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OBJECTIVES: Early diagnosis of inflammatory arthritis is critical to prevent joint damage and functional incapacities. However, the discrepancy between recommendations of early diagnosis and reality is remarkable. The Rheuma-VOR study aimed to improve the time to diagnosis of patients with early arthritis by coordinating cooperation between primary care physicians, specialists and patients in Germany. METHODS: This prospective non-randomised multicentre study involved 2340 primary care physicians, 72 rheumatologists, 4 university hospitals and 4 rheumatology centres in 4 German Federal States. The two coprimary endpoints (time to diagnosis and screening performance of primary care physicians) were evaluated for early versus late implementation phase. Additionally, time to diagnosis and secondary endpoints (decrease of disease activity, increase in quality of life and overall well-being, improvement of fatigue, depression, functional ability, and work ability, reduction in drug and medical costs and hospitalisation) were compared with a reference cohort of the German Rheumatism Research Centre (DRFZ) reflecting standard care. RESULTS: A total of 7049 patients were enrolled in the coordination centres and 1537 patients were diagnosed with a rheumatic disease and consented to further participation. A follow-up consultation after 1 year was realised in 592 patients. The time to diagnosis endpoint and the secondary endpoints were met. In addition, the calculation of cost-effectiveness shows that Rheuma-VOR has a dominant cost-benefit ratio compared with standard care. DISCUSSION: Rheuma-VOR has shown an improvement in rheumatological care, patient-reported outcome parameters and cost savings by coordinating the cooperation of primary care physicians, rheumatologists and patients, in a nationwide approach.
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Artritis Reumatoide , Enfermedades Reumáticas , Humanos , Artritis Reumatoide/diagnóstico , Calidad de Vida , Estudios Prospectivos , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/terapia , Atención a la SaludRESUMEN
The aim of this study is to present the current care situation of patients with giant cell arteritis (GCA), Takayasu arteritis (TAK), ANCA-associated vasculitis (AAV) and Behçet's disease (BD). Trends over the last 15 years will reflect improvements and remaining deficits in the management of vasculitides. Consecutive cross-sectional data from patients with vasculitides from the German National Database (NDB) of the Collaborative Arthritis Centres between 2007 and 2021 were included. Medication, physician- and patient-reported outcomes on disease activity and disease burden, inpatient stays and occupational participation are compared for different vasculitis entities and over time. Employment rates were compared to German population rates. Between 502 and 854 vasculitis patients were annually documented. GCA and AAV were the most common vasculitides. Median disease duration ranged from 2 to 16 years. Over the years, glucocorticoids decreased in proportion and dose, most markedly in GCA and TAK, while biologic therapies increased up to 27%. Physicians rated disease activity as low for the vast majority of patients, while patients-reported moderate outcomes in many dimensions. PROs remained largely unchanged. The proportion of employed patients (< 65 years) increased from 47 to 57%. In recent years, biologics are increasingly used in patients with vasculitides, while glucocorticoids decreased significantly. PRO's have not improved. Work participation increased but remains lower than that in the German population.
