Search

Assessing the construct validity of the Patient-Reported Outcomes Measurement Information System Physical Function 10-Item Short Form (PROMIS PF-10) in a subpopulation of rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA) patients with severe limitations in physical functioning (PF). RA/axSpA patients with severe functional limitations completed the PROMIS PF-10, Health Assessment Questionnaire – Disability Index (HAQ-DI for RA) or Bath Ankylosing Spondylitis Functional Index (BASFI for axSpA), 36-item Short Form Health Survey (SF-36), EuroQol 5-dimensions 5-level (index score, EQ-VAS), and performed the Six-Minute Walk Test (6MWT). Construct validity was assessed by computing Spearman rank or Pearson correlation coefficients and testing hypotheses about correlations between the PROMIS PF-10 and measures of PF and quality of life. Data from 316 patients (180 RA/136 axSpA, 91.7%/47.8% female, mean ± sd age 58.6 ± 13.2/54.0 ± 11.3 years) were analysed. The median (IQR) PROMIS PF-10 score was 34.5 (31.4–37.6) in RA and 36.0 (32.8–38.3) in axSpA patients. The PROMIS PF-10 correlated strongly with the HAQ-DI, BASFI, and EQ-5D-5L index score (r > 0.6), moderately with the SF-36 Physical Component Summary score, EQ-VAS, and 6MWT (0.30 ≤ r ≤ 0.60), and weakly with the SF-36 Mental Component Summary score (r < 0.30). Five of six hypotheses (83%) were confirmed in both groups. The overall strong correlation of the PROMIS PF-10 with measures of PF and moderate to weak correlations with outcomes measuring different constructs were confirmed in subpopulations of RA and axSpA patients with severe functional limitations, supporting its construct validity. [ABSTRACT FROM AUTHOR]

To assess the perspectives of physical therapists treating patients with systemic sclerosis (SSc) on their current practice and educational needs. In July 2019, 405 SSc patients attending a multidisciplinary SSc programme received a survey on physical therapy. Patients who indicated having received physical therapy in the past 2 years were asked to invite their treating physical therapist to complete a questionnaire including sociodemographic characteristics, referral process, content of treatment, perceived knowledge and skills, and educational needs (mostly yes/no answers). Forty-eight of 80 possibly eligible physical therapists treating SSc patients returned the questionnaire [median age 44 years (interquartile range 35–58); 52% female; median number of SSc patients currently treated: 1 (range 1–4)]. Eighty-one per cent (n = 39) of physical therapists had received a referral, with 69% (n = 27/39) judging its content as insufficient. The most often provided types of exercises were range of motion (96%), muscle-strengthening (85%), and aerobic (71%) exercises, followed by hand (42%) and mouth (10%) exercises. Concerning manual treatment, 65% performed either massage or passive mobilization. Regarding competences, 65% indicated feeling capable of treating SSc patients. Nevertheless, 85% expressed the need for an information website on physical therapy in SSc, and 77% for postgraduate education on SSc. Primary care physical therapists treating patients with SSc used a wide range of treatment modalities. Although most stated that they treated very few patients, the majority felt capable of treating SSc patients. Nevertheless, the large majority expressed a need for additional information and educational activities concerning SSc. [ABSTRACT FROM AUTHOR]

Objective: To develop a consensual list of the most important aspects of activity pacing (AP) as an intervention within the context of non-pharmacological rheumatology care.Method: An international, multidisciplinary expert panel comprising 60 clinicians and/or healthcare providers experienced in AP across 12 different countries participated in a Delphi survey. Over four Delphi rounds, the panel identified and ranked the most important goals of AP, behaviours of AP (the actions people take to meet the goal of AP), strategies to change behaviour in AP, and contextual factors that should be acknowledged when instructing AP. Additionally, topics for future research on AP were formulated and prioritized.Results: The Delphi panel prioritized 9 goals, 11 behaviours, 9 strategies to change behaviour, and 10 contextual factors of AP. These items were integrated into a consensual list containing the most important aspects of AP interventions in non-pharmacological rheumatology care. Nine topics for future research on AP with the highest ranking were included in a research agenda highlighting that future research should focus on the effectiveness of AP interventions and on appropriate outcome measures to assess its effectiveness, as selected by 64% and 82% of the panellists, respectively.Conclusions: The diversity and number of items included in the consensual list developed in the current study reflect the heterogeneity of the concept of AP. This study is an important first step in achieving more transparency and homogeneity in the concept of AP in both rheumatology daily clinical practice and research. [ABSTRACT FROM AUTHOR]

Objectives: To investigate whether all-cause mortality and deaths due to cardiovascular disease are increased in patients who have consulted primary or secondary health care with symptoms and signs of osteoarthritis (OA). Method: This study included 383 patients with symptomatic OA at multiple sites from the Genetics ARthrosis and Progression (GARP) study (mean age 60 years, 82% women, 3693 person-years of follow-up) and 459 patients with primary hand, knee, or hip OA from the Osteoarthritis Care Clinic (OCC) study (mean age 61 years, 88% women, 1890 person-years of follow-up). Standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were calculated for all-cause mortality and causes of deaths in comparison to the general population. Cox proportional hazard ratios (HRs) with 95% CIs were used to associate baseline characteristics with all-cause mortality. Results: In the GARP study, 26 patients died whereas 48 deaths were expected (SMR 0.54, 95% CI 0.37-0.79). The SMR was 0.47 (95% CI 0.29-0.76) in women and 0.73 (95% CI 0.39-1.35) in men. Similar results were found in the OCC study (SMR 0.45, 95% CI 0.25-0.82). Malignancy and cardiovascular disease were the main causes of deaths in GARP. Male sex (HR 3.04, 95% CI 1.38-6.69), increasing age (HR 1.10, 95% CI 1.05-1.16), and self-reported cancer (HR 8.29, 95% CI 3.12-22.03) were associated with increased mortality in GARP. Conclusions: Patients consulting health care for their OA are not at higher risk of death than the general population. These results suggest that the management of OA patients may not need to focus specifically on the treatment of cardiovascular risk factors and comorbidities. [ABSTRACT FROM AUTHOR]

