Can rheumatologists unequivocally diagnose axial spondyloarthritis in patients with chronic back pain of less than 2 years duration? Primary outcome of the 2-year SPondyloArthritis Caught Early (SPACE) cohort.

OBJECTIVES: To investigate the prevalence of axial spondyloarthritis (axSpA) in patients with chronic back pain (CBP) of less than 2 years (2y) duration referred to the rheumatologist, the development of diagnosis over time, and patient characteristics of those developing definite (d-)axSpA over 2y. METHODS: We analysed the 2y data from SPondyloArthritis Caught Early, a European cohort of patients (<45 years) with CBP (≥3 months, ≤2y) of unknown origin. The diagnostic workup comprised evaluation of clinical SpA features, acute phase reactants, HLA-B27, radiographs and MRI (sacroiliac joints and spine), with repeated assessments. At each visit (baseline, 3 months, 1y and 2y), rheumatologists reported a diagnosis of axSpA or non-axSpA with level of confidence (LoC; 0-not confident at all to 10-very confident). MAIN OUTCOME: axSpA diagnosis with LoC≥7 (d-axSpA) at 2y. RESULTS: In 552 patients with CBP, d-axSpA was diagnosed in 175 (32%) at baseline and 165 (30%) at 2y. Baseline diagnosis remained rather stable: at 2y, baseline d-axSpA was revised in 5% of patients, while 8% 'gained' d-axSpA. Diagnostic uncertainty persisted in 30%. HLA-B27+ and baseline sacroiliitis imaging discriminated best 2y-d-axSpA versus 2y-d-non-axSpA patients. Good response to non-steroidal anti-inflammatory drugs and MRI-sacroiliitis most frequently developed over follow-up in patients with a new d-axSpA diagnosis. Of the patients who developed MRI-sacroiliitis, 7/8 were HLA-B27+ and 5/8 male. CONCLUSION: A diagnosis of d-axSpA can be reliably made in nearly one-third of patients with CBP referred to the rheumatologist, but diagnostic uncertainty may persist in 5%-30% after 2y. Repeated assessments yield is modest, but repeating MRI may be worthwhile in male HLA-B27+ patients.

Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica.

OBJECTIVES: To develop treat-to-target (T2T) recommendations in giant cell arteritis (GCA) and polymyalgia rheumatica (PMR). METHODS: A systematic literature review was conducted to retrieve data on treatment targets and outcomes in GCA/PMR as well as to identify the evidence for the effectiveness of a T2T-based management approach in these diseases. Based on evidence and expert opinion, the task force (29 participants from 10 countries consisting of physicians, a healthcare professional and a patient) developed recommendations, with consensus obtained through voting. The final level of agreement was provided anonymously. RESULTS: Five overarching principles and six-specific recommendations were formulated. Management of GCA and PMR should be based on shared decisions between patient and physician recognising the need for urgent treatment of GCA to avoid ischaemic complications, and it should aim at maximising health-related quality of life in both diseases. The treatment targets are achievement and maintenance of remission, as well as prevention of tissue ischaemia and vascular damage. Comorbidities need to be considered when assessing disease activity and selecting treatment. CONCLUSION: These are the first T2T recommendations for GCA and PMR. Treatment targets, as well as strategies to assess, achieve and maintain these targets have been defined. The research agenda highlights the gaps in evidence and the need for future research.

Definition of rheumatoid arthritis flare based on SDAI and CDAI.

