scholarly journals The Canadian Registry for Pulmonary Fibrosis: Design and Rationale of a National Pulmonary Fibrosis Registry

2016 ◽  
Vol 2016 ◽  
pp. 1-7 ◽  
Author(s):  
Christopher J. Ryerson ◽  
Benjamin Tan ◽  
Charlene D. Fell ◽  
Hélène Manganas ◽  
Shane Shapera ◽  
...  

Background. The relative rarity and diversity of fibrotic interstitial lung disease (ILD) have made it challenging to study these diseases in single-centre cohorts. Here we describe formation of a multicentre Canadian registry that is needed to describe the outcomes of fibrotic ILD and to enable detailed healthcare utilization analyses that will be the cornerstone for future healthcare planning.Methods. The Canadian Registry for Pulmonary Fibrosis (CARE-PF) is a prospective cohort anticipated to consist of at least 2,800 patients with fibrotic ILD. CARE-PF will be used to (1) describe the natural history of fibrotic ILD, specifically determining the incidence and outcomes of acute exacerbations of ILD subtypes and (2) determine the impact of ILD and acute exacerbations of ILD on health services use and healthcare costs in the Canadian population. Consecutive patients with fibrotic ILD will be recruited from five Canadian ILD centres over a period of five years. Patients will be followed up as clinically indicated and will complete standardized questionnaires at each clinic visit. Prespecified outcomes and health services use will be measured based on self-report and linkage to provincial health administrative databases.Conclusion. CARE-PF will be among the largest prospective multicentre ILD registries in the world, providing detailed data on the natural history of fibrotic ILD and the healthcare resources used by these patients. As the largest and most comprehensive cohort of Canadian ILD patients, CARE-PF establishes a network for future clinical research and early phase clinical trials and provides a platform for translational and basic science research.

Thorax ◽  
2016 ◽  
Vol 71 (Suppl 3) ◽  
pp. A13.1-A13
Author(s):  
V Navaratnam ◽  
AW Fogarty ◽  
T McKeever ◽  
N Thompson ◽  
G Jenkins ◽  
...  

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
J. H. Fisher ◽  
M. Kolb ◽  
M. Algamdi ◽  
J. Morisset ◽  
K. A. Johannson ◽  
...  

Abstract Background The CAnadian REgistry for Pulmonary Fibrosis (CARE-PF) is a multi-center, prospective registry designed to study the natural history of fibrotic interstitial lung disease (ILD) in adults. The aim of this cross-sectional sub-study was to describe the baseline characteristics, risk factors, and comorbidities of patients enrolled in CARE-PF to date. Methods Patients completed study questionnaires and clinical measurements at enrollment and each follow-up visit. Environmental exposures were assessed by patient self-report and comorbidities by the Charlson Comorbidity Index (CCI). Baseline characteristics, exposures, and comorbidities were described for the overall study population and for incident cases, and were compared across ILD subtypes. Results The full cohort included 1285 patients with ILD (961 incident cases (74.8%)). Diagnoses included connective tissue disease-associated ILD (33.3%), idiopathic pulmonary fibrosis (IPF) (24.7%), unclassifiable ILD (22.3%), chronic hypersensitivity pneumonitis (HP) (7.5%), sarcoidosis (3.2%), non-IPF idiopathic interstitial pneumonias (3.0%, including idiopathic nonspecific interstitial pneumonia (NSIP) in 0.9%), and other ILDs (6.0%). Patient-reported exposures were most frequent amongst chronic HP, but common across all ILD subtypes. The CCI was ≤2 in 81% of patients, with a narrow distribution and range of values. Conclusions CTD-ILD, IPF, and unclassifiable ILD made up 80% of ILD diagnoses at ILD referral centers in Canada, while idiopathic NSIP was rare when adhering to recommended diagnostic criteria. CCI had a very narrow distribution across our cohort suggesting it may be a poor discriminator in assessing the impact of comorbidities on patients with ILD.


2021 ◽  
Vol 66 ◽  
Author(s):  
Yael Rachamin ◽  
Oliver Senn ◽  
Sven Streit ◽  
Julie Dubois ◽  
Michael J. Deml ◽  
...  

Objectives: We aimed to explore the impact of the Swiss shutdown in spring 2020 on the intensity of health services use in general practice.Methods: Based on an electronic medical records database, we built one patient cohort each for January-June 2019 (control, 173,523 patients) and 2020 (179,086 patients). We used linear regression to model weekly consultation counts and blood pressure (BP) and glycated hemoglobin (HbA1c) measurement counts per 100 patients and predicted non-shutdown values. Analyses were repeated for selected at-risk groups and different age groups.Results: During the shutdown, weekly consultation counts were lower than predicted by −17.2% (total population), −16.5% (patients with hypertension), −17.5% (diabetes), −17.6% (cardiovascular disease), −15.7% (patients aged <60 years), −20.4% (60–80 years), and −14.5% (>80 years). Weekly BP counts were reduced by −35.3% (total population) and −35.0% (hypertension), and HbA1c counts by −33.2% (total population) and −29.8% (diabetes). p-values <0.001 for all reported estimates.Conclusion: Our results document consequential decreases in consultation counts and chronic disease monitoring during the shutdown. It is crucial that health systems remain able to meet non-COVID-19-related health care needs.


2007 ◽  
Vol 60 (10) ◽  
pp. 1040-1045 ◽  
Author(s):  
Marie-France Dubois ◽  
Michel Raîche ◽  
Réjean Hébert ◽  
N'Deye Rokhaya Gueye

2004 ◽  
Vol 37 (1) ◽  
pp. 11-18 ◽  
Author(s):  
Ruth H. Striegel-Moore ◽  
Faith-Anne Dohm ◽  
Helena C. Kraemer ◽  
George B. Schreiber ◽  
Patricia B. Crawford ◽  
...  