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Vasculitis Asociada a Anticuerpos Citoplasmáticos Antineutrófilos , Síndrome de Behçet , Arteritis de Células Gigantes , Arteritis de Takayasu , Humanos , Arteritis de Células Gigantes/tratamiento farmacológico , Arteritis de Células Gigantes/epidemiología , Síndrome de Behçet/diagnóstico , Síndrome de Behçet/tratamiento farmacológico , Síndrome de Behçet/epidemiología , Arteritis de Takayasu/tratamiento farmacológico , Arteritis de Takayasu/epidemiología , Estudios Transversales , Vasculitis Asociada a Anticuerpos Citoplasmáticos Antineutrófilos/tratamiento farmacológico , Vasculitis Asociada a Anticuerpos Citoplasmáticos Antineutrófilos/epidemiología , Glucocorticoides/uso terapéutico , Atención a la Salud , Células GigantesRESUMEN
OBJECTIVE: This study aimed to update the prevalence estimates of inflammatory rheumatic diseases (IRD) in Germany. METHODS: A systematic literature search in PubMed and Web of Science (last search 08 November 2022) identified original articles (regional and nationwide surveys and claims data analyses for arthritides, connective tissue diseases, and vasculitides) on prevalences for the period 2014-2022. Data sources, collection period, case definition, and risk of bias are reported. Prevalences were estimated from available national data, with consideration of international data. RESULTS: Screening by two authors yielded 263 hits, of which 18 claims data analyses and 2 surveys met the inclusion criteria. Prevalences ranged from 0.42 to 1.85% (rheumatoid arthritis), 0.32-0.5% (ankylosing spondylitis), 0.11-0.32% (psoriatic arthritis), 0.037-0.14% (systemic lupus erythematosus), 0.07-0.77% (Sjögren's disease/sicca syndrome), 0.14-0.15% (polymyalgia rheumatica, ≥â¯40 years), 0.04-0.05% (giant cell arteritis, ≥â¯50 years), and 0.015-0.026% (ANCA-associated vasculitis). The risk of bias was moderate in 13 and high in 7 studies. Based on the results, we estimate the prevalence of IRD in Germany to be 2.2-3.0%, which corresponds to approximately 1.5-2.1 million affected individuals. The prevalence of juvenile idiopathic arthritis was reported to be around 0.10% (0.07-0.10%) of 0-18-year-olds, corresponding to about 14,000 children and adolescents in Germany. CONCLUSION: This systematic review shows an increase in the prevalence of IRD in Germany, which is almost exclusively based on claims data analyses. In the absence of multistage population studies, the available data are, overall, uncertain sources for prevalence estimates, with a moderate to high risk of bias.
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Artritis Reumatoide , Arteritis de Células Gigantes , Lupus Eritematoso Sistémico , Polimialgia Reumática , Enfermedades Reumáticas , Fiebre Reumática , Síndrome de Sjögren , Espondilitis Anquilosante , Niño , Adolescente , Humanos , Prevalencia , Artritis Reumatoide/epidemiología , Espondilitis Anquilosante/diagnóstico , Espondilitis Anquilosante/epidemiología , Síndrome de Sjögren/epidemiología , Lupus Eritematoso Sistémico/epidemiología , Arteritis de Células Gigantes/epidemiología , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/epidemiologíaRESUMEN
In the National database (NDB) of the German regional collaborative arthritis centres, annual data on the rheumatological care of patients with inflammatory rheumatic diseases have been collected since 1993. This first annual report presents current cross-sectional data on medication and patient-reported outcomes gathered in 2022.
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OBJECTIVE: To evaluate different algorithms for the identification of rheumatoid arthritis (RA) in claims data using patient-reported diagnosis as reference. METHODS: Within longitudinal data from a large German statutory health insurance, we selected a random sample of persons with ICD-10 code for RA (M05/M06) in ≥2 quarters in 2013. The sample was stratified for age, sex, and M05/M06. Persons were asked to confirm RA diagnosis (gold standard), which was linked to claims data given consent. Analyses were weighted to represent the total RA population of the database. Positive predictive values (PPVs) and discriminative properties were calculated for different algorithms: ICD-10 code only, additional examination of inflammatory markers, prescription of specific medication, rheumatologist appointment, or combination of these. RESULTS: Of 6193 persons with a claims diagnosis of RA, 3184 responded (51%). Overall, PPV for the ICD-10 code was 81% (95% confidence interval 79%-83%) with 94% (92%-95%) for M05 and 76% (73%-79%) for M06. PPVs increased (with loss of case numbers) if inflammatory markers (82% [80%-84%]), rheumatology visits (85% [82%-87%]) or specific medication (89% [87%-91%]) had been used in addition. Specific medication had the best discriminative properties (diagnostic odds ratio of 3.0) among persons with RA diagnosis. CONCLUSIONS: The ICD-10 codes M05 and (less optimal) M06 have high PPVs and are valuable to identify RA in German claims data. Depending on the respective research question, researchers should use different criteria for identification of RA.