Objective. To describe the usage of functional wrist orthoses and to identify factors contributing to usage in patients with rheumatoid arthritis (RA). Methods. A multicentre, cross-sectional study, including a random selection of patients with RA visiting outpatient clinics. A total of 240/362 eligible patients (66%) completed questionnaires, a semi-structured interview and a clinical assessment. Usage was registered according to eight categories ranging from 'always' to 'never'. Factors potentially associated with usage included demographic variables, the presence of wrist and hand complaints, general disease characteristics, mental and physical functioning, coping strategies and satisfaction with functional wrist orthoses. Logistic regression analyses were used to determine which factors were associated with the usage of wrist splints. Results. One hundred twenty-eight patients (53%) possessed functional wrist orthoses, whereas 74/128 (58%) were actually using them. Patients used them mainly during house keeping and cycling/driving. Main reasons for using the orthoses were relief of pain and joint protection, and main reasons for not using them were no need and problems with ease of use. Factors significantly associated with usage included the presence of wrist and hand complaints, worse physical functioning and greater satisfaction with comfort of the wrist orthoses. Conclusion. About half of patients with RA possessed functional wrist orthoses, with 58% of them actually being used. Apart from local complaints and general functional ability, satisfaction with comfort of the functional wrist orthoses appears to be an important factor for their usage. These results point at the need for additional research regarding modifiable factors associated with compliance, such as comfort and ease of use. [ABSTRACT FROM AUTHOR]

Question: What type of physical activity or exercise is undertaken by people with rheumatoid arthritis? What type of physical activity or exercise do they prefer? What is their attitude towards physical activity or exercise? What are the perceived barriers to undertaking physical activity or exercise? Design: Survey of a random sample of people with rheumatoid arthritis. Participants: Four hundred people with rheumatoid arthritis in the Netherlands. Results: Of the 252 people who returned the questionnaire (63% response) 201 (80%) people participated in some type of physical activity or exercise. Significantly more inactive people were male, less educated, and older than the active people. Of the active people, 45 (22%) participated exclusively in supervised activities, 72 (36%) in unsupervised activities, and 84 people (42%) combined supervised and unsupervised activities. Cycling and walking were the two unsupervised activities people performed most often. Supervised group exercise and unsupervised individual physical activity were reported as the favourite activities. Further, more people preferred being physically active under expert supervision than without supervision and preferred water-based over land-based activities. The most frequently-mentioned barriers were lack of energy, presence of pain, lack of motivation, lack of information, and fear of joint damage. Conclusion: The majority of people with rheumatoid arthritis participated in some physical activity or exercise, mostly under supervision. Preferences for types of activity varied, underpinning the need for a variety of options for people with rheumatoid arthritis. [ABSTRACT FROM AUTHOR]

OBJECTIVE: Patients with rheumatoid arthritis (RA) are more at risk for the development of osteoporosis and osteoporotic fractures than are their healthy peers. In this randomized, controlled, multicenter trial, the effectiveness of a 2-year high-intensity weight-bearing exercise program (the Rheumatoid-Arthritis-Patients-In-Training [RAPIT] program) on bone mineral density (BMD) was compared with usual care physical therapy, and the exercise modalities associated with changes in BMD were determined. METHODS: Three hundred nine patients with RA were assigned to an intervention group, either the RAPIT program or usual care physical therapy. The primary end points were BMD of the hip and spine. The exercise modalities examined were aerobic fitness, muscle strength, and, as a surrogate for those effects not directly measured by the RAPIT program, attendance rate. RESULTS: The data on the 136 RAPIT participants and 145 usual care participants who completed the study were analyzed. The mean rate of decrease in hip BMD, but not in lumbar spine BMD, was smaller in patients participating in the RAPIT program when compared with that in the usual care group, with a mean decrease of 1.6% (95% confidence interval [95% CI] 0.8-2.5) over the first year and 0.5% (95% CI 1.1-2.0) over the second year. The change in hip BMD was significantly and independently associated with changes in both muscle strength (multivariate odds ratio [OR] 1.75, 95% CI 1.07-2.86) and aerobic fitness (OR 1.79, 95% CI 1.10-2.90), but not with the attendance rate (OR 1.00, 95% CI 0.99-1.00). CONCLUSION: A long-term high-intensity weight-bearing exercise program for RA patients is effective in slowing down the loss of BMD at the hip. The exercise modalities associated with this effect are muscle strength and aerobic fitness. [ABSTRACT FROM AUTHOR]

OBJECTIVE: There are insufficient data on the effects of long-term intensive exercise in patients with rheumatoid arthritis (RA). We undertook this randomized, controlled, multicenter trial to compare the effectiveness and safety of a 2-year intensive exercise program (Rheumatoid Arthritis Patients In Training [RAPIT]) with those of physical therapy (termed usual care [UC]). METHODS: Three hundred nine RA patients were assigned to either the RAPIT program or UC. The primary end points were functional ability (assessed by the McMaster Toronto Arthritis [MACTAR] Patient Preference Disability Questionnaire and the Health Assessment Questionnaire [HAQ]) and the effects on radiographic progression in large joints. Secondary end points concerned emotional status and disease activity. RESULTS: After 2 years, participants in the RAPIT program showed greater improvement in functional ability than participants in UC. The mean difference in change of the MACTAR Questionnaire score was 2.6 (95% confidence interval [95% CI] 0.1, 5.2) over the first year and 3.1 (95% CI 0.7, 5.5) over the second year. After 2 years, the mean difference in change of the HAQ score was -0.09 (95% CI -0.18, -0.01). The median radiographic damage of the large joints did not increase in either group. In both groups, participants with considerable baseline damage showed slightly more progression in damage, and this was more obvious in the RAPIT group. The RAPIT program proved to be effective in improving emotional status. No detrimental effects on disease activity were found. CONCLUSION: A long-term high-intensity exercise program is more effective than UC in improving functional ability of RA patients. Intensive exercise does not increase radiographic damage of the large joints, except possibly in patients with considerable baseline damage of the large joints. [ABSTRACT FROM AUTHOR]

