Publications by authors named "Tanja A Stamm"

63 Publications

Suitability for e-health of non-pharmacological interventions in connective tissue diseases: scoping review with a descriptive analysis.

RMD Open 2021 Jul;7(2)

Section for Outcomes Research, Medical University of Vienna, Vienna, Austria

Objective: Non-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding content, feasibility and potential suitability in an e-health setting.

Methods: A literature search was performed in eight different databases in July 2020. The intervention's content was extracted using the 'Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide'. A Sankey diagram and descriptive statistics were used to analyse the data and illustrate the relationships between the interventions.

Results: Of 8198 identified records, 119 papers were eligible. One hundred and four of them (87.4%) were conducted between 2000 and 2020, mainly in the USA (SLE n=24 (21.2%), SSc n=16 (14.2%)), Brazil (SLE n=8 (7.1%), SSc n=5 (4.4%)) and Italy (SLE n=0 (0%), SSc n=12 (10.6%)). Fifty-two studies (SLE n=24 (21.2%), SSc n=28 (24.8%)) used multicomponent interventions. The single interventions were physical exercises (SLE n=16 (14.2%), SSc n=17 (15.0%)), coaching/counselling (SLE n=11 (18.0%), SSc n=0 (0%)) and education (SLE n=2 (1.8%), SSc n=3 (2.7%)). Primary outcomes focused on physical function (SLE n=1 (0.9%), SSc n=15 (13.3%)), mouth opening in SSc (n=4 (5.9%)) and physical capacity (SLE n=2 (1.8%), SSc n=1 (0.9%)). No interventions for mixed connective tissue disease were found.

Conclusion: There was a great variety in the intervention's content due to differences in body structure, activity limitations and participation restrictions in SLE and SSc. These results highlight the need for personalised, multicomponent, non-pharmacological interventions, which could be delivered as e-health interventions.
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http://dx.doi.org/10.1136/rmdopen-2021-001710DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8323400PMC
July 2021

2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis.

Ann Rheum Dis 2021 Oct 7;80(10):1278-1285. Epub 2021 May 7.

National Rheumatoid Arthritis Society, Littlewick Green, UK.

Background: An important but often insufficient aspect of care in people with inflammatory arthritis (IA) is empowering patients to acquire a good understanding of their disease and building their ability to deal effectively with the practical, physical and psychological impacts of it. Self-management skills can be helpful in this regard.

Objectives: To develop recommendations for the implementation of self-management strategies in IA.

Methods: A multidisciplinary taskforce of 18 members from 11 European countries was convened. A systematic review and other supportive information (survey of healthcare professionals (HCPs) and patient organisations) were used to formulate the recommendations.

Results: Three overarching principles and nine recommendations were formulated. These focused on empowering patients to become active partners of the team and to take a more proactive role. The importance of patient education and key self-management interventions such as problem solving, goal setting and cognitive behavioural therapy were highlighted. Role of patient organisations and HCPs in promoting and signposting patients to available resources has been highlighted through the promotion of physical activity, lifestyle advice, support with mental health aspects and ability to remain at work. Digital healthcare is essential in supporting and optimising self-management and the HCPs need to be aware of available resources to signpost patients.

Conclusion: These recommendations support the inclusion of self-management advice and resources in the routine management of people with IA and aim to empower and support patients and encourage a more holistic, patient-centred approach to care which could result in improved patient experience of care and outcomes.
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http://dx.doi.org/10.1136/annrheumdis-2021-220249DOI Listing
October 2021

The methodological quality is insufficient in clinical practice guidelines in the context of COVID-19: systematic review.

J Clin Epidemiol 2021 07 7;135:125-135. Epub 2021 Mar 7.

Cochrane Austria, Department for Evidence-based Medicine and Evaluation, Danube University Krems, Krems an der Donau, Austria; RTI International, Research Triangle Park, NC, USA.

Objectives: The number of published clinical practice guidelines related to COVID-19 has rapidly increased. This study explored if basic methodological standards of guideline development have been met in the published clinical practice guidelines related to COVID-19.

Study Design And Setting: Rapid systematic review from February 1 until April 27, 2020 using MEDLINE [PubMed], CINAHL [Ebsco], Trip and manual search, including all types of healthcare workers providing any kind of healthcare to any patient population in any setting.

Results: There were 1342 titles screened and 188 guidelines included. The highest average AGREE II domain score was 89% for scope and purpose, the lowest for rigor of development (25%). Only eight guidelines (4%) were based on a systematic literature search and a structured consensus process by representative experts (classified as the highest methodological quality). The majority (156; 83%) was solely built on an informal expert consensus. A process for regular updates was described in 27 guidelines (14%). Patients were included in the development of only one guideline.

Conclusion: Despite clear scope, most publications fell short of basic methodological standards of guideline development. Clinicians should use guidelines that include up-to-date information, were informed by stakeholder involvement, and employed rigorous methodologies.
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http://dx.doi.org/10.1016/j.jclinepi.2021.03.005DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7937325PMC
July 2021

EULAR points to consider on pathophysiology and use of immunomodulatory therapies in COVID-19.

Ann Rheum Dis 2021 Feb 5. Epub 2021 Feb 5.

Assistance Publique-Hôpitaux de Paris, Hôpital Bicêtre, INSERM UMR1184, Department of Rheumatology, Université Paris-Saclay, Le Kremlin Bicêtre, France

Objectives: Severe systemic inflammation associated with some stages of COVID-19 and in fatal cases led therapeutic agents developed or used frequently in Rheumatology being at the vanguard of experimental therapeutics strategies. The aim of this project was to elaborate EULAR Points to consider (PtCs) on COVID-19 pathophysiology and immunomodulatory therapies.

Methods: PtCs were developed in accordance with EULAR standard operating procedures for endorsed recommendations, led by an international multidisciplinary Task Force, including rheumatologists, translational immunologists, haematologists, paediatricians, patients and health professionals, based on a systemic literature review up to 15 December 2020. Overarching principles (OPs) and PtCs were formulated and consolidated by formal voting.