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Artritis Reumatoide , Humanos , Estudios Transversales , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/tratamiento farmacológico , Artritis Reumatoide/epidemiología , Programas Nacionales de Salud , Algoritmos , Bases de Datos Factuales , Medición de Resultados Informados por el PacienteRESUMEN
The long-term outcome of connective tissue diseases is associated with the time from symptom onset to diagnosis. To understand gaps in care, we determine whether the length of time between symptom onset and first presentation to a rheumatologist has changed in Germany in recent decades. We analyzed data on patients diagnosed with connective tissue diseases (n = 19,662) collected from the German National Database of the Regional Cooperative Rheumatology Centers. We reviewed the onset of relevant symptoms listed at first presentations from 1993 to 2018 and performed a quantitative analysis of the intervals until first presentation to a rheumatologist. We compared time intervals and performed a linear mixed regression model with random effects to identify associated factors. Although the interval between the onset of symptoms and first presentation to a rheumatologist has diminished since 1980 for all connective tissue diseases, there has been no relevant improvement during the past 2 decades. The interval between symptoms and presentation increases with patients age for all connective tissue diseases (e.g., Systemic sclerosis; for each 10-year-increment of patients age: ß 0.41, CI 0.38; 0.44). Among those diagnosed with systemic sclerosis, the mean interval was 1.5 years (95% CI 1.1; 1.8) for male patients and 2.6 years (95% CI 2.4; 2.8) for females. Patients presenting with different degrees of disease severity on their first visits and with different educational levels had similar mean intervals between symptoms and first presentation regardless of their final diagnoses. Over the past 2 decades, the time to first consultation with a rheumatologist has not continued to improve in Germany, but has stagnated at the same level. Selected patient subgroups, such as older patients with suspected connective tissue diseases and female patients with suspected systemic sclerosis, are at risk to present late and may in particular benefit from an earlier referral to a rheumatologist.
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Artritis , Enfermedades del Tejido Conjuntivo , Reumatología , Esclerodermia Sistémica , Humanos , Masculino , Femenino , Reumatólogos , Enfermedades del Tejido Conjuntivo/diagnósticoRESUMEN
OBJECTIVE: To update the estimated prevalence of inflammatory rheumatic diseases (IRD) in Germany. METHODS: A systematic literature search in PubMed and Web of Science (last search 8 November 2022) identified original articles (regional and nationwide surveys and routine data analyses for arthritides, connective tissue diseases, and vasculitides) on the prevalence for the period 2014-2022. Data sources, collection period, case definition, and risk of bias are reported. The prevalences were estimated from available national data, with consideration of international data. RESULTS: Screening by 2 authors yielded 263 hits, of which 18 routine data analyses and 2 surveys met the inclusion criteria. Prevalence data ranged from 0.42% to 1.85% (rheumatoid arthritis), 0.32-0.5% (ankylosing spondylitis), 0.11-0.32% (psoriatic arthritis), 0.037-0.14% (systemic lupus erythematosus), 0.07-0.77% (Sjoegren's disease/sicca syndrome), 0.14-0.15% (polymyalgia rheumatica, ≥â¯40 years), 0.04-0.05% (giant cell arteritis, ≥â¯50 years), and 0.015-0.026% (ANCA-associated vasculitis). The risk of bias was moderate in 13 and high in 7 studies. Based on the results, we estimate the prevalence of IRD in Germany to be 2.2-3.0%, which corresponds to approximately 1.5-2.1 million affected individuals. Prevalence data of juvenile idiopathic arthritis was reported to be around 0.10% (0.07-0.10%) of patients 0-18 years old, corresponding to about 14,000 children and adolescents in Germany. CONCLUSION: This systematic review shows an increase in the prevalence of IRD in Germany, which is almost exclusively based on routine data analyses. In the absence of multistage population studies, the available data are overall uncertain sources for prevalence estimates at moderate to high risk of bias.
