In search of the true inception cohort

1987 ◽  
Vol 40 (9) ◽  
pp. 881-885 ◽  
Author(s):  
K.L. Ales ◽  
M.E. Charlson
Keyword(s):  
2015 ◽  
Vol 24 (3) ◽  
pp. 287-292 ◽  
Author(s):  
Petra A. Golovics ◽  
Laszlo Lakatos ◽  
Michael D. Mandel ◽  
Barbara D. Lovasz ◽  
Zsuzsanna Vegh ◽  
...  

Background & Aims: Limited data are available on the hospitalization rates in population-based studies. Since this is a very important outcome measure, the aim of this study was to analyze prospectively if early hospitalization is associated with the later disease course as well as to determine the prevalence and predictors of hospitalization and re-hospitalization in the population-based ulcerative colitis (UC) inception cohort in the Veszprem province database between 2000 and 2012. Methods: Data of 347 incident UC patients diagnosed between January 1, 2000 and December 31, 2010 were analyzed (M/F: 200/147, median age at diagnosis: 36, IQR: 26-50 years, follow-up duration: 7, IQR 4-10 years). Both in- and outpatient records were collected and comprehensively reviewed. Results: Probabilities of first UC-related hospitalization were 28.6%, 53.7% and 66.2% and of first re-hospitalization were 23.7%, 55.8% and 74.6% after 1-, 5- and 10- years of follow-up, respectively. Main UC-related causes for first hospitalization were diagnostic procedures (26.7%), disease activity (22.4%) or UC-related surgery (4.8%), but a significant percentage was unrelated to IBD (44.8%). In Kaplan-Meier and Cox-regression analysis disease extent at diagnosis (HR extensive: 1.79, p=0.02) or at last follow-up (HR: 1.56, p=0.001), need for steroids (HR: 1.98, p<0.001), azathioprine (HR: 1.55, p=0.038) and anti-TNF (HR: 2.28, p<0.001) were associated with the risk of UC-related hospitalization. Early hospitalization was not associated with a specific disease phenotype or outcome; however, 46.2% of all colectomies were performed in the year of diagnosis. Conclusion: Hospitalization and re-hospitalization rates were relatively high in this population-based UC cohort. Early hospitalization was not predictive for the later disease course.


2021 ◽  
pp. 1-8
Author(s):  
Charles Kassardjian ◽  
Jessica Widdifield ◽  
J. Michael Paterson ◽  
Alexander Kopp ◽  
Chenthila Nagamuthu ◽  
...  

Background: Prednisone is a common treatment for myasthenia gravis (MG), and osteoporosis is a known potential risk of chronic prednisone therapy. Objective: Our aim was to evaluate the risk of serious fractures in a population-based cohort of MG patients. Methods: An inception cohort of patients with MG was identified from administrative health data in Ontario, Canada between April 1, 2002 and December 31, 2015. For each MG patient, we matched 4 general population comparators based on age, sex, and region of residence. Fractures were identified through emergency department and hospitalization data. Crude overall rates and sex-specific rates of fractures were calculated for the MG and comparator groups, as well as rates of specific fractures. Adjusted hazard ratios (HRs) and 95% confidence intervals (CIs) were estimated using Cox regression. Results: Among 3,823 incident MG patients (followed for a mean of 5 years), 188 (4.9%) experienced a fracture compared with 741 (4.8%) fractures amongst 15,292 matched comparators. Crude fracture rates were not different between the MG cohort and matched comparators (8.71 vs. 7.98 per 1000 patient years), overall and in men and women separately. After controlling for multiple covariates, MG patients had a significantly lower risk of fracture than comparators (HR 0.74, 95% CI 0.63–0.88). Conclusions: In this large, population-based cohort of incident MG patients, MG patients were at lower risk of a major fracture than comparators. The reasons for this finding are unclear but may highlight the importance osteoporosis prevention.


2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 369.1-369
Author(s):  
N. Singh ◽  
A. Peterson ◽  
A. Baraff ◽  
A. Korpak ◽  
M. Vaughan-Sarrazin ◽  
...  

