Publications

What is a Publication?
213 Publications visible to you, out of a total of 213
Participation in school sports among children and adolescents with juvenile idiopathic arthritis in the German National Paediatric Rheumatologic Database, 2000–2015: results from a prospective observational cohort study

Abstract

Not specified

Authors: Florian Milatz, Jens Klotsche, Martina Niewerth, Nils Geisemeyer, Ralf Trauzeddel, Elisabeth Weißbarth-Riedel, Tilmann Kallinich, Joachim Peitz, Matthias Hartmann, Kirsten Minden

Date Published: 1st Feb 2019

Publication Type: Journal

European Network of Pregnancy Registers in Rheumatology (EuNeP)-an overview of procedures and data collection

Abstract (Expand)

BACKGROUND: The collaborative initiative of the European Network of Pregnancy Registers in Rheumatology (EuNeP) aims to combine data available in nationwide pregnancy registers to increase knowledge … on pregnancy outcomes in women with inflammatory rheumatic diseases (IRD) and on drug safety during pregnancy and lactation. The objective of this study was to describe the similarities and differences of the member registers. METHODS: From all registers, information about their structure and design was collected, as well as which parameters regarding demographics, maternal outcomes, treatment, course and outcome of pregnancy, and development of the child were available in the respective datasets. Furthermore, the current recruitment status was reported. RESULTS: The four registers (EGR2 (France), RePreg (Switzerland), RevNatus (Norway), and Rhekiss (Germany)) collect information prospectively and nationwide. Patients can be enrolled before conception or during pregnancy. To date, more than 3500 patients in total have been included, and data on 2200 pregnancies with an outcome are available. The distribution of diagnoses in the respective registers varies considerably, and only three entities (rheumatoid arthritis, psoriatic arthritis, and spondyloarthritis) are captured by all the registers. Broad consistency was found in non-disease-specific data items, but differences regarding instruments and categories as well as frequency of data collection were revealed. Disease-specific data items are less homogeneously collected. CONCLUSION: Although the registers in this collaboration have similar designs, we found numerous differences in the variables collected. This survey of the status quo of current pregnancy registers is the first step towards identifying data collected uniformly across registers in order to facilitate joint analyses. TRIAL REGISTRATION: Not applicable.

Authors: Y. Meissner, A. Strangfeld, N. Costedoat-Chalumeau, F. Forger, D. Goll, A. Molto, R. Ozdemir, M. Wallenius, R. Fischer-Betz

Date Published: 2019

Publication Type: Journal

[Long-term trends in rheumatology care : Achievements and deficits in 25 years of the German national rheumatology database]

Abstract (Expand)

BACKGROUND: Since 1993, data on the care and quality of life of patients with inflammatory rheumatic diseases have been collected in the German National Database (NDB) of the regional collaborative … rheumatology centers. OBJECTIVE: In this review long-term trends on treatment, disease activity and gainful employment of the most common inflammatory rheumatic diseases are presented and the most important analyses from 25 years of the NDB are summarized. METHODS: Between 15 and 17 rheumatological institutions take part in the core documentation and once a year collect data from a total of more than 10,000 patients. The rheumatologists document the disease status and care, the patients report on their state of health and the effects of the disease. RESULTS: The biologics era at the beginning of the twenty-first century has led to changes in the therapeutic spectrum of most inflammatory rheumatic diseases, especially in rheumatoid arthritis and ankylosing spondylitis. Some basic therapies formerly used are hardly used anymore and glucocorticoids are used less frequently. Methotrexate has remained the standard therapy for rheumatoid arthritis over the years. Nowadays, nearly 30% of patients with rheumatoid arthritis receive treatment with biologics. Disease activity, functional and social restrictions have decreased across all diseases. CONCLUSION: The improved health status of many patients with rheumatic diseases confirms the high level of care provided by the rheumatism centers involved in the NDB. The increasing specification of measuring instruments and the standardization of documentation systems are major challenges that the NDB will have to face in the coming years if it is to remain in the digital age.