Objective: We aimed to ascertain how often patients seek help for familial breast cancer in primary care, and to identify GPs management of these patients, in order to see whether guidelines are followed.Methods: This was a descriptive study. GPs (n = 202) attending a postgraduate education programme were asked to fill in a questionnaire which included questions about the number of patients seeking help for familial breast cancer within the last 3 months and about their management strategies.Results: About 80% of the GPs reported that they referred women with concerns about familial breast cancer for further diagnostics (mammography or ultrasound). For half these referrals a plan of regular appointments was set up, and one-eighth of the referrals included breast examination by a physician. Breast self-examination was advised in 50% of the cases. Estimates given to women regarding their breast cancer risk varied considerably. There was a strong relationship between risk estimates and management strategies.Conclusions: Current guidelines regarding surveillance of women with breast cancer in the family were only partly followed. These guidelines do not give sufficient information to define whether there is an increased risk for breast cancer. These guidelines need to be refined. [ABSTRACT FROM AUTHOR]

Background: Assessing a genetic risk for developing breast cancer is not an easy task for a GP. Current expert guidelines for referring and counselling women with a family history positive for breast cancer are complex and difficult to apply in general practice, and have only two strategies (to refer or not to refer for genetic counselling), giving no guidance for the GP on the management of women with a moderately increased risk of familial breast cancer.Objectives: We aimed to develop a set of simple practical guidelines for use in primary care for assessing risk and advising women with a positive family history in general practice and aimed to explore its performance.Methods: Based on a consensus meeting of the Leiden working party of hereditary tumours, the GPs of a university-related health care centre developed a set of GP guidelines to assess risk and advise women with a family history positive for breast cancer in general practice. The GP guidelines include four therapeutic strategies (reassuring, starting surveillance, starting surveillance and contacting a family cancer clinic, referring to a family cancer clinic). Its performance was tested in 67 patients whose pedigrees were available together with the risk assessment of a clinical geneticist using Claus' tables as a gold standard. The gold standard was dichotomized regarding (i) referral to a family cancer clinic and (ii) surveillance. Two existing expert guidelines were similarly compared.Results: Regarding referral to a family cancer clinic, the GP guidelines were very specific, whereas the expert guidelines were more sensitive. Regarding surveillance, the GP guidelines were very sensitive, whereas the expert guidelines were very specific. The total number of misclassified patients was lowest when using the GP guidelines, and higher when using the expert guidelines.Conclusions: The GP guidelines provide a simplification of current guidelines. Before using them on a larger scale, more testing and refining are needed to increase their sensitivity regarding a referral to a family cancer clinic and their specificity regarding surveillance. They incorporate a role for the GP in the care for women with a family history positive for breast cancer with a moderately increased risk. [ABSTRACT FROM AUTHOR]

The aim of this systematic review was to determine the effectiveness of dynamic exercise therapy in improving joint mobility, muscle strength, aerobic capacity and daily functioning in patients with rheumatoid arthritis (RA). In addition, possible unwanted effects such as an increase in pain, disease activity and radiological progression were studied. A computer-aided search of the MEDLINE, Embase and SCISEARCH databases was performed to identify controlled trials on the effect of exercise therapy. Randomized trials were selected on the effect of dynamic exercise therapy in RA patients with an exercise programme fulfilling the following criteria: (a) intensity level such that heart rates exceeded 60% of maximal heart rate during at least 20 min; (b) exercise frequency 2 a week; and duration of intervention 6 weeks. Two blinded reviewers independently selected eligible studies, rated the methodological quality and extracted data. Six out of 30 identified controlled trials met the inclusion criteria. Four of the six included studies fulfilled 7/10 methodological criteria. Because of heterogeneity in outcome measures, data could not be pooled. The results suggest that dynamic exercise therapy is effective in increasing aerobic capacity and muscle strength. No detrimental effects on disease activity and pain were observed. The effects of dynamic exercise therapy on functional ability and radiological progression are unclear. It is concluded that dynamic exercise therapy has a positive effect on physical capacity. Research on the long-term effect of dynamic exercise therapy on radiological progression and functional ability is needed. [ABSTRACT FROM PUBLISHER]

ObjectiveMethodResultsConclusionTrial Registration numberTo evaluate the cost-effectiveness of longstanding personalized exercise therapy compared with usual care in people with rheumatoid arthritis (RA) and severe functional disability.In this cost–utility analysis of a randomized controlled trial (n = 215), with 1 year follow-up, the study population comprised individuals with RA and reported severe difficulties in performing basic daily activities. Assessments were at baseline, 12, 26, and 52 weeks, with measurements of costs including medical and non-medical costs as recorded by patients and healthcare providers. Quality-adjusted life-years (QALYs) were estimated using the EuroQol 5 dimensions 5 levels (EQ-5D-5L) and EuroQol Visual Analogue Scale (EQ-VAS). Costs and QALY differences were analysed according to the intention-to-treat principle using cost-effectiveness acceptability curves.The 1 year societal costs were non-significantly in favour of the usual care group, with a small difference of €180 [95% confidence interval (CI) €−4493 to €4852]. The QALYs were non-significantly in favour of the intervention group, by 0.02 according to the EQ-5D-5L (95% CI −0.05 to 0.09) and by 0.04 according to the EQ-VAS (95% CI 0.00 to 0.08). For a willingness-to-pay threshold of €50 000 per QALY, the intervention was the cost-effective strategy with 60% certainty.This economic evaluation showed no clear economic preference for either group, as the intervention costs were higher in the intervention group, but partly compensated by other cost savings and improved QALYs. Despite severe RA, patients had better clinical outcomes compared with usual care, suggesting no economic reasons to refrain from exercise therapy.Netherlands Trial Register NL8235, included in the International Clinical Trial Registry Platform (ICTRP) (https://trialsearch.who.int/Trial2.aspx?TrialID=NL8235). [ABSTRACT FROM AUTHOR]

The article focuses on the study which examines the responsiveness of 4 patient-reported outcome measures (PROMs) to assess physical function in patients with knee osteoarthritis. Topics discussed include the veracity of the study's hypothesis, the examination of the 4 PROMs on physical function and the small difference in the number of confirmed hypotheses for the Western Ontario and MacMaster Universities Osteoarthritis Index Physical Funcation subscale and Lower Extremity Functional Scale.

