Development of a complex Interdisciplinary Nurse-coordinated SELf-MAnagement (INSELMA) intervention for patients with inflammatory arthritis.

BACKGROUND: Apart from a consistent focus on treating inflammation, patients with inflammatory arthritis (IA) report a range of unmet needs. Many experience not only residual symptoms but also various other physical, psychological, and social effects. Therefore, this study aimed to develop a complex Interdisciplinary Nurse-coordinated self-management (INSELMA) intervention for patients with IA, as an add-on treatment to usual outpatient care for those with substantial disease impact. METHODS: This study followed the British Medical Research Council's updated framework for developing complex interventions. The process encompassed the following steps: (1) The evidence base was identified; (2) workshops were held, involving 38 relevant stakeholders (managers, physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists from hospitals and municipalities, and two patient research partners), to discuss and further develop the preliminary ideas; (3) relevant theories were identified (i.e., self-efficacy, acceptance and commitment therapy, and health literacy); (4) the intervention was modeled and remodeled and (5) the results, describing the final INSELMA intervention and outcomes. RESULTS: The INSELMA intervention encompasses an initial biopsychosocial assessment, which is performed by a rheumatology nurse. Then, activities that the participant wishes to improve are identified and goals are set. The nurse refers the participant to a multidisciplinary team and coordinates their support and relevant services in the participant's municipality. In addition, the health professionals have the opportunity to hold two interdisciplinary conferences during the intervention period. The participant and the health professionals work to achieve the set goals during a 6-month period, which ends with a status assessment and a discussion of further needs. The INSELMA intervention aims to increase self-management, reduce the impact of IA (e.g., pain, fatigue, sleep problems, and absenteeism), and increase self-efficacy, quality of life, mental well-being, work ability, and physical activity. CONCLUSIONS: The development of the INSELMA intervention involved stakeholders from two Danish rheumatology outpatient clinics, patient research partners and municipalities. We believe that we have identified important mechanisms to increase the self-management and quality of life of people with IA and to decrease the disease impact in those who are substantially affected. The health professionals involved have developed competences in delivering the intervention and it is ready to be tested in a feasibility study.

2021 EULAR points to consider to support people with rheumatic and musculoskeletal diseases to participate in healthy and sustainable paid work.

AIM: As part of its strategic objectives for 2023, EULAR aims to improve the work participation of people with rheumatic and musculoskeletal diseases (RMDs). One strategic initiative focused on the development of overarching points to consider (PtC) to support people with RMDs in healthy and sustainable paid work participation. METHODS: EULAR's standardised operating procedures were followed. A steering group identified six research areas on paid work participation. Three systematic literature reviews, several non-systematic reviews and two surveys were conducted. A multidisciplinary taskforce of 25 experts from 10 European countries and Canada formulated overarching principles and PtC after discussion of the results of literature reviews and surveys. Consensus was obtained through voting, with levels of agreement obtained anonymously. RESULTS: Three overarching principles and 11 PtC were formulated. The PtC recognise various stakeholders are important to improving work participation. Five PtC emphasise shared responsibilities (eg, obligation to provide active support) (PtC 1, 2, 3, 5, 6). One encourages people with RMDs to discuss work limitations when necessary at each phase of their working life (PtC 4) and two focus on the role of interventions by healthcare providers or employers (PtC 7, 8). Employers are encouraged to create inclusive and flexible workplaces (PtC 10) and policymakers to make necessary changes in social and labour policies (PtC 9, 11). A research agenda highlights the necessity for stronger evidence aimed at personalising work-related support to the diverse needs of people with RMDs. CONCLUSION: Implementation of these EULAR PtC will improve healthy and sustainable work participation of people with RMDs.

ASAS-EULAR recommendations for the management of axial spondyloarthritis: 2022 update.