Results: Two OPs and fourteen PtCs were developed. OPs highlight the heterogeneous clinical spectrum of SARS-CoV-2 infection and the need of a multifaceted approach to target the different pathophysiological mechanisms. PtCs 1-6 encompass the pathophysiology of SARS-CoV-2 including immune response, endothelial dysfunction and biomarkers. PtCs 7-14 focus on the management of SARS-CoV-2 infection with immunomodulators. There was evidence supporting the use of glucocorticoids, especially dexamethasone, in COVID-19 cases requiring oxygen therapy. No other immunomodulator demonstrated efficacy on mortality to date, with however inconsistent results for tocilizumab. Immunomodulatory therapy was not associated with higher infection rates.

Conclusions: Multifactorial pathophysiological mechanisms, including immune abnormalities, play a key role in COVID-19. The efficacy of glucocorticoids in cases requiring oxygen therapy suggests that immunomodulatory treatment might be effective in COVID-19 subsets. Involvement of rheumatologists, as systemic inflammatory diseases experts, should continue in ongoing clinical trials delineating optimal immunomodulatory therapy utilisation in COVID-19.
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http://dx.doi.org/10.1136/annrheumdis-2020-219724DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7871226PMC
February 2021

Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force.

RMD Open 2021 01;7(1)

Section for Outcomes Research, Centre for Medical Statistics, Informatics and Intelligent Systems, Medical University Vienna, Wien, Austria

Introduction: Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.

Methods: A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still's disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18-35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.

Results: Fifty-three patients (21 with RA/JIA/Still's, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.

Conclusions: Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.
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http://dx.doi.org/10.1136/rmdopen-2020-001517DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7849893PMC
January 2021

2020 EULAR points to consider for the prevention, screening, assessment and management of non-adherence to treatment in people with rheumatic and musculoskeletal diseases for use in clinical practice.

Ann Rheum Dis 2020 Dec 18. Epub 2020 Dec 18.

Instituto de Salud Musculoesquelética (INMUSC), Madrid, Spain.

Background: Non-adherence to treatment could preclude reaching an optimal outcome. Thirty to 80% of patients with rheumatic and musculoskeletal diseases (RMDs) do not adhere to the agreed treatment.

Objectives: The objective was to establish points to consider (PtCs) for the prevention, screening, assessment and management of non-adherence to (non-)pharmacological treatments in people with RMDs.

Methods: An EULAR task force (TF) was established, and the EULAR standardised operating procedures for the development of PtCs were followed. The TF included healthcare providers (HCPs), comprising rheumatologists, nurses, pharmacists, psychologists, physiotherapists, occupational therapists and patient-representatives from 12 European countries. A review of systematic reviews was conducted in advance to support the TF in formulating the PtCs. The level of agreement among the TF was established by anonymous online voting.

Results: Four overarching principles and nine PtCs were formulated. The PtCs reflect the phases of action on non-adherence. HCPs should assess and discuss adherence with patients on a regular basis and support patients to treatment adherence. As adherence is an agreed behaviour, the treatment has to be tailored to the patients' needs. The level of agreement ranged from 9.5 to 9.9 out of 10.

Conclusions: These PtCs can help HCPs to support people with RMDs to be more adherent to the agreed treatment plan. The basic scheme being prevent non-adherence by bonding with the patient and building trust, overcoming structural barriers, assessing in a blame-free environment and tailoring the solution to the problem.
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http://dx.doi.org/10.1136/annrheumdis-2020-218986DOI Listing
December 2020

Prevention, screening, assessing and managing of non-adherent behaviour in people with rheumatic and musculoskeletal diseases: systematic reviews informing the 2020 EULAR points to consider.

RMD Open 2020 11;6(3)

Rheumatology, Aarhus University Hospital, Århus N, Denmark.

Objective: To analyse how non-adherence to prescribed treatments might be prevented, screened, assessed and managed in people with rheumatic and musculoskeletal diseases (RMDs).

Methods: An overview of systematic reviews (SR) was performed in four bibliographic databases. Research questions focused on: (1) effective interventions or strategies, (2) associated factors, (3) impact of shared decision making and effective communication, (4) practical things to prevent non-adherence, (5) effect of non-adherence on outcome, (6) screening and assessment tools and (7) responsible healthcare providers. The methodological quality of the reviews was assessed using AMSTAR-2. The qualitative synthesis focused on results and on the level of evidence attained from the studies included in the reviews.

Results: After reviewing 9908 titles, the overview included 38 SR on medication, 29 on non-pharmacological interventions and 28 on assessment. Content and quality of the included SR was very heterogeneous. The number of factors that may influence adherence exceed 700. Among 53 intervention studies, 54.7% showed a small statistically significant effect on adherence, and all three multicomponent interventions, including different modes of patient education and delivered by a variety of healthcare providers, showed a positive result in adherence to medication. No single assessment provided a comprehensive measure of adherence to either medication or exercise.

Conclusions: The results underscore the complexity of non-adherence, its changing pattern and dependence on multi-level factors, the need to involve all stakeholders in all steps, the absence of a gold standard for screening and the requirement of multi-component interventions to manage it.
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http://dx.doi.org/10.1136/rmdopen-2020-001432DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7856118PMC
November 2020

Influence of COVID-19 pandemic on decisions for the management of people with inflammatory rheumatic and musculoskeletal diseases: a survey among EULAR countries.

Ann Rheum Dis 2020 Nov 6. Epub 2020 Nov 6.

Rheumatology and Immunology, Charite Medical Faculty Berlin, Berlin, Germany.

Objectives: To investigate how the first wave of COVID-19 pandemic influenced decisions of rheumatologists and health professionals in rheumatology regarding the management of patients with inflammatory rheumatic and musculoskeletal diseases (RMDs).

Methods: An English-language questionnaire was developed by a EULAR working group and distributed via national rheumatology societies of EULAR countries, EMEUNET and individual working group members. Responses were collected using an online survey tool. Descriptive statistics were calculated.