OBJECTIVE: To develop and validate definitions for disease flares in rheumatoid arthritis (RA) based on the quantitative Simplified and Clinical Disease Activity Indices (SDAI, CDAI). METHODS: We analysed RA treatment courses from the Norwegian disease-modifying antirheumatic drug registry (NOR-DMARD) and the Vienna RA cohort. In a receiver operating curve analysis, we determined flare definitions for absolute changes in SDAI and CDAI based on a semiquantitative patient anchor. NOR-DMARD was sampled into an 80%-training cohort for cut point derivation and a 20%-test cohort for internal validation. The definitions were then externally validated in the independent Vienna RA cohort and tested regarding their performance on longitudinal, content, face, and construct validity. RESULTS: We analysed 4256 treatment courses from NOR-DMARD and 2557 from the Vienna RA cohort. The preliminary definitions for absolute changes in SDAI and CDAI for flare are an increase of 4.7 and 4.5, respectively. The definitions performed well in the test and external validation cohorts, and showed clinical face and construct validity, as flares significantly impact both functional ( ∆ Health Assessment Questionnaire flare vs no-flare +0.43; p<0.001) and structural ( ∆ modified Sharp Score 43% higher after flare; p<0.001) disease outcomes, and reflect consistent worsening across all disease core sets, both patient reported and objective. CONCLUSION: We here provide novel definitions for flare in RA based on SDAI and CDAI, validated in two large independent real-world cohorts. In times of highly effective medications for RA, and consideration of their tapering, these definitions will be useful for guiding decision making in clinical practice and designing clinical trials.

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners.

BACKGROUND: Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. METHODS: The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analysed descriptively, and principles of thematic content analysis was applied to qualitative data. RESULTS: Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs ranged from research partners to patient advocates, advisors and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers. Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs) and the presence of a PRP coordinator. CONCLUSION: This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP-researcher collaboration based on scientific evidence.

Instrument selection for the ASAS core outcome set for axial spondyloarthritis.

OBJECTIVES: To define the instruments for the Assessment of SpondyloArthritis international Society-Outcomes Measures in Rheumatology (ASAS-OMERACT) core domain set for axial spondyloarthritis (axSpA). METHODS: An international working group representing key stakeholders selected the core outcome instruments following a predefined process: (1) identifying candidate instruments using a systematic literature review; (2) reducing the list of candidate instruments by the working group, (3) assessing the instruments' psychometric properties following OMERACT filter 2.2, (4) selection of the core instruments by the working group and (5) voting and endorsement by ASAS. RESULTS: The updated core set for axSpA includes seven instruments for the domains that are mandatory for all trials: Ankylosing Spondylitis Disease Activity Score and Numerical Rate Scale (NRS) patient global assessment of disease activity, NRS total back pain, average NRS of duration and severity of morning stiffness, NRS fatigue, Bath Ankylosing Spondylitis Function Index and ASAS Health Index. There are 9 additional instruments considered mandatory for disease-modifying antirheumatic drugs (DMARDs) trials: MRI activity Spondyloarthritis Research Consortium of Canada (SPARCC) sacroiliac joints and SPARCC spine, uveitis, inflammatory bowel disease and psoriasis assessed as recommended by ASAS, 44 swollen joint count, Maastricht Ankylosing Spondylitis Enthesitis Score, dactylitis count and modified Stoke Ankylosing Spondylitis Spinal Score. The imaging outcomes are considered mandatory to be included in at least one trial for a drug tested for properties of DMARD. Furthermore, 11 additional instruments were also endorsed by ASAS, which can be used in axSpA trials on top of the core instruments. CONCLUSIONS: The selection of the instruments for the ASAS-OMERACT core domain set completes the update of the core outcome set for axSpA, which should be used in all trials.

Points to consider: EULAR-UEMS standards for the training of European rheumatologists.

BACKGROUND: Postgraduate rheumatology training programmes are already established at a national level in most European countries. However, previous work has highlighted a substantial level of heterogeneity in the organisation and, in part, content of programmes. OBJECTIVE: To define competences and standards of knowledge, skills and professional behaviours required for the training of rheumatologists. METHODS: A European Alliance of Associations for Rheumatology (EULAR) task force (TF) of 23 experts, including two members of the European Union of Medical Specialists (UEMS) section of rheumatology, was convened. The mapping phase consisted of the retrieval of key documents on specialty training in rheumatology and other related specialties across a broad set of international sources. The content of these documents was extracted and represented the foundation for the document draft that underwent several rounds of online discussion within the TF, and afterwards was also distributed to a broad group of stakeholders for collecting feedback. The list of generated competences was voted on during the TF meetings, while the level of agreement (LoA) with each statement was established by anonymous online voting. RESULTS: A total of 132 international training curricula were retrieved and extracted. In addition to the TF members, 253 stakeholders commented and voted on the competences through an online anonymous survey. The TF developed (1) an overarching framework indicating the areas that should be addressed during training, (2) 7 domains defining broad areas that rheumatology trainees should master by the end of the training programme, (3) 8 core themes defining the nuances of each domain and (4) 28 competences that trainees should acquire to cover each of the areas outlined in the overarching framework. A high LoA was achieved for all competences. CONCLUSION: These points to consider for EULAR-UEMS standards for the training of European rheumatologists are now defined. Their dissemination and use can hopefully contribute to harmonising training across European countries.