OBJECTIVES: To update the Assessment of SpondyloArthritis international Society (ASAS)-EULAR recommendations for the management of axial spondyloarthritis (axSpA). METHODS: Following the EULAR Standardised Operating Procedures, two systematic literature reviews were conducted on non-pharmacological and pharmacological treatment of axSpA. In a task force meeting, the evidence was presented, discussed, and overarching principles and recommendations were updated, followed by voting. RESULTS: Five overarching principles and 15 recommendations with a focus on personalised medicine were agreed: eight remained unchanged from the previous recommendations; three with minor edits on nomenclature; two with relevant updates (#9, 12); two newly formulated (#10, 11). The first five recommendations focus on treatment target and monitoring, non-pharmacological management and non-steroidal anti-inflammatory drugs (NSAIDs) as first-choice pharmacological treatment. Recommendations 6-8 deal with analgesics and discourage long-term glucocorticoids and conventional synthetic disease-modifying antirheumatic drugs (DMARDs) for pure axial involvement. Recommendation 9 describes the indication of biological DMARDs (bDMARDs, that is, tumour necrosis factor inhibitors (TNFi), interleukin-17 inhibitors (IL-17i)) and targeted synthetic DMARDs (tsDMARDs, ie, Janus kinase inhibitors) for patients who have Ankylosing Spondylitis Disease Activity Score ≥2.1 and failed ≥2 NSAIDs and also have either elevated C reactive protein, MRI inflammation of sacroiliac joints or radiographic sacroiliitis. Current practice is to start a TNFi or IL-17i. Recommendation 10 addresses extramusculoskeletal manifestations with TNF monoclonal antibodies preferred for recurrent uveitis or inflammatory bowel disease, and IL-17i for significant psoriasis. Treatment failure should prompt re-evaluation of the diagnosis and consideration of the presence of comorbidities (#11). If active axSpA is confirmed, switching to another b/tsDMARD is recommended (#12). Tapering, rather than immediate discontinuation of a bDMARD, can be considered in patients in sustained remission (#13). The last recommendations (#14, 15) deal with surgery and spinal fractures. CONCLUSIONS: The 2022 ASAS-EULAR recommendations provide up-to-date guidance on the management of patients with axSpA.

Developing a complex vocational rehabilitation intervention for patients with inflammatory arthritis: the WORK-ON study.

BACKGROUND: People with inflammatory arthritis often experience challenges at work and balancing paid work and energy in everyday life. Low work ability is common, and people with inflammatory arthritis face high risks of losing their jobs and permanent exclusion from the labour market. Context-specific tailored rehabilitation targeting persons with inflammatory arthritis is limited. The aim of this study is to describe the development of WORK-ON - a vocational rehabilitation for people with inflammatory arthritis. METHODS: Following the Medical Research Council's framework for complex interventions, WORK-ON was developed based on existing evidence, interviews with patients and rehabilitation clinicians, a workshop, and an iterative process. RESULTS: The six-month vocational rehabilitation, WORK-ON, consists of 1) an initial assessment and goal setting by an occupational therapist experienced in rheumatology rehabilitation, 2) coordination by the same occupational therapist and individual support, including navigating across the primary and secondary health sectors, as well as social care, 3) group sessions for peer support, and 4) optionally individually tailored consultations with physiotherapists, nurses, or social workers. CONCLUSION: WORK-ON is ready to be tested in a feasibility study. TRIAL REGISTRATION: The Regional Committees on Health Ethics for Southern Denmark stated that no formal ethical approval was necessary in this study (20,192,000-105).

Patient-reported outcome for 17,648 patients in 5 different Swedish orthopaedic quality registers before and 1 year after surgery: an observational study.

BACKGROUND AND PURPOSE: The EQ-5D is a patientreported outcome measure (PROM). To make priorities and allocate resources between patients and surgical procedures it is necessary to evaluate outcome differences, which is why comparing PROMs between registers is important. We compared EQ-5D data and the follow-up rate for selected diagnoses reported to Swedish orthopedic registers before and 1 year after surgery. PATIENTS AND METHODS: Patients from 5 orthopedic registers (Swespine, Swedish Hip Arthroplasty Register, Swedish Knee Arthroplasty Register, Swedankle, and Swefoot) who, in 2014-2018, underwent surgery in southern Sweden were included in the study. Data on the EQ-5D index, individual questions, and the EQ-VAS at baseline and at the 1-year follow-up was compared. RESULTS: 17,648 patients had completed the EQ-5D pre- and 1-year postoperatively. The follow-up rate ranged from 32% to 88%. All registers showed a statistical and clinically relevant improvement in the EQ-5D index (mean improvement 0.29-0.39), where patients who underwent hip arthroplasties experienced the largest improvement. The EQ-5D index improvements in patients with foot and ankle surgeries were larger than for patients with knee arthroplasties and spinal surgeries. The dimensions "self-care" and "usual activities" had the largest change in patients reporting "some problems." CONCLUSION: All 5 registers showed a clinically relevant improvement 1 year postoperatively regarding the EQ-5D index, supporting continuous resource allocation to these groups of patients and surgical procedures. However, using PROM data to present register differences was challenged by the high number of non-responders.

