Leticia Leon

EULAR / PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition co-ordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

Prognostic factors for long-term work disability due to musculoskeletal disorders

The objective of this study is to identify risk factors for permanent work disability (PWD) related to musculoskeletal disorders (MSDs). This is a secondary data analysis of a randomized controlled intervention study in Temporary Work Disability (TWD) due to MSDs. The association of PWD (claim submission and status recognition) with baseline clinical, sociodemographic, work-related administrative and occupational factors was analyzed by Cox proportional hazards models. Of 3,311 patients with TWD, 47 submitted a PWD claim, of whom 32 achieved PWD status. The main alleged causes of the PWD were back pain, sciatica, and inflammatory diseases. The following factors were independently associated with an increased probability of PWD claim submission: age (odds ratio (OR) 5.1), being woman (OR 2.1), self-employment (OR 3.4), unemployment (OR 13.8), previous musculoskeletal surgery (OR 16), repeated TWD (OR 3.4), sitting (OR 2.8), and raising arms frequently (OR 3.1). Patients with inflammatory disease were more likely to file PWD claims (OR 10.4) while tendonitis was associated with lower probability (OR 0.3). The sociodemographic factors that better predicted PWD status recognition were age (OR 5.7), low educational level (OR 4.2), previous musculoskeletal surgery (OR 14.9), unemployment (OR 17.6), sitting (OR 2.6), and raising arms frequently (OR 2.7). Inflammatory diseases were the diagnoses associated with a higher rate of PWD status recognition (OR 6.1). Inflammatory diseases have a high chronic disability potential in active workers. Sociodemographic, work-related, occupational factors, and other clinical factors, some of which are modifiable, may explain the development of long-term work disability related to MSDs.

Orthopedic Surgery in Rheumatoid Arthritis in the Era of Biologic Therapy

Objective. To analyze sociodemographic and clinic-related factors associated with the use of orthopedic surgical procedures in rheumatoid arthritis (RA), focusing on the potential role of new biologic therapies. Methods. A retrospective medical record review was performed in a probability sample of 1272 patients with RA from 47 units distributed in 19 Spanish regions. Sociodemographic and clinical features, use of drugs, and arthritis-related joint surgeries were recorded following a standardized protocol. Results. A total of 94 patients (7.4%) underwent any orthopedic surgery during their disease course, with a total of 114 surgeries; 47 (41.2%) of these surgeries were total joint replacement (TJR). The median time to first orthopedic procedure was 7.9 years from the onset of RA symptoms, and the rate of orthopedic surgery (excluding TJR) was 4.5 procedures per 100 person-years from the beginning of RA, while the rate of TJR was 2.25 interventions per 100 person-years. A higher risk of undergoing an orthopedic surgical procedure was associated with taking nonsteroidal antiinflammatory drugs (NSAID) in the previous 2 years, female sex, longterm disease, and the presence of extraarticular complications. The risk factors for undergoing a TJR were being old, having a longterm disease, and taking biologic therapies. Conclusion. In the era of biologics, our national audit found a low percentage of patients who underwent orthopedic surgery, probably reflecting a thorough management of the RA. Sociodemographic factors, longterm RA, extraarticular complications, and NSAID were associated with orthopedic surgery.

Systematic review and critical appraisal of transitional care programmes in rheumatology

OBJECTIVES Identify existing models of transitional care in rheumatic and musculoskeletal diseases (RMD), describe their strengths and weaknesses, and provide support to a consensus initiative to develop recommendations for transitional care. METHODS A systematic review was conducted to identify publications describing transition programmes in RMD. Eligibility for inclusion required detailed description of the programme. Descriptive information was collected, including country of the programme, target diseases and ages of the patients, resources, elements of the transition process and, when described, outcomes and quality indicators. Quality assessment of the programmes included: level of definition and the evidence base for the programme, availability of quality indicators and evidence of effectiveness. RESULTS Overall, 27 articles were identified and evaluated, related to 8 programmes in 6 countries: 4 covered all RMDs, 3 specific for patients with juvenile idiopathic arthritis (JIA) and 1 programme generic for chronic diseases and adapted for RMD. Core elements of these transition programmes included the following: a written transition policy; patient individualised planning and flexibility of transitional care; designation of transition coordinator role; acquisition of knowledge and skills in self-management of care; decision making, shared care and communication between paediatric and adult health care provider teams and a planned transfer to adult rheumatology. Only 2 provided evidence of effectiveness according to previously specified outcome measures. CONCLUSIONS Transitional care programmes in RMDs are variable in their structures, staffing and processes. There are no standardised measures of outcome or effectiveness. This information provides important valuable insights and strategies to develop transitional care in RMD.

Weather conditions may worsen symptoms in rheumatoid arthritis patients: The possible effect of temperature

OBJECTIVE Patients with rheumatoid arthritis (RA) complain that weather conditions aggravate their symptoms. We investigated the short-term effects of weather conditions on worsening of RA and determined possible seasonal fluctuations. METHODS We conducted a case-crossover study in Madrid, Spain. Daily cases of RA flares were collected from the emergency room of a tertiary level hospital between 2004 and 2007. RESULTS 245 RA patients who visited the emergency room 306 times due to RA related complaints as the main diagnostic reason were included in the study. Patients from 50 to 65 years old were 16% more likely to present a flare with lower mean temperatures. CONCLUSIONS Our results support the belief that weather influences rheumatic pain in middle aged patients.

Influence of demographic and clinical factors on the mortality rate of a rheumatoid arthritis cohort: A 20-year survival study.

