Search

BACKGROUND: To report baseline characteristics, patient reported outcomes and treatment of children with Juvenile Dermatomyositis (JDM) in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. METHODS: Children newly diagnosed with JDM were enrolled in the CARRA Registry from 41 pediatric rheumatology centers. Baseline patient demographics, disease characteristics, assessments, patient reported outcome and treatments were recorded. RESULTS: In the first year, 119 JDM participants were enrolled. Most were female (63.4%), and white (72.3%) with a median diagnosis age 8.0 years (IQR 4.0-11.5), and median age of disease onset 7.0 years (IQR 3.5-7.5). They had characteristic rashes (92.4%), elevated muscle enzymes (83.2%), physician global score 4.0 (IQR 2.5-5.0) and manual muscle testing score 63.5 (IQR 51.0-75.0). Calcinosis (3.4%) and interstitial lung disease (< 1%) were uncommon. Myositis specific antibodies were measured and reported in nearly half of participants enrolled where anti-MJ followed by Anti-p155/140 were most common (11/49 and 7/53 respectively). Childhood Health Assessment Questionnaire (CHAQ) results showed mild-moderate disability (median 0.750, IQR 0.030-1.875), as did patient/parent global assessments of disease activity (median 3, patient IQR: 1.75-5.25; parent IQR: 1-7). Patient Reported Outcomes Measurement Information System (PROMIS®) Pediatric Global Health 7 scores, Pain Interference, Physical Function scores for Mobility, and Upper Extremity Function were commonly worse than 95% of the general pediatric population. CONCLUSIONS: In its inaugural year, 119 JDM patients were successfully enrolled in participapte in the New CARRA Registy. This registry will provide the necessary foundation to advance clinical research to improve outcomes using traditional measures and patient reported outcomes. With the CARRA biorepository, this infrastructure will enable future translational research. Together, these efforts may aid i

The translation of research findings into clinical practice is challenging, especially fields like in pediatric rheumatology, where the evidence base is limited, there are few clinical trials, and the conditions are rare and heterogeneous. Implementation science methodologies have been shown to reduce the research- to- practice gap in other clinical settings may have similar utility in pediatric rheumatology. This paper describes the key discussion points from the inaugural Childhood Arthritis and Rheumatology Research Alliance Implementation Science retreat held in February 2020. The aim of this report is to synthesize those findings into an Implementation Science Roadmap for pediatric rheumatology research. This roadmap is based on three foundational principles: fostering curiosity and ensuring discovery, integration of research and quality improvement, and patient-centeredness. We include six key steps anchored in the principles of implementation science. Applying this roadmap will enable researchers to evaluate the full range of research activities, from the initial clinical design and evidence acquisition to the application of those findings in pediatric rheumatology clinics and direct patient care.

BackgroundThe incidence of systemic lupus in children with discoid lupus is unknown.ObjectiveThis study assessed the baseline characteristics of patients with pediatric discoid lupus erythematosus (pDLE).MethodsMedical records at 17 sites were reviewed for pediatric dermatology and rheumatology patients with discoid lupus erythematosus. The inclusion criteria were clinical and/or histopathologic diagnosis of discoid lupus erythematosus with an age at onset of <18 years. Baseline data were collected at the first documented visit. Outcomes included diagnosis of systemic lupus erythematosus (SLE) at the baseline visit using the 1997 American College of Rheumatology (primary) and the 2012 Systemic Lupus International Collaborating Clinics (secondary) criteria.ResultsOf the >1500 charts reviewed, 438 patients met the inclusion criteria. The cohort was predominantly female (72%) and racially/ethnically diverse. A diagnosis of SLE at the baseline visit (pDLE + SLE) was rendered in 162 (37%) patients using the American College of Rheumatology and in 181 (41%) patients using the Systemic Lupus International Collaborating Clinics criteria. Patients with pDLE + SLE were older at the time of rash onset (median, 12.9 vs 8.9 years; P < .001), with shorter time from discoid lupus erythematosus onset to diagnosis, compared with patients with pDLE-only (median, 2 vs 7 months; P < .001). Patients with pDLE + SLE were more likely to be female (P = .004), with generalized discoid lupus erythematosus and clinically aggressive disease, including end-organ involvement, positive serologies, and higher- titer levels of antinuclear antibodies (P < .001).LimitationsRetrospective study.ConclusionA diagnosis of discoid lupus erythematosus in adolescence should prompt thorough screening for SLE.