Joy of living through exercise - a qualitative study of clinically referred adolescents' experiences of moderate to vigorous exercise as treatment for depression.

AIM: Depression is common and rising in adolescents. Recent meta-analyses indicate a moderate effect of exercise on depression symptoms. Clinically referred adolescents and their experiences of an exercise intervention have rarely been studied. The aim of this study was to describe clinically referred adolescents' experience of moderate to vigorous exercise as a treatment for depression. METHODS: A total of 16 clinically referred adolescents with persistent major depression, who had taken part in a 14-week aerobic exercise intervention of moderate to vigorous intensity, were interviewed. Data was analysed by latent qualitative content analysis. RESULTS: After taking part in the exercise intervention the adolescents expressed enhanced participation in daily life and joy of living by demonstrating commitment and a sense of empowerment. The categories contained both improved vitality and structure of everyday life as well as improved self-esteem and self-control. Participation in the exercise intervention changed their self-image, relationships, school performance, and family life. The adolescents highlighted that exercising in a group was beneficial, giving security and structure. CONCLUSIONS: Adolescents with persistent depression experienced several beneficial aspects of participating in an aerobic group exercise of moderate to vigorous intensity.

Nutrition- and feeding practice-related risk factors for rapid weight gain during the first year of life: a population-based birth cohort study.

BACKGROUND: Rapid weight gain (RWG) during infancy increases the risk of excess weight later in life. Nutrition- and feeding practices associated with RWG need to be further examined. The present study aimed to examine nutrition- and feeding practice-related risk factors for RWG during the first year of life. METHODS: A population-based longitudinal birth cohort study of 1780 infants, classified as having RWG or non-RWG during 0-3-4, 0-6 and 6-12 months. RWG was defined as a change > 0.67 in weight standard deviation scores. Associations between nutrition- and feeding practice-related factors and RWG were examined with logistic regression models. RESULTS: Of the participating infants, 47% had RWG during 0-3-4 months, 46% during 0-6 months and 8% during 6-12 months. In the fully adjusted models, bottle-feeding at birth and at 3-4 months and nighttime meals containing formula milk were positively associated with RWG during 0-3-4 months (p < 0.05 for all). Breastfeeding at 3-4 months and nighttime meals containing breast milk were negatively associated with RWG during this period (p < 0.001). Bottle-feeding at birth, 3-4 and 6 months and nighttime meals containing formula milk at 3-4 months were positively associated with RWG during 0-6 months (p < 0.01 for all). Breastfeeding at 3-4 and 6 months was negatively associated with RWG (p < 0.01). During 6-12 months, only bottle-feeding at 3-4 months was positively associated with RWG (p < 0.05). CONCLUSIONS: RWG was more common during the first 6 months of life and bottle-feeding and formula milk given at night were risk factors for RWG during this period.

Body mass index classification misses to identify children with an elevated waist-to-height ratio at 5 years of age.