Results: We analysed 1286 responses from 35/45 EULAR countries. Due to containment measures, 82% of respondents indicated cancellation/postponement of face-to-face visits of new patients (84% of them offering remote consultation) and 91% of follow-up visits (96% with remote consultation). The majority of respondents (58%) perceived that the interval between symptom onset and first rheumatological consultations was longer during containment restrictions than before. Treatment decisions were frequently postponed (34%), and the majority (74%) of respondents stated that it was less likely to start a biological disease modifying anti-rheumatic drug (DMARD)/targeted synthetic DMARD during the pandemic, mainly because of patients' fear, limited availability of screening procedures and decreased availability of rheumatological services. Use of (hydroxy)chloroquine (HCQ) and tocilizumab (TCZ) for the COVID-19 indication was reported by 47% and 42% of respondents, respectively, leading to a shortage of these drugs for RMDs indications according to 49% and 14% of respondents, respectively.

Conclusion: Measures related to containment of COVID-19 pandemic led to a perceived delay between symptom onset and a first rheumatological visit, postponement of treatment decisions, and shortage of HCQ and TCZ, thereby negatively impacting early treatment and treat-to-target strategies.
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http://dx.doi.org/10.1136/annrheumdis-2020-218697DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7650208PMC
November 2020

Response to: 'Correspondence on 'Changing the outcome measures, changing the results? The urgent need of a specific disease activity score to adult-onset Still's disease'' by Muraviov and Muraviova.

Ann Rheum Dis 2020 Sep 28. Epub 2020 Sep 28.

Department of Clinical Sciences and Applied Biotechnology, University of L'Aquila, L'Aquila, Abruzzo, Italy

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http://dx.doi.org/10.1136/annrheumdis-2020-218868DOI Listing
September 2020

EULAR/eumusc.net standards of care for rheumatoid arthritis: cross-sectional analyses of importance, level of implementation and care gaps experienced by patients and rheumatologists across 35 European countries.

Ann Rheum Dis 2020 11 1;79(11):1423-1431. Epub 2020 Sep 1.

Epidemiology Unit, Italian Society for Rheumatology (SIR), Milan, Italy.

Objective: As part of European League against Rheumatism (EULAR)/European Musculoskeletal Conditions Surveillance and Information Network, 20 user-focused standards of care (SoCs) for rheumatoid arthritis (RA) addressing 16 domains of care were developed. This study aimed to explore gaps in implementation of these SoCs across Europe.

Methods: Two cross-sectional surveys on the importance, level of and barriers (patients only) to implementation of each SoC (0-10, 10 highest) were designed to be conducted among patients and rheumatologists in 50 European countries. Care gaps were calculated as the difference between the actual and maximum possible score for implementation (ie, 10) multiplied by the care importance score, resulting in care gaps (0-100, maximal gap). Factors associated with the problematic care gaps (ie, gap≥30 and importance≥6 and implementation<6) and strong barriers (≥6) were further analysed in multilevel logistic regression models.

Results: Overall, 26 and 31 countries provided data from 1873 patients and 1131 rheumatologists, respectively. 19 out of 20 SoCs were problematic from the perspectives of more than 20% of patients, while this was true for only 10 SoCs for rheumatologists. Rheumatologists in countries with lower gross domestic product and non-European Union countries were more likely to report problematic gaps in 15 of 20 SoCs, while virtually no differences were observed among patients. Lack of relevance of some SoCs (71%) and limited time of professionals (66%) were the most frequent implementation barriers identified by patients.

Conclusions: Many problematic gaps were reported across several essential aspects of RA care. More efforts need to be devoted to implementation of EULAR SoCs.
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http://dx.doi.org/10.1136/annrheumdis-2020-217520DOI Listing
November 2020

Coparenting Intervention for Expectant Parents Affects Relationship Quality: A Pilot Study.

Tohoku J Exp Med 2020 09;252(1):33-43

Department for Psychoanalysis and Psychotherapy, Medical University of Vienna.

Research has shown that the transition to parenthood is a particularly challenging period of life which is often associated with a decline in relationship quality and an increase in mental health problems. Emerging parents often experience difficulties in coping with new tasks and challenges in the relationship, resulting in inadequate mutual support, stress, conflicts and even depressive symptoms. To support expectant parents in establishing an effective and strong coparenting alliance, we have employed an educational coparenting intervention to teach important coparenting skills. The intervention was a non-randomized case-control study with 126 expectant parents. The intervention group participated in a five-session intervention, whereas the control group received an information booklet and had an optional meeting postpartum. The purpose of this study was to ease the transition to parenthood in order to prevent postpartum conflict and depression. Parents in the intervention group (n = 34 couples) showed significantly fewer conflicts postpartum than before (Z = -3.28, p = 0.00), and scored better in postnatal delegated dyadic coping (β = 0.25, p = 0.00, R = 0.32), a form of mutual support. Neither the intervention group (Z = -0.83, p = 0.40) nor the control group (Z = -0.86, p = 0.38) showed a significant increase in depression scores after childbirth. Although conflicts during the transition to parenthood declined and postnatal delegated dyadic coping strengthened, the study design does not allow to draw conclusion on group effects. Nevertheless, the promising results of this pilot intervention are a base for future studies.
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http://dx.doi.org/10.1620/tjem.252.33DOI Listing
September 2020

Changing the outcome measures, changing the results? The urgent need of a specific disease activity score to adult-onset Still's disease.

Ann Rheum Dis 2020 Jul 3. Epub 2020 Jul 3.

Department of Clinical Sciences and Applied Biotechnology, University of L'Aquila, L'Aquila, Abruzzo, Italy

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http://dx.doi.org/10.1136/annrheumdis-2020-218032DOI Listing
July 2020

Development of classification criteria for hand osteoarthritis: comparative analyses of persons with and without hand osteoarthritis.

RMD Open 2020 06;6(2)

Rheumatology, Leiden University Medical Center, Leiden, Netherlands.

Objectives: Further knowledge about typical hand osteoarthritis (OA) characteristics is needed for the development of new classification criteria for hand OA.