BackgroundThe coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions. Juvenile idiopathic arthritis (JIA), the most common chronic pediatric rheumatic condition, is associated with increased pain, decreased function, and decreased quality of life.ObjectiveThe aim of this study is to design a dashboard prototype for use in coproducing care in patients with JIA. We evaluated the use and needs of end users, obtained a consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction.MethodsA human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support the coproduction of care in 4 ambulatory pediatric rheumatology clinics. We engaged a multidisciplinary team (n=18) of patients, parents, clinicians, nurses, and staff during an in-person kick-off meeting followed by biweekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences.ResultsTeams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care

Young adults represent a vulnerable population for multiple reasons. This time in an individual's life coincides with many personal and professional changes and challenges. Some individuals may embrace the change, but for those with a chronic illness, this transition may be difficult. As one is navigating decisions that will ultimately impact their future, they must also navigate changes related to their healthcare. Here, we discuss a case involving a transition from a pediatric to an adult rheumatology clinic and the impact on the patient. This case will highlight some of the challenges patients face and will explore how this process could be improved for our patients. For many young individuals, this is the best of times as they are transitioning to an adult but also the worst of times as they must now make adult decisions with adult consequences.

Data on therapy of COVID-19 in immunocompetent and immunosuppressed children are scarce. We aimed to explore management strategies of pediatric rheumatologists. All subscribers to international Pediatric Rheumatology Bulletin Board were invited to take part in an online survey on therapeutic approaches to COVID-19 in healthy children and children with autoimmune/inflammatory diseases (AID). Off-label therapies would be considered by 90.3% of the 93 participating respondents. In stable patients with COVID-19 on oxygen supply (stage I), use of remdesivir (48.3%), azithromycin (26.6%), oral corticosteroids (25.4%) and/or hydroxychloroquine (21.9%) would be recommended. In case of early signs of cytokine storm (stage II) or in critically ill patients (stage III) (a) anakinra (79.5% stage II; 83.6% stage III) or tocilizumab (58.0% and 87.0%, respectively); (b) corticosteroids (oral 67.2% stage II, intravenously 81.7% stage III); (c) intravenous immunoglobulins (both stages 56.5%); or (d) remdesivir (both stages 46.7%) were considered. In AID, > 94.2% of the respondents would not support a preventive adaptation of the immunomodulating therapy. In case of mild COVID-19, more than 50% of the respondents would continue pre-existing treatment with immunoglobulins (100%), hydroxychloroquine (94.2%), anakinra (79.2%) or canakinumab (72.5%), or tocilizumab (69.8%). Long-term corticosteroids would be reduced by 26.9% (< = 2 mg/kg/d) and 50.0% (> 2 mg/kg/day), respectively, with only 5.8% of respondents voting to discontinue the therapy. Conversely, more than 75% of respondents would refrain from administering cyclophosphamide and anti-CD20-antibodies. As evidence on management of pediatric COVID-19 is incomplete, continuous and critical expert opinion and knowledge exchange is helpful.

Young adults represent a vulnerable population for multiple reasons. This time in an individual's life coincides with many personal and professional changes and challenges. Some individuals may embrace the change, but for those with a chronic illness, this transition may be difficult. As one is navigating decisions that will ultimately impact their future, they must also navigate changes related to their healthcare. Here, we discuss a case involving a transition from a pediatric to an adult rheumatology clinic and the impact on the patient. This case will highlight some of the challenges patients face and will explore how this process could be improved for our patients. For many young individuals, this is the best of times as they are transitioning to an adult but also the worst of times as they must now make adult decisions with adult consequences.