Towards development of treat to target (T2T) in childhood-onset systemic lupus erythematosus: PReS-endorsed overarching principles and points-to-consider from an international task force.

OBJECTIVES: Application of 'treat-to-target' (T2T) in childhood-onset systemic lupus erythematosus (cSLE) may improve care and health outcomes. This initiative aimed to harmonise existing evidence and expert opinion regarding T2T for cSLE. METHODS: An international T2T Task Force was formed of specialists in paediatric rheumatology, paediatric nephrology, adult rheumatology, patient and parent representatives. A steering committee formulated a set of draft overarching principles and points-to-consider, based on evidence from systematic literature review. Two on-line preconsensus meeting Delphi surveys explored healthcare professionals' views on these provisional overarching principles and points-to-consider. A virtual consensus meeting employed a modified nominal group technique to discuss, modify and vote on each overarching principle/point-to-consider. Agreement of >80% of Task Force members was considered consensus. RESULTS: The Task Force agreed on four overarching principles and fourteen points-to-consider. It was agreed that both treatment targets and therapeutic strategies should be subject to shared decision making with the patient/caregivers, with full remission the preferred target, and low disease activity acceptable where remission cannot be achieved. Important elements of the points-to-consider included: aiming for prevention of flare and organ damage; glucocorticoid sparing; proactively addressing factors that impact health-related quality of life (fatigue, pain, mental health, educational challenges, medication side effects); and aiming for maintenance of the target over the long-term. An extensive research agenda was also formulated. CONCLUSIONS: These international, consensus agreed overarching principles and points-to-consider for T2T in cSLE lay the foundation for future T2T approaches in cSLE, endorsed by the Paediatric Rheumatology European Society.

Implementation of recommendations in rheumatic and musculoskeletal diseases: considerations for development and uptake.

A clinical guideline is a document with the aim of guiding decisions based on evidence regarding diagnosis, management and treatment in specific areas of healthcare. Specific to rheumatic and musculoskeletal diseases (RMDs), adherence to clinical guidelines recommendations impacts the outcomes of people with these diseases. However, currently, the implementation of recommendations is less than optimal in rheumatology.The WHO has described the implementation of evidence-based recommendations as one of the greatest challenges facing the global health community and has identified the importance of scaling up these recommendations. But closing the evidence-to-practice gap is often complex, time-consuming and difficult. In this context, the implementation science offers a framework to overcome this scenario.This article describes the principles of implementation science to facilitate and optimise the implementation of clinical recommendations in RMDs. Embedding implementation science methods and techniques into recommendation development and daily practice can help maximise the likelihood that implementation is successful in improving the quality of healthcare and healthcare services.

Geographic Variability, Time Trends and Association of Preoperative Magnetic Resonance Imaging with Surgical Outcomes for Elderly United States Men with Prostate Cancer: A Surveillance, Epidemiology, and End Results-Medicare Analysis.