Authors: K. Albrecht, J. Callhoff, A. Zink

Date Published: 2019

Publication Type: Journal

Trends in employment and hospitalisation in patients with Sjogren’s syndrome 1996-2016: results from the German National database

Abstract (Expand)

OBJECTIVES: To assess trends in treatments and outcomes in patients with primary Sjogren’s syndrome (pSS), focusing on employment, hospitalisation and medical treatment in the past two decades. METHODS: … From 1996 to 2016, approximately 300 patients with pSS were annually documented in the National Database of the German Collaborative Arthritis Centres. Data on treatment, physicians’ assessments of disease activity, patient-reported outcomes, hospitalisation and employment were collected and compared to patients with rheumatoid arthritis (RA), matched 1:1 for age, sex and disease duration for each calendar year. RESULTS: Patients with pSS (>90% female, age 44 years at disease onset, disease duration 10 years) were more frequently assessed to be in low disease activity in 2016 (93%) than in 1996 (62%), p<0.01. Treatment with antimalarials increased from 1996 to 2016 (31 to 50%, p<0.01) and less patients were on glucocorticosteroids (50 to 34%, p<0.01) but <5% were treated with biologics. Employment (<65 years) increased by 21 percentage points (43 to 64%, p<0.001), exceeding the increase observed for RA patients (+15 percentage points). Early retirement (22 to 10%, p=0.01), hospitalisation/year (13 to 7%, p=0.08) and sick leave (39% in 1997 to 27%, p=0.09) decreased comparably to RA patients. CONCLUSIONS: Overall, similar trends were observed for RA and pSS cohorts despite minor changes in pSS therapy. Work participation has improved significantly over two decades in pSS. A greater perception of pSS without systemic manifestations may have caused a shift towards less severely affected patient cohorts today.

Authors: J. Callhoff, K. Thiele, T. Dorner, A. Zink, J. G. Richter, J. Henes, K. Albrecht

Date Published: 2019

Publication Type: Journal

[Non-drug treatment of rheumatoid arthritis : An analysis of claims data and a survey of insured persons (Project PROCLAIR)]

Abstract (Expand)

BACKGROUND: Only small amounts of data are available on the prescription frequency of physical therapies (PT) for patients with rheumatoid arthritis (RA). OBJECTIVE: The aim of the study was to evaluate … prescription frequencies of PT considering functional status and sociodemographic factors. MATERIAL AND METHODS: A total of 98,963 adults diagnosed with RA in 2013 were identified in claims data from the BARMER health insurance. A questionnaire was sent to a representative sample of 6193 people requesting information on the disease status. Of these 2535 persons were included who agreed to the linking of the questionnaire and claims data and who confirmed a diagnosis of RA. From the routine claims data the prescription of PT and occupational therapy as well as the medical discipline of the prescribing physician were analyzed. Multivariable logistic regression was conducted to determine which variables (age, sex, M05/M06 diagnosis, residential area, income, functional status and rheumatological care) were associated with the use of PT. RESULTS: In 2015 a total of 47% of the study population received PT (35% physiotherapy, 15% thermotherapy, 15% manual therapy, 2% electrotherapy and 6% massage) and 3% occupational therapy. Of the PT prescriptions 37% were issued by general practitioners, 27% by orthopedists and 18% by rheumatologists. Women and persons living in the eastern states of Germany and patients with high functional impairment were prescribed PT more often. Income, educational status, seropositivity and rheumatological care did not have any influence on the frequency of prescription of PT. CONCLUSION: There are deficits in the outpatient prescription of PT but without indications of an undersupply of population groups due to low socioeconomic status. In contrast to the prescription of disease-modifying antirheumatic drug (DMARD) treatment, PT is predominantly prescribed by general practitioners.