BACKGROUND: Abdominal adiposity is an important risk factor in the metabolic syndrome. Since BMI does not reveal fat distribution, waist-to-height ratio (WHtR) has been suggested as a better measure of abdominal adiposity in children, but only a few studies cover the preschool population. The aim of the present study was to examine BMI and WHtR growth patterns and their association regarding their ability to identify children with an elevated WHtR at 5 years of age. METHODS: A population-based longitudinal birth cohort study of 1540 children, followed from 0 to 5 years with nine measurement points. The children were classified as having WHtR standard deviation scores (WHtRSDS) <1 or ≥1 at 5 years. Student's t-tests and Chi-squared tests were used in the analyses. RESULTS: Association between BMISDS and WHtRSDS at 5 years showed that 55% of children with WHtRSDS ≥1 at 5 years had normal BMISDS (p < 0.001). Children with WHtRSDS ≥1 at 5 years had from an early age significantly higher mean BMISDS and WHtRSDS than children with values <1. CONCLUSIONS: BMI classification misses every second child with WHtRSDS ≥1 at 5 years, suggesting that WHtR adds value in identifying children with abdominal adiposity who may need further investigation regarding cardiometabolic risk factors.

Worse health status, sleeping problems, and anxiety in 16-year-old students are associated with chronic musculoskeletal pain at three-year follow-up.

BACKGROUND: Chronic musculoskeletal pain is common in adolescents, and it has been shown that adolescents with pain may become young adults with pain. Pain often coincides with psychosomatic symptoms in adults, but little is known about longitudinal associations and predictors of pain in adolescents. The aim was to investigate chronic musculoskeletal pain and its associations with health status, sleeping problems, stress, anxiety, depression, and physical activity in 16-year-old students at baseline, and to identify risk factors using a three-year follow-up. METHODS: This was a longitudinal study of 256 students attending a Swedish upper secondary school. Questionnaires regarding chronic musculoskeletal pain and distribution of pain (mannequin), health status (EQ-5D-3 L), sleeping problems (Uppsala Sleep Inventory), stress symptoms (single-item question), anxiety and depression (Hospital Anxiety and Depression Scale), and physical activity (International Physical Activity Questionnaire) were issued at baseline and follow-up. Student's t-test and chi2 test were used for descriptive statistics and logistic regression analyses were used to study associations between chronic pain and independent variables. RESULTS: Fifty-two out of 221 students at baseline (23.5%) and 39 out of 154 students at follow-up (25.3%) were categorized as having chronic musculoskeletal pain. Chronic musculoskeletal pain at follow-up was separately associated with reporting of an EQ-5D value below median (OR 4.06, 95% CI 1.83-9.01), severe sleeping problems (OR 3.63, 95% CI 1.69-7.82), and possible anxiety (OR 4.19, 95% CI 1.74-10.11) or probable anxiety (OR 3.82, 95% CI 1.17-12.48) at baseline. Similar results were found for associations between chronic musculoskeletal pain and independent variables at baseline. In multiple logistic regression analysis, chronic musculoskeletal pain at baseline was a predictor of chronic musculoskeletal pain at follow-up (OR 2.99, 95% CI 1.09-8.24, R2 = 0.240). CONCLUSION: Chronic musculoskeletal pain at baseline was the most important predictor for reporting chronic musculoskeletal pain at the three-year follow-up, but a worse health status, severe sleeping problems, and anxiety also predicted persistence or development of chronic musculoskeletal pain over time. Interventions should be introduced early on by the school health services to promote student health.

The StarT back screening tool and a pain mannequin improve triage in individuals with low back pain at risk of a worse prognosis - a population based cohort study.

BACKGROUND: The STarT Back Screening Tool (SBT) identifies patients with low back pain (LBP) at risk of a worse prognosis of persistent disabling back pain, and thereby facilitates triage to appropriate treatment level. However, the SBT does not consider the pain distribution, which is a known predictor of chronic widespread pain (CWP). The aim of this study was to determine if screening by the SBT and screening of multisite chronic widespread pain (MS-CWP) could identity individuals with a worse prognosis. A secondary aim was to analyze self-reported health in individuals with and without LBP, in relation to the combination of these two screening tools. METHODS: One hundred and nineteen individuals (aged 40-71 years, mean (SD) 59 (8) years), 52 with LBP and 67 references, answered two screening tools; the SBT and a pain mannequin - as well as a questionnaire addressing self-reported health. The SBT stratifies into low, medium or high risk of a worse prognosis. The pain mannequin stratifies into either presence or absence of CWP in combination with ≥7 painful areas of pain (0-18), here defined as MS-CWP (high risk of worse prognosis). The two screening tools were studied one-by-one, and as a combined screening. For statistical analyses, independent t-tests and Chi-square tests were used. RESULTS: Both the SBT and the pain mannequin identified risk of a worse prognosis in individuals with (p = 0.007) or without (p = 0.001) LBP. We found that the screening tools identified partly different individuals at risk. The SBT identified one individual, while the pain mannequin identified 21 (19%). When combining the two screening methods, 21 individuals (17%) were at high risk of a worse prognosis. When analyzing differences between individuals at high risk (combined SBT and MS-CWP) with those at low risk, individuals at high risk reported worse health (p = 0.013 - < 0.001). CONCLUSIONS: Both screening tools identified individuals at risk, but they captured different aspects, and also different number of individuals at high risk of a worse prognosis. Thus, using a combination may improve early detection and facilitate triage to appropriate treatment level with multimodal approach also in those otherwise missed by the SBT.

