Understanding Pseudomonas status among adults with cystic fibrosis: a real-world comparison of the Leeds criteria against clinicians' decision

Pseudomonas aeruginosa status influences cystic fibrosis (CF) clinical management but no 'gold standard' definition exists. The Leeds criteria are commonly used but may lack sensitivity for chronic P. aeruginosa. We compared clinicians' decision with the Leeds criteria in three adult CF centres. Two independent prospective datasets (Sheffield dataset, n = 185 adults; ACtiF pilot dataset, n = 62 adults from two different centres) were analysed. Clinicians involved in deciding P. aeruginosa status were blinded to the study objectives. Clinicians considered more adults with CF to have chronic P. aeruginosa infection compared to the Leeds criteria. This was more so for the Sheffield dataset (106/185, 57.3% with clinicians' decision vs. 80/185, 43.2% with the Leeds criteria; kappa coefficient between these two methods 0.72) compared to the ACtiF pilot dataset (34/62, 54.8% with clinicians' decision vs. 30/62, 48.4% with the Leeds criteria; kappa coefficient between these two methods 0.82). However, clinicians across different centres were relatively consistent once age and severity of lung disease, as indicated by the type of respiratory samples provided, were taken into account. Agreement in P. aeruginosa status was similar for both datasets among adults who predominantly provided sputum samples (kappa coefficient 0.78) or adults > 25 years old (kappa coefficient 0.82). Across three different centres, clinicians did not always agree with the Leeds criteria and tended to consider the Leeds criteria to lack sensitivity. Where disagreement occurred, clinicians tended to diagnose chronic P. aeruginosa infection because other relevant information was considered. These results suggest that a better definition for chronic P. aeruginosa might be developed by using consensus methods to move beyond a definition wholly dependent on standard microbiological results

Prospectively predicting Pseudomonas aeruginosa infection/s using routine data from the UK cystic fibrosis register

Rationale and aims Lung health of people with cystic fibrosis (PwCF) can be preserved by daily use of inhaled therapy. Adherence to inhaled therapy, therefore, provides an important process measure to understand the success of care and can be used as a quality indicator. Defining adherence is problematic, however, since the number of prescribed treatments varies considerably between PwCF. The problem is less pronounced among those with Pseudomonas aeruginosa (PA), for whom at least three daily doses of nebulized therapy should be prescribed and who thus constitute a more homogeneous group. The UK CF Registry provides routine data on PA status, but data are only available 12 months after collection. In this study, we aim to prospectively identify contemporary PA status from historic registry data. Method UK CF Registry data from 2011 to 2015 for PwCF aged ≥16 was used to determine a pragmatic prediction rule for identifying contemporary PA status using historic registry data. Accuracy of three different prediction rules was assessed using the positive predictive value (PPV). The number and proportion of adults predicted to have PA infection were determined overall and per center for the selected prediction rule. Known characteristics linked to PA status were explored to ensure the robustness of the prediction rule. Results Having CF Registry defined chronic PA status in the two previous years is the selected definition to predict a patient will have PA infection within the current year (population-level PPV = 96%-97%, centre level PPV = 85%-100%). This approach provides a subset of data between 1852 and 1872 patients overall and a range of 8 to 279 patients per center. Conclusion Historic registry data can be used to contemporaneously identify a subgroup of patients with chronic PA. Since this patient group has a narrower treatment schedule, this can facilitate a better benchmarking of adherence across centers

European Cystic Fibrosis Society standards of care: best practice guidelines

Specialised CF care has led to a dramatic improvement in survival in CF: in the last four decades, well above what was seen in the general population over the same period. With the implementation of newborn screening in many European countries, centres are increasingly caring for a cohort of patients who have minimal lung disease at diagnosis and therefore have the potential to enjoy an excellent quality of life and an even greater life expectancy than was seen previously. To allow high quality care to be delivered throughout Europe, a landmark document was published in 2005 that sets standards of care. Our current document builds on this work, setting standards for best practice in key aspects of CF care. The objective of our document is to give a broad overview of the standards expected for screening, diagnosis, pre-emptive treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support. For comprehensive details of clinical care of CF, references to the most up to date European Consensus Statements, Guidelines or Position Papers are provided in Table 1. We hope that this best practice document will be useful to clinical teams both in countries where CF care is developing and those with established CF centres

