International Map of Axial Spondyloarthritis (IMAS): results from the perspective of 5557 patients from 27 countries around the globe.

BACKGROUND: The International Map of Axial Spondyloarthritis (IMAS) is a global initiative aimed to assess the impact and burden of axial spondyloarthritis (axSpA) and identify the unmet needs from the patient's perspective. METHOD: IMAS is a collaboration between the Axial Spondyloarthritis International Federation (ASIF), the University of Seville, Novartis Pharma AG and steered by a scientific committee. IMAS collected information through an online cross-sectional survey (2017-2022) from unselected patients with axSpA from Europe, Asia, North America, Latin America and Africa who completed a comprehensive questionnaire containing over 120 items. RESULTS: 5557 patients with axSpA participated in IMAS. Mean age was 43.9 ±12.8 years, 55.4% were female, 46.2% had a university education and 51.0% were employed. The mean diagnostic delay was 7.4 ±9.0 years (median: 4.0), and the mean symptom duration was 17.1 ±13.3 years. 75.0% of patients had active disease (Bath Ankylosing Spondylitis Disease Activity Index ≥4), and 59.4% reported poor mental health (12-item General Health Questionnaire ≥3). In the year before the survey, patients had visited primary care physicians 4.6 times and the rheumatologist 3.6 times. 78.6% had taken non-steroidal anti-inflammatory drug ever, 48.8% biological disease-modifying antirheumatic drugs and 43.6% conventional synthetic disease-modifying antirheumatic drugs. Patients's greatest fear was disease progression (55.9%), while the greatest hope was to be able to relieve pain (54.2%). CONCLUSIONS: IMAS shows the global profile of patients with axSpA, highlighting unmet needs, lengthy delays in diagnosis and high burden of disease in patients with axSpA worldwide. This global information will enable more detailed investigations to obtain evidence on the critical issues that matter to patients around the world to improve their care and quality of life.

Factors Associated with Poor Mental Health in Patients with Axial Spondyloarthritis: Results from the International Map of Axial Spondyloarthritis (IMAS).

BACKGROUND: This study aims to assess the prevalence of poor mental health in axial spondyloarthritis (axSpA) and its associated factors in a large sample of patients from the International Map of Axial Spondyloarthritis (IMAS) study from around the globe. METHODS: IMAS is a cross-sectional online survey (2017-2022) that includes 5557 unselected patients with axSpA worldwide. Mental health was evaluated by the 12-item General Health Questionnaire (GHQ-12) and the cut-off point for poor mental health was set at 3. Logistic regression analysis was used to evaluate relationships between the investigated factors and poor mental health (GHQ-12≥3) in patients with axSpA (n=4335). RESULTS: Of 5351 patients, the mean of GHQ-12 was 4.7 and 59.4% were having poor mental health, being 69.9% in South Africa, 63.7% in Latin America, 60.8% in Europe, 54.3% in North America and 51.8% in Asia. Overall, 40.5% and 37.2% of patients experienced anxiety and depression. The factors associated with poor mental health were younger age (OR=0.99), female gender (OR=1.16), being on sick leave or unemployed (OR=1.63), non-physical activity (OR=1.22), smoking (OR=1.20), higher Bath Ankylosing Spondylitis Disease Activity Index [BASDAI] (OR=1.42), functional limitation (OR=1.02) and shorter symptoms duration (OR=0.98). CONCLUSIONS: Globally, 6 in 10 patients with axSpA had poor mental health, with a higher proportion in South Africa and lower in Asia. The factors associated with poor mental health include domains such as younger age, female gender, employment difficulties, harmful habits, disease burden and symptom duration. A holistic management approach to axSpA should encompass both physical and mental health.

Regional Differences in Diagnosis Journey and Healthcare Utilization: Results from the International Map of Axial Spondyloarthritis (IMAS).