PURPOSE: Our goal was to assess patterns of adoption and population-level outcomes of prostate magnetic resonance imaging (MRI) and association with surgical outcomes across a sample of U.S. elderly. MATERIALS AND METHODS: This population-based retrospective study used Surveillance Epidemiology, and End Results-Medicare linked data from 2003-2016 to identify men receiving prostatectomy for prostate cancer. We characterized the proportion of men receiving preoperative MRI in each year and in each hospital referral region (HRR). A 2-stage instrumental variable analysis was performed to assess the association of preoperative MRI with margin status, surgical complications and further cancer-directed therapies. RESULTS: A total of 19,369 men received prostatectomy in 72 HRRs; the mean age was 70.2 years (SD 3.2). The proportion of men receiving a preoperative MRI increased from 2.9% to 28.2% over the study period and ranged from 0.0% to 28.8% in the different HRRs. In our instrumental variable analysis, preoperative MRI was associated with lower odds of positive surgical margin (OR 0.84, 95% CI 0.72-0.97, p=0.01) lower odds of blood transfusions at 30 and 90 days (OR 0.56, 95% CI 0.38-0.83, p=0.003 and OR 0.58, 95% CI 0.41-0.84, p=0.004) but higher odds of further treatments (OR 1.49, 95% CI 1.32-1.70, p <0.001). CONCLUSIONS: Given that a minority of men receive presurgical MRIs with marked geographic variability, the association of MRI with lower odds of positive surgical margin suggests that efforts to support the dissemination of prostate MRI may improve surgical outcomes-but may come with a tendency for more resource-intensive cancer care overall.

Effect of Missed Items on the Reliability of the Kessler Foundation Neglect Assessment Process.

OBJECTIVE: To determine the maximum permissible number of missed items on the 10-item Catherine Bergego Scale administered after the Kessler Foundation Neglect Assessment Process (KF-NAP). Secondary objectives were to determine the frequency, characteristics, and most commonly cited reasons reported for missed items. DESIGN: Retrospective diagnostic accuracy study. SETTING: Sixteen inpatient rehabilitation facilities in the United States. PARTICIPANTS: A consecutive clinical sample of 4256 patients (N=4256) with stroke or other neurologic deficits who were assessed for spatial neglect with the KF-NAP. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Catherine Bergego Scale via KF-NAP. RESULTS: The majority (69.7%) of patients had at least 1 missed item on their KF-NAP. Among those with missed items, it was most common to have 2 missed items (51.4%), and few had more than 3 missed items (11.3%). The most commonly missed items were Collisions (37.2%), Cleaning After Meals (36.1%), Meals (34.0%), and Navigation (19.7%). The most commonly reported reasons for missed items included time constraints, cognitive or communication deficits, and behavior or refusal of the therapy session. These reasons were reported for nearly all item types. Item-specific reasons were also commonly reported, such as a lack of a needed resource for task completion or low functional status of the patient. Prorated scoring of measures with up to 3 missed items maintained an acceptable level of concordance with complete measures (Lin's Concordance Correlation Coefficient=0.96, 95% CI, 0.9478-0.9626) for the combination of 3 missed items with lowest concordance. CONCLUSIONS: Clinicians should make every effort to capture all items on the KF-NAP. However, missed items occur in the majority of cases because of patient factors and barriers inherent to the inpatient hospital setting. When missed items are necessary, clinicians can confidently interpret a prorated score when 7 or more items are scored.

Implementation of a pharmacist-led transitional pharmaceutical care programme: Process evaluation of Medication Actions to Reduce hospital admissions through a collaboration between Community and Hospital pharmacists (MARCH).

WHAT IS KNOWN AND OBJECTIVE: The recently conducted Medication Actions to Reduce hospital admissions through a collaboration between Community and Hospital pharmacists (MARCH) transitional care programme, which aimed to test the effectiveness of a transitional care programme on the occurrence of ADEs post-discharge, did not show a significant effect. To clarify whether this non-significant effect was due to poor implementation or due to ineffectiveness of the intervention as such, a process evaluation was conducted. The aim of the study was to gain more insight into the implementation fidelity of MARCH. METHODS: A mixed methods design and the modified Conceptual Framework for Implementation Fidelity was used. For evaluation, the implementation fidelity and moderating factors of four key MARCH intervention components (teach-back, the pharmaceutical discharge letter, the post-discharge home-visit and the transitional medication review) were assessed. Quantitative data were collected during and after the intervention. Qualitative data were collected using semi-structured interviews with MARCH healthcare professionals (community pharmacists, clinical pharmacists, pharmacy assistants and pharmaceutical consultants) and analysed using thematic analysis. RESULTS AND DISCUSSION: Not all key intervention components were implemented as intended. Teach-back was not always performed. Moreover, 63% of the pharmaceutical discharge letters, 35% of the post-discharge home-visits and 44% of the transitional medication reviews were not conducted within their planned time frames. Training sessions, structured manuals and protocols with detailed descriptions facilitated implementation. Intervention complexity, time constraints and the multidisciplinary coordination were identified as barriers for the implementation. WHAT IS NEW AND CONCLUSION: Overall, the implementation fidelity was considered to be moderate. Not all key intervention components were carried out as planned. Therefore, the non-significant results of the MARCH programme on ADEs may at least partly be explained by poor implementation of the programme. To successfully implement transitional care programmes, healthcare professionals require full integration of these programmes in the standard work-flow including IT improvements as well as compensation for the time investment.