Thorax ◽  
2017 ◽  
Vol 73 (2) ◽  
pp. 145-150 ◽  
Author(s):  
Lucile Sesé ◽  
Hilario Nunes ◽  
Vincent Cottin ◽  
Shreosi Sanyal ◽  
Morgane Didier ◽  
...  

IntroductionIdiopathic pulmonary fibrosis (IPF) has an unpredictable course corresponding to various profiles: stability, physiological disease progression and rapid decline. A minority of patients experience acute exacerbations (AEs). A recent study suggested that ozone and nitrogen dioxide might contribute to the occurrence of AE. We hypothesised that outdoor air pollution might influence the natural history of IPF.MethodsPatients were selected from the French cohort COhorte FIbrose (COFI), a national multicentre longitudinal prospective cohort of IPF (n=192). Air pollutant levels were assigned to each patient from the air quality monitoring station closest to the patient’s geocoded residence. Cox proportional hazards model was used to evaluate the impact of air pollution on AE, disease progression and death.ResultsOnset of AEs was significantly associated with an increased mean level of ozone in the six preceding weeks, with an HR of 1.47 (95% CI 1.13 to 1.92) per 10 µg/m3 (p=0.005). Cumulative levels of exposure to particulate matter PM10 and PM2.5 were above WHO recommendations in 34% and 100% of patients, respectively. Mortality was significantly associated with increased levels of exposure to PM10 (HR=2.01, 95% CI 1.07 to 3.77) per 10 µg/m3 (p=0.03), and PM2.5 (HR=7.93, 95% CI 2.93 to 21.33) per 10 µg/m3 (p<0.001).ConclusionThis study suggests that air pollution has a negative impact on IPF outcomes, corroborating the role of ozone on AEs and establishing, for the first time, the potential role of long-term exposure to PM10 and PM2.5 on overall mortality.


2020 ◽  
Vol 6 (3) ◽  
pp. 00340-2019
Author(s):  
Teresa To ◽  
M. Diane Lougheed ◽  
Rachel McGihon ◽  
Jingqin Zhu ◽  
Samir Gupta ◽  
...  

BackgroundBreathe is a mobile health (mHealth) application developed for the self-management of asthma in adults. There is evidence to suggest that mHealth interventions can be used for asthma control; however, their effects on the use of health services remain poorly understood. We sought to determine whether Breathe reduces health services use amongst asthma patients who used the app compared to controls who did not.MethodsThe impact of Breathe on health services use was estimated using a quasi-experimental approach. Two groups of subjects who had participated in a previous randomised clinical trial were included: an intervention group of asthma patients who used the app for 12 months, and a group of controls who did not use the app but received equivalent quality asthma care. A third, external control group of asthma patients were matched to the intervention participants. Generalised linear mixed models were used to determine relative changes in rates of asthma hospitalisations, emergency department (ED) visits, outpatient physician visits and completion of pulmonary function tests (PFTs) over time.ResultsA total of 677 individuals with asthma were included in the study: 132 in the intervention group, and 149 and 396 in the internal and external control groups, respectively. There were no statistically significant differences in the change of asthma hospitalisations, ED visits, physician office visits or completion of PFTs between the intervention group and either control group.ConclusionsUse of the Breathe app is not associated with changes in health services use in adults with asthma.


Medical Care ◽  
2016 ◽  
Vol 54 (8) ◽  
pp. 758-764 ◽  
Author(s):  
Lindsay M. Sabik ◽  
Gloria J. Bazzoli ◽  
Patricia Carcaise-Edinboro ◽  
Priya Chandan ◽  
Spencer E. Harpe

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e048137
Author(s):  
Teresa To ◽  
Ivy Fong ◽  
Jingqin Zhu ◽  
Rachel McGihon ◽  
Kimball Zhang ◽  
...  

ObjectiveThis study will add to existing literature by examining the impact of smoke-free legislation in outdoor areas among children with asthma. We aimed to examine the effect of the 2015 Smoke-Free Ontario Act (SFOA) amendment, which prohibited smoking on patios, playgrounds and sports fields, on health services use (HSU) rates in children with asthma.MethodsWe conducted a population-based open cohort study using health administrative data from the province of Ontario, Canada. Each year, all Ontario residents aged 0–18 years with physician diagnosed asthma were included in the study. Annual rates of HSU (emergency department (ED) visits, hospitalisations and physician office visits) for asthma and asthma-related conditions (eg, bronchitis, allergic rhinitis, influenza and pneumonia) were calculated. Interrupted time-series analysis, accounting for seasonality, was used to estimate changes in HSU following the 2015 SFOA.ResultsThe study population ranged from 618 957 individuals in 2010 to 498 812 in 2018. An estimated average increase in ED visits for asthma in infants aged 0–1 years of 0.42 per 100 individuals (95% CI: 0.09 to 0.75) and a 57% relative increase corresponding to the 2015 SFOA was observed. A significant decrease in ED visits for asthma-related conditions of 0.19 per 100 individuals (95% CI: −0.37 to –0.01) and a 22% relative decrease corresponding to the 2015 SFOA was observed.ConclusionBased on the observed positive effect of restricting smoking on patios, playgrounds and sports fields on respiratory morbidity in children with asthma, other jurisdictions globally should consider implementing similar smoke-free policies.


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