INTRODUCTION: To assess differences in the diagnosis journey and access to care in a large sample of patients with axial spondyloarthritis (axSpA) from around the world, included in the International Map of Axial Spondyloarthritis (IMAS). METHODS: IMAS was a cross-sectional online survey (2017-2022) of 5557 unselected patients with axSpA from 27 countries. Across five worldwide geographic regions, the patient journey until diagnosis and healthcare utilization in the last 12 months prior to survey were evaluated. Univariable and multivariable linear regression was used to analyze factors associated with higher healthcare utilization. RESULTS: Of 5557 participants in IMAS, the diagnosis took an average of 7.4 years, requiring more than two visits to HCPs (77.7% general practitioner and 51.3% rheumatologist), and more than two diagnostic tests [67.5% performed human leukocyte antigen B27 (HLA-B27), 64.2% x-ray, and 59.1% magnetic resonance imaging (MRI) scans]. North America and Europe were the regions with the highest number of healthcare professional (HCP) visits for diagnosis, while the lowest number of visits was in the Asian region. In the previous 12 months, 94.9% (n = 5272) used at least one healthcare resource, with an average of 29 uses per year. The regions with the highest healthcare utilization were Latin America, Europe, and North America. In the multiple linear regression, factors associated with higher number of healthcare utilization were younger age (b =  - 0.311), female gender (b = 7.736), higher disease activity (b = 1.461), poorer mental health (b = 0.624), greater functional limitation (b = 0.300), greater spinal stiffness (b = 1.527), and longer diagnostic delay (b = 0.104). CONCLUSION: The diagnosis of axSpA usually takes more than two visits to HCPs and at least 7 years. After diagnosis, axSpA is associated with frequent healthcare resource use. Younger age, female gender, higher disease activity, poorer mental health, greater functional limitation, greater spinal stiffness, and longer diagnostic delay are associated with higher healthcare utilization. Europe and North America use more HCP visits and diagnostic tests before and after diagnosis than the other regions.

Measurement properties and interpretability of the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure.

BACKGROUND: Patient-reported outcome measures (PROMs) are crucial for assessing the impact of dermatological conditions on patients' lives, but the existing dermatology-specific PROMs are not recommended for use according to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). We developed the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure in partnership with patients. It has strong evidence of content validity, structural validity, internal consistency, acceptability, and feasibility. OBJECTIVES: To test PRIDD's remaining measurement properties and establish the interpretability of scores against the COSMIN criteria using classic and modern psychometric methods. METHODS: A global longitudinal study consisting of two online surveys administered two to four weeks apart. Adults (≥ 18 years) living with a dermatological condition were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) membership network. Participants completed PRIDD, a demographics questionnaire, and other related measures including the Dermatology Life Quality Index (DLQI). We tested PRIDD's criterion validity, construct validity and responsiveness (Spearman's ρ, independent-samples t-tests and ANOVA), test-retest reliability (interclass correlation coefficient [ICC]), measurement error (Smallest Detectable Change or Limits of Agreement [LoA], distribution-based Minimally Important Change [MIC]), floor and ceiling effects (number of minimum and maximum scores and Person-Item Location Distribution Maps), score bandings (κ coefficient of agreement) and anchor-based MIC. RESULTS: 504 patients with 35 dermatological conditions from 38 countries participated. Criterion validity (ρ = 0.79), construct validity (76% hypotheses met), test-retest validity (ICC = 0.93), and measurement error (LoA = 1.3 < MIC = 4.14) were sufficient. Floor and ceiling effects were in the acceptable range (< 15%). Score bandings were determined (κ = 0.47), however, the anchor-based MIC could not be calculated due to an insufficient anchor. CONCLUSIONS: PRIDD is a valid and reliable tool to evaluate the impact of dermatological disease on patients' lives in research and clinical practice. It is the first dermatology-specific PROM to meet the COSMIN criteria. These results support the value of developing and validating PROMs with a patient-centred approach and using classic and modern psychometric methods. Further testing of responsiveness and MIC, cross-cultural translation, linguistic validation, and global data collection are planned.

Further refinement of the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure using classical test theory and item response theory.