Purpose: Work ability of people with rheumatoid arthritis (RA) and axial spondyloarthritis (axSpA) is reduced, but underexamined as a clinical treatment target. The evidence on vocational interventions indicates that delivery by a single healthcare professional (HCP) may be beneficial. Physiotherapist (PT)-led interventions have potential because PTs are most commonly consulted by RA/axSpA patients in the Netherlands. The aim was to develop a PT-led, vocational intervention for people with RA/axSpA and reduced work ability., Methods: Mixed-methods design based on the Medical Research Council (MRC) framework for developing and evaluating complex interventions, combining a rapid literature review and six group meetings with: patient representatives (n = 6 and 10), PTs (n = 12), (occupational) HCPs (n = 9), researchers (n = 6) and a feasibility test in patients (n = 4) and PTs (n = 4)., Results: An intervention was developed and evaluated. Patient representatives emphasized the importance of PTs' expertise in rheumatic diseases and work ability. The potential for PTs to support patients was confirmed by PTs and HCPs. The feasibility test confirmed adequate feasibility and underlined necessity of training PTs in delivery. The final intervention comprised work-focussed modalities integrated into conventional PT treatment (10-21 sessions over 12 months), including a personalized work-roadmap to guide patients to other professionals, exercise therapy, patient education and optional modalities., Conclusion: A mixed-methods design with stakeholder involvement produced a PT-led, vocational intervention for people with RA/axSpA and reduced work ability, tested for feasibility and ready for effectiveness evaluation., (© 2024. The Author(s).)

Objective: To explore the frequency of administration and the usage of the Hip Disability and Knee injury Osteoarthritis Outcome Scores (HOOS/KOOS) and their Physical function Short forms (HOOS-PS/KOOS-PS) by physiotherapists after total hip and knee arthroplasties (THA/TKA)., Design: A cross-sectional study using an open online survey., Setting: Primary care physiotherapy practices affiliated with the Dutch Association for Quality in Physiotherapy., Participants: Physiotherapists with experience treating over five patients with a THA or TKA within the past 5 years., Results: One hundred and sixty-six physiotherapists completed the survey (median age: 40.0 years, female: 34%, median experience: 15.0 years). Of those, 32 did not administer the HOOS(-PS) or KOOS(-PS) ('non-users'), 41 administered only due to organisational requirements or guideline recommendations ('passive users') and 93 actively used them for individual patient treatment purposes ('active users'). 'Treatment evaluation', 'diagnosis', and 'prognosis' were most often reported as potential reasons to actively use the HOOS(-PS) or KOOS(-PS) for individual treatment purposes. Determinants associated with active use of the HOOS(-PS) or KOOS(-PS) appeared to be fewer years of experience as a physiotherapist, a larger treatment volume of THA/TKA, a younger age, and higher attitude scores regarding PROM use., Conclusions: Most responding physiotherapists administer the HOOS(-PS) or KOOS(-PS), but their use for individual treatment is limited. Active users appear to be less experienced, younger, treat larger volumes of THA/TKA, and possess a more positive attitude towards using patient-reported outcome measures., Competing Interests: Disclosure statement The second author is the board chairman of the Dutch Association for Quality in Physiotherapy.

Background: Many patients suffer from osteoarthritis (OA) in multiple joints, possibly resulting in multiple joint arthroplasties (MJAs). Primarily, we determined the cumulative incidence (C in ) of MJA in hip and knee joints up to 10 years. Secondly, we calculated the mean time between the first and subsequent joint arthroplasty, and evaluated the different MJA trajectories. Lastly, we compared patient characteristics and outcomes (functionality and pain) after surgery between MJA patients and single hip arthroplasty or knee arthroplasty (HA and KA) patients., Methods: Primary index (first) HA or KA for OA were extracted from the Dutch Arthroplasty Register. The 1, 2, 5, and 10-year C in (including competing risk death) of MJA, mean time intervals, and MJA-trajectories were calculated and stratified for primary index HA or KA. Sex, preoperative age, and body mass index were compared using ordinal logistic regression. Outcomes, measured preoperatively, 3, 6, and 12 months postoperatively (function: Hip Disability or Knee Injury and OA Outcome Score; Pain: Numerical Rating Scale), were compared using linear regression., Results: A total of 140,406 HA-patients and 140,268 KA-patients were included. One, 2, 5, and 10-year C in for a second arthroplasty were respectively 8.9% [95% confidence interval (CI): 8.7 to 9.0], 14.3% [95% CI: 14.1 to 14.5], 24.0% [95% CI: 23.7 to 24.2], and 32.7% [95% CI: 32.2 to 33.1] after index HA, and 9.5% [95% CI: 9.4 to 9.7], 16.0% [95% CI: 15.9 to 16.2], 26.4% [95% CI: 26.1 to 26.6], and 35.8% [95% CI: 35.4 to 36.3] after index KA. The 10-year C in for > 2 arthroplasties were small in both the index HA and KA groups. Time-intervals from first to second, third, and fourth arthroplasty were 26 [95% CI: 26.1 to 26.7], 47 [95% CI: 46.4 to 48.4], and 58 [95% CI: 55.4 to 61.1] months after index HA, and 26 [95% CI: 25.9 to 26.3], 52 [95% CI: 50.8 to 52.7], and 61 [95% CI: 58.3 to 63.4] months after index KA. There were 83% of the second arthroplasties placed in the contralateral cognate joint (ie, knee or hip). Differences in postoperative functionality and pain between MJAs and single HAs and KAs were small., Conclusions: The 10-year C in showed that about one-third of patients received a second arthroplasty after approximately 2 years, with the majority in the contralateral cognate joint. Few patients received > 2 arthroplasties within 10 years. Being a women, having a higher body mass index, and being younger increased the odds of MJA. Postoperative outcomes were slightly negatively affected by MJA., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Background: Little is known about the provision of work-related support for (self-)employed people with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA) by healthcare providers (HCPs) or employers., Objective: This study aims to explore the experiences of (self-)employed people with RA or axSpA regarding work-related support from HCPs and employers in the Netherlands., Methods: This cross-sectional study concerned an online survey for (self-)employed people, aged ≥ 16 years and diagnosed with RA or axSpA. The survey focused on experiences with HCPs and employers' work-related support and included questions on sociodemographic factors, health and work characteristics and work-related problems., Results: The survey was completed by 884 participants, 56% with RA and 44% with axSpA, of whom 65% were employed, 8% self-employed and 27% not employed. In total, 95% (589/617) of (self-)employed participants reported work-related problems. Sixty-five percent of employed and 56% of self-employed participants had discussed these work-related problems with rheumatologists and/or other HCPs. Whereas 69% of employees with their employer. Both employed and self-employed participants reported that work-related advices or actions were more often provided by other HCPs (53%) than rheumatologists (29%). Fifty-six percent of employees reported this work-related support by the employer., Conclusion: This survey among (self-)employed people with RA or axSpA found that the majority reported work-related problems, but only half of them received any work-related support for these problems. Discussion of work-related problems with HCPs was more often reported by employed than self-employed participants. More attention from especially rheumatologists and other HCPs is important to identify and address work-related problems promptly., (© 2024. The Author(s).)

