Do cystic fibrosis centres with the lowest FEV1 still use the least amount of intravenous antibiotics? A registry-based comparison of intravenous antibiotic use among adult CF centres in the UK

Hoo, Zhe Hui; Campbell, Mike; Curley, Rachael; Walters, Stephen J.; Wildman, Martin J

doi:10.1016/j.jcf.2017.10.005

Cited by 16 publications

(16 citation statements)

References 30 publications

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“…5 Australia also delivered more aggressive treatment for pulmonary exacerbations, 5 which contributes to better lung health. [16][17][18] Despite the very strong correlation between nutritional outcomes and lung health, [19][20][21] were actually similar between Australian and US children. 5 In fact, Australian children had significantly lower FEV 1 after adjusting for the mode of diagnosis.…”

Section: Discussionmentioning

confidence: 90%

“…The 2003 US‐Australia comparison found greater height and weight percentiles among Australian children (suggesting better nutritional outcomes), which is not surprising given that Australian children were much more likely to be diagnosed after newborn screening (65.8%) compared with US children (7.2%) . Australia also delivered more aggressive treatment for pulmonary exacerbations, which contributes to better lung health . Despite the very strong correlation between nutritional outcomes and lung health, FEV 1 were actually similar between Australian and US children .…”

Section: Discussionmentioning

confidence: 96%

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The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV₁ in the UK only collected when subjects are well?

Hoo

Curley

Campbell

et al. 2018

Evaluation Clinical Practice

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Rationale, aims and objectiveCross‐country comparisons of cystic fibrosis (CF) outcomes can potentially identify variation in care but are dependent on data quality. An important assumption is that the UK annual review FEV1 is only collected during periods of clinical stability. If this assumption does not hold, results of FEV1 comparisons may be biased in favour of registries with encounter‐based FEV1. We aimed to test the assumption that CF annual reviews in the UK are only performed during periods of clinical stability.MethodProspective encounter‐based data collected in Sheffield (n = 174) was used to establish whether annual review FEV1 were always collected during periods of clinical stability and to determine the group‐level discrepancy between annual review vs best FEV1. We then went on to quantify the group‐level discrepancy between annual review and best annual FEV1 readings within the UK registry (n = 2995) to determine if the differences observed in Sheffield also apply to the wider UK data.ResultsSheffield results showed a group‐level discrepancy between best and annual review FEV1 of −2.5% (95% CI −3.95% to −1.2%) for annual reviews performed during periods of clinical stability (n = 50). The group‐level discrepancy is larger at −8.0% (95% CI −11.2% to −4.9%) among annual reviews performed during periods of clinical instability (n = 13). Therefore, the magnitude of this group‐level discrepancy is a surrogate for the proportion of clinically stable annual reviews—smaller discrepancy indicates a higher proportion of clinically stable annual reviews and vice versa.The overall group‐level discrepancy in the UK registry (−5.6%, 95% CI −5.9 to −5.4%) was similar to Sheffield (−6.1%, 95% CI −7.1 to −5.1%). Around 20% of the clinician reviewed, annual reviews in Sheffield were performed during periods of clinically instability.ConclusionsAnnual review FEV1 underestimates lung health of adults with CF in the UK and may bias cross‐country comparisons.

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Section: Discussionmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 96%

The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV₁ in the UK only collected when subjects are well?

Hoo

Curley

Campbell

et al. 2018

Evaluation Clinical Practice

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“…Previous studies using data from the Epidemiologic Study of Cystic Fibrosis (ESCF) during 1995‐1996 and 2003‐2005 found that CF centers with highest FEV1 used more IVABs. The UK CF registry analyzed data from 28 adult CF centers separately for the years 2013 (4269 adults) and 2014 (4644 adults) to examine whether this was still an association . Centers were ranked by FEV1 quartiles as done in the ESCF analyses.…”

Section: Pulmonary Healthmentioning

confidence: 99%

“…The UK CF registry analyzed data from 28 adult CF centers separately for the years 2013 (4269 adults) and 2014 (4644 adults) to examine whether this was still an association. 57 Centers were ranked by FEV1 quartiles as done in the ESCF analyses. The differences in FEV1 were clinically and statistically significant.…”

Section: Pex: Treatmentmentioning

confidence: 99%

Cystic fibrosis year in review 2018, part 2

Savant

McColley

2019

Pediatric Pulmonology

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“…But even the CF programs with the best outcomes seem to have provided no antibiotic treatment in about half of the apparent PEx . This ESCF analysis is based on data that is about 20 years old, but a recent publication from the UK still reported that adults with CF attending centers in the upper quartiles for ppFEV1 are 30‐50% more likely to receive at least one IV antibiotic course per year compared to those attending centers in the lowest quartile …”

Section: Variation and Inconsistency In Diagnosis And Likelihood Of Tmentioning

confidence: 99%

Reevaluating approaches to cystic fibrosis pulmonary exacerbations

Schechter

2018

Pediatric Pulmonology

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Cystic Fibrosis (CF) lung disease is characterized by intermittent acute episodes of worsening signs, symptoms, and pulmonary function; these so-called pulmonary exacerbations (PEx) appear to be important drivers of long-term declines in lung function, quality of life, and life expectancy. Surveillance for development of PEx and their treatment is a fundamental component of chronic CF management, and the merits of novel CF therapies are often judged based on their ability to reduce the frequency of PEx. Given the central role that they play, it is surprising how poorly PEx are understood, how thin is the evidence base for their treatment and how often they are left unrecognized and untreated in clinical practice. This paper reviews what is known and what is unknown regarding the nature of PEx, and discusses the impact of missed recognition and treatment of these episodes as well as the apparent variation in practice across CF care centers. The arguments supporting a liberal, highly sensitive approach to the diagnosis of PEx are presented, as well as recommendation for how care programs can achieve consistency in their early recognition and treatment. A stepwise approach to personalized treatment supported by close follow-up to ensure the successful resolution of all signs and symptoms will lead to the stabilization of patients' lung function and quality of life. Recommendations are made regarding important priorities for research into evidence-based approaches to improving the care of PEx.

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Do cystic fibrosis centres with the lowest FEV1 still use the least amount of intravenous antibiotics? A registry-based comparison of intravenous antibiotic use among adult CF centres in the UK

Abstract: CF centres with lowest FEV are still distinguished by lower use of intravenous antibiotics.

Cited by 16 publications

References 30 publications

The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV₁ in the UK only collected when subjects are well?

The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV₁ in the UK only collected when subjects are well?

Cystic fibrosis year in review 2018, part 2

Reevaluating approaches to cystic fibrosis pulmonary exacerbations

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Do cystic fibrosis centres with the lowest FEV1 still use the least amount of intravenous antibiotics? A registry-based comparison of intravenous antibiotic use among adult CF centres in the UK

Abstract: CF centres with lowest FEV are still distinguished by lower use of intravenous antibiotics.

Cited by 16 publications

References 30 publications

The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV1 in the UK only collected when subjects are well?

The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV1 in the UK only collected when subjects are well?

Cystic fibrosis year in review 2018, part 2

Reevaluating approaches to cystic fibrosis pulmonary exacerbations

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Product

Resources

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The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV₁ in the UK only collected when subjects are well?

The importance of data issues when comparing cystic fibrosis registry outcomes between countries: Are annual review FEV₁ in the UK only collected when subjects are well?