Sleep problems and fatigue as predictors for the onset of chronic widespread pain over a 5- and 18-year perspective.

BACKGROUND: Previous research suggests that sleep problems may be an important predictor for chronic widespread pain (CWP). With this study we investigated both sleep problems and fatigue as predictors for the onset of CWP over a 5-year and an 18-year perspective in a population free from CWP at baseline. METHODS: To get a more stable classification of CWP, we used a wash-out period, including only individuals who had not reported CWP at baseline (1998) and three years prior baseline (1995). In all, data from 1249 individuals entered the analyses for the 5-year follow-up and 791 entered for the 18-year follow-up. Difficulties initiating sleep, maintaining sleep, early morning awakening, non-restorative sleep and fatigue were investigated as predictors separately and simultaneously in binary logistic regression analyses. RESULTS: The results showed that problems with initiating sleep, maintaining sleep, early awakening and non-restorative sleep predicted the onset of CWP over a 5-year (OR 1.85 to OR 2.27) and 18-year (OR 1.54 to OR 2.25) perspective irrespective of mental health (assessed by SF-36) at baseline. Also fatigue predicted the onset of CWP over the two-time perspectives (OR 3.70 and OR 2.36 respectively) when adjusting for mental health. Overall the effect of the sleep problems and fatigue on new onset CWP (over a 5-year perspective) was somewhat attenuated when adjusting for pain at baseline but remained significant for problems with early awakening, non-restorative sleep and fatigue. Problems with maintaining sleep predicted CWP 18 years later irrespective of mental health and number of pain regions (OR 1.72). Reporting simultaneous problems with all four aspects of sleep was associated with the onset of CWP over a five-year and 18-yearperspective, irrespective of age, gender, socio economy, mental health and pain at baseline. Sleep problems and fatigue predicted the onset of CWP five years later irrespective of each other. CONCLUSION: Sleep problems and fatigue were both important predictors for the onset of CWP over a five-year perspective. Sleep problems was a stronger predictor in a longer time-perspective. The results highlight the importance of the assessment of sleep quality and fatigue in the clinic.

Health status, physical activity, and orthorexia nervosa: A comparison between exercise science students and business students.

Orthorexia nervosa is described as an exaggerated fixation on healthy food. It is unclear whether students in health-oriented academic programs, highly focused on physical exercise, are more prone to develop orthorexia nervosa than students in other educational areas. The aim was to compare health status, physical activity, and frequency of orthorexia nervosa between university students enrolled in an exercise science program (n = 118) or a business program (n = 89). The students completed the Short Form-36 Health Survey (SF-36), the International Physical Activity Questionnaire (IPAQ), and ORTO-15, which defines orthorexia nervosa as a sensitive and obsessive behavior towards healthy nutrition. The SF-36 showed that exercise science students scored worse than business students regarding bodily pain (72.8 vs. 82.5; p = 0.001), but better regarding general health (83.1 vs. 77.1; p = 0.006). Of 188 students, 144 (76.6%) had an ORTO-15 score indicating orthorexia nervosa, with a higher proportion in exercise science students than in business students (84.5% vs. 65.4%; p = 0.002). Orthorexia nervosa in combination with a high level of physical activity was most often seen in men in exercise science studies and less often in women in business studies (45.1% vs. 8.3%; p < 0.000). A high degree of self-reporting of pain and orthorexia nervosa in exercise science students may cause problems in the future, since they are expected to coach others in healthy living. Our findings may be valuable in the development of health-oriented academic programs and within student healthcare services.

