‘best health’ without SpA. Six country-specific algorithms and one general algorithm were derived. The general algorithm was tested in 199 patients with axial SpA (axSpA).Results 3039 subjects, mean age 47 years (SD 15) and 52% female completed the experiments. The population’s health utility value for SpA varied between − 0.24 for ‘worst’ SpA (country range −0.35 to 0.03), and 0.88 for ‘best’ health (country range 0.81 to 0.90). Among 199 patients with axSpA, the mean utility was 0.36 (SD 0.30, range −0.24 to 0.88) and discriminated well between patients having high (Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) ≥ 4) or low (BASDAI < 4) disease activity (0.18 (SD 0.24) vs 0.51(SD 0.27), p

The main purpose of this practice paper is to describe and analyse the possibilities and complexities of integrated health care across borders. First, we portray an ideal scenario for this type of care with a case of patients suffering from rheumatoid arthritis and living in the Dutch-Belgian frontier area. It shows how cross border care enhances continuity of care/tailor-made care and the other way around. Secondly, based on different literature sources, we describe actual regulations on health care across borders. We show that these regulations can be a major hindrance to integrated care. This raises questions on the scope and content of policies directed at both cross border and integrated care.