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Artritis Juvenil , Artritis Reumatoide , Arteritis de Células Gigantes , Enfermedades Reumáticas , Fiebre Reumática , Síndrome de Sjögren , Espondilitis Anquilosante , Niño , Adolescente , Humanos , Recién Nacido , Lactante , Preescolar , Prevalencia , Artritis Reumatoide/epidemiología , Espondilitis Anquilosante/diagnóstico , Espondilitis Anquilosante/epidemiología , Artritis Juvenil/epidemiología , Síndrome de Sjögren/epidemiología , Arteritis de Células Gigantes/epidemiología , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/epidemiologíaRESUMEN
The national database (NDB) of the German regional collaborative rheumatology centers was switched to the RheMIT documentation software last year. Rheumatology centers that already use RheMIT for care contracts or other research projects can therefore use the software to also participate in the NDB. Experiences from a hospital, a medical care center and a specialist practice show how the changeover to RheMIT from an existing documentation system or a new participation in the NDB with RheMIT can be implemented. The NDB team at the German Rheumatism Research Center in Berlin (DRFZ) welcomes new participating rheumatology centers.
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Enfermedades Reumáticas , Reumatología , Humanos , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/epidemiología , Enfermedades Reumáticas/terapia , Bases de Datos Factuales , Berlin , Documentación , AlemaniaRESUMEN
BACKGROUND: Digital health applications/apps (DiGA) are entering many medical disciplines and have the potential to revolutionize patient care. In rheumatology, the use for axial spondyloarthritis (axSpA) would be conceivable in the form of an exercise app. Therefore, a representative survey among axSpA patients was conducted to determine the need for an axSpA exercise app. MATERIALS AND METHODS: An anonymous online survey among axSpA patients of the German Bechterew's Disease Association was conducted using a questionnaire; data were analysed using Excel, and GraphPad Prism. RESULTS: Four hundred and thirty-five axSpA patients participated in the survey. Eighty-four percent of the participants responded that there is a need to develop an axSpA-specific exercise app, and the same proportion want to use it. Patients under 60 years, patients under 60 years on biologics or Janus kinase inhibitor therapy, and patients with frequent back pain reported a greater need than their respective control subgroups (pâ¯< 0.001 in each case). CONCLUSION: The development of an exercise app for axSpA is considered necessary by a large proportion of the patients; younger and more intensively treated patients appear to have a greater need.
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Aplicaciones Móviles , Reumatología , Espondiloartritis , Espondilitis Anquilosante , Humanos , Espondiloartritis/terapia , Espondilitis Anquilosante/complicaciones , Encuestas y CuestionariosRESUMEN
Symptom checkers are increasingly used to assess new symptoms and navigate the health care system. The aim of this study was to compare the accuracy of an artificial intelligence (AI)-based symptom checker (Ada) and physicians regarding the presence/absence of an inflammatory rheumatic disease (IRD). In this survey study, German-speaking physicians with prior rheumatology working experience were asked to determine IRD presence/absence and suggest diagnoses for 20 different real-world patient vignettes, which included only basic health and symptom-related medical history. IRD detection rate and suggested diagnoses of participants and Ada were compared to the gold standard, the final rheumatologists' diagnosis, reported on the discharge summary report. A total of 132 vignettes were completed by 33 physicians (mean rheumatology working experience 8.8 (SD 7.1) years). Ada's diagnostic accuracy (IRD) was significantly higher compared to physicians (70 vs 54%, p = 0.002) according to top diagnosis. Ada listed the correct diagnosis more often compared to physicians (54 vs 32%, p < 0.001) as top diagnosis as well as among the top 3 diagnoses (59 vs 42%, p < 0.001). Work experience was not related to suggesting the correct diagnosis or IRD status. Confined to basic health and symptom-related medical history, the diagnostic accuracy of physicians was lower compared to an AI-based symptom checker. These results highlight the potential of using symptom checkers early during the patient journey and importance of access to complete and sufficient patient information to establish a correct diagnosis.
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Inteligencia Artificial , Reumatología , Humanos , Reumatólogos , Encuestas y CuestionariosRESUMEN
A growing number of health insurance data analyses show an increase in the prevalence of rheumatoid arthritis (RA) in Germany. The studies refer to the claims diagnosis of RA, which is more frequent in recent years compared to earlier periods. Depending on the case definition, the numbers vary between 0.6% and 1.4% of the adult population. In this paper, the different studies are reviewed with regard to their data sources, the case definitions of RA and the frequency of the diagnosis. Due to the lack of clinical validation, the prevalence cannot be precisely determined from claims data.