[Impact of the HEARTS Initiative in a second-level health institution in ColombiaImpacto da iniciativa HEARTS em um estabelecimento de atenção secundária à saúde na Colômbia]. / Impacto de la Iniciativa HEARTS en una institución de salud de segundo nivel en Colombia.

Objective: To identify the impact of the HEARTS initiative on patients with high blood pressure treated in a Colombian hospital. Methods: Quasi-experimental, retrospective study between 2017 and 2019 with hypertensive patients over 18 years of age included in the HEARTS strategy and treated at the Santa Mónica Hospital in the municipality of Dosquebradas, department of Risaralda. The unit of analysis was medical history. Blood pressure targets (defined in the HEARTS initiative as a patient with systolic blood pressure <140 mmHg and diastolic pressure <90 mmHg) were assessed at the time of admission to the HEARTS program and one year later. Sociodemographic, pharmacological, clinical, and blood pressure targets were included, as was compliance with the recommendations of the initiative. Descriptive analysis was performed, and binary logistic regression was applied (p <0.05). Results: A total of 372 patients were studied, of whom 262 were women (70.4%). The mean age was 66.3 ± 12.2 years. In the first consultation, 285 patients (76.6%) presented blood pressure figures within the target range; in the second consultation this was achieved by 84.1% of patients (n=313, mean difference: 7.5%, 95% CI: 1.8 to 13.1; p=0.005). After implementation of the HEARTS initiative, 77.4% of patients (n=288) continued with the initial treatment. Following HEARTS recommendations increases the likelihood of being in the target range (p=0.033; OR= 2,688; CI= 1.081 - 6.684). Conclusions: Implementation of the HEARTS initiative favorably impacted blood pressure figures in patients with hypertension and decreased cardiovascular risk.

Objetivo: Identificar o impacto da iniciativa HEARTS nos pacientes com hipertensão arterial atendidos em um hospital colombiano. Métodos: Estudo quase-experimental, retrospectivo entre 2017 e 2019, com pacientes hipertensos maiores de 18 anos incluídos na estratégia HEARTS, atendidos no Hospital Santa Mónica do município de Dosquebradas, departamento de Risaralda. A unidade de análise foi a história clínica. As metas de pressão arterial (definidas na iniciativa HEARTS como pressão arterial sistólica <140 mmHg e pressão diastólica <90 mmHg) foram avaliadas no momento de ingresso no programa HEARTS e um ano depois. Foram incluídas variáveis sociodemográficas, farmacológicas, clínicas, metas de pressão arterial e adesão à iniciativa. Foram realizadas análises descritivas e foi aplicada a regressão logística binária (p<0,05). Resultados: Foram analisados 372 pacientes, dos quais 262 eram mulheres (70,4%). A média de idade foi de 66,3 ± 12,2 anos. Na primeira consulta de controle, 285 pacientes (76,6%) apresentaram valores de pressão arterial dentro das metas; na segunda consulta, as metas haviam sido alcançadas por 84,1% dos pacientes (n=313 diferença média: 7,5%, IC95%: 1,8 a 13,1, p=0,005). Após a implementação da iniciativa HEARTS, 77,4% dos pacientes (n=288) continuaram com o manejo inicial. O cumprimento das recomendações da HEARTS aumenta a probabilidade de estar nas metas (p=0,033; OR= 2,688; IC= 1,081 - 6,684). Conclusões: A implementação da iniciativa HEARTS teve um impacto favorável nos valores da pressão arterial em pacientes com hipertensão e diminuiu o risco cardiovascular.