BACKGROUND: Existing dermatology-specific Patient-Reported Outcome Measures (PROMs) do not fully capture the substantial physical, psychological and social impact of dermatological conditions on patients' lives and are not recommended for use according to the COSMIN criteria. Most were developed with insufficient patient involvement and relied on classical psychometric methods. We are developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure for use in research and clinical practice in partnership with patients. OBJECTIVES: To examine the factor structure of PRIDD, determine the definitive selection of items for each subscale, and establish structural validity and internal consistency through classical and modern psychometric methods. METHODS: Two cross-sectional online surveys were conducted. Adults (≥ 18 years) worldwide living with a dermatological condition were recruited through the membership network of the International Alliance of Dermatology Patient Organizations (GlobalSkin). They completed the PRIDD questionnaire and a demographics questionnaire via an online survey. We examined missing data and distribution of scores for each item. The factor structure was assessed using confirmatory and exploratory factor analysis (Survey 1). Internal consistency was examined using Cronbach's α. Rasch measurement theory analyses were conducted, including iterative assessment of rating scale function, fit to the Rasch model, unidimensionality, reliability, local dependence, targeting and differential item functioning (DIF) (Surveys 1 and 2). RESULTS: Participants in Surveys 1 and 2 numbered 483 and 504 people, respectively. All items had ≤ 3% missing scores and all five response options were used. A four-factor model showed the best fit. PRIDD and all four subscales were internally consistent but showed some misfit to the Rasch measurement model. Adjustments were made to rectify disordered thresholds, remove misfitting items, local dependency and DIF, and improve targeting. The resulting 16-item version and subscales fit the Rasch model, showed no local dependency or DIF at the test level, and were well targeted. CONCLUSIONS: This field test study produced the final PRIDD measure, consisting of 16 items across four domains. The data triangulated and refined the conceptual framework of impact and provide evidence of PRIDD's structural validity and internal consistency. The final step in the development and validation of the PRIDD measure is to test the remaining measurement properties.

Definitions and measures of long COVID fatigue in adults: a scoping review protocol.

OBJECTIVE: The aim of this scoping review is to investigate how fatigue is defined and measured in adults with long COVID. INTRODUCTION: Following COVID-19 infection, 10% to 20% of individuals experience persisting symptoms for a minimum of 3 months; this is commonly known as long COVID. Fatigue is one of the most prevalent symptoms of long COVID, but there is currently no consistently applied definition of long COVID fatigue. To advance our understanding of long COVID fatigue, we must first identify the current definitions and measures being used to describe and mesure this condition. INCLUSION CRITERIA: This review will consider published and unpublished studies involving adults (≥18 years) that define and/or measure long COVID fatigue. Papers using quantitative or qualitative designs will be included. Conference abstracts, editorials, and opinion papers will be excluded. METHODS: Published studies from January 2020 onwards will be searched for across MEDLINE (Ovid), CINAHL (EBSCOhost), Embase (Ovid), Scopus, PsycINFO (Ovid), Web of Science Core Collection, Epistemonikos, and Cochrane Central Register of Controlled Trials (CENTRAL). Dimensions, Overton, and ProQuest Dissertations and Theses will be searched for unpublished literature. Eligible records will be de-duplicated, and 2 independent reviewers will carry out title, abstract, and full-text screening. A data extraction tool will be pilot tested on a small number of papers, then modified as necessary, with any modifications detailed in the scoping review. Findings will be presented in tables and charts, supported by a narrative summary. REVIEW REGISTRATION: Open Science Framework https://osf.io/hnf8z.

Regional differences in clinical phenotype of axial spondyloarthritis: results from the International Map of Axial Spondyloarthritis (IMAS).

OBJECTIVES: To explore differences in axial spondyloarthritis (axSpA) clinical phenotype around the world in a large sample of patients included in the International Map of Axial Spondyloarthritis (IMAS). METHOD: IMAS was a cross-sectional online survey (2017-2022) of 5,557 unselected axSpA patients from 27 countries. We analysed across five geographic regions the age at symptom onset, diagnostic delay, gender, HLA-B27, family history, extra-musculoskeletal manifestations, presence of comorbidities, disease activity (BASDAI), level of spinal stiffness, and treatments. RESULTS: Of 5,557 IMAS participants, 3,493 were from Europe, 770 from North America, 600 from Asia, 548 from Latin America, and 146 from South Africa. Age at symptom onset ranged between 25-30 years and was higher in Latin America. Diagnostic delay was longest in South Africa and lowest in Asia. The lowest HLA-B27 positivity was observed in Latin America and the highest in Asia. Extra-musculoskeletal manifestations were the lowest in Europe. Mean disease activity (BASDAI) was 5.4, with highest values in South Africa and lowest in Asia. Most of the patients had used NSAIDs for their condition and less than half had ever taken csDMARDS; both were more frequent in Latin America and South Africa. Almost half of the patients had ever taken bDMARDs, more frequent being in the Americas. CONCLUSIONS: There is great heterogeneity of axSpA clinical phenotype presentation around the world. AxSpA manifests differently in different regions, so further understanding of these differences of phenotypes is needed to achieve early diagnosis and initiation of optimal disease treatment in axSpA in the different regions.