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Artritis Reumatoide , Adulto , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/epidemiología , Alemania/epidemiología , Humanos , Seguro de Salud , PrevalenciaRESUMEN
OBJECTIVE: To investigate the frequency of outpatient physical therapy (PT) in persons with rheumatoid arthritis (RA), axial spondylarthritis (axSpA), psoriatic arthritis (PsA) or systemic lupus erythematosus (SLE) between 2005 and 2020. METHODS: Adult insured persons of the BARMER health insurance fund with a diagnosis of RA (ICD-10: M05, M06), axSpA (M45), PsA (M07.0-3) or SLE (M32.1,8,9) were included. The prescription of PT was identified via the national item number index for therapeutic products. The proportion of persons with at least 1 prescription in the years 2005 to 2020 is reported as well as PT prescriptions by age and gender groups. In addition, the number and duration of prescriptions were compared and it was analyzed whether persons in specialist care received PT more frequently. RESULTS: In 2020, 43% (SLE), 46% (RA, PsA) and 49% (axSpA) received at least 1 PT prescription. Physiotherapy was prescribed most frequently (37%), followed by manual therapy (14%) and thermotherapy (10%). Since 2005 the number of insured persons receiving PT has not changed. Manual therapy is increasingly prescribed (+7%), while massage (-10%), thermotherapy (-7%) and electrotherapy (3% in 2005, 2% in 2020) have been decreasing (data relating to RA). The number of prescriptions has not relevantly changed since 2010. Persons in orthopedic care received PT more frequently than persons in general or rheumatological care. Female patients 61-80 years old were most frequently treated with PT. CONCLUSION: Slightly less than half of all persons with an RA, axSpA, PsA or SLE diagnosis received outpatient PT. This proportion has hardly changed in the last 15 years.
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Artritis Psoriásica , Artritis Reumatoide , Lupus Eritematoso Sistémico , Fiebre Reumática , Adulto , Anciano , Anciano de 80 o más Años , Artritis Psoriásica/diagnóstico , Artritis Psoriásica/epidemiología , Artritis Psoriásica/terapia , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/epidemiología , Artritis Reumatoide/terapia , Femenino , Humanos , Persona de Mediana Edad , Modalidades de Fisioterapia , PrescripcionesRESUMEN
The scientific focus of the DRFZ's Programme Area Epidemiology and Health Services Research is, on the one hand, investigating the health care situation of people with rheumatic diseases in Germany, including its deficits, progress and trends. On the other hand, an essential goal is to uncover risk factors for unfavourable disease trajectories, but also protective factors, through the long-term observation of disease courses in large cohorts. With the approval of innovative, targeted therapies at the beginning of this millennium, the question of the real-world safety and effectiveness of the various anti-rheumatic therapies became a key issue for doctors and patients. The biologics registers have developed into central instruments of the programme area, which enable questions on comparative drug safety, but also on therapy effectiveness and risk reduction through effective therapy, to be answered in a robust manner.In this article, selected results of epidemiological research at the DRFZ are presented. The overall goal of the research was and is to contribute to improving the quality of life of children and adults with rheumatic and musculoskeletal diseases. This is the purpose of clinical-evaluative health services research as well as the acquisition of knowledge that supports effective, individualised therapy. Large, long-term patient cohorts and a stable network with clinical rheumatologists and those affected have proven to be indispensable instruments.