Authors: H. Jacobs, J. Callhoff, F. Hoffmann, A. Zink, K. Albrecht

Date Published: 2019

Publication Type: Journal

Comorbidities in Patients with Rheumatoid Arthritis and Their Association with Patient-reported Outcomes: Results of Claims Data Linked to Questionnaire Survey

Abstract (Expand)

OBJECTIVE: To investigate the prevalence of comorbidities in a population-based cohort of persons with rheumatoid arthritis (RA) compared to matched controls and to examine their association with … patient-reported outcomes in a survey sample. METHODS: Data of 96,921 persons with RA [International Classification of Diseases, 10th ed (ICD-10) M05/M06] and 484,605 age- and sex-matched controls without RA of a German statutory health fund were studied regarding 26 selected comorbidities (ICD-10). A self-reported questionnaire, comprising joint counts [(tender joint count (TJC), swollen joint count (SJC)], functional status (Hannover Functional Ability Questionnaire), effect of the disease (Rheumatoid Arthritis Impact of Disease), and well-being (World Health Organization 5-item Well-Being Index; WHO-5) was sent to a random sample of 6193 persons with RA, of whom 3184 responded. For respondents who confirmed their RA (n = 2535), associations between comorbidities and patient-reported outcomes were analyzed by multivariable linear regression. RESULTS: Compared to controls, all investigated comorbidities were more frequent in persons with RA (mean age 63 yrs, 80% female). In addition to cardiovascular risk factors, the most common were osteoarthritis (44% vs 21%), depression (32% vs 20%), and osteoporosis (26% vs 9%). Among the survey respondents, 87% of those with 0-1 comorbidity but only 77% of those with >/= 8 comorbidities were treated by rheumatologists. Increasing numbers of comorbidities were associated with poorer values for TJC, SJC, function, and WHO-5. CONCLUSION: Compared to a matched population, persons with RA present with increased prevalence of numerous comorbidities. Patients with RA and multimorbidity are at risk of insufficient rheumatological care and poorer patient-reported outcomes.

Authors: A. Luque Ramos, I. Redeker, F. Hoffmann, J. Callhoff, A. Zink, K. Albrecht

Date Published: 2019

Publication Type: Journal

Perceptions of Patients, Caregivers, and Healthcare Providers of Idiopathic Inflammatory Myopathies: An International OMERACT Study

Abstract (Expand)

OBJECTIVE: Patient-reported outcome measures (PROM) that incorporate the patient perspective have not been well established in idiopathic inflammatory myopathies (IIM). As part of our goal to develop … IIM-specific PROM, the Outcome Measures in Rheumatology (OMERACT) Myositis special interest group sought to determine which aspects of disease and its effects are important to patients and healthcare providers (HCP). METHODS: Based on a prior qualitative content analysis of focus groups, an initial list of 24 candidate domains was constructed. We subsequently conducted an international survey to identify the importance of each of the 24 domains to be assessed in clinical research. Patients with IIM, their caregivers, and HCP treating IIM completed the survey. RESULTS: In this survey, a total of 638 respondents completed the survey, consisting of 510 patients, 101 HCP, and 27 caregivers from 48 countries. Overall, patients were more likely to rank "fatigue," "cognitive impact," and "difficulty sleeping" higher compared with HCP, who ranked "joint symptoms," "lung symptoms," and "dysphagia" higher. Both patients and providers rated muscle symptoms as their top domain. In general, patients from different countries were in agreement on which domains were most important. One notable exception was that patients from Sweden and the Netherlands ranked lung symptoms significantly higher compared to other countries including the United States and Australia (mean weighted rankings of 2.86 and 2.04 vs 0.76 and 0.80, respectively; p < 0.0001). CONCLUSION: Substantial differences exist in how IIM is perceived by patients compared to HCP, with different domains prioritized. In contrast, patients’ ratings across the world were largely similar.

Authors: C. A. Mecoli, J. K. Park, H. Alexanderson, M. Regardt, M. Needham, I. de Groot, C. Sarver, I. E. Lundberg, B. Shea, M. de Visser, Y. W. Song, C. O. Bingham, L. Christopher-Stine

Date Published: 2019

Publication Type: Journal

Powered by
 (v.1.17.3)

(LDH: v0.3.4)

About NFDI4Health | About Local Data Hub DRFZ Berlin | Partners and Funding | Credits | Terms & Conditions | Privacy Policy | Imprint
Copyright © 2008 - 2023 The University of Manchester and HITS gGmbH
Additions copyright ...