The implementation of proven effective pharmacological and non-pharmacological interventions into routine rheumatology practice is a lengthy and complex process. Bridging this gap between research and practice is crucial. Hybrid implementation effectiveness studies, integrating effectiveness and implementation aspects, emerge as a proactive and innovative solution to shorten the process of translation of proven interventions into clinical practice. This viewpoint provides an overview of the various types of hybrid implementation effectiveness studies including examples from rheumatology research practice, explains their pivotal role in speeding up the implementation of rheumatology research results and concludes with practical recommendations for the conduct of hybrid implementation effectiveness studies., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Poststroke health-related quality of life (HRQOL) is an important outcome that may be influenced by ethnicity., Objective: To compare long-term HRQOL, mental health and healthcare utilization between stroke survivors with a European (EUB) and non-European background (NEUB) in a hospital population., Methods: In this retrospective cohort study patients completed questionnaires 2-5 years after stroke. Assessments included the EuroQol-5D-3L (EQ-5D), Short Form (SF-36, with physical and mental component summary scales, PCS and MCS), Hospital Anxiety and Depression Scale (HADS; scores ≥8 indicate clinically relevant complaints) and a questionnaire on the usage of services from physicians and/or healthcare professionals (HCP) in the past 6 months. Linear and logistic regression analysis was used, adjusted for age, sex, level of education and functional outcome., Results: We included 207 patients (169 EUB, 38 NEUB); mean age 63.8 years (SD 14.4); 60.4 % male; mean follow up 36.3 months (SD 9.9). The EQ-5D and the PCS were higher in EUB versus NEUB patients (42.9 vs 35.4, p < 0.01; 0.76 vs 0.60, p < 0.01). The MCS showed a comparable, non-significant trend. The percentage of patients with HADS depression ≥8 was higher in NEUB patients versus EUB patients (54.3 % vs 29.8 %; p > 0.01). Significantly more NEUB patients had visited two or more physicians in the past six months compared to EUB patients (52.0 % vs 26.0 %; p = 0.01) whereas the use of services from HCP was similar., Conclusions: NEUB stroke patients had worse outcomes regarding HRQOL and depressive symptoms compared to EUB patients. NEUB patients visited more physicians., Competing Interests: Declaration of competing interest S.T. Auwerda reports no disclosures. Y.X. Lee reports no disclosures. K. Jellema reports no disclosures. H.J. Arwert: Is member of advisory board for development of quality criteria in primary care of stroke patients; payments are made to Basalt Rehabilitation. T.P.M. Vliet Vlieland: Abbvie speaker fee (not related to this study)., (Copyright © 2024. Published by Elsevier Inc.)