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Productos Biológicos , Enfermedades Reumáticas , Adulto , Productos Biológicos/uso terapéutico , Niño , Alemania/epidemiología , Investigación sobre Servicios de Salud , Humanos , Calidad de Vida , Enfermedades Reumáticas/tratamiento farmacológico , Enfermedades Reumáticas/terapiaRESUMEN
OBJECTIVES: To capture comorbidity and medication of persons with Sjögren's syndrome (SS) in a population-based cohort in comparison to matched controls. METHODS: Individuals with an outpatient diagnosis of M35.0 (ICD-10) in ≥2 quarters of a year or an inpatient diagnosis of M35.0 were identified in a German statutory health insurance fund covering 7.2 million people. Persons in rheumatologic care were grouped by incident or prevalent diagnosis and by co-existing autoimmune disease (sSS) or primary (p)SS and compared to age- and sex-matched controls regarding comorbidity (ICD-10), medical prescriptions, hospitalisation and inability to work in the previous year. RESULTS: In 2018, 7,283 persons (0.10%) had incident and 54,273 persons (0.75%) prevalent SS diagnosis, and 5,961 (11%) were in rheumatologic care. Of these (90% female, mean age 66 years), 3,457 (58%) had further autoimmune disease (sSS), mostly rheumatoid arthritis (80%) and systemic lupus erythematosus (13%). Compared to controls, frequent comorbid conditions in SS were hypertension (controls: 52%, pSS: 55%, sSS: 63%), osteoarthritis (22%/40%/47%), osteoporosis (10%/26%/38%) and depression (21%/34%/36%). Systemic antirheumatic drugs were prescribed in 31% (pSS) and 66% (sSS) while < 5% received topical therapies. Glucocorticoids (8%/34%/59%), NSAIDs (28%/41%/45%), opioids (8%/15%/21%), analgesics (19%/30%/36%) and antidepressants (14%/21%/21%) were frequently prescribed. Compared to controls, hospitalisation (21%/32%/39%) and inability to work in persons <65 years (41%/48%/44%, median days 17/24/30) were more frequent in pSS and sSS than in controls. CONCLUSIONS: SS claims diagnosis is associated with substantial comorbidity and frequent prescription of anti-inflammatory drugs, analgesics and antidepressants. The individual and societal burden of SS shows that, in addition to effective treatment strategies, intensive attention to comorbidities is important in this disease.
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Artritis Reumatoide , Enfermedades Autoinmunes , Síndrome de Sjögren , Anciano , Comorbilidad , Análisis de Datos , Femenino , Humanos , Masculino , Síndrome de Sjögren/diagnóstico , Síndrome de Sjögren/tratamiento farmacológico , Síndrome de Sjögren/epidemiologíaRESUMEN
The original article can be found online.
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Osteoporosis is a frequent comorbidity in rheumatoid arthritis (RA). Due to the improved treatment options for RA, we expect a long-term decrease in osteoporosis as an accompanying disease. Data from the German National Database (NDB) were used to investigate whether the frequency of osteoporosis has changed in the last 10 years. From 2007 to 2017, approximately 4000 patients were documented annually with data on therapy and comorbidity. The cross-sectional data were summarised descriptively. Age, sex, disease duration, disease activity and glucocorticoids were considered as influencing factors. The Cochrane-Armitage test for trend was used to test whether the frequency of osteoporosis at the first visit changed from 2007 to 2017. Osteoporosis frequency in RA patients (mean age 63 years, 75% female) decreased from 20% in 2007 to 6% in 2017 (p < 0.001). The decrease affected women (22% to 17%) and men (14% to 8%) in all age groups and both short-term (≤ 2-year disease duration: 9% to 3%) and long-term RA patients (> 10-year disease duration: 28% to 20%). Patients with high disease activity and patients who took glucocorticoids (GC) were more often affected by osteoporosis than patients in remission or without GC. Drug prophylaxis in patients without osteoporosis increased (20% to 41% without GC, 48% to 55% with GC). Men with GC received less prophylactic treatment than women (48% vs. 57% in 2017). In this cohort, osteoporosis in patients with RA is less frequently observed compared to former years. RA-specific risk factors for osteoporosis such as disease activity and GC therapy have declined but long-term GC use is still present. Assessment of osteoporosis in RA patients should be investigated more consistently by bone density measurement. Male RA patients still need to be given greater consideration regarding osteoporosis drug prophylaxis, especially when GC therapy is needed.