Background: Recently preliminary ultrasonography (US) definitions, in B mode, for normal components of pediatric joints have been developed by the OMERACT US group. The aim of the current study was to include Doppler findings in the evaluation and definition of normal joint features that can be visualized in healthy children at different age groups. Methods: A multistep approach was used. Firstly, new additional definitions of joint components were proposed during an expert meeting. In the second step, these definitions, along with the preliminary B-mode-US definitions, were tested for feasibility in an exercise in healthy children at different age groups. In the last step, a larger panel of US experts were invited to join a web-based consensus process in order to approve the developed definitions using the Delphi methodology. A Likert scale of 1-5 was used to assess agreement. Results: Physiological vascularity and fat pad tissue were identified and tested as two additional joint components in healthy children. Since physiological vascularity changes over the time in the growing skeleton, the final definition of Doppler findings comprised separate statements instead of a single full definition. A total of seven statements was developed and included in a written Delphi questionnaire to define and validate the new components. The final definitions for fat pad and physiological vascularity agreed by the group of experts reached 92.9% and 100% agreement respectively in a web survey. Conclusion: The inclusion of these two additional joints components which are linked to detection of Doppler signal in pediatric healthy joints will improve the identification of abnormalities in children with joint pathologies.

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

ProblemJuvenile Arthritis (JA) is one of the most common autoimmune diseases in children. A variety of sociocultural factors that influence health outcomes in children with JA have been examined in previous research. However, clinical guidelines to guide the care of these children lack support because this research has not been systematically examined and synthesized.Eligibility criteriaPrimary research articles from five internet databases were included if they were peer-reviewed articles in English of studies conducted in the U.S. or Canada and referenced one or more determinants of health, quality of life, socioeconomic status, or health disparities in children with JA.SampleThe final sample included 16 articles representing 2139 children and 939 parents.ResultsTopics covered in the studies included medication compliance, electronic medical records, environmental risk factors, economic hardship, parental coping, leisure activities, and their effects on patient outcomes including disability and quality of life. Patients with Medicaid experienced more severe outcomes than patients with private insurance despite equivalent levels of healthcare utilization. Other important topics, such as effects of the physical environment and alcohol use, were missing from the literature.ConclusionsFive categories of health determinants were found to influence outcomes: biology, individual behaviors, social environment, physical environment, and health services. Disparities continue to exist for racial and ethnic minority children with JA and those of low socioeconomic status.ImplicationsSociocultural factors should be taken into consideration when developing care plans, research studies, and policies in order to remove barriers and promote the best outcomes for this vulnerable population.