Methods: In a cross-sectional multi-centre international study, a convenience sample of patients from primary and secondary/tertiary care with a physician-based hand OA diagnosis (n = 128) were compared with controls with hand complaints due to inflammatory or non-inflammatory conditions (n = 70). We examined whether self-reported, clinical, radiographic and laboratory findings were associated with hand OA using logistic regression analyses. Discrimination between groups was assessed by calculating the area under receiver operating curves (AUC).

Results: Strong associations with hand OA were observed for radiographic osteophytes (OR = 1.62, 95% CI 1.40 to 1.88) and joint space narrowing (JSN) (OR = 1.57, 95% CI 1.36 to 1.82) in the distal interphalangeal (DIP) joints with excellent discrimination (AUC = 0.82 for both). For osteophytes and JSN, we found acceptable discrimination between groups in the proximal interphalangeal joints (AUC = 0.77 and 0.78, respectively), but poorer discrimination in the first carpometacarpal joints (AUC = 0.67 and 0.63, respectively). Painful DIP joints were associated with hand OA, but were less able to discriminate between groups (AUC = 0.67). Age and family history of OA were positively associated with hand OA, whereas negative associations were found for pain, stiffness and soft tissue swelling in metacarpophalangeal joints, pain and marginal erosions in wrists, longer morning stiffness, inflammatory biomarkers and autoantibodies.

Conclusions: Differences in symptoms, clinical findings, radiographic changes and laboratory tests were found in patients with hand OA versus controls. Radiographic OA features, especially in DIP joints, were best suited to discriminate between groups.
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http://dx.doi.org/10.1136/rmdopen-2020-001265DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7425183PMC
June 2020

Response to: 'Understanding bone fragility: theoretical explanation to non-physician health professionals' by Sugiyama.

Ann Rheum Dis 2020 Jun 19. Epub 2020 Jun 19.

Section for Outcomes Research, Medical University of Vienna, Wien, Austria

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http://dx.doi.org/10.1136/annrheumdis-2020-218049DOI Listing
June 2020

EULAR provisional recommendations for the management of rheumatic and musculoskeletal diseases in the context of SARS-CoV-2.

Ann Rheum Dis 2020 07 5;79(7):851-858. Epub 2020 Jun 5.

Division of Rheumatology and Clinical Immunology, Department of Medicine IV, Ludwig Maximilian University of Munich, Munich, Germany.

The provisional EULAR recommendations address several aspects of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus, and the disease caused by SARS-CoV-2, COVID-19 and are meant for patients with rheumatic and musculoskeletal diseases (RMD) and their caregivers. A task force of 20 members was convened by EULAR that met several times by videoconferencing in April 2020. The task force finally agreed on five overarching principles and 13 recommendations covering four generic themes: (1) General measures and prevention of SARS-CoV-2 infection. (2) The management of RMD when local measures of social distancing are in effect. (3) The management of COVID-19 in the context of RMD. (4) The prevention of infections other than SARS-CoV-2. EULAR considers this set of recommendations as a 'living document' and a starting point, which will be updated as soon as promising new developments with potential impact on the care of patients with RMD become available.
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http://dx.doi.org/10.1136/annrheumdis-2020-217877DOI Listing
July 2020

2019 EULAR points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older.

Ann Rheum Dis 2021 01 24;80(1):57-64. Epub 2020 Apr 24.

Section for Outcomes Research, Centre for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Vienna, Austria

Objective: To establish European League Against Rheumatism (EULAR) points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older.

Methods: Points to consider were developed in accordance with EULAR standard operating procedures for EULAR-endorsed recommendations, led by an international multidisciplinary task force, including patient research partners and different health professionals from 10 European countries. Level of evidence and strength of recommendation were determined for each point to consider, and the mean level of agreement among the task force members was calculated.

Results: Two overarching principles and seven points to consider were formulated based on scientific evidence and the expert opinion of the task force. The two overarching principles focus on shared decisions between patients and non-physician health professionals and involvement of different non-physician health professionals in prevention and management of fragility fractures. Four points to consider relate to prevention: identification of patients at risk of fracture, fall risk evaluation, multicomponent interventions to prevent primary fracture and discouragement of smoking and overuse of alcohol. The remaining three focus on management of fragility fractures: exercise and nutritional interventions, the organisation and coordination of multidisciplinary services for post-fracture models of care and adherence to anti-osteoporosis medicines. The mean level of agreement among the task force for the overarching principles and the points to consider ranged between 8.4 and 9.6.

Conclusion: These first EULAR points to consider for non-physician health professionals to prevent and manage fragility fractures in adults 50 years or older serve to guide healthcare practice and education.
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http://dx.doi.org/10.1136/annrheumdis-2020-216931DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7788058PMC
January 2021

Prevention and management of osteoporotic fractures by non-physician health professionals: a systematic literature review to inform EULAR points to consider.

RMD Open 2020 01;6(1)

Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Vienna, Austria

Objective: To perform a systematic literature review (SLR) about the effect of non-pharmacological interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures.

Methods: Eight clinical questions based on two criteria guided the SLR: (1) adults≥50 years at high risk of osteoporotic fracture and (2) interventions delivered by non-physician health professionals to prevent and manage osteoporotic fractures. Interventions focused on diagnostic procedures to identify risk of falling, therapeutic approaches and implementation strategies. Outcomes included fractures, falls, risk of falling and change in bone mineral density. Systematic reviews and randomised controlled trials were preferentially selected. Data were synthesised using a qualitative descriptive approach.

Results: Of 15 917 records, 43 articles were included. Studies were clinically and methodologically diverse. We identified sufficient evidence that structured exercise, incorporating progressive resistance training delivered to people who had undergone hip fracture surgery, and multicomponent exercise, delivered to people at risk of primary fracture, reduced risk of falling. The effectiveness of multidisciplinary fracture liaison services in reducing refracture rate was confirmed. There was insufficient evidence found to support the effectiveness of nutrients and falls prevention programmes in this patient population.