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Artritis Reumatoide/epidemiología , Osteoporosis/epidemiología , Adulto , Anciano , Artritis Reumatoide/tratamiento farmacológico , Comorbilidad , Estudios Transversales , Bases de Datos Factuales , Progresión de la Enfermedad , Femenino , Alemania/epidemiología , Glucocorticoides/administración & dosificación , Glucocorticoides/efectos adversos , Humanos , Masculino , Persona de Mediana Edad , PrevalenciaRESUMEN
OBJECTIVE: To describe trends in outcomes among patients with idiopathic inflammatory myopathies (IIM) over two decades. METHODS: From 1997 to 2017, a total of 1079 IIM patients were documented in the National Database of the German Collaborative Arthritis Centers. Annual cross-sectional data on treatment, disease activity, patient-reported outcomes, hospitalization and employment were compared across the years. Information on phenotypes, organ manifestations and autoantibodies was collected for a subset to compare the assessment of global health, pain, fatigue and sleeping disorders. RESULTS: In 2017, significantly more IIM patients were assessed to be in low disease activity (94%) than in 1997 (59%), p < 0.01. Pain (p = 0.001), global health (p = 0.049), fatigue (p = 0.03) and sleeping disorders (p = 0.01) also improved since recording. Glucocorticoid use decreased from 84 to 58% (p < 0.01). Employment in patients < 65 years remained unchanged (53%), while early retirement (23-9%), hospitalization/year (34-18%) and sick leave (52-24%) decreased. A total of 186 patients with information on subtypes were classified as polymyositis (44%), dermatomyositis (33%), anti-synthetase syndrome (10%), overlapping-myositis (8%), inclusion body myositis (2%), necrotizing myositis (0.5%) and unspecific (3%). The most frequently reported symptoms were limitations in global health (60%), fatigue (57%) and sleeping disorders (51%), and all of them were most frequent in overlap-myositis. Pulmonary hypertension and cardiomyopathy were associated with poor outcomes regarding global health, daily activities and fatigue. CONCLUSION: IIM patients report better outcomes than 20 years ago, along with good physician-reported disease control. Global health, fatigue and sleeping disorders are relevant patient-reported domains in IIM.
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Fatiga/epidemiología , Miositis/epidemiología , Medición de Resultados Informados por el Paciente , Trastornos del Sueño-Vigilia/epidemiología , Estudios Transversales , Bases de Datos Factuales , Fatiga/etiología , Femenino , Alemania/epidemiología , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Miositis/clasificación , Dimensión del Dolor/estadística & datos numéricos , Índice de Severidad de la Enfermedad , Trastornos del Sueño-Vigilia/etiologíaRESUMEN
BACKGROUND: A great heterogeneity in total joint replacement (TJR) rates has been reported for osteoarthritis (OA), most likely arising from a gap between patients' and physicians' views on the need for TJR. The purpose of this study therefore was to analyze potential cofactors which might influence the desire of patients to undergo TJR and physicians' willingness to discuss surgery with their patients. METHODS: A total of 8995 patients in Germany with a claims data diagnosis of hip or knee OA or polyarthrosis were asked to complete a questionnaire for this cross-sectional study of sociodemographic factors, indicators of current joint function (WOMAC score), willingness to undergo TJR and whether they had already discussed TJR with a physician. The overall response rate was 40%. Responders with polyarthrosis and individuals without current or chronic symptoms in the corresponding joints, pain in already replaced joints or simultaneous symptomatic hip and knee OA were excluded. We linked the survey results to claims data. Separate logistic regression models were used to assess which parameters were associated with patients' willingness to undergo TJR and physicians' discussion of surgery. RESULTS: We analyzed 478 hip OA and 932 knee OA patients. Just 17% with hip OA and 14% with knee OA were willing to undergo TJR, although 44 and 45% had already discussed surgery with their physicians. Patients' willingness was associated with higher WOMAC scores, a deterioration of symptoms over the last 2 years, and previous TJR for another joint. The discussion with a physician was influenced by the impact on personal life and previous arthroplasty. Older age (odds Ratio (OR) 1.2 per 10 years), male sex (OR 0.69 vs female), longer symptom duration (OR 1.08 per 5 years), deterioration of symptoms (OR 2.0 vs no change/improvement), a higher WOMAC score (OR 1.3 per 10% deterioration) and reduced well-being (OR 1.1 per 10% deterioration) were associated with physician discussion in knee OA patients. CONCLUSIONS: The proportion of patients willing to undergo TJR is lower than the proportion in whom physicians discuss surgery. While previous TJR seems to enhance patients' and surgeons' willingness, the influence of other cofactors is heterogeneous.