Educational needs in patients with spondyloarthritis in Sweden - a mixed-methods study.

BACKGROUND: There is a demand for a flexible and individually tailored patient education to meet patients' specific needs and priorities, but this area has seldom been studied in patients with spondyloarthritis (SpA), a family of inflammatory rheumatic diseases. The aim of the present study was to identify needs and priorities in patient education in patients with SpA. A second aim was to investigate patients' experiences and preferences of receiving patient education. METHODS: Data collection included a questionnaire survey with the Educational Needs Assessment Tool (ENAT) and interviews, using a mixed-methods design. Patients were identified through a specialist clinic register. Descriptive data are presented as mean with standard deviation, or frequencies. Chi-square test and independent-samples t-test were used for group comparisons. A manifest qualitative conventional content analysis was conducted to explore patients' experiences and needs in patient education, based on two focus groups (n = 6) and five individual interviews. RESULTS: Almost half (43%) of the 183 SpA patients had educational needs, particularly regarding aspects of self-help, feelings, and the disease process. More educational needs were reported by women and in patients with higher disease activity, while duration of disease did not affect the needs. The qualitative analysis highlighted the importance of obtaining a guiding, reliable, and easily available patient education for management of SpA. Individual contacts with healthcare professionals were of importance, but newer media were also requested. CONCLUSION: There are considerable educational needs in patients with SpA, and education concerning self-help, feelings, and the diseases process were raised as important issues. Healthcare professionals need to consider the importance of presenting varied formats of education based on the experiences and preferences of patients with SpA.

Minimally important change, measurement error, and responsiveness for the Self-Reported Foot and Ankle Score.

Background and purpose - Patient-reported outcome measures (PROMs) are increasingly used to evaluate results in orthopedic surgery. To enhance good responsiveness with a PROM, the minimally important change (MIC) should be established. MIC reflects the smallest measured change in score that is perceived as being relevant by the patients. We assessed MIC for the Self-reported Foot and Ankle Score (SEFAS) used in Swedish national registries. Patients and methods - Patients with forefoot disorders (n = 83) or hindfoot/ankle disorders (n = 80) completed the SEFAS before surgery and 6 months after surgery. At 6 months also, a patient global assessment (PGA) scale-as external criterion-was completed. Measurement error was expressed as the standard error of a single determination. MIC was calculated by (1) median change scores in improved patients on the PGA scale, and (2) the best cutoff point (BCP) and area under the curve (AUC) using analysis of receiver operating characteristic curves (ROCs). Results - The change in mean summary score was the same, 9 (SD 9), in patients with forefoot disorders and in patients with hindfoot/ankle disorders. MIC for SEFAS in the total sample was 5 score points (IQR: 2-8) and the measurement error was 2.4. BCP was 5 and AUC was 0.8 (95% CI: 0.7-0.9). Interpretation - As previously shown, SEFAS has good responsiveness. The score change in SEFAS 6 months after surgery should exceed 5 score points in both forefoot patients and hindfoot/ankle patients to be considered as being clinically relevant.

Back pain and health status in patients with clinically diagnosed ankylosing spondylitis, psoriatic arthritis and other spondyloarthritis: a cross-sectional population-based study.