Objective: To understand (1) what guidance exists to assess the methodological quality of qualitative research; (2) what methods exist to grade levels of evidence from qualitative research to inform recommendations within European Alliance of Associations for Rheumatology (EULAR)., Methods: A systematic literature review was performed in multiple databases including PubMed/Medline, EMBASE, Web of Science, COCHRANE and PsycINFO, from inception to 23 October 2020. Eligible studies included primary articles and guideline documents available in English, describing the: (1) development; (2) application of validated tools (eg, checklists); (3) guidance on assessing methodological quality of qualitative research and (4) guidance on grading levels of qualitative evidence. A narrative synthesis was conducted to identify key similarities between included studies., Results: Of 9073 records retrieved, 51 went through to full-manuscript review, with 15 selected for inclusion. Six articles described methodological tools to assess the quality of qualitative research. The tools evaluated research design, recruitment, ethical rigour, data collection and analysis. Seven articles described one approach, focusing on four key components to determine how much confidence to place in findings from systematic reviews of qualitative research. Two articles focused on grading levels of clinical recommendations based on qualitative evidence; one described a qualitative evidence hierarchy, and another a research pyramid., Conclusion: There is a lack of consensus on the use of tools, checklists and approaches suitable for appraising the methodological quality of qualitative research and the grading of qualitative evidence to inform clinical practice. This work is expected to facilitate the inclusion of qualitative evidence in the process of developing recommendations at EULAR level., Competing Interests: Competing interests: EN has received speaker honoraria/participated in advisory boards for Celltrion, Pfizer, Sanofi, Gilead, Galapagos, AbbVie, Fresenius-Kabi, Lilly and holds research grants from Pfizer and Lilly., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members)., Methods: An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions., Results: In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%)., Conclusion: Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To evaluate the effectiveness of long-term, personalized, supervised exercise therapy on functional ability compared with usual care in people with axial spondyloarthritis (axSpA) and severe functional limitations., Methods: Participants were randomly 1:1 assigned to the intervention(maximal 64 sessions, with 14 additional optional sessions of supervised active exercise therapy(e.g. aerobic and muscle strengthening) with individualized goal-setting, education and self-management regarding physical activity) or usual care(care determined by clinician(s) and participants themselves). Primary end point was the change in the Patient-Specific Complaints activity ranked 1 (PSC1 (0-10)) at 52 weeks. Secondary endpoints were the PSC activities ranked 2 and 3, the Bath Ankylosing Spondylitis Functional Index, 6-min walk test, Patient Reported Outcome Measurement Information System-Physical Function-10 and the Short Form-36 Physical and Mental Component Summary Score (SF-36 PCS and MCS). Statistical comparisons comprised independent student t-tests and linear mixed models, based on intention-to-treat., Results: 214 participants(49% female, age 52 (SD 12) years), were randomized to the intervention (n = 110) or usual care (N = 104) group. In the intervention group 93% started treatment, using on average 40.5 sessions (SD 15.1). At 52 weeks, the difference in change in PSC1 between groups favored the intervention group (mean difference [95% CI]; -1.8 [-2.4 to -1.2]). additionally, all secondary outcomes, except the SF-36 MSC, showed significantly greater improvements in the intervention group with effect sizes ranging from 0.4-0.7., Conclusion: Long-term, supervised exercise therapy proved more effective than usual care in improving functional disability and physical quality of life in people with axSpA and severe functional limitations., Clinical Trial Register Number: Netherlands Trial Register NL8238, included in the International Clinical Trial Registry Platform (ICTRP) (https://trialsearch.who.int/Trial2.aspx?TrialID=NL8238)., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Purpose: Brain injuries (traumatic-/nontraumatic, TBI/nTBI) in young patients may lead to problems e.g., decreased health-related quality of life (HRQoL), and causes family impact. Knowledge regarding the family impact and the relationship with patients' HRQoL over time is scarce. This follow-up study describes family impact/HRQoL and their mutual relationship in young patients (5-24 years) after TBI/nTBI., Materials and Methods: Parents of patients that were referred to outpatient rehabilitation completed the PedsQL™Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL™Generic-core-set-4.0 to assess patients' HRQoL (lower scores: more family impact/worse HRQoL). Questionnaires were completed at the time of referral to rehabilitation (baseline) and one/two years later (T1/T2). Linear-mixed models were used to examine family impact/HRQoL change scores, and repeated-measure correlations (r) to determine longitudinal relationships., Results: Two-hundred-forty-six parents participated at baseline, 72 (at T2), median patient's age at baseline was 14 years (IQR:11-16), and 181 (74%) had TBI. Mean (SD) PedsQL™Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL™Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL™Family-Impact-Module scores remained stable, while PedsQL™Generic-core-set-4.0 scores improved significantly( p  < 0.05). A moderately strong longitudinal correlation was found between family impact&HRQoL ( r  = 0.51)., Conclusions: Family impact does not tend to decrease over time but remained a considerable problem, although patients' HRQoL improved. Next to focusing on patients' HRQoL, it remains important to consider family impact and offer family support throughout rehabilitation.IMPLICATIONS FOR REHABILITATIONThis longitudinal study found that in young patients with traumatic brain injury (TBI) or non-traumatic brain injury (nTBI) referred for rehabilitation there is a considerable impact on the family until two years after referral, whereas the patients' health-related quality of life (HRQoL) improved significantly.Improvements in patients' quality of life status may not automatically lead to a decrease of family impact.Rehabilitation clinicians should monitor the impact on the family over time and provide long-term family support with special attention to parental worrying when needed.Clinicians should be aware that, despite significant differences between the clinical characteristics of patients with TBI and nTBI, the courses of family impact are very similar.

Purpose: To determine the course of adherence to physical activity (PA) recommendation in hip/knee osteoarthritis patients before and after hip/knee arthroplasty (THA/TKA). Moreover, we explored predictors for non-adherence 12 months postoperatively., Materials and Methods: Primary THA/TKA were included in a multicenter observational study. Preoperatively and 6/12 months postoperatively, patients reported engagement in moderate-intensity PA in days/week in the past 6 months (PA-recommendation (≥30 min of moderate-intensity ≥5 days/week)). We included predictors stratified by preoperative adherence: sex, age, BMI, comorbidities, smoking, living/working status, season, mental health, HOOS/KOOS subscales before and 6 months postoperatively, and 6-month adherence., Results: (1005 THA/972 TKA) Preoperatively, 50% of the population adhered. Adherence increased to 59% at 6 and 12 months. After 12 months, most patients remained at their preoperative PA level, 11% of the preoperative adherers decreased, while 20% of the preoperative non-adherers increased their PA level. In all different groups, adherence to the PA recommendation at 6 months was identified as a predictor (OR-range: 0.16-0.29). In addition, BMI was identified as predictor in the THA adherent (OR = 1.07; 95%CI [1.02-1.15]) and TKA non-adherent groups (OR = 1.08; 95%CI [1.03-1.12]). THA non-adherent group not having paid work (OR = 0.53; 95%CI [0.33-0.85]), and in the TKA adherent group, lower KOOS subscale symptoms (OR = 1.03; 95%CI [1.01-1.05]) were associated with non-adherence., Conclusions: Majority of patients remained at their preoperative PA level. Non-adherence at 6 months was highly predictive for 12-month non-adherence.Implications for rehabilitationPhysical activity (PA) is crucial to decrease mortality risk, especially among patients suffering from osteoarthritis, as these patients have the potential to become more physically active after arthroplasty surgery.We found that physical function and pain improved, but 69% of the patients remained at their preoperative PA level, while 11% decreased and 20% increased their PA levels.Using this information shortly after surgery, orthopedic surgeons and other health care professionals can address patients at risk for decreased PA levels and provide PA advice.