Developing evidence-based patient-focused learning materials to support health behaviour change for people living with psoriatic arthritis.

OBJECTIVES: In psoriatic arthritis (PsA), self-management is important for patient function and quality of life. Behaviour change can be difficult, patients could benefit from high-quality support to initiate change. Our aim was to codesign the project as theory-informed, evidence-based, patient-focused, materials supporting healthy lifestyle changes for patients diagnosed with PsA. METHODS: Development of the materials was overseen by a steering group of patients with PsA, psychologists, rheumatologists, a design team and researchers. First, a literature review was performed to establish the evidence base for behaviours and potential interventions in PsA, including diet, weight, alcohol, smoking, exercise, anxiety, depression and stress. An initial roundtable of patients with PsA prioritised areas and content ideas. Draft materials including a website and downloadable materials were produced. A second roundtable of patients with PsA collected feedback on the draft content and design. A third roundtable was held with patients with PsA and a fourth with clinicians to refine the materials and ensuring that they were evidence based, accessible, interesting, and helpful to initiate and maintain change. A final evaluation survey was performed to review the draft website before launching the final materials. RESULTS: 15 candidate topics were prioritised. A website and set of postcards summarising the topics were developed by the design team and refined following feedback from the roundtable groups. CONCLUSION: This project created patient-focused resources to support behaviour change. It addresses common concerns of patients with PsA about how they may optimise their health by providing practical and brief interventions to challenge and support them to make changes.

Registered Nurses' and nursing students' perspectives on moral distress and its effects: A mixed-methods systematic review and thematic synthesis.

AIM: To examine Registered Nurses (RNs') and nursing students' perspectives on factors contributing to moral distress and the effects on their health, well-being and professional and career intentions. DESIGN: Joanna Briggs Institute mixed-methods systematic review and thematic synthesis. Registered in Prospero (Redacted). METHODS: Five databases were searched on 5 May 2021 for studies published in English since January 2010. Methodological quality assessment was conducted in parallel with data extraction. RESULTS: Searches yielded 2343 hits. Seventy-seven articles were included. Most were correlational design and used convenience sampling. Studies were mainly from North America and Asia and situated in intensive and critical care settings. There were common, consistent sources of moral distress across continents, specialities and settings. Factors related to perceived inability or failure to enact moral agency and responsibility in moral events at individual, team and structural levels generated distress. Moral distress had a negative effect on RNs health and psychological well-being. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution to this systematic review.

Online survey comparing coping responses to SARS-CoV-2 by people with and without existing health conditions in the UK.

OBJECTIVES: To investigate the impact of SARS-CoV-2 on self-reported mood, coping and health behaviours of people living with existing health conditions in the UK to understand how to improve coping responses to the threat of SARS-CoV-2. DESIGN: Quantitative design using a cross-sectional survey. SETTING: Online survey in the UK. PARTICIPANTS: UK adults (18+ years) were eligible to participate. A total of 9110 people participated. Of these, 4377 (48%) reported at least one existing health condition, 874 (10%) reported having two or more existing conditions, and 715 (8%) reported having an existing mental health condition. PRIMARY AND SECONDARY OUTCOME MEASURES: Multivariable linear regression and sequential multiple mediation analysis were used to estimate differences in average scores for active and avoidant coping response scores due to pre-existing health conditions, and to investigate the extent to which these differences are explained by differences in perceptions, beliefs, concerns and mood. RESULTS: People with pre-existing physical (+1.11 higher; 95% CI 0.88 to 1.34) and especially mental health conditions (3.06 higher; 95% CI 2.65 to 3.48) reported poorer health and used more avoidant coping compared with healthy participants. Under some strong untestable assumptions, we estimate that experiencing low mood or concern related to SARS-CoV-2 mostly explained the relationship between existing health conditions and avoidant coping. CONCLUSION: Psychological support and interventions including behaviour change are required to mitigate the psychological burden of the SARS-CoV-2 pandemic and increase autonomy in people with and without pre-existing conditions during this highly uncertain time. Psychologists are well placed to support clinicians and people with existing health conditions to minimise the psychological impact of SARS-CoV-2, in order to alleviate the subsequent strain on healthcare services.

Identifying parameters associated with delayed diagnosis in axial spondyloarthritis: data from the European map of axial spondyloarthritis.