Background:Epidemiologic studies suggest that disease duration and degree of inflammatory activity of rheumatoid arthritis (RA) contribute to lymphoma development. However, the association of the use of biologic disease modifying anti-rheumatic drugs (bDMARDs) in patients with RA on lymphoma risk needs further evaluation.Objectives:Examine the effect of administration of bDMARDS on the incidence of lymphoma in an inception cohort of RA.Methods:We identified patients diagnosed with RA in any US Veterans Affairs (VA) facility from 1/1/2002 and 12/31/2018 using the Veteran’s Health Administration (VHA) databases. To be included, each patient was required to meet the following criteria: 1) 2+ RA diagnostic codes at least 7 days apart but no more than 365 days apart 2) a prescription for a conventional synthetic DMARD (csDMARD) within 90 days of the first RA diagnosis 3) One inpatient or outpatient visit 30 days to 2 years preceding first RA diagnosis (indicating they are a regular user of the VHA). We excluded patients for any of the following if they preceded the first RA diagnosis: 1) a prior single RA diagnostic code 2) a prescription for any DMARD medication 3) a concomitant diagnosis of another inflammatory arthritis (e.g. psoriatic arthropathy) 4) a diagnosis of lymphoma. Index date for the study is the date of the first qualifying RA diagnosis. Lymphoma diagnoses were identified through VHA records using the International Classification of Diseases-Oncology codes.Results:We identified 27,536 veterans with RA in the study period meeting the inclusion and exclusion criteria. Of these, 53% (n=14,705) were in the age range 60 to 80 years. The cohort was 89% male, 75.5% White, 13.7% African American. Over the study period, 1.2% (n=332) of the study population developed a lymphoma.Conclusion:Using the nationwide VHA we have identified a large inception cohort of patients with RA of whom 1.2% developed lymphoma over study follow-up. This data will be used in future analyses to produce estimates of the effect of biologic medications on lymphoma risk, adjusting for confounding by indication and other variables.Table 1.Baseline characteristics of the cohort based on bDMARD exposure statusCharacteristicbDMARD-naive (n= 19,095)bDMARD-exposed (n=8,441)Overall Lymphomas Age (years)171161 18-4046 40-606378 60-8010074 >8043 Males17,206 (90%)7,270 (86%)Race White14,150 (74%)6,627 (76%) Black2,674 (14%)1,090 (13%) Asian96 (0.5%)46 (0.5%) Native American or Pacific Islander371 (2%)187 (2.2%) Missing1,804 (9%)491 (6%)Acknowledgements:The work in this abstract is supported by Investigator Award from the Rheumatology Research Foundation to Dr Singh.Disclosure of Interests:None declared


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 660.2-660
Author(s):  
J. Álvarez Troncoso ◽  
Á. Robles Marhuenda ◽  
F. Mitjavila Villero ◽  
F. J. García Hernández ◽  
A. Marín Ballvé ◽  
...  

Background:Systemic lupus erythematosus (SLE) is a systemic autoimmune disease characterized by multiorgan involvement. Pulmonary hypertension (PH) is an uncommon manifestation with high morbidity and mortality whose characteristics, prevalence and evolution in SLE are not completely defined.Objectives:Using data of patients from the inception cohort Registro Español de Lupus Eritematoso Sistémico (RELES), we aimed to to identify the factors associated with pulmonary hypertension (PH) in systemic lupus erythematosus (SLE).Methods:Prospective observational study on a multicenter Spanish inception cohort. Patients with SLE, diagnosed by the American College of Rheumatology (ACR) criteria, since January 2009, who had at least one transthoracic echocardiogram (TTE) performed were selected. Demographic data, diagnostic criteria, follow-ups, treatments and SLEDAI were analyzed.Results:Of 289 patients diagnosed with SLE with TTE performed, 15 (5.2%) patients were identified to have PH. Mean age was 56,9±7,7 years, of which 93,3% (14) were women and 80% (12) Caucasian. The ACR score at diagnosis was 4.66. Mean SLEDAI was 15. Only 5 patients had dyspnea at the time of diagnosis. Mean pulmonary arterial systolic pressure was 49.2±5.6 mmHg. Among the PH, 4 patients had pericarditis (26.6%), 3 (20%) valvulopathies (1 antiphospholipid syndrome), 1 patient pulmonary embolism and 1 shrinking lung. Multivariable analysis indicated that pericarditis (odds ratio (OR)=2.53), and valvulopathies (OR 8.96) were independently associated with the development of PH in SLE. Having PH was associated with older age at diagnosis (p<0.001), more dyspnea (p<0.001), higher ESR (p=0.007), more serositis (p<0.001), higher SLEDAI (p=0.011), higher SLICC (p <0.001), higher number of admissions (p=0.006) and higher mortality (p=0.003).Conclusion:PH in SLE is a serious comorbidity with high mortality. In the RELES cohort it was associated with increased disease activity, pericarditis and valvulopathies. Performing TTE in patients with SLE may favor early diagnosis and treatment.References:[1]Kim JS, Kim D, Joo YB, et al. Factors associated with development and mortality of pulmonary hypertension in systemic lupus erythematosus patients.Lupus. 2018;27(11):1769–1777.[2]Bazan IS, Mensah KA, Rudkovskaia AA, et al. Pulmonary arterial hypertension in the setting of scleroderma is different than in the setting of lupus: A review.Respir Med. 2018;134:42–46.Disclosure of Interests:Jorge Álvarez Troncoso: None declared, Ángel Robles Marhuenda: None declared, Francesca Mitjavila Villero: None declared, Francisco José García Hernández: None declared, Adela Marín Ballvé: None declared, Antoni Castro Consultant of: Actelion pharmaceuticals, GSK, MSD., Gonzalo Salvador Cervelló: None declared, Eva Fonseca: None declared, Isabel Perales Fraile: None declared, Guillermo Ruiz-Irastorza: None declared


BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e049623
Author(s):  
Leona K Shum ◽  
Herbert Chan ◽  
Shannon Erdelyi ◽  
Lulu X Pei ◽  
Jeffrey R Brubacher

IntroductionRoad trauma (RT) is a major public health problem affecting physical and mental health, and may result in prolonged absenteeism from work or study. It is important for healthcare providers to know which RT survivors are at risk of a poor outcome, and policy-makers should know the associated costs. Unfortunately, outcome after RT is poorly understood, especially for RT survivors who are treated and released from an emergency department (ED) without the need for hospital admission. Currently, there is almost no research on risk factors for a poor outcome among RT survivors. This study will use current Canadian data to address these knowledge gaps.Methods and analysisWe will follow an inception cohort of 1500 RT survivors (16 years and older) who visited a participating ED within 24 hours of the accident. Baseline interviews determine pre-existing health and functional status, and other potential risk factors for a poor outcome. Follow-up interviews at 2, 4, 6, and 12 months (key stages of recovery) use standardised health-related quality of life tools to determine physical and mental health outcome, functional recovery, and healthcare resource use and lost productivity costs.Ethics and disseminationThe Road Trauma Outcome Study is approved by our institutional Research Ethics Board. This study aims to provide healthcare providers with knowledge on how quickly RT survivors recover from their injuries and who may be more likely to have a poor outcome. We anticipate that this information will be used to improve management of all road users following RT. Healthcare resource use and lost productivity costs will be collected to provide a better cost estimate of the effects of RT. This information can be used by policy-makers to make informed decisions on RT prevention programmes.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 901.2-901
Author(s):  
S. Kirchner ◽  
C. Sengler ◽  
J. Klotsche ◽  
I. Liedmann ◽  
M. Niewerth ◽  
...  