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Artroplastia de Reemplazo de Cadera/estadística & datos numéricos , Artroplastia de Reemplazo de Rodilla/estadística & datos numéricos , Osteoartritis de la Cadera/cirugía , Osteoartritis de la Rodilla/cirugía , Prioridad del Paciente/psicología , Anciano , Estudios Transversales , Toma de Decisiones , Femenino , Alemania , Necesidades y Demandas de Servicios de Salud , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Osteoartritis de la Cadera/diagnóstico , Osteoartritis de la Rodilla/diagnóstico , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
BACKGROUND: Musculoskeletal diseases and symptoms are very common in the general population. They lead to high healthcare costs and pose a significant burden to the national economy. OBJECTIVES: Based on data from the population-based German National Cohort (GNC), frequencies of musculoskeletal symptoms and diseases are reported, including back pain, osteoporosis, osteoarthritis, and arthritis. MATERIALS AND METHODS: Data were collected from March 2014 to March 2017 in adults aged 20-75 years during the first half of the baseline survey of the GNC. The sample comprised 101,779 interviewed subjects, including 9370 subjects who underwent clinical musculoskeletal examinations. The interview included questions about specific musculoskeletal disorders. A clinical examination of the hand provided information about palpable swollen joints and pressure-sensitive joints. Resting pain of the knees and hips was also assessed by a clinical examination. Frequencies were standardized to the German standard population of the year 2011. RESULTS: Having ever been diagnosed with recurrent back pain (22.5%) or osteoarthritis (20.6%) were the most common complaints reported in the interview; osteoporosis (2.9%) and rheumatoid arthritis (1.9%) were stated more seldom. According to the hand examination, 6.0% of all participants experienced pain in at least one finger joint. Resting pain was present in at least one knee among 8.2% and in at least one hip among 5.1% of the participants as assessed during the clinical examination. Women were more likely to report musculoskeletal disorders and symptoms than men. The proportion of adults affected by musculoskeletal diseases increased strongly with age. CONCLUSION: Musculoskeletal disorders and symptoms occur frequently. The burden of complaints and diagnoses is comparable to previous population-based surveys.
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Enfermedades Musculoesqueléticas/epidemiología , Adulto , Anciano , Dolor de Espalda/epidemiología , Femenino , Alemania/epidemiología , Humanos , Masculino , Persona de Mediana Edad , Osteoartritis/epidemiología , Prevalencia , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVES: The objective of this study was to assess the current diagnostic delay in axial SpA (axSpA) and to analyse factors associated with it. METHODS: A stratified sample of subjects with a diagnosis of axSpA (International Classification of Diseases, 10th Revision code M45) was drawn from health insurance data in Germany and was questioned on disease-related, lifestyle and socio-economic characteristics. The diagnostic delay was calculated as the time from back pain onset until a diagnosis of axSpA. A multivariable linear regression analysis was performed to explore factors associated with the diagnostic delay. RESULTS: Among 1677 patients with axSpA included in the analysis, the mean diagnostic delay was 5.7 years (median 2.3). Of those, 407 patients were diagnosed in 1996-2005 and 484 patients in 2006-2015. The mean diagnostic delay was not substantially different in both periods: 6.3 years (median 2.6) and 7.4 (2.7), respectively. Multivariable linear regression revealed that female sex [ß = 1.85 (95% CI 1.06, 2.65)], negative HLA-B27 status [ß = 3.61 (95% CI 2.07, 5.14)], presence of psoriasis [ß = 1.40 (95% CI 0.08, 2.73)] and younger age at symptom onset [ß = 1.91 (95% CI 1.53, 2.29)] were factors associated with a longer diagnostic delay. CONCLUSION: The diagnostic delay in axSpA is still unacceptably long. Patients who are female, young at symptom onset, HLA-B27 negative or have psoriasis have a longer diagnostic delay. Specific referral strategies might be necessary in order to decrease the diagnostic delay in patients presenting with these characteristics.