Conclusion: Despite study heterogeneity, our SLR showed beneficial effects of some interventions delivered by non-physician health professionals and the positive impact of multidisciplinary team working and patient educational approaches to prevent and manage osteoporotic fractures. These results informed a EULAR taskforce that developed points to consider for non-physician health professionals to prevent and manage osteoporotic fractures.
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http://dx.doi.org/10.1136/rmdopen-2019-001143DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7059534PMC
January 2020

Testing different thresholds for patient global assessment in defining remission for rheumatoid arthritis: are the current ACR/EULAR Boolean criteria optimal?

Ann Rheum Dis 2020 04 5;79(4):445-452. Epub 2020 Feb 5.

Department of Internal Medicine 3, Division of Rheumatology, Medical University of Vienna, Wien, Austria

Objectives: This study aimed to evaluate different patient global assessment (PGA) cut-offs required in the American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) Boolean remission definition for their utility in rheumatoid arthritis (RA).

Methods: We used data from six randomised controlled trials in early and established RA. We increased the threshold for the 0-10 score for PGA gradually from 1 to 3 in steps of 0.5 (Boolean1.5 to Boolean3.0) and omitted PGA completely (BooleanX) at 6 and 12 months. Agreement with the index-based (Simplified Disease Activity Index (SDAI)) remission definition was analysed using kappa, recursive partitioning (classification and regression tree (CART)) and receiver operating characteristics. The impact of achieving each definition on functional and radiographic outcomes after 1 year was explored.

Results: Data from 1680 patients with early RA and 920 patients with established RA were included. The proportion of patients achieving Boolean remission increased with higher thresholds for PGA from 12.4% to 19.7% in early and 5.9% to 12.3% in established RA at 6 months. Best agreement with SDAI remission occurred at PGA cut-offs of 1.5 and 2.0, while agreement decreased with higher PGA (CART: optimal agreement at PGA≤1.6 cm; sensitivity of PGA≤1.5 95%). Changing PGA thresholds at 6 months did not affect radiographic progression at 12 months (mean ꙙsmTSS for Boolean, 1.5, 2.0, 2.5, 3.0, BooleanX: 0.35±5.4, 0.38±5.14, 0.41±5.1, 0.37±4.9, 0.34±4.9, 0.27±4.7). However, the proportion attaining HAQ≤0.5 was 90.2%, 87.9%, 85.2%, 81.1%, 80.7% and 73.1% for the respective Boolean definitions.

Conclusion: Increasing the PGA cut-off to 1.5 cm would provide high consistency between Boolean with the index-based remission; the integer cut-off of 2.0 cm performed similarly.
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http://dx.doi.org/10.1136/annrheumdis-2019-216529DOI Listing
April 2020

Rasch model of the child perceptions questionnaire in multi-country data.

J Dent 2020 02 19;93:103267. Epub 2019 Dec 19.

Department of Paediatric Dentistry, School of Dentistry, Medical University of Vienna, Sensengasse 2a, 1090, Vienna, Austria.

Objective: To be fit-for-purpose, oral health-related quality of life instruments must possess a range of psychometric properties which had not been fully examined in the 16-item Short Form Child Perceptions Questionnaire for children aged 11 to 14 years (CPQ ISF-16). We used advanced statistical approaches to determine the CPQ's measurement accuracy, precision, invariance and dimensionality and analyzed whether age range could be extended from 8 to 15 years.

Methods: Fit to the Rasch model was examined in 6648 8-to-15-year-olds from Australia, New Zealand, Brunei, Cambodia, Hong Kong, Malaysia, Thailand, Germany, United Kingdom, Brazil and Mexico.

Results: In all but two items, the initial five answer options were reduced to three or four, to increase precision of the children's selection. Items 10 (Shy/embarrassed) and 11 (Concerned what others think) showed an 'extra' dependency between item scores beyond the relationship related to the underlying latent construct represented by the instrument, and so were deleted. Without these two items, the CPQ was unidimensional. The three oral symptoms items (4 Food stuck in teeth, 3 Bad breath and 1 Pain) were required for a sufficient person-item coverage. In three out of 14 items (21 %), Europe and South America showed regional differences in the patterns of how the answer options were selected. No differential item functioning was detected for age.

Conclusion: Except for a few modifications, the present analysis supports the combination of items, the cross-cultural validity of the CPQ with 14 items and the extension of the age range from 8 to 15 years.

Clinical Significance: The valid, reliable, shortened and age-extended version of the CPQ resulting from this study should be used in routine care and clinical research. Less items and a wider age range increase its usability. Symptoms items are needed to precisely differentiate between children with higher and lower quality of life.
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http://dx.doi.org/10.1016/j.jdent.2019.103267DOI Listing
February 2020

Towards a nationwide implementation of a standardized nutrition and dietetics terminology in clinical practice: a pre-implementation focus group study including a pretest and using the consolidated framework for implementation research.

BMC Health Serv Res 2019 Nov 29;19(1):920. Epub 2019 Nov 29.

Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Spitalgasse 23, 1090, Vienna, Austria.

Background & Aims: In order to assure high quality of nutrition and dietetic care as well as research, the implementation of a standardized terminology, such as the World Health Organization (WHO) International Classification of Functioning, Disability and Health for Dietetics (ICF-Dietetics) is indispensable. The aim of this study was to explore the clinical practicability and applicability of the ICF-Dietetics in the field of nutrition and dietetic practice prior to the implementation in order to develop criteria (points to consider) for a targeted implementation strategy.

Methods: A focus group study including a pretest of the ICF-Dietetics was conducted. Subsequently, facilitators and barriers for a nationwide implementation of the ICF-Dietetics in clinical nutrition and dietetic practice were identified and linked to interventions (combining theory-based and group-based approach) using the Consolidated Framework of Implementation Research (CFIR) to organize and represent data and summarized in a logic model.

Results: In the pretest 55 clinical documentations which consisted of 248 different ICF-Dietetics categories were received. In four focus groups with 22 health professionals, 66 relevant higher-level themes and implementation strategy criteria (points to consider) were identified. These themes referred to all five domains of the CFIR, namely intervention characteristics, inner setting, outer setting, characteristics of individuals and implementation process and contained important barriers and facilitators that were linked to six implementation objectives as well as six context requirements and five main actors.