OBJECTIVE: To identify the parameters associated with self-reported diagnostic delay (DD) in axial spondyloarthritis (axSpA) patients across Europe. METHODS: Data from 2652 patients from 13 countries who participated in the European Map of Axial Spondyloarthritis (EMAS) were collected through an online survey (2017-2018). DD was calculated as the difference between age at diagnosis and age at symptom onset reported by participants. Associations between DD and sociodemographic characteristics, as well as disease-related factors were explored through univariable and multivariable linear regression analysis. RESULTS: Average DD was 7.4 (8.4) years with a variation between countries. The variables associated with longer DD in the final multivariable regression model were: younger age at symptom onset (b = -0.26; 95% CI: -0.28, -0.23), female gender (b = 1.34; 95% CI: 0.73, 1.96) and higher number of health-care professionals (HCPs) seen before diagnosis (b = 1.19; 95% CI: 0.95, 1.43). There was a significant interaction between the female gender and the number of HCPs seen before diagnosis. A substantial variation of the DD across European countries was observed. CONCLUSION: In this sample of axSpA patients, average DD was greater than 7 years. Younger age at symptom onset, female gender, higher number of HCPs seen before diagnosis, and being diagnosed by rheumatologist were the parameters associated with a longer DD in axSpA. These findings indicate a need for continuing efforts dedicated to recognition of patients with a high probability of axSpA on the level of non-rheumatology specialists and facilitating referral to a rheumatologist for timely diagnosis.

Real-World Experience of Patient-Relevant Benefits and Treatment Satisfaction with Apremilast in Patients with Psoriasis: An Analysis of the APPRECIATE Study.

INTRODUCTION: In the real-world APPRECIATE study (NCT02740218), most patients with psoriasis demonstrated notable improvements on disease severity measures and reported clinically meaningful treatment benefits with apremilast. OBJECTIVE: We aim to further describe patient-relevant needs and benefits and patient satisfaction with apremilast, including subgroup analyses based on patient characteristics. METHODS: APPRECIATE, a multinational, retrospective, cross-sectional study, enrolled patients with chronic plaque psoriasis who started apremilast according to the European label. Patient Benefit Index (PBI; range 0 (no patient-relevant benefit) to 4 (maximum patient-relevant benefit), global PBI score ≥ 1 indicating minimum patient-relevant benefit and ≥ 3 indicating high benefit) and nine-item Treatment Satisfaction Questionnaire for Medication (TSQM-9; range 0-100) were assessed 6 (± 1) months after apremilast initiation and summarized descriptively. Relationships between global PBI and TSQM-9 assessments were analyzed by Pearson correlations. RESULTS: Of 480 enrolled patients, 347 (72.3%) had remained on apremilast at 6 (± 1) months; 90.9% (300/330) achieved global PBI score ≥ 1. Mean (standard deviation) global PBI score was 2.8 (1.2). Higher achievement of global PBI score ≥ 3 was observed in patients with no prior treatments (61.1% (22/36)) or prior phototherapy (64.6% (42/65)) versus prior conventional systemic (54.4% (100/184)) or biologic (38.6% (17/44)) treatment. Strong correlations were observed between the global PBI score and the TSQM-9 global satisfaction and effectiveness subscale scores. CONCLUSION: Patients continuing apremilast for 6 (± 1) months in APPRECIATE reported patient-relevant treatment benefits. Findings suggest that receiving apremilast earlier versus later in treatment management is consistent with greater improvements in patient-relevant treatment outcomes.

Impact of axial spondyloarthritis on mental health in Europe: results from the EMAS study.

OBJECTIVE: To determine the presence of mental disorder risk and associated factors in European patients with axial spondyloarthritis (axSpA). METHODS: Data from 2,166 patients with axSpA in 12 European countries were collected from 2017 to 2018 through the European Map of Axial Spondyloarthritis online survey. Risk of mental disorders was assessed using the 12-item General Health Questionnaire. Possible predictors included age, gender, relationship status, patient organisation membership, job status, educational level, Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), functional limitation (0-54) and self-reported depression or anxiety. Bivariate analyses were conducted to determine predictors of risk of mental disorders (Mann-Whitney and χ2) and multivariable analysis identified factors associated with risk of mental disorders. RESULTS: 60.7% of patients reported risk of mental disorders: they were younger (41.7 vs 46.0 years), more likely female (68.2% vs 57.9%), unemployed (7.5% vs 2.7%), on temporary (15.9% vs 5.4%) or permanent sick leave (13.2% vs 8.0%), reported depression (45.2% vs 14.2%) or anxiety (41.3% vs 12.5%), higher disease activity (BASDAI ≥4; 87.6% vs 62.3%) and functional limitation (16.5 vs 10.8). The factors most associated with risk of mental disorders were disease activity (OR=2.80), reported depression (OR=2.42), anxiety (OR=2.39), being unemployed or on sick leave (OR=1.98), functional limitation (OR=1.02) and younger age (OR=0.97). CONCLUSIONS: Compared with the general population, patients with axSpA show disproportionately worse mental health associated mainly with disease activity and employment status. Healthcare professionals should pay close attention to patients with high disease activity and address internally or refer to specialist services, where appropriate to ensure optimal patient outcomes.