Introduction: Hip and knee osteoarthritis (OA) are increasingly common with a significant impact on individuals and society. Non-pharmacological treatments are considered essential to reduce pain and improve function and quality of life. EULAR recommendations for the non-pharmacological core management of hip and knee OA were published in 2013. Given the large number of subsequent studies, an update is needed., Methods: The Standardised Operating Procedures for EULAR recommendations were followed. A multidisciplinary Task Force with 25 members representing 14 European countries was established. The Task Force agreed on an updated search strategy of 11 research questions. The systematic literature review encompassed dates from 1 January 2012 to 27 May 2022. Retrieved evidence was discussed, updated recommendations were formulated, and research and educational agendas were developed., Results: The revised recommendations include two overarching principles and eight evidence-based recommendations including (1) an individualised, multicomponent management plan; (2) information, education and self-management; (3) exercise with adequate tailoring of dosage and progression; (4) mode of exercise delivery; (5) maintenance of healthy weight and weight loss; (6) footwear, walking aids and assistive devices; (7) work-related advice and (8) behaviour change techniques to improve lifestyle. The mean level of agreement on the recommendations ranged between 9.2 and 9.8 (0-10 scale, 10=total agreement). The research agenda highlighted areas related to these interventions including adherence, uptake and impact on work., Conclusions: The 2023 updated recommendations were formulated based on research evidence and expert opinion to guide the optimal management of hip and knee OA., Competing Interests: Competing interests: TPMVV was the Vice president EULAR health professionals 2020–2022 and is part of the EULAR Advocacy Committee 2020–present. MG holds a leadership position in OpenReuma/Spanish Association of Health Professionals in Rheumatology (unpaid). CDM received Grants from Versus Arthritis, MRC, NIHR (paid to Keele University) and is the director of the NIHR School for Primary Care Research. SL received payment as scientific consultant from Arthro Therapeutics AB and received payment from AstraZeneca as a member of DSMB. DC received grants from Fundação para a Ciência e Tecnologia SFRH/BD/148420/2019 and Pfizer (ID 64165707). GZ received payment for expert testimony from Casa di Cura San Francesco, Verona and Support for attending meetings and/or travel from Orthotech and Jtech, payment for participation on a Data Safety Monitoring Board or Advisory Board from VIVENKO for Gruenenthal and Ethos for Angelini and holds other financial interests related to clinical practice as an orthopedic surgeon (performing total joint replacement, arthroscopies and other types of surgeries), either directly from private patients or indirectly from the health system or insurances acting as a private consultant. JEV has received payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events from Lilly Netherlands BV. TG has received paid honoraria for lectures by Abbvie, Novartis, Boehringer Ingelheim, UCB, Berlin-Chemie/A. Menarini Bulgaria, Sandoz and received support for attending meetings by Abbvie, Pfizer and UCB. DW is an International Advisory Board Member of DRFZ (Germany) 2019–current and was the EULAR PARE Chair 2015–2017and an EULAR Vice President representing PARE 2017–2021., (© European Alliance of Associations for Rheumatology, EULAR 2024. Re-use permitted under CC BY-NC-ND. No commercial re-use. No derivatives. See rights and permissions. Published by BMJ on behalf of EULAR.)

This narrative review discusses the importance of rehabilitation in rheumatic and musculoskeletal diseases (RMDs), ultimately aiming to reduce their impact on individuals and society. It specifically emphasizes the need for rehabilitation in inflammatory arthritis (IA), particularly in cases where medical management is insufficient. It acknowledges that the complexity of rehabilitation demands a flexible approach. Thereby, it touches on the various models of rehabilitation, which may include multidisciplinary team care, extended practice models, shared care, remote care, and work rehabilitation. It discusses the challenges in research, practice, and policy implementation. In research, the need for innovative research designs is highlighted, whereas regarding clinical practice the importance of early detection of disability and patient engagement is underlined, as well as the role of telehealth and AI in reshaping the rehabilitation landscape. Financial barriers and work force shortages are identified as challenges that hinder the effective delivery of rehabilitative care. On the policy level, this paper suggests that the allocation of healthcare resources often prioritizes acute conditions over chronic diseases, leading to disparities in care. This paper concludes by emphasizing the critical role of evidence-based rehabilitation in improving the quality of life for people with RMDs, in particular for those with IA, and promoting their healthy aging. It also calls for tailored rehabilitation models and the early identification of persons with rehabilitation needs as future challenges in this field.