Introduction: it is necessary to call for the training of rheumatologists with a pediatric profile who, most precociously, are able to diagnose rheumatic diseases in childhood and adolescence and, consequently, have a favorable influence on their prognosis and prevention. Objective: to reflect on relevant aspects that the rheumatologist with a pediatric profile should take into account for primary, secondary and tertiary prevention in patients with rheumatic fever. Development: during the period December 2016 - February 2017, a documentary review of studies of the last 20 years that included any of the following keywords: "rheumatic fever", "prevention", "prophylaxis" was carried out. The search was restricted to books and articles published in the Spanish and English languages, of which only bibliographic reviews were included, located in specialized databases such as BioMed Central, Medline, Scielo and Medscape. Consultations were also conducted with other sites such as the Pan American Health Organization (PAHO) and the World Health Organization (WHO). As a result of the search 20 articles were obtained, of which 4 were discarded since they did not show evidence of the criteria used for the interpretation of data and conclusions of other studies, finally 16 articles and 2 books were selected. Conclusions: the significance of rheumatic diseases in childhood and adolescence is undeniable, given its social, psychological, familial and school repercussions. The key to providing quality health care to pediatric patients suffering from rheumatic diseases resides in forming a workforce of pediatric rheumatologists. The danger of not doing so may lead to the perpetuation of diseases such as rheumatic fever, considered as a prophylactic failure. In the agenda for the development of the subspecialty of pediatric rheumatology it is necessary to reflect on primary, secondary and tertiary prevention in these patients., Introducción: es necesario hacer un llamado a la formación de reumatólogos con perfil pediátrico quienes, con mayor precocidad, pueden realizar el diagnóstico de las enfermedades reumáticas en la infancia y la adolescencia e influir favorablemente en su pronóstico y prevención. Objetivo: reflexionar sobre aspectos relevantes que el reumatólogo con perfil pediátrico debe tener en cuenta para la prevención primaria, secundaria y terciaria en los pacientes con fiebre reumática. Desarrollo: durante el período diciembre 2016- febrero 2017, se realizó una revisión documental de estudios, de los últimos 20 años, que incluyeran alguna de las siguientes palabras clave "fiebre reumática", "prevención", " profilaxis". La búsqueda se restringió a libros y artículos publicados en los idiomas español e inglés, de los cuales solo se incluyeron revisiones bibliográficas, ubicadas en bases de datos especializadas tales como BioMed Central, Medline, Scielo y Medscape. Además se realizaron consultas a otros sitios como el de la Organización Panamericana de la Salud y la Organización Mundial de la Salud. Como resultado de la búsqueda se obtuvieron 20 artículos, de los cuales 4 se descartaron ya que no mostraran evidencias de los criterios empleados para la interpretación de datos y conclusiones de otros estudios, finalmente fueron seleccionados 16 artículos y 2 libros. Conclusiones: es innegable la significación que hoy día tienen las enfermedades reumáticas en la infancia y adolescencia, dada su repercusión tanto a nivel social y psicológico, como familiar y escolar. La clave para brindar una atención de salud de calidad a los pacientes pediátricos que sufren enfermedades reumáticas reside en formar una fuerza laboral de reumatólogos pediátricos. El peligro de no hacerlo puede redundar en que se perpetúe la aparición de enfermedades como la fiebre reumática, considerada como un fracaso profiláctico. En la agenda para el desarrollo de la subespecialidad de reumatología pediátrica es pr

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration. Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods. Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events. Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.

BACKGROUND: The number of trained specialists world-wide is insufficient to serve all children with pediatric rheumatologic disorders, even in the countries with robust medical resources. We evaluated the potential of diagnostic decision support software (DDSS) to alleviate this shortage by assessing the ability of such software to improve the diagnostic accuracy of non-specialists. METHODS: Using vignettes of actual clinical cases, clinician testers generated a differential diagnosis before and after using diagnostic decision support software. The evaluation used the SimulConsult® DDSS tool, based on Bayesian pattern matching with temporal onset of each finding in each disease. The tool covered 5405 diseases (averaging 22 findings per disease). Rheumatology content in the database was developed using both primary references and textbooks. The frequency, timing, age of onset and age of disappearance of findings, as well as their incidence, treatability, and heritability were taken into account in order to guide diagnostic decision making. These capabilities allowed key information such as pertinent negatives and evolution over time to be used in the computations. Efficacy was measured by comparing whether the correct condition was included in the differential diagnosis generated by clinicians before using the software ("unaided"), versus after use of the DDSS ("aided"). RESULTS: The 26 clinicians demonstrated a significant reduction in diagnostic errors following introduction of the software, from 28% errors while unaided to 15% using decision support (p < 0.0001). Improvement was greatest for emergency medicine physicians (p = 0.013) and clinicians in practice for less than 10 years (p = 0.012). This error reduction occurred despite the fact that testers employed an "open book" approach to generate their initial lists of potential diagnoses, spending an average of 8.6 min using printed and electronic sources of medical information before using the diagnostic softwa