2019 EULAR points to consider for the assessment of competences in rheumatology specialty training.

BACKGROUND AND AIM: Striving for harmonisation of specialty training and excellence of care in rheumatology, the European League Against Rheumatism (EULAR) established a task force to develop points to consider (PtCs) for the assessment of competences during rheumatology specialty training. METHODS: A systematic literature review on the performance of methods for the assessment of competences in rheumatology specialty training was conducted. This was followed by focus groups in five selected countries to gather information on assessment practices and priorities. Combining the collected evidence with expert opinion, the PtCs were formulated by the multidisciplinary task force, including rheumatologists, medical educationalists, and people with rheumatic and musculoskeletal diseases. The level of agreement (LoA) for each PtC was anonymously voted online. RESULTS: Four overarching principles and 10 PtCs were formulated. The overarching principles highlighted the importance of assessments being closely linked to the rheumatology training programme and protecting sufficient time and resources to ensure effective implementation. In the PtCs, two were related to overall assessment strategy (PtCs 1 and 5); three focused on formative assessment and portfolio (PtCs 2-4); three focused on the assessment of knowledge, skills or professionalism (PtCs 6-8); one focused on trainees at risk of failure (PtC 9); and one focused on training the trainers (PtC 10). The LoA (0-10) ranged from 8.75 to 9.9. CONCLUSION: These EULAR PtCs provide European guidance on assessment methods throughout rheumatology training programmes. These can be used to benchmark current practices and to develop future strategies, thereby fostering continuous improvement in rheumatology learning and, ultimately, in patient care.

Assessing ADHD symptoms in clinical public practice: Is a reliable final diagnosis possible?

INTRODUCTION: Attention deficit and hyperactivity disorder (ADHD) rates vary between 1% and 20% depending on the type of diagnosis guide used, the test used in the assessment, psychosocial factors, and professional in charge of the assessment. GOAL: to describe and compare current clinical ADHD assessment processes in public health system in two cohorts and analyze variables related to final diagnosis. DESIGN: Descriptive, multicenter, longitudinal (retrospective-prospective). LOCATION: primary care (PC) centers in Oviedo, Asturias (Spain). PARTICIPANTS: a Spanish clinical ADHD symptomatic sample (n=134) from two cohorts (2004 and 2009). VARIABLES: clinical professional in charge of ADHD assessment (PC, mental health professional [MH], neuropediatrician [NP]), type of test used in the assessment, confirmation/disconfirmation of ADHD diagnosis, and final diagnosis. RESULTS: the use of symptoms checklists and the assessments in charge of primary care (PC) and neuropediatrician (NP) professionals show an upward trend from 2004 to 2009. ADHD final diagnosis shows low inter-professional (NP-MH) reliability (kappa=0.39). Final diagnoses for the same symptoms are different depending on the professional (NP or MH). DISCUSSIONS: the professional in charge of the assessment appears to be a relevant variable for the final diagnosis. ADHD diagnosis criteria seem not to be clear. This data suggests that ADHD diagnosis must be used with caution to ensure good quality clinical standards when assessing and treating ADHD symptoms. Assessments supported by symptoms checklists and performed by NP or PC could be contributing factors to an ADHD over-diagnosis tendency.

Clinical characteristics and outcomes of patients with coronavirus disease 2019 (COVID-19) and rheumatic disease: a comparative cohort study from a US 'hot spot'.

OBJECTIVE: To investigate differences in manifestations and outcomes of coronavirus disease 2019 (COVID-19) infection between those with and without rheumatic disease. METHODS: We conducted a comparative cohort study of patients with rheumatic disease and COVID-19 (confirmed by severe acute respiratory syndrome coronavirus 2 PCR), compared in a 1:2 ratio with matched comparators on age, sex and date of COVID-19 diagnosis, between 1 March and 8 April 2020, at Partners HealthCare System in the greater Boston, Massachusetts area. We examined differences in demographics, clinical features and outcomes of COVID-19 infection. The main outcomes were hospitalisation, intensive care admission, mechanical ventilation and mortality. RESULTS: We identified 52 rheumatic disease patients with COVID-19 (mean age, 63 years; 69% female) and matched these to 104 non-rheumatic disease comparators. The majority (39, 75%) of patients with rheumatic disease were on immunosuppressive medications. Patients with and without rheumatic disease had similar symptoms and laboratory findings. A similar proportion of patients with and without rheumatic disease were hospitalised (23 (44%) vs 42 (40%)), p=0.50) but those with rheumatic disease required intensive care admission and mechanical ventilation more often (11 (48%) vs 7 (18%), multivariable OR 3.11 (95% CI 1.07 to 9.05)). Mortality was similar between the two groups (3 (6%) vs 4 (4%), p=0.69). CONCLUSIONS: Patients with rheumatic disease and COVID-19 infection were more likely to require mechanical ventilation but had similar clinical features and hospitalisation rates as those without rheumatic disease. These findings have important implications for patients with rheumatic disease but require further validation.