A 12-point recommendation framework to support advancement of the multidisciplinary care of psoriatic arthritis: A call to action.

OBJECTIVE: Making a differential diagnosis of psoriatic arthritis (PsA) is not straightforward. This is partly because of its heterogeneous presentation and partly because many patients with PsA are initially diagnosed with psoriasis and treated in primary care or by dermatologists, with referral to rheumatologists being delayed. Once diagnosed, optimal disease control requires frequent specialist monitoring, adjustment or switching of therapies, and management of comorbidities and concomitant diseases, as well as attention to patients' overall well-being. Given the breadth of expertise that diagnosis and management of PsA requires, we sought to define a collaborative, structured framework that supports the optimisation of multidisciplinary care for patients with PsA in Europe. METHODS: An expert panel comprising four rheumatologists, three dermatologists, two specialist nurses and one psychologist-from Spain, the United Kingdom, The Netherlands, Germany, France and Italy-met face-to-face to take part in a modified Delphi exercise. RESULTS: The result of this exercise is a set of recommendations that are based on combining published evidence with the panel's extensive clinical experience. Recommendations can be implemented in a number of ways, but the central call-to-action of this framework is the need for improved collaboration between dermatologists (or primary care physicians) and rheumatologists. This could occur in a variety of different formats: standard referral pathways, multidisciplinary physician meetings to discuss patient cases, or 'one stop', combined clinics. CONCLUSION: We anticipate that when the majority of patients with PsA receive regular multidisciplinary care, improved patient outcomes will follow, although robust research is needed to explore this assumption.

Gender differences in patient journey to diagnosis and disease outcomes: results from the European Map of Axial Spondyloarthritis (EMAS).

INTRODUCTION/OBJECTIVES: To evaluate the journey to diagnosis, disease characteristics and burden of disease in male and female patients with axial spondyloarthritis (axSpA) across Europe. METHOD: Data from 2846 unselected patients participating in the European Map of Axial Spondyloarthritis (EMAS) study through an online survey (2017-2018) across 13 countries were analysed. Sociodemographic characteristics, lifestyle, diagnosis, disease characteristics and patient-reported outcomes (PROs) [disease activity -BASDAI (0-10), spinal stiffness (3-12), functional limitations (0-54) and psychological distress (GHQ-12)] were compared between males and females using chi-square (for categorical variables) and student t (for continuous variables) tests. RESULTS: In total, 1100 (38.7%) males and 1746 (61.3%) females participated in the EMAS. Compared with males, females reported considerable longer diagnostic delay (6.1 ± 7.4 vs 8.2 ± 8.9 years; p < 0.001), higher number of visits to physiotherapists (34.5% vs 49.5%; p < 0.001) and to osteopaths (13.3% vs 24.4%; p < 0.001) before being diagnosed and lower frequency of HLA-B27 carriership (80.2% vs 66.7%; p < 0.001). In addition, females reported higher degree of disease activity in all BASDAI aspects and greater psychological distress through GHQ-12 (4.4 ± 4.2 vs 5.3 ± 4.1; p < 0.001), as well as a greater use of alternative therapies. CONCLUSION: The patient journey to diagnosis of axSpA is much longer and arduous in females, which may be related to physician bias and lower frequency of HLA-B27 carriership. Regarding PROs, females experience higher disease activity and poorer psychological health compared with males. These results reflect specific unmet needs in females with axSpA needing particular attention. Key Points • Healthcare professionals' perception of axSpA as a predominantly male disease may introduce some bias during the diagnosis and management of the disease. However, evidence about male-female differences in axSpA is scarce. • EMAS results highlight how female axSpA patients report longer diagnostic delay and higher burden of the disease in a large sample of 2846 participants of 13 European countries. • Results reflect unmet needs of European female patients. Healthcare professionals should pay close attention in order to accurately diagnose and efficiently manage axSpA cases while further research should be developed on the cause of reported gender differences.