Background:Juvenile idiopathic arthritis (JIA) is the most common chronic inflammatory rheumatic disease in childhood. A multimodal treatment is needed to reduce pain, control inflammation and maintain joint functioning. Adherence to prescribed therapies is necessary for an optimal outcome. Measuring adherence in children with JIA and their caregivers by a validated questionnaire provides important information about benefits and problems with treatment.Objectives:To evaluate adherence in JIA patients and to validate the German version of both the parent adherence report questionnaire (PARQ) and the child adherence report questionnaire (CARQ).Methods:The PARQ and CARQ were translated from its original English version into German and cross-culturally adapted. Parents and children completed the PARQ and CARQ 4 years after enrolment in the Inception cohort ICON. These questionnaires measure child ability (by VAS 0-100, 100 = best) related to i) general level of difficulty in following treatment, ii) frequency of following treatment, iii) negative reactions in response to treatment [i)-iii) summarized to child ability total score], iv) perceived helpfulness of treatment, and 4 categorical questions on errors in medication behavior. Reliability was tested by re-administering the questionnaire after a mean of 13 days. Reproducibility was analysed using intraclass correlation coefficients (ICC). VAS scores were correlated with the Pediatric Quality of Life Inventory (PedsQL) treatment scale items for convergent validity, and with sociodemographic parameters for discriminant validity.Results:481 parents and 465 children completed the PARQ and the CARQ, respectively, 56 parents and 37 children took part in the re-test. The mean age at assessment was 10.1±3.7 years, mean disease duration was 4.7±0.8 years. The majority of patients suffered from oligoarthritis (49%), followed by rheumatoid-factor negative polyarthritis (30%). Treatment with a DMARD received 60% (MTX 46%), 28% received a biological drug, 16% both. Disease activity measured by the clinical juvenile arthritis disease activity score-10 (cJADAS-10) was 2.6 ± 3.4 (range 0 – 30, best = 0), functional status was good (mean CHAQ 0.2 ± 0.4). Exercise and splints were prescribed to 57% and 21% of patients, respectively.PARQ/CARQ mean child ability total scores for medication were 73.1 ± 23.3/76.5 ± 24.2, for exercise: 85.6 ± 16.5/90.3 ± 15.0, for splints: 72.9 ± 24.2/82.9 ± 16.5. About a third of parents and children reported any error in medication behavior. Perceived helpfulness was highest for medication (PARQ/CARQ 87.4 ± 20.6/83.6 ± 26.1) and lowest for splints. (PARQ/CARQ 80.8 ± 28.4/73.5 ± 33.6).ICCs related to medication indicated good to excellent concordance (PARQ ICC = 0.69 - 0.96; CARQ ICC = 0.53 - 0.75), to exercise moderate (PARQ ICC = 0.28 - 0.45; CARQ ICC = 0.67 - 0.93) and to splints disparate concordance (PARQ ICC = 0.01 - 0.90, CARQ ICC = 0.86 - 0.93).Scores for medications (PARQ: r 0.06 - 0.38, CARQ: 0.06 - 0.49), exercise (PARQ: r 0.03 - 0.30, CARQ: 0.01 - 0.34) and splints (PARQ: r 0.09 - 0.52, CARQ: 0.11 - 0.62) showed a fair to good correlation with the PedsQL scales. Gender and socioeconomic status were not associated with the level of adherence.Conclusion:The German version of the PARQ and CARQ appears to be a valuable tool to measure adherence in patients with JIA and to evaluate helpfulness of treatments.Acknowledgments:ICON is funded by the Federal Ministry of Research (FKZ:01ER0812)Disclosure of Interests:Sabine Kirchner: None declared, Claudia Sengler: None declared, Jens Klotsche: None declared, Ina Liedmann: None declared, Martina Niewerth: None declared, Daniel Windschall: None declared, Tilmann Kallinich Grant/research support from: Novartis, Consultant of: Sobi, Roche, Novartis, Gerd Horneff Grant/research support from: AbbVie, Chugai, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Speakers bureau: AbbVie, Bayer, Chugai, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Toni Hospach: None declared, Frank Dressler: None declared, J. B. Kuemmerle-Deschner Grant/research support from: Novartis, AbbVie, Sobi, Consultant of: Novartis, AbbVie, Sobi, Kirsten Minden Consultant of: GlaxoSmithKline, Sanofi, Speakers bureau: Roche


RMD Open ◽  
2021 ◽  
Vol 7 (2) ◽  
pp. e001751
Author(s):  
Berthold Hoppe ◽  
Christian Schwedler ◽  
Hildrun Haibel ◽  
Maryna Verba ◽  
Fabian Proft ◽  
...  

ObjectiveGenetic determinants of fibrin clot formation and fibrinolysis have an impact on local and systemic inflammatory response. The aim of the present study was to assess whether coagulation-related genotypes affect the predictive value of C-reactive protein (CRP) in regards of radiographic spinal progression in axial spondyloarthritis (axSpA).MethodsTwo hundred and eight patients with axSpA from the German Spondyloarthritis Inception Cohort were characterised for genotypes of α-fibrinogen, β-fibrinogen (FGB) and γ-fibrinogen, factor XIII A-subunit (F13A) and α2-antiplasmin (A2AP). The relation between CRP levels and radiographic spinal progression defined as worsening of the modified Stoke Ankylosing Spondylitis Spinal Score (mSASSS) by ≥2 points over 2 years was assessed in dependence on the respective genetic background in logistic regression analyses.ResultsOverall, CRP was associated with mSASSS progression ≥2 points: time-averaged CRP ≥10 mg/L, OR: 3.32, 95% CI 1.35 to 8.13. After stratification for coagulation-related genotypes, CRP was strongly associated with mSASSS progression in individuals predisposed to form loose, fibrinolysis-susceptible fibrin clots (FGB rs1800790GG, OR: 6.86, 95% CI 2.08 to 22.6; A2AP 6Trp, OR: 5.86, 95% CI 1.63 to 21.0; F13A 34Leu, OR: 8.72, 95% CI 1.69 to 45.1), while in genotypes predisposing to stable fibrin clots, the association was absent or weak (FGB rs1800790A, OR: 0.83, 95% CI 0.14 to 4.84; A2AP 6Arg/Arg, OR: 1.47, 95% CI 0.35 to 6.19; F13A 34Val/Val, OR: 1.72, 95% CI 0.52 to 5.71).ConclusionsElevated CRP levels seem to be clearly associated with radiographic spinal progression only if patients are predisposed for loose fibrin clots with high susceptibility to fibrinolysis.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1206.2-1206
Author(s):  
J. Klotsche ◽  
I. Foeldvari ◽  
O. Kasapcopur ◽  
A. Adrovic ◽  
K. Torok ◽  
...  