Objectives: To compare the effectiveness of longstanding (>52 weeks), supervised exercise therapy with usual care in adults with rheumatoid arthritis (RA) and severe functional limitations., Methods: Participants were randomised 1:1 to the intervention (individualised goal-setting, active exercises, education and self-management regarding physical activity) or usual care. Primary endpoint was the change in the Patient-Specific Complaints activity ranked 1 (PSC1, 0-10) at 52 weeks. Secondary endpoints included the PSC activities ranked 2 and 3 (PSC2, PSC3), Health Assessment Questionnaire-Disability Index (HAQ-DI), Rheumatoid Arthritis Quality of Life Questionnaire (RAQoL), 6-minute walk test (6MWT), Patient Reported Outcome Measurement Information System Physical Function-10 (PROMIS PF-10) and the Short Form-36 Physical and Mental Component Summary Scales (SF-36 PCS and MCS). (Serious) Adverse events (AEs) were recorded. Measurements were done by blinded assessors. Analyses at 52 weeks were based on the intention-to-treat principle., Results: In total, 217 people (90% female, age 58.8 (SD 12.9) years) were randomised (n=104 intervention, n=98 usual care available for analyses). At 52 weeks, the improvement of the PSC1 was significantly larger in the intervention group (mean difference (95% CI) -1.7 (-2.4, -1.0)). Except for the SF-36 MCS, all secondary outcomes showed significantly greater improvements favouring the intervention (PSC2 -1.8 (-2.4, -1.1), PSC3 -1.7 (-2.4, -1.0), PROMIS PF-10 +3.09 (1.80, 4.38), HAQ-DI -0.17 (-0.29, -0.06), RAQoL -2.03 (-3.39, -0.69), SF-36 PCS +3.83 (1.49, 6.17) and 6MWT +56 (38, 75) m). One mild, transient AE occurred in the intervention group., Conclusion: Longstanding, supervised exercise therapy was more effective than usual care in people with RA and severe functional limitations., Trial Registration Number: Netherlands Trial Register (NL8235), included in the International Clinical Trial Registry Platform (https://trialsearch.who.int/Trial2.aspx?TrialID=NL8235)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: To assess the presence of upper extremity pain after stroke over time and the course of its intensity in patients with persistent pain., Materials and Methods: Patients with stroke completed a question on the presence of upper extremity pain (yes/no) and rated its intensity with a visual analogue scale (0-10) at 3, 18, and 30 months after starting multidisciplinary rehabilitation. The presence of upper extremity pain and its intensity over time were analysed with Generalized Estimating Equations models and Linear Mixed Models, respectively., Results: 678 patients were included. The proportions of patients reporting upper extremity pain were 41.8, 36.0, and 32.7% at 3, 18, and 30 months, respectively, with the decline in proportions reaching statistical significance (odds ratio 0.82, 95% confidence interval 0.74-0.92, p  < 0.001). At all time points, in those reporting pain the median intensity was 5.0 (interquartile ranges (IQR) 4.0-7.0 at 3 and 3.0-6.0 at 18 and 30 months). In the 73 patients with persistent pain, there was no significant change in intensity over time., Conclusions: The proportion of patients reporting upper extremity pain after stroke was considerable, despite a significant decrease in 2.5 years. In patients reporting persistent pain, the intensity did not change over time.IMPLICATIONS FOR REHABILITATIONAbout one-third of patients with stroke reported upper extremity pain at 30 months after starting rehabilitation.In patients with stroke who reported persistent upper extremity pain, there was no significant change in pain intensity over time.There is room for improvement of diagnosis and treatment of upper extremity pain in patients with stroke.

Background: Implementation of an eRehabilitation intervention named Fit After Stroke @Home (Fast@home) - including cognitive/physical exercise applications, activity-tracking, psycho-education - after stroke resulted in health-related improvements. This study investigated what worked and why in the implementation., Methods: Implementation activities (information provision, integration of Fast@home, instruction and motivation) were performed for 14 months and evaluated, using the Medical Research Council framework for process evaluations which consists of three evaluation domains (implementation, mechanisms of impact and contextual factors). Implementation activities were evaluated by field notes/surveys/user data, it's mechanisms of impact by surveys and contextual factors by field notes/interviews among 11 professionals. Surveys were conducted among 51 professionals and 73 patients. User data ( n  = 165 patients) were extracted from the eRehabilitation applications., Results: Implementation activities were executed as planned. Of the professionals trained to deliver the intervention (33 of 51), 25 (75.8%) delivered it. Of the 165 patients, 82 (49.7%) were registered for Fast@home, with 54 patient (65.8%) using it. Mechanisms of impact showed that professionals and patients were equally satisfied with implementation activities (median score 7.0 [IQR 6.0-7.75] versus 7.0 [6.0-7.5]), but patients were more satisfied with the intervention (8.0 [IQR 7.0-8.0] versus 5.5 [4.0-7.0]). Guidance by professionals was seen as most impactful for implementation by patients and support of clinical champions and time given for training by professionals. Professionals rated the integration of Fast@home as insufficient. Contextual factors (financial cutbacks and technical setbacks) hampered the implementation., Conclusion: Main improvements of the implementation of eRehabilitation are related to professionals' perceptions of the intervention, integration of eRehabilitation and contextual factors.Implication for rehabilitationTo increase the use of eRehabilitation by patients, patients should be supported by their healthcare professional in their first time use and during the rehabilitation process.To increase the use of eRehabilitation by healthcare professionals, healthcare professionals should be (1) supported by a clinical champion and (2) provided with sufficient time for learning to work and getting familiar with the eRehabilitation program.Integration of eRehabilitation in conventional stroke rehabilitation (optimal blended care) is an important challenge and a prerequisite for the implementation of eRehabilitation in the clinical setting.

The objective of the study is to describe the nature of functional limitations in activities and participation in people with Rheumatoid Arthritis (RA) or axial SpondyloArthritis (axSpA) with severe functional disability. Baseline data from people with RA (n = 206) or axSpA (n = 155) and severe functional disability participating in an exercise trial were used. Their three most limited activities were derived from the Patient Specific Complaint (PSC) instrument and linked to the International Classification of Functioning and Health (ICF). The frequencies of ICF categories were calculated and compared with Activities and Participation items of the ICF Core Sets for RA (32 second-level categories) and Ankylosing Spondylitis (AS) (24 second-level categories). In total 618 and 465 PSC activities were linked to 909 (72 unique in total; 25 unique second-level) and 759 (57 unique in total; 23 unique second-level) ICF categories in RA and axSpA. Taking into account all three prioritized activities, the five most frequent limited activities concerned the ICF chapter "Mobility", and included "Walking" (RA and axSpA 2 categories), "Changing basic body position" (RA and axSpA 1 category), "Stair climbing"(RA) and "Grasping" (RA),"Lifting" (axSpA) and "Maintaining a standing position" (axSpA). In RA, 21/32 (66%) and in axSpA 14/24 (58%) unique second-level categories identified in the prioritized activities are present in the Comprehensive Core Sets. Most limitations of people with RA or axSpA and severe functional disability were seen in the ICF chapter "Mobility". Most of the identified ICF categories were covered by the corresponding items of the ICF RA and AS Core Sets., (© 2023. The Author(s).)