BACKGROUND: The number of trained specialists world-wide is insufficient to serve all children with pediatric rheumatologic disorders, even in the countries with robust medical resources. We evaluated the potential of diagnostic decision support software (DDSS) to alleviate this shortage by assessing the ability of such software to improve the diagnostic accuracy of non-specialists. METHODS: Using vignettes of actual clinical cases, clinician testers generated a differential diagnosis before and after using diagnostic decision support software. The evaluation used the SimulConsult® DDSS tool, based on Bayesian pattern matching with temporal onset of each finding in each disease. The tool covered 5405 diseases (averaging 22 findings per disease). Rheumatology content in the database was developed using both primary references and textbooks. The frequency, timing, age of onset and age of disappearance of findings, as well as their incidence, treatability, and heritability were taken into account in order to guide diagnostic decision making. These capabilities allowed key information such as pertinent negatives and evolution over time to be used in the computations. Efficacy was measured by comparing whether the correct condition was included in the differential diagnosis generated by clinicians before using the software ("unaided"), versus after use of the DDSS ("aided"). RESULTS: The 26 clinicians demonstrated a significant reduction in diagnostic errors following introduction of the software, from 28% errors while unaided to 15% using decision support (p < 0.0001). Improvement was greatest for emergency medicine physicians (p = 0.013) and clinicians in practice for less than 10 years (p = 0.012). This error reduction occurred despite the fact that testers employed an "open book" approach to generate their initial lists of potential diagnoses, spending an average of 8.6 min using printed and electronic sources of medical information before using the diagnostic softwa

Πτυχιακή εργασία -- Σχολή Επαγγελμάτων Υγείας και Πρόνοιας -- Τμήμα Νοσηλευτικής, 2011 -- αα 1685, Τα ρευματικά νοσήματα είναι συχνά, τα πιο πολλά είναι χρόνια, ορισμένα έχουν σοβαρή πορεία, με αποτέλεσμα τα συνηθέστερα χρόνια προβλήματα να περιθάλπονται συχνότερα στην πρωτοβάθμια φροντίδα. Αποτελούν την κύρια αιτία αναπηρίας σε ηλικίες άνω των 15 ετών. Υπάρχουν πάνω από 100 ρευματικά νοσήματα. Αναμφίβολα, αποτελούν ένα από τα μεγαλύτερα ιατροκοινωνικά προβλήματα, για τους ασθενείς, τις οικογένειές τους, την κοινωνία και την οικονομία. Περισσότεροι από το ¼ των ενηλίκων πάσχουν από ενεργό ή χρόνιο ρευματικό νόσημα σε ύφεση. Η Ρευματοειδής Αρθρίτιδα (Ρ.Α.) αποτελεί κύριο εκπρόσωπο των παραπάνω νοσημάτων. Η Ρ.Α. είναι μια χρόνια συστηματική νόσος, χαρακτηριζόμενη από υποτροπιάζουσες φλεγμονές στις αρθρώσεις και στις σχετικές με αυτές δομές και συνοδεύεται συχνά με ποικιλία εξωαρθρικών εκδηλώσεων. Η πορεία της νόσου είναι απρόβλεπτη και συστηματική. Η δραστηριότητά της χαρακτηρίζεται από περιόδους εξάρσεων και υφέσεων. Οι ρευματικές παθήσεις είναι η μεγαλύτερη αιτία αναπηρίας στην Ευρώπη. Είναι μία οδυνηρή κατάσταση που προκαλεί εξασθένιση και επηρεάζει περισσότερο από 103 εκατομμύρια ανθρώπους στην Ευρώπη, δηλαδή ένας στους πέντε κατοίκους θα αναπτύξει την ασθένεια. Οι ρευματοπάθειες επηρεάζουν άτομα όλων των ηλικιών και είναι μακροχρόνια κατάσταση. Παρά τη σοβαρότητα της κατάστασης και τις κοινωνικό‐οικονομικές της επιπτώσεις σπανίως της δίδεται προτεραιότητα. Σκοπός της εργασίας, είναι η όσο το δυνατόν καλύτερη ενημέρωση για τις ρευματοπάθειες, κυρίως στην παιδική ηλικία αλλά και με κάποιες αναφορές για τους ενήλικες. Επίσης, δίνεται έμφαση στην παροχή της απαραίτητης γνώσης, παρουσιάζοντας την πορεία της κάθε νόσου, πιο εμπεριστατωμένα, από τα πρώτα συμπτώματα έως το πλέον πιο βασικό, την ψυχολογική υποστήριξη.