BACKGROUND: In the broader spectrum of back pain, inflammatory back pain (IBP) is a symptom that may indicate axial spondyloarthritis (SpA). The objectives of this study were to determine the frequency of current IBP, as a hallmark sign of possible axial SpA, in patients with ankylosing spondylitis (AS), psoriatic arthritis (PsA) and other SpA and to compare self-reported health between the groups with current IBP. METHODS: Five-thousand seven hundred seventy one patients identified in the regional healthcare register of the most southern county of Sweden, diagnosed at least once by a physician (based on ICD-codes) with any type of SpA in 2003-2007, were sent a postal survey in 2009. Patients with current IBP were identified, based on self-reported back pain ≥3 months in the preceding year and fulfilling the Berlin criteria for IBP. The frequencies of IBP in AS, PsA and other SpA (including the remaining subgroups of SpA) were determined, and the groups were compared with regard to patient reported outcome measures (PROMs). RESULTS: The frequency and proportion of patients with current IBP in AS, PsA and other SpA were 319 (43 %), 409 (31 %) and 282 (39 %) respectively, within the responders to the survey (N = 2785). The proportion was statistically higher in AS, compared to PsA (p < 0.001), but not for AS compared to other SpA (p = 0.112). PsA and other SpA, with current IBP, had similar (BASFI, EQ-5D, patients global assessment, fatigue, spinal pain) or worse (BASDAI) PROMs, compared to AS with current IBP. PsA with current IBP received pharmacological, anti-rheumatic, treatment more frequently than AS with current IBP, while AS and other SpA received treatment to a similar degree. CONCLUSION: The proportion of patients with current IBP was substantial in all three groups and health reports in the non-AS groups were similar or worse compared to the AS group supporting the severity of IBP in these non-AS SpA groups. These findings may indicate a room for improvement concerning detection of axial disease within different subtypes of non-AS SpA, and possibly also for treatment.

Predictors of presenteeism and activity impairment outside work in patients with spondyloarthritis.

PURPOSES: To assess predictors of presenteeism (reduced productivity at work) and activity impairment outside work in patients with spondyloarthritis (SpA). METHODS: Multivariate logistic regression analysis was used to study predictors of presenteeism and activity impairment in 1,253 patients with SpA based on a 2.5 year follow-up questionnaire. The Work Productivity and Activity Impairment (WPAI) questionnaire was used as main outcome. Age, gender, lifestyle factors, subgroups, disease duration, and different patient reported outcome measures (PROMs) were studied as possible predictors. The association between presenteeism and WPAI activity impairment outside work was assessed. RESULTS: Out of 1,253 patients, 757 reported being in work and of these 720 responded to the WPAI questionnaire. The mean (confidence interval, CI) reported presenteeism was 25% (23-27%) and mean activity impairment 33% (31-35%) (0-100%, 0 = no reduction). Significant predictors of presenteeism and activity impairment at follow-up (controlled for gender, age, spondyloarthritis subgroups and presenteeism at baseline) were presenteeism at baseline, poor quality of life, worse disease activity, decreased physical function, lower self-efficacy pain and symptom, higher scores of anxiety, depression, smoking and low education level, and for activity impairment also female sex. There was a strong association between presenteeism and activity impairment outside work (OR 16.7; 95% CI 11.6-24.3; p < 0.001). CONCLUSIONS: Presenteeism and activity impairment were not only predicted by presenteeism at baseline, but also by several PROMs commonly used in clinical rheumatology practice. Impaired activity outside work could indicate problems also at work suggesting why both areas need to be addressed in the clinical situation.

Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries.

OBJECTIVES: To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries. METHODS: A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. RESULTS: The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction χ(2) p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as 'testlets'), fit to the model was satisfied (item-trait interaction χ(2) p>0.18) in all pooled disease group datasets except OA (χ(2)=99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated to enable transformation of ENAT scores when required. CONCLUSIONS: The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.

Differences in muscle activity during hand-dexterity tasks between women with arthritis and a healthy reference group.

BACKGROUND: Impaired hand function is common in patients with arthritis and it affects performance of daily activities; thus, hand exercises are recommended. There is little information on the extent to which the disease affects activation of the flexor and extensor muscles during these hand-dexterity tasks. The purpose of this study was to compare muscle activation during such tasks in subjects with arthritis and in a healthy reference group. METHODS: Muscle activation was measured in m. extensor digitorium communis (EDC) and in m. flexor carpi radialis (FCR) with surface electromyography (EMG) in women with rheumatoid arthritis (RA, n = 20), hand osteoarthritis (HOA, n = 16) and in a healthy reference group (n = 20) during the performance of four daily activity tasks and four hand exercises. Maximal voluntary isometric contraction (MVIC) was measured to enable intermuscular comparisons, and muscle activation is presented as %MVIC. RESULTS: The arthritis group used a higher %MVIC than the reference group in both FCR and EDC when cutting with a pair of scissors, pulling up a zipper and-for the EDC-also when writing with a pen and using a key (p < 0.02). The exercise "rolling dough with flat hands" required the lowest %MVIC and may be less effective in improving muscle strength. CONCLUSIONS: Women with arthritis tend to use higher levels of muscle activation in daily tasks than healthy women, and wrist extensors and flexors appear to be equally affected. It is important that hand training programs reflect real-life situations and focus also on extensor strength.