Conclusions: This study provides facilitators and barriers to be addressed when implementing the ICF-Dietetics in clinical practice and shows potential interventions based on this analysis. A nationwide implementation was mainly seen as a great advantage for enhancing quality and continuity of care and for providing comparable data. However, it requires further refinements and a multifaceted implementation strategy where the engagement of leadership of institutions plays a crucial role. These results have provided a foundation for a targeted implementation strategy to increase the success, reproducibility and comparability.
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http://dx.doi.org/10.1186/s12913-019-4600-5DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6884883PMC
November 2019

Treatment Effects of Bisphosphonates and Denosumab on Survival and Refracture from Real-World Data of Hip-Fractured Patients.

Calcif Tissue Int 2019 Dec 17;105(6):630-641. Epub 2019 Sep 17.

Ludwig Boltzmann Institute of Osteology, Hanusch Hospital of the WGKK and AUVA Trauma Center, 1st Medical Department at Hanusch Hospital, Heinrich Collin Str. 30, 1140, Vienna, Austria.

We examined differences in patients' survival after hip fracture (HF) and risk for subsequent HF among patients treated with oral and intravenous bisphosphonates (oBPs, iBPs), denosumab (DMAB), and patients without therapy. We used data from all patients in Austria aged ≥ 50 who sustained a HF between 2012 and 2017 and were followed for a subsequent HF and all-cause mortality until 2017. Antiosteoporotic treatment-naïve patients, who were incident users of BPs and DMAB, were eligible for propensity score matching 1:1 to obtain comparable user groups. We applied competing risk approach and calculated cumulative incidence functions and subdistribution-hazards for refracture. Cox regression models were applied for mortality risk. A total of 54,145 hip-fractured patients were observed (1919 oBPs; 1870 iBPs; 555 DMAB users; and 42,795 untreated patients were included in the matched sets) and followed up for a median (interquartile range) of 22.6 months (26.2). Patients treated with antiresorptive medications had significantly longer survival time than patients without treatment. Receiving treatment significantly decreased a hazard of dying only for women by 17% for iBPs (HR 0.83, 95% CI 0.71-0.98, p = 0.023). For DMAB and oBPs, the results were not statistically significant. Higher risk of a subsequent HF was observed in women on DMAB (SHR 1.77, 95% CI 1.08-2.91) and on iBP (SHR 1.81, 95% CI 1.35-2.41), and in men on oBPs (SHR 2.89, 95% CI 1.58-5.30). Patients who were treated with antiresorptive medications after HF had longer survival than patients without treatment, highlighting the importance of initiation of antiresorptive treatment after HF.
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http://dx.doi.org/10.1007/s00223-019-00611-3DOI Listing
December 2019

Current status of use of big data and artificial intelligence in RMDs: a systematic literature review informing EULAR recommendations.

RMD Open 2019 18;5(2):e001004. Epub 2019 Jul 18.

Institut Pierre Louis d'Epidémiologie et de Santé Publique (iPLESP), UMR S 1136, Sorbonne Universite, Paris, France.

Objective: To assess the current use of big data and artificial intelligence (AI) in the field of rheumatic and musculoskeletal diseases (RMDs).

Methods: A systematic literature review was performed in PubMed MEDLINE in November 2018, with key words referring to big data, AI and RMDs. All original reports published in English were analysed. A mirror literature review was also performed outside of RMDs on the same number of articles. The number of data analysed, data sources and statistical methods used (traditional statistics, AI or both) were collected. The analysis compared findings within and beyond the field of RMDs.

Results: Of 567 articles relating to RMDs, 55 met the inclusion criteria and were analysed, as well as 55 articles in other medical fields. The mean number of data points was 746 million (range 2000-5 billion) in RMDs, and 9.1 billion (range 100 000-200 billion) outside of RMDs. Data sources were varied: in RMDs, 26 (47%) were clinical, 8 (15%) biological and 16 (29%) radiological. Both traditional and AI methods were used to analyse big data (respectively, 10 (18%) and 45 (82%) in RMDs and 8 (15%) and 47 (85%) out of RMDs). Machine learning represented 97% of AI methods in RMDs and among these methods, the most represented was artificial neural network (20/44 articles in RMDs).

Conclusions: Big data sources and types are varied within the field of RMDs, and methods used to analyse big data were heterogeneous. These findings will inform a European League Against Rheumatism taskforce on big data in RMDs.
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http://dx.doi.org/10.1136/rmdopen-2019-001004DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6668041PMC
April 2020

Outcomes research in non-specific low back pain : Knowledge transfer in clinical practice.

Wien Klin Wochenschr 2019 Nov 24;131(21-22):550-557. Epub 2019 Jun 24.

Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Spitalgasse 23, 1090, Vienna, Austria.

Objective: The aims of this article are to provide an overview and discuss current concepts and future trends in outcomes research in non-specific low back pain, specifically considering the perspective of patients, patient-reported outcomes and outcome measures as well as to facilitate knowledge transfer into clinical practice.

Review Strategy: The breadth of this work and the required brevity of this article were not amenable to a formal approach, such as a systematic literature review or a formal scoping review. Literature sources were identified through medical databases but different sources of information and of various methodologies were also included. Furthermore, outcomes meaningful for patients and examples of outcome measures that are applicable in clinical practice were extracted. Areas for future research were identified and discussed.

Results: Patient-reported outcomes and outcome measures are essential in patient-centered care. The assessment of the patients' perspective is important to ensure motivation, active involvement, self-management and adherence, especially in non-pharmacological interventions for low back pain. To facilitate the use of outcome measurements for low back pain in clinical practice, future studies should focus on a clinically feasible index, which includes patient-reported as well as clinician-reported or performance-based variables. Relationships between different types of outcomes and outcome measures as well as resource and outcome-based healthcare constitute important topics for future research. New digital technologies can support continuous outcome measurement and might enable new patient-driven models of care.