OBJECTIVES To describe the mortality rate (MR) and standardized MR (SMR) of an incident cohort of rheumatoid arthritis (RA) patients followed up for 20 years, and to analyze the influence on morality risk of different demographic and clinical variables, including radiographic joint damage. METHODS Retrospective longitudinal study that included 2271 RA patients attending the rheumatology outpatient clinic of the Hospital Clínico San Carlos (Madrid, Spain), enrolled from January 1994 to February 2013 and followed up from RA diagnosis to patients׳ death or September 2013. Disability and disease activity were measured as the averaged value of the Heath Assessment Questionnaire and the erythrocyte sedimentation rate, respectively, of the first 2 years after RA diagnosis. Radiographic joint damage of hands and wrists was assessed with the Sharp/van der Heijde score. Indirect SMRs with a 95% of confidence interval (95% CI) were calculated. Cox bivariate and multivariate regression models were performed to assess risk factors for death. RESULTS A total of 431 patients died (19%) during the observation time (18,482 person-years), resulting in a MR of 23 subjects per 1000 patient-years [95% CI: 21-26]. SMR was 1.89 (1.72-2.08). In the multivariate analysis, men, older age at diagnosis, the presence of rheumatoid factor, higher number of hospital admissions, greater disease activity, and greater radiographic joint damage were independently associated with greater mortality risk. CONCLUSIONS RA patients have an excess mortality compared with the general population. Radiological joint damage and early disease activity are independent mortality risk factors. A tighter control at early stages may be necessary to reduce mortality.

Transitional care for rheumatic conditions in Europe: current clinical practice and available resources

ObjectiveTo assess European pediatric rheumatology providers’ current clinical practices and resources used in the transition from child-centered to adult-oriented care.MethodsEuropean pediatric rheumatologists were invited to complete a 17-item anonymized e-survey assessing current transition practices, transition policy awareness, and needs in advance of the publication of EULAR/PReS recommendations on transition.ResultsThe response rate was 121/276 (44%), including responses from 115 centers in 22 European Union countries. Although 32/121 (26%) responded that their centers did not offer transition services, the majority (99%) agreed that a formalized process in transitioning patients to adult care is necessary. A minority (<30%) of respondents stated that they have a written transition policy although 46% have an informal transition process. Designated staff to support transitional care were available in a minority of centers: nurse (35%), physiotherapist (15%), psychologist (15%), social worker (8%), and occupational therapist (2%). The existence of a designated team member to coordinate transition was acknowledged in many centers (64% of respondents) although just 36% use a checklist for young people as part of individualized transitional care.ConclusionThis survey of European pediatric rheumatology providers regarding transitional care practices demonstrates agreement that transitional care is important, and wide variation in current provision of transition services exists.

Safety of disease-modifying antirheumatic drugs and biologic agents for rheumatoid arthritis patients in real-life conditions

OBJECTIVE The aim of this study was to describe the incidence rate (IR) of adverse drug reactions (ADRs) in daily clinical practice, related to disease-modifying antirheumatic drugs (DMARDs) and biologic agents (BA) in rheumatoid arthritis (RA) patients, and to analyze factors causing discontinuation due to ADRs. METHODS This was a prospective observational study (October 2010 to October 2011). RA patients who were attended in our hospital taking DMARDs or BA during the study period were included. ADRs were injuries related to these drugs and registered with a software system in routine visits. ADRs could be mild (lowering dosage), moderate (drug discontinuation), or severe (hospital admission). The IR of ADR per 100 patient-years was estimated using survival techniques. Cox regression models (HR; 95% confidence interval) were used to explore factors associated with discontinuation due to ADRs. RESULTS In total, 1202 patients were analyzed, with 158 ADRs (IR = 15.2). Of all ADRs, 80.4% required drug discontinuation (IR = 12.2). Age, less disease and therapy duration, taking corticoids, and combined therapy versus monotherapy (HR = 3; 95% CI: 2.0-4.4) were the factors independently associated to discontinuation due to ADRs. We did not find statistical differences between the different monotherapy regimens. Regarding combinations, Methotrexate + BA had the lowest risk of discontinuation compared to the rest (HR = 0.24; 95% CI: 0.09-0.6). CONCLUSIONS We have estimated the incidence of ADRs related to DMARDs/BA in real-life conditions. We confirm the role of combined therapy in the development of discontinuations due to ADRs, except for BA + MTX, which did not show an increase of toxicity compared to monotherapy. This combination seems to be safer than others.

Incidence of Physical Disability Related to Musculoskeletal Disorders in the Elderly: Results From a Primary Care–Based Registry

To estimate the incidence of musculoskeletal‐related acute physical disability in the elderly (APDE).

Negative affect in systemic sclerosis

Abstract Negative affect appears frequently in rheumatic diseases, but studies about their importance and prevalence in systemic sclerosis patients are scarce, and the results are inconclusive separately. We conducted a comprehensive search on April 2013 of PubMed, Medline, and PsycINFO databases to identify original research studies published. A total of 48 studies were included in this systematic review. We found negative emotions have very high levels in these patients, compared to both healthy population other chronic rheumatic patients assessed with the same instruments and cutoffs. Depression has been, of the three negative emotions that we approach to in this review, the most widely studied in systemic sclerosis, followed by anxiety. Despite the fact that anger is a common emotion in these diseases is poorly studied. Methodologic issues limited the ability to draw strong conclusions from studies of predictors. Disease-specific symptoms (swollen joints, gastrointestinal and respiratory symptoms and digital ulcers) and factors related to physical appearance were associated with negative emotions. Interdisciplinary care and biopsychosocial approach would have a great benefit in the clinical management of these patients.