Validity, reliability, and responsiveness of the Self-reported Foot and Ankle Score (SEFAS) in forefoot, hindfoot, and ankle disorders.

BACKGROUND AND PURPOSE: The self-reported foot and ankle score (SEFAS) is a questionnaire designed to evaluate disorders of the foot and ankle, but it is only validated for arthritis in the ankle. We validated SEFAS in patients with forefoot, midfoot, hindfoot, and ankle disorders. PATIENTS AND METHODS: 118 patients with forefoot disorders and 106 patients with hindfoot or ankle disorders completed the SEFAS, the foot and ankle outcome score (FAOS), SF-36, and EQ-5D before surgery. We evaluated construct validity for SEFAS versus FAOS, SF-36, and EQ-5D; floor and ceiling effects; test-retest reliability (ICC); internal consistency; and agreement. Responsiveness was evaluated by effect size (ES) and standardized response mean (SRM) 6 months after surgery. The analyses were done separately in patients with forefoot disorders and hindfoot/ankle disorders. RESULTS: Comparing SEFAS to the other scores, convergent validity (when correlating foot-specific questions) and divergent validity (when correlating foot-specific and general questions) were confirmed. SEFAS had no floor and ceiling effects. In patients with forefoot disorders, ICC was 0.92 (CI: 0.85-0.96), Cronbach's α was 0.84, ES was 1.29, and SRM was 1.27. In patients with hindfoot or ankle disorders, ICC was 0.93 (CI: 0.88-0.96), Cronbach's α was 0.86, ES was 1.05, and SRM was 0.99. INTERPRETATION: SEFAS has acceptable validity, reliability, and responsiveness in patients with various forefoot, hindfoot, and ankle disorders. SEFAS is therefore an appropriate patient- reported outcome measure (PROM) for these patients, even in national registries.

A joint venture: patients' experiences with goal setting in rheumatology rehabilitation - a qualitative study.

PURPOSE: To explore how patients with rheumatic musculoskeletal diseases (RMDs) perceive participation in the goal setting process prior to interdisciplinary rehabilitation. METHODS: We conducted semi-structured interviews with 22 participants admitted to an interdisciplinary rehabilitation stay for patients with RMDs at two Danish rehabilitation centres. Qualitative content analysis was applied. RESULTS: The participants perceived goal setting as a joint venture between two parties: the health professionals and the participant. Three categories were formed, which described both facilitators and barriers in the process. Responsibility for goal setting described the importance of shared responsibility, or health professionals as experts, taking full responsibility for goal setting. Equipped for goal setting included perceptions of being well prepared for the process, or considerations that goal setting was difficult because of a lack of information. An equal member of the team entailed both the feeling of being recognised as one in the team, or feeling like an outsider. CONCLUSION: Goal setting is perceived as a challenge by some patients. Participation in goal setting depends on both the capacity and the opportunity to participate which are factors linked to patients' level of health literacy.

Patients largely perceive goal setting as a joint venture, constituting a partnership aimed at sharing decisions regarding one or more rehabilitation goals, yet, for some patients, active participation in this joint venture poses challenges.When patients perceive a shared responsibility, acquire appropriate and sufficient knowledge prior to the process and feel accepted as whole persons based on a biopsychosocial approach it facilitates goal setting.Health professionals should be aware of barriers perceived by patients, such as abdicating responsibility because they view health professionals as authority figures, feeling uncertain about the purpose of setting goals and having difficulties in receiving and applying information.Patients' health literacy as well health literacy responsiveness may be of importance to the experience of barriers to shared decisions and goal setting among patients with RMDs.