Conclusion: Active patient involvement is an essential part of non-pharmacological treatment in low back pain and needs to be considered in terms of outcomes and outcome measurement.
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http://dx.doi.org/10.1007/s00508-019-1523-4DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6851208PMC
November 2019

EULAR points to consider for the use of big data in rheumatic and musculoskeletal diseases.

Ann Rheum Dis 2020 01 22;79(1):69-76. Epub 2019 Jun 22.

Dept of Rheumatology, Clinical Immunology and Laboratory of Translational Immunology, Universitair Medisch Centrum Utrecht, Utrecht, The Netherlands.

Background: Tremendous opportunities for health research have been unlocked by the recent expansion of big data and artificial intelligence. However, this is an emergent area where recommendations for optimal use and implementation are needed. The objective of these European League Against Rheumatism (EULAR) points to consider is to guide the collection, analysis and use of big data in rheumatic and musculoskeletal disorders (RMDs).

Methods: A multidisciplinary task force of 14 international experts was assembled with expertise from a range of disciplines including computer science and artificial intelligence. Based on a literature review of the current status of big data in RMDs and in other fields of medicine, points to consider were formulated. Levels of evidence and strengths of recommendations were allocated and mean levels of agreement of the task force members were calculated.

Results: Three overarching principles and 10 points to consider were formulated. The overarching principles address ethical and general principles for dealing with big data in RMDs. The points to consider cover aspects of data sources and data collection, privacy by design, data platforms, data sharing and data analyses, in particular through artificial intelligence and machine learning. Furthermore, the points to consider state that big data is a moving field in need of adequate reporting of methods and benchmarking, careful data interpretation and implementation in clinical practice.

Conclusion: These EULAR points to consider discuss essential issues and provide a framework for the use of big data in RMDs.
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http://dx.doi.org/10.1136/annrheumdis-2019-215694DOI Listing
January 2020

Workforce requirements in rheumatology: a systematic literature review informing the development of a workforce prediction risk of bias tool and the EULAR points to consider.

RMD Open 2018 5;4(2):e000756. Epub 2018 Dec 5.

Department of Rheumatology, Leiden University Medical Centre, Leiden, and Zuyderland Medical Center, Heerlen, The Netherlands.

Objective: To summarise the available information on physician workforce modelling, to develop a rheumatology workforce prediction risk of bias tool and to apply it to existing studies in rheumatology.

Methods: A systematic literature review (SLR) was performed in key electronic databases (1946-2017) comprising an update of an SLR in rheumatology and a hierarchical SLR in other medical fields. Data on the type of workforce prediction models and the factors considered in the models were extracted. Key general as well as specific need/demand and supply factors for workforce calculation in rheumatology were identified. The workforce prediction risk of bias tool was developed and applied to existing workforce studies in rheumatology.

Results: In total, 14 studies in rheumatology and 10 studies in other medical fields were included. Studies used a variety of prediction models based on a heterogeneous set of need/demand and/or supply factors. Only two studies attempted empirical validation of the prediction quality of the model. Based on evidence and consensus, the newly developed risk of bias tool includes 21 factors (general, need/demand and supply). The majority of studies revealed high or moderate risk of bias for most of the factors.

Conclusions: The existing evidence on workforce prediction in rheumatology is scarce, heterogeneous and at moderate or high risk of bias. The new risk of bias tool should enable future evaluation of workforce prediction studies. This review informs the European League Against Rheumatism points to consider for the conduction of workforce requirement studies in rheumatology.
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http://dx.doi.org/10.1136/rmdopen-2018-000756DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6336097PMC
December 2018

EULAR 'points to consider' for the conduction of workforce requirement studies in rheumatology.

RMD Open 2018 5;4(2):e000780. Epub 2018 Dec 5.

Department of Rheumatology and Clinical Immunology, Charitè University Hospital, Berlin, Germany.

Objective: Current methods used for forecasting workforce requirements in rheumatology are disparate, as are the parameters incorporated into workforce projection studies. The objective of these European League Against Rheumatism (EULAR points to consider (PTC) is to guide future workforce studies in adult rheumatology in order to produce valid and reliable manpower estimates.

Methods: The EULAR Standardised Operating Procedures were followed. A multidisciplinary task force with experts including patients with rheumatic diseases from 11 EULAR countries and the USA was assembled. A systematic literature review (SLR) was conducted to retrieve workforce models in rheumatology and other medical fields. PTC were based on expert opinion informed by the SLR, followed by group discussions with consensus obtained through informal voting. The level of agreement with the PTC was voted anonymously.

Results: A total of 10 PTC were formulated. The task force recommends models integrating supply (=workforce available in rheumatology), demand (=health services requested by the population) and need (=health services that are considered appropriate to serve the population). In general, projections of workforce requirements should consider all factors relevant for current and future workload in rheumatology inside and outside of direct patient care. Forecasts of workforce supply should consider demography and attrition of rheumatologists, as well as the effects of new developments in healthcare. Predictions of future need/demand should take demographic, sociocultural and epidemiological development of the population into account.

Conclusion: These EULAR-endorsed PTC will provide guidance on the methodology and the parameters to be applied in future national and international workforce requirement studies in rheumatology.
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http://dx.doi.org/10.1136/rmdopen-2018-000780DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6336096PMC
December 2018

I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis.

Arthritis Care Res (Hoboken) 2020 03;72(3):360-368

Medical University of Vienna and Ludwig Boltzmann Cluster Arthritis and Rehabilitation, Vienna, Austria.

Objective: Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs.

Methods: A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals were interviewed who underwent predictive biomarker testing for RA and had a positive test result but no diagnosis of any inflammatory joint disease. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool as a frame of reference.

Results: Thematic saturation was reached in 34 individuals (76% female, 24 [71%] with arthralgia, and 10 [29%] asymptomatic individuals). Thirty-seven codes were summarized into 4 themes: 1) decision-making around whether to undergo initial predictive testing, 2) willingness to consider further predictive tests, and/or 3) preventive interventions, including medication, and 4) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, patient-understandable information.

Conclusion: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education.
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http://dx.doi.org/10.1002/acr.23841DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7064954PMC
March 2020

Functional consultation and exercises improve grip strength in osteoarthritis of the hand - a randomised controlled trial.