Patient-Reported Impact of Axial Spondyloarthritis on Working Life: Results From the European Map of Axial Spondyloarthritis Survey.

OBJECTIVE: To evaluate work-related issues (WRIs) and their determinants in patients with axial spondyloarthritis (SpA) across Europe. METHODS: The European Map of Axial Spondyloarthritis is a cross-sectional online survey (2017-2018) of unselected patients with self-reported axial SpA from 13 European countries. Participants were classified as active or inactive members of the labor force according to the International Labor Organization standards. Those employed reported WRIs due to axial SpA in the past 12 months. Sociodemographic characteristics and patient-reported outcomes were compared between patients with and without WRIs. Stepwise regression analysis was conducted to identify independent determinants of WRIs. RESULTS: The sample comprised 2,846 patients with axial SpA, 1,653 were active members of the labor force, 1,450 were employed, and of those employed, 67.7% reported at least 1 WRI. The most frequently reported WRIs were taking sick leave (56.3%), difficulty fulfilling working hours (44.6%), and missing work for doctor's appointments (34.6%). Of the total sample, 74.1% declared that they had faced or would face difficulties finding a job due to axial SpA. Patients with WRIs were more often female, were less likely to be married or in a relationship, and had a higher educational level, poorer patient-reported outcomes, and a greater prevalence of anxiety and depression. Multivariable regression showed that WRIs were associated with a higher Bath Ankylosing Spondylitis Disease Activity Index score (odds ratio [OR] 1.30 [95% confidence interval (95% CI) 1.16-1.45]) and the 12-item General Health Questionnaire score (OR 1.15 [95% CI 1.09-1.22]), and were negatively associated with inflammatory bowel disease (OR 0.58 [95% CI 0.36-0.91]). CONCLUSION: Approximately two-thirds of employed patients experienced WRIs due to axial SpA. Association between disease activity and psychological distress with WRIs suggests the need to ensure that axial SpA patients receive the required support to cope with their working life.

Translating research into clinical practice: quality improvement to halve non-adherence to methotrexate.

OBJECTIVE: MTX remains the cornerstone for therapy for RA, yet research shows that non-adherence is significant and correlates with response to therapy. This study aimed to halve self-reported non-adherence to MTX at the Kellgren Centre for Rheumatology. METHODS: An anonymous self-report adherence questionnaire was developed and data collected for 3 months prior to the introduction of interventions, and then regularly for the subsequent 2.5 years. A series of interventions were implemented, including motivational interviewing training, consistent information about MTX and development of a summary bookmark. Information on clinic times was collected for consultations with and without motivational interviewing. Surveys were conducted to ascertain consistency of messages about MTX. A biochemical assay was used to test MTX serum levels in patients at two time points: before and 2.8 years following introduction of the changes. Remission rates at 6 and 12 months post-MTX initiation were retrieved from patient notes and cost savings estimated by comparing actual numbers of new biologic starters compared with expected numbers based on the numbers of consultants employed at the two time points. RESULTS: Between June and August 2016, self-reported non-adherence to MTX was 24.7%. Following introduction of the interventions, self-reported non-adherence rates reduced to an average of 7.4% between April 2018 and August 2019. Clinic times were not significantly increased when motivational interviewing was employed. Consistency of messages by staff across three key areas (benefits of MTX, alcohol guidance and importance of adherence) improved from 64% in September 2016 to 94% in January 2018. Biochemical non-adherence reduced from 56% (September 2016) to 17% (June 2019), whilst remission rates 6 months post-initiation of MTX improved from 13% in 2014/15 to 37% in 2017/18, resulting is estimated cost savings of £30 000 per year. CONCLUSION: Non-adherence to MTX can be improved using simple measures including focussing on the adherence and the benefits of treatment, and providing consistent information across departments.

The relationship between sleep disturbance, symptoms and daytime functioning in psoriasis: a prospective study integrating actigraphy and experience sampling methodology.