Paediatric multisystem inflammatory syndrome temporally associated with SARS-CoV-2 mimicking Kawasaki disease (Kawa-COVID-19): a multicentre cohort.

BACKGROUND: Current data suggest that COVID-19 is less frequent in children, with a milder course. However, over the past weeks, an increase in the number of children presenting to hospitals in the greater Paris region with a phenotype resembling Kawasaki disease (KD) has led to an alert by the French national health authorities. METHODS: Multicentre compilation of patients with KD in Paris region since April 2020, associated with the detection of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) ('Kawa-COVID-19'). A historical cohort of 'classical' KD served as a comparator. RESULTS: Sixteen patients were included (sex ratio=1, median age 10 years IQR (4·7 to 12.5)). SARS-CoV-2 was detected in 12 cases (69%), while a further three cases had documented recent contact with a quantitative PCR-positive individual (19%). Cardiac involvement included myocarditis in 44% (n=7). Factors prognostic for the development of severe disease (ie, requiring intensive care, n=7) were age over 5 years and ferritinaemia >1400 µg/L. Only five patients (31%) were successfully treated with a single intravenous immunoglobulin (IVIg) infusion, while 10 patients (62%) required a second line of treatment. The Kawa-COVID-19 cohort differed from a comparator group of 'classical' KD by older age at onset 10 vs 2 years (p<0.0001), lower platelet count (188 vs 383 G/L (p<0.0001)), a higher rate of myocarditis 7/16 vs 3/220 (p=0.0001) and resistance to first IVIg treatment 10/16 vs 45/220 (p=0.004). CONCLUSION: Kawa-COVID-19 likely represents a new systemic inflammatory syndrome temporally associated with SARS-CoV-2 infection in children. Further prospective international studies are necessary to confirm these findings and better understand the pathophysiology of Kawa-COVID-19. Trial registration number NCT02377245.

Digital crowdsourcing: unleashing its power in rheumatology.

The COVID-19 pandemic forces the whole rheumatic and musculoskeletal diseases community to reassemble established treatment and research standards. Digital crowdsourcing is a key tool in this pandemic to create and distil desperately needed clinical evidence and exchange of knowledge for patients and physicians alike. This viewpoint explains the concept of digital crowdsourcing and discusses examples and opportunities in rheumatology. First experiences of digital crowdsourcing in rheumatology show transparent, accessible, accelerated research results empowering patients and rheumatologists.

Examination of referral criteria for outpatient palliative care among patients with advanced cancer.

BACKGROUND: An international panel achieved consensus on 9 need-based and 2 time-based major referral criteria to identify patients appropriate for outpatient palliative care referral. To better understand the operational characteristics of these criteria, we examined the proportion and timing of patients who met these referral criteria at our Supportive Care Clinic. METHODS: We retrieved data on consecutive patients with advanced cancer who were referred to our Supportive Care Clinic between January 1, 2016, and February 18, 2016. We examined the proportion of patients who met each major criteria and its timing. RESULTS: Among 200 patients (mean age 60, 53% female), the median overall survival from outpatient palliative care referral was 14 (95% confidence interval 9.2, 17.5) months. A majority (n = 170, 85%) of patients met at least 1 major criteria; specifically, 28%, 30%, 20%, and 8% met 1, 2, 3, and ≥ 4 criteria, respectively. The most commonly met need-based criteria were severe physical symptoms (n = 140, 70%), emotional symptoms (n = 36, 18%), decision-making needs (n = 26, 13%), and brain/leptomeningeal metastases (n = 25, 13%). For time-based criteria, 54 (27%) were referred within 3 months of diagnosis of advanced cancer and 63 (32%) after progression from ≥ 2 lines of palliative systemic therapy. The median duration from patient first meeting any criterion to palliative care referral was 2.4 (interquartile range 0.1, 8.6) months. CONCLUSIONS: Patients were referred early to our palliative care clinic and a vast majority (85%) of them met at least one major criteria. Standardized referral based on these criteria may facilitate even earlier referral.