Arthritis Res Ther 2018 Nov 9;20(1):253. Epub 2018 Nov 9.

Section for Outcomes Research, Center for Medical Statistics, Informatics, and Intelligent Systems, Medical University of Vienna, Spitalgasse 23, 1090, Vienna, Austria.

Background: Evidence for non-pharmacological interventions in hand osteoarthritis is promising but still scarce. Combined interventions are most likely to best cover the clinical needs of patients with hand osteoarthritis (OA). The aim of this study was to evaluate the effect of a combined, interdisciplinary intervention feasible in both primary and specialist care compared to routine care plus placebo in patients with hand OA.

Methods: This was a randomised, controlled 2-month trial with a blinded assessor. In the combined-intervention group, rheumatology-trained health professionals from different disciplines delivered a one-session individual intervention with detailed information on functioning, activities of daily living, physical activity, nutrition, assistive devices, instructions on pain management and exercises. Telephone follow up was performed after 4 weeks. The primary outcome was grip strength after 8 weeks. Secondary outcomes were self-reported pain, satisfaction with treatment, health status, two of the Jebsen-Taylor Hand Function subtests and the total score of the Australian/Canadian Hand Osteoarthritis Index (AUSCAN). Statistical significance was calculated by Student's t test or the Mann-Whitney U test depending on data distribution. Binominal logistic regression models were fitted, with the primary outcome being the dependent and the group allocation being the independent variable.

Results: There were 151 participating patients (74 in the combined-intervention and 77 in the routine-care-plus-placebo group) with 2-month follow-up attendance of 84% (n = 128). Grip strength significantly increased in the combined-intervention group and decreased in the routine-care group (dominant hand, mean 0.03 bar (SD 0.11) versus - 0.03 (SD 0.13), p value = 0.001, baseline corrected values) after 8 weeks.

Conclusion: The combined one-session individual intervention significantly improved grip strength and self-reported satisfaction with treatment in patients with hand OA. It can be delivered by different rheumatology-trained health professionals and is thus also feasible in primary care.

Trial Registration: ISRCTN registry, ISRCTN62513257 . Registered on 17 May 2012.
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http://dx.doi.org/10.1186/s13075-018-1747-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6235228PMC
November 2018

2018 update of the EULAR recommendations for the management of hand osteoarthritis.

Ann Rheum Dis 2019 01 28;78(1):16-24. Epub 2018 Aug 28.

Instituto de Salud Musculoesquelética, Madrid, Spain.

Since publication of the European League Against Rheumatism (EULAR) recommendations for management of hand osteoarthritis (OA) in 2007 new evidence has emerged. The aim was to update these recommendations. EULAR standardised operating procedures were followed. A systematic literature review was performed, collecting the evidence regarding all non-pharmacological, pharmacological and surgical treatment options for hand OA published to date. Based on the evidence and expert opinion from an international task force of 19 physicians, healthcare professionals and patients from 10 European countries formulated overarching principles and recommendations. Level of evidence, grade of recommendation and level of agreement were allocated to each statement. Five overarching principles and 10 recommendations were agreed on. The overarching principles cover treatment goals, information provision, individualisation of treatment, shared decision-making and the need to consider multidisciplinary and multimodal (non-pharmacological, pharmacological, surgical) treatment approaches. Recommendations 1-3 cover different non-pharmacological treatment options (education, assistive devices, exercises and orthoses). Recommendations 4-8 describe the role of different pharmacological treatments, including topical treatments (preferred over systemic treatments, topical non-steroidal anti-inflammatory drugs (NSAIDs) being first-line choice), oral analgesics (particularly NSAIDs to be considered for symptom relief for a limited duration), chondroitin sulfate (for symptom relief), intra-articular glucocorticoids (generally not recommended, consider for painful interphalangeal OA) and conventional/biological disease-modifying antirheumatic drugs (discouraged). Considerations for surgery are described in recommendation 9. The last recommendation relates to follow-up. The presented EULAR recommendations provide up-to-date guidance on the management of hand OA, based on expert opinion and research evidence.
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http://dx.doi.org/10.1136/annrheumdis-2018-213826DOI Listing
January 2019

Initial validation and results of the Symptoms in Persons At Risk of Rheumatoid Arthritis (SPARRA) questionnaire: a EULAR project.

RMD Open 2018 21;4(1):e000641. Epub 2018 May 21.

Amsterdam Rheumatology and Immunology Center, Reade, Amsterdam, The Netherlands.

Objectives: To describe the development and assess the psychometric properties of the novel 'Symptoms in Persons At Risk of Rheumatoid Arthritis' (SPARRA) questionnaire in individuals at risk of rheumatoid arthritis (RA) and to quantify their symptoms.

Methods: The questionnaire items were derived from a qualitative study in patients with seropositive arthralgia. The questionnaire was administered to 219 individuals at risk of RA on the basis of symptoms or autoantibody positivity: 74% rheumatoid factor and/or anticitrullinated protein antibodies positive, 26% seronegative. Validity, reliability and responsiveness were assessed. Eighteen first degree relatives (FDR) of patients with RA were used for comparison.

Results: Face and content validity were high. The test-retest showed good agreement and reliability (1 week and 6 months). Overall, construct validity was low to moderate, with higher values for concurrent validity, suggesting that some questions reflect symptom content not captured with regular Visual Analogue Scale pain/well-being. Responsiveness was low (small subgroup). Finally, the burden of symptoms in both seronegative and seropositive at risk individuals was high, with pain, stiffness and fatigue being the most common ones with a major impact on daily functioning. The FDR cohort (mostly healthy individuals) showed a lower burden of symptoms; however, the distribution of symptoms was similar.

Conclusions: The SPARRA questionnaire has good psychometric properties and can add information to currently available clinical measures in individuals at risk of RA. The studied group had a high burden and impact of symptoms. Future studies should evaluate whether SPARRA data can improve the prediction of RA in at risk individuals.
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http://dx.doi.org/10.1136/rmdopen-2017-000641DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5976102PMC
May 2018
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