OBJECTIVE/BACKGROUND: Sleep disturbance is common in individuals with psoriasis and appears to be related to both physical and psychological factors. We sought to examine whether psoriasis symptoms, night-time arousal and low mood predicted subsequent objective and self-reported sleep; and whether objective and self-reported sleep predicted next-day psoriasis symptoms and day-time functioning. PARTICIPANTS/METHODS: A total of 19 individuals (Female: 11 [57.9%], median age: 39 years) with chronic plaque psoriasis and poor sleep quality (mean Pittsburgh Sleep Quality Index, PSQI = 9.11) participated. Momentary assessments of psoriasis symptoms, mood and daytime functioning were completed at five pseudo-random intervals each day for 15 days using time-stamped digital diary entry. Objective sleep was estimated using wrist-worn actigraphy. Self-reported sleep and night-time arousal were assessed each morning using validated measures. RESULTS AND CONCLUSIONS: Two-level random intercept models showed that increased night-time arousal was associated with poorer diary-reported sleep. Neither self-reported nor objective sleep parameters were associated with daytime psoriasis symptoms in bi-directional analyses. Diary-reported sleep predicted next-day functioning, specifically sleepiness, concentration, and fatigue. Actigraphy-defined total sleep time predicted next-day fatigue. Night-time arousal is associated with poorer self-reported sleep in people with psoriasis, and sleep predicts next-day functioning. Contrary to our hypothesis, sleep disturbance does not appear to be associated with momentary assessments of psoriasis symptoms.

The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries.

PURPOSE OF REVIEW: Scientific research in axial spondyloarthritis (axSpA) has grown significantly. Nevertheless, the patient perspective remains insufficiently explored. Using a cross-sectional survey, the European Map of Axial Spondyloarthritis (EMAS) describes how patients living with self-reported axSpA experience their disease physically, psychologically, and socially. RECENT FINDINGS: 2846 patients participated: mean age 43.9 ± 12.3 years, 61.3% female, mean disease duration was 17.2 ± 12.4 years, and 71.3% were HLA-B27 positive. Mean diagnostic delay was 7.4 ± 8.4 years. Mean BASDAI score was 5.5 ± 2.0 and 75.7% reported moderate/severe spinal stiffness throughout the day. Daily life was substantially impaired: 74.1% reported difficulties finding a job due to the disease, and 61.5% reported psychological distress. EMAS results showed long diagnostic delay and substantial physical and psychological burden, indicating important unmet needs for patients. Furthermore, axSpA restricted patients' ability to participate in their daily routine and lead a productive work life. Understanding the patient's perspective can improve both health outcomes and shared decision-making between patient and rheumatologist.

Barriers and facilitators to health care professionals discussing child weight with parents: A meta-synthesis of qualitative studies.

INTRODUCTION: Childhood obesity is one of the most serious global public health challenges. However, obesity and its consequences are largely preventable. As parents play an important role in their children's weight-related behaviours, good communication between parents and health care professionals (HCPs) is essential. This systematic review provides a meta-synthesis of qualitative studies exploring the barriers and facilitators experienced by HCPs when discussing child weight with parents. METHODS: Searches were conducted using the following databases: MEDLINE (OVID), Psych INFO (OVID), EMBASE (OVID), Web of Knowledge and CINAHL. Thirteen full-text qualitative studies published in English language journals since 1985 were included. Included studies collected data from HCPs (e.g., nurses, doctors, dieticians, psychologists, and clinical managers) concerning their experiences of discussing child weight-related issues with parents. An inductive thematic analysis was employed to synthesize findings. FINDINGS: Emerging subthemes were categorized using a socio-ecological framework into intra/interpersonal factors, organizational factors, and societal factors. Perceived barriers and facilitators most commonly related to intra/interpersonal level factors, that is, relating to staff factors, parental factors, or professional-parent interactions. HCPs also attributed a number of barriers, but not facilitators, at the organizational and societal levels. CONCLUSION: The findings of this review may help to inform the development of future weight-related communication interventions. Whilst intra/interpersonal interventions may go some way to improving health care practice, it is crucial that all stakeholders consider the wider organizational and societal context in which these interactions take place. Statement of contribution What is already known on the subject? Childhood obesity is one of the United Kingdom's most serious current public health challenges. Health care professionals are in a prime position to identify child weight issues during routine consultations. However, they often feel unable or unequipped to raise the topic and provide information on child weight management. What does this study add? To our knowledge, this is the first review to synthesize barriers and facilitators to discussing child weight. This review interprets key barriers and facilitators in the context of the socio-ecological model. Supports the development of interventions matched to the appropriate level of the socio-economic model.