Transmission of H7N9 influenza virus in mice by different infective routes

BACKGROUND: On 19 February 2013, the first patient infected with a novel influenza A H7N9 virus from an avian source showed symptoms of sickness. More than 349 laboratory-confirmed cases and 109 deaths have been reported in mainland China since then. Laboratory-confirmed, human-to-human H7N9 virus transmission has not been documented between individuals having close contact; however, this transmission route could not be excluded for three families. To control the spread of the avian influenza H7N9 virus, we must better understand its pathogenesis, transmissibility, and transmission routes in mammals. Studies have shown that this particular virus is transmitted by aerosols among ferrets. METHODS: To study potential transmission routes in animals with direct or close contact to other animals, we investigated these factors in a murine model. RESULTS: Viable H7N9 avian influenza virus was detected in the upper and lower respiratory tracts, intestine, and brain of model mice. The virus was transmissible between mice in close contact, with a higher concentration of virus found in pharyngeal and ocular secretions, and feces. All these biological materials were contagious for naïve mice. CONCLUSIONS: Our results suggest that the possible transmission routes for the H7N9 influenza virus were through mucosal secretions and feces. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/1743-422X-11-185) contains supplementary material, which is available to authorized users

Directed qualitative content analysis: the description and elaboration of its underpinning methods and data analysis process

Author's accepted version (post-print).Qualitative content analysis consists of conventional, directed and summative approaches for data analysis. They are used for provision of descriptive knowledge and understandings of the phenomenon under study. However, the method underpinning directed qualitative content analysis is insufficiently delineated in international literature. This paper aims to describe and integrate the process of data analysis in directed qualitative content analysis. Various international databases were used to retrieve articles related to directed qualitative content analysis. A review of literature led to the integration and elaboration of a stepwise method of data analysis for directed qualitative content analysis. The proposed 16-step method of data analysis in this paper is a detailed description of analytical steps to be taken in directed qualitative content analysis that covers the current gap of knowledge in international literature regarding the practical process of qualitative data analysis. An example of “the resuscitation team members' motivation for cardiopulmonary resuscitation” based on Victor Vroom's expectancy theory is also presented. The directed qualitative content analysis method proposed in this paper is a reliable, transparent, and comprehensive method for qualitative researchers. It can increase the rigour of qualitative data analysis, make the comparison of the findings of different studies possible and yield practical results.acceptedVersio

ECFS best practice guidelines: the 2018 revision

Developments in managing CF continue to drive dramatic improvements in survival. As newborn screening rolls-out across Europe, CF centres are increasingly caring for cohorts of patients who have minimal lung disease on diagnosis. With the introduction of mutation-specific therapies and the prospect of truly personalised medicine, patients have the potential to enjoy good quality of life in adulthood with ever-increasing life expectancy. The landmark Standards of Care published in 2005 set out what high quality CF care is and how it can be delivered throughout Europe. This underwent a fundamental re-write in 2014, resulting in three documents; center framework, quality management and best practice guidelines. This document is a revision of the latter, updating standards for best practice in key aspects of CF care, in the context of a fast-moving and dynamic field. In continuing to give a broad overview of the standards expected for newborn screening, diagnosis, preventative treatment of lung disease, nutrition, complications, transplant/end of life care and psychological support, this consensus on best practice is expected to prove useful to clinical teams both in countries where CF care is developing and those with established CF centres. The document is an ECFS product and endorsed by the CF Network in ERN LUNG and CF Europe

Frequency of cytokine gene promoter polymorphisms in the Northern Ireland Cystic Fibrosis population

AbstractBackgroundThe impact of pre-pregnancy pulmonary and nutritional status in pregnancy outcomes of women with cystic fibrosis (CF) is not clearly defined.MethodsA chart review of CF women who attended the University of Washington Medical Center (UWMC), Seattle WA. from January 1989 until May 2004.ResultsThere were 43 pregnancies resulting in 36 live births among 25 of 189 CF women. In the subset of CF women receiving their obstetric care at the UWMC whose FEV1 was <50% predicted, infant weight was lower than in women with a higher FEV1 (2.9 kg±0.4 (range 2.2–3.3 kg) versus 3.4±0.8 kg (range 2.5–5.1 kg)) p=0.05 although the gestational ages were the same (37±2 weeks (range 33–39 weeks) versus to 38±2 weeks (range 35–40 weeks) p=0.17). Infant weight and gestational age of women whose initial BMI was <20 kg/m2 was no different from women with a normal initial BMI (3.0±0.4 kg, range 2.2–3.4 kg versus 3.3±0.8 kg, range 2.6–5.1 kg p=0.29, and 37.7±2.4 weeks, range 33–39 weeks versus 37.2±2.1 weeks, range 34–40 weeks).ConclusionsCF women with severe pulmonary impairment tend to have lower weight babies but it remains difficult to determine prospectively which CF women will tolerate pregnancy well. Aggressive antepartum management is recommended for all CF women

Trial and retribution: a qualitative study of whistleblowing and workplace relationships in nursing

Internationally, the health system is under considerable pressure and it is not likely that whistleblowing events will diminish in the future. Whistleblowers can lose their employment, be bullied and unsupported by management and colleagues, and have their collegial relationships destroyed. Given the importance of workplace relationships and collegial trust in nursing, it is clearly damaging to have seriously fractured relationships in the workplace. Nursing and health care organisations are challenged to work to develop supportive cultures of trust that will enable nurses and other health care professionals to safely raise legitimate concerns about patient care and safety