Differential Effects of Time to Initiation of Therapy on Disability and Quality of Life in Patients With Mild and Moderate to Severe Ischemic Stroke.

OBJECTIVE: To assess the effect of time to acute therapy on health-related quality of life (HRQoL) and disability after ischemic stroke. DESIGN: Prospective cohort study. SETTING: Comprehensive stroke care center in a large metropolitan city. PARTICIPANTS: Patients (N=553; mean age, 67 y; 51.9% male; 64.4% white; 88.8% ischemic stroke) with ischemic stroke or transient ischemic attack (TIA) enrolled in a longitudinal observational study between August 2012 to January 2014 who received rehabilitation services. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Disability status was assessed with the modified Rankin Scale (mRS) and Barthel Index (BI). HRQoL was assessed using the Quality of Life in Neurological Disorders measures of executive function, general cognitive concerns, upper extremity dexterity, and lower extremity mobility. Time to therapy consult and treatment were defined as the number of days from hospital admission to initial consult by a therapist and number of days from hospital admission to initial treatment, respectively. RESULTS: Among the participants, the median number of days from hospital admission to acute therapy consult was 2 days (interquartile range, 1-3d). Multivariable linear and logistic regression models indicated that for those with the National Institutes of Health Stroke Scale (NIHSS) score<5, longer time to therapy consult was associated with worse BI scores (BI=100; odds ratio [OR], 0.818; P=.008), executive function T scores (b=-0.865; P=.001), and general cognitive concerns T scores (b=-0.609; P=.009) at 1-month in adjusted analyses. In those with NIHSS score≥5, longer time to therapy treatment led to increased disability (ie, mRS≥ 2; OR, 1.15; P=.039) and lower extremity mobility T scores (b=-0.591; P=.046) at 1 month in adjusted analyses. CONCLUSIONS: Longer time to initiation of acute therapy has differential effects on poststroke disability and HRQoL up to 1-month after ischemic stroke and TIA. The effect of acute therapy consult is more notable for those with mild deficits, while the effect of acute therapy treatment is more notable for those with moderate to severe deficits. Minimizing time to therapy consults and treatments in the acute hospital period might improve outcomes after ischemic stroke and TIA.

A Standard Method for Determining the Minimal Clinically Important Difference for Rehabilitation Measures.

The minimal clinically important difference (MCID) is receiving increasing interest and importance in medical practice and research. The MCID is the smallest improvement in scores in the domain of interest that patients perceive as beneficial. In clinical trials, comparing the proportion of individuals between treatment and control groups who obtain a MCID may be more informative than comparisons of mean change between groups because a statistically significant mean difference does not necessarily represent a difference that is perceived as meaningful by treatment recipients. The MCID may also be useful in advancing personalized medicine by characterizing those who are most likely to benefit from a treatment. In clinical practice, the MCID can be used to identify if a participant is experiencing a meaningful change in status. A variety of methods have been used to determine the MCID with no clear agreement on the most appropriate approach. Two major sets of methods are either (1) distribution-based, that is, referencing the MCID to a measure of variability or effect size in the measure of interest or (2) anchor-based, that is, referencing the MCID to an external assessment of change in the condition, ability, or activity represented by the measure of interest. In prior literature, using multiple methods to "triangulate" on the value of the MCID has been proposed. In this commentary, we describe a systematic approach to triangulate on the MCID using both distribution-based and anchor-based methods. Adaptation of a systematic approach for obtaining the MCID in rehabilitation would facilitate communication and comparison of results among rehabilitation researchers and providers.