Background:The Composite Response Index in Systemic Sclerosis (CRISS) was developed by Dinesh Khanna as a response measure in patients with adult systemic sclerosis. CRISS aims to capture the complexity of systemic sclerosis and to provide a sensitive measure for change in disease activity. The CRISS score is based on a two-step approach. First, significant disease worsening or new-onset organ damage is defined as non-responsiveness. In patients who did not fulfill the criteria of part one, a probability of improvement is calculated for each patient based the Rodnan Skin Score (mRSS), percent predicted forced vital capacity (FVC%), patient and physician global assessments (PGA), and the Health Assessment Questionnaire Disability Index (HAQ-DI). A probability of 0.6 or higher indicates improvement.Objectives:The objective of this study was to validate the CRISS in a prospectively followed cohort of patients with juvenile systemic sclerosis (jSSc).Methods:Data from the prospective international inception cohort for jSSc was used to validate the CRISS. Patients with an available 12-months follow-up were included in the analyses. Clinically improvement was defined by the anchor question about improvement (much better or little better versus almost the same, little worse or much worse) in patients overall health due to scleroderma since the last visit provided by the treating physician.Results:Forty seven jSSc patients were included in the analysis. 74.2% had diffuse subtype. The physician rated the disease as improved in 34 patients (72.3%) since the last visit. No patient had a renal crisis or new onset of left ventricular failure during the 12-months follow-up. Three patients (3.4%) each had a new onset or worsening of lung fibrosis and new onset of pulmonary arterial hypertension. In total, 6 patients resulted in a rating of not improved based on the CRISS in part I. The mRSSS, FVC%, CHAQ and PGA significantly improved during the 12-months follow-up in patients who were rated as improved. The predicted probability based on the CRISS algorithm resulted in an area under curve of 0.77 predicting the anchor question of improvement. In summary, 33 (70.0%) patients were correctly classified by the adult CRISS score resulting in an overall area under curve of 0.7.Conclusion:The CRISS score was evaluated in a pediatric jSSc cohort for the first time. It showed a good performance. However, it seems that the formula of part II of the CRISS score needs a calibration to pediatric jSSc patients.Disclosure of Interests:Jens Klotsche: None declared, Ivan Foeldvari Consultant of: Novartis, Ozgur Kasapcopur: None declared, Amra Adrovic: None declared, Kathryn Torok: None declared, Valda Stanevicha: None declared, Jordi Anton Grant/research support from: grants from Pfizer, abbvie, Novartis, Sobi. Gebro, Roche, Novimmune, Sanofi, Lilly, Amgen, Grant/research support from: Pfizer, abbvie, Novartis, Sobi. Gebro, Roche, Novimmune, Sanofi, Lilly, Amgen, Consultant of: Novartis, Sobi, Pfizer, abbvie, Consultant of: Novartis, Sobi, Pfizer, abbvie, Speakers bureau: abbvie, Pfizer, Roche, Novartis, Sobi, Gebro, Speakers bureau: abbvie, Pfizer, Roche, Novartis, Sobi, Gebro, edoardo marrani: None declared, Maria T. Terreri: None declared, Flávio R. Sztajnbok: None declared, Cristina Battagliotti: None declared, Lillemor Berntson Consultant of: paid by Abbvie as a consultant, Speakers bureau: paid by Abbvie for giving speaches about JIA, Despina Eleftheriou: None declared, Gerd Horneff Grant/research support from: AbbVie, Chugai, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Speakers bureau: AbbVie, Bayer, Chugai, Merck Sharp & Dohme, Novartis, Pfizer, Roche, Farzana Nuruzzaman: None declared, Nicola Helmus: None declared


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