The Effect of Infective Exacerbations on Sleep and Neurobehavioral Function in Cystic Fibrosis

Dobbin, Catherine J.; Bartlett, Delwyn J.; Melehan, Kerri; Grunstein, Ronald R.; Bye, Peter

doi:10.1164/rccm.200409-1244oc

Cited by 72 publications

(58 citation statements)

References 26 publications

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“…Pulmonary exacerbations can have a negative impact on health-related quality of life (HRQoL) that lasts long after the pulmonary exacerbation has resolved [15,16]. The development and use of disease-specific quality of life instruments, such as the Cystic Fibrosis Questionnaire-Revised (CFQ-R), have increased our understanding of the link between pulmonary exacerbations and HRQoL by focusing on diseasespecific aspects of health status [17,18].…”

mentioning

confidence: 99%

Quality of life and healthcare utilisation in cystic fibrosis: a multicentre study

Bradley

Blume

Balp³

et al. 2012

Eur Respir J

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The aim of our study was to discover the health status and healthcare utilisation associated with pulmonary exacerbations in cystic fibrosis (CF) and chronic Pseudomonas aeruginosa infection.Patients with CF from five UK CF centres attended two visits, 8-12 weeks apart. They were classified at visit 1 as being in one of the three health states: no current pulmonary exacerbation; ''mild'' (no hospitalisation) pulmonary exacerbation; and ''severe'' (hospitalisation) pulmonary exacerbation. All patients completed the Cystic Fibrosis Questionnaire-Revised (CFQ-R) and EuroQol (EQ-5D) and a clinical form, and forced expiratory volume in 1 s (FEV1) was measured at visits 1 and 2. Annual healthcare utilisation data were collected.94 patients of mean¡SD age 28.5¡8.2 yrs and FEV1 58.7¡26.8% were recruited. 60 patients had no pulmonary exacerbation, 15 had a mild and 19 had a severe pulmonary exacerbation at visit 1. EQ-5D and CFQ-R data showed that the worse the exacerbation, the poorer the healthrelated quality of life (HRQoL). There were strong relationships between the CFQ-R and EQ-5D domain scores. The mean rate of pulmonary exacerbations per patient per year was 3.6 (1.5 in hospital and 2.2 at home). The mean length of stay per hospital pulmonary exacerbation was 9 days.As exacerbation status worsens, patients experience worse HRQoL. There is a significant healthcare burden associated with treatment of pulmonary exacerbation and long-term prophylaxis.

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confidence: 99%

Quality of life and healthcare utilisation in cystic fibrosis: a multicentre study

Bradley

Blume

Balp³

et al. 2012

Eur Respir J

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“…For example, the Centers for Disease Control and Prevention collects surveillance data on health-care-associated infections, including central line-associated bloodstream infections (CLABSIs) and catheter-associated urinary tract infections, through the National Healthcare Safety Network. 18 In addition, active surveillance is ongoing through the National Healthcare Safety Network for ventilator-associated events (VAEs). 19 A VAE is a newly defi ned entity comprising ventilator-associated conditions, infection-related ventilator-associated conditions, possible ventilatorassociated pneumonia (VAP), and probable VAP that is intended to take the place of the previous VAP surveillance defi nition, which had previously been publicly reported despite concerns over its validity and reproducibility.…”

Section: Identify Target Areasmentioning

confidence: 99%

ICU Director Data

Murphy¹,

Ogbu²,

Coopersmith

2015

Chest

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Improving value within critical care remains a priority because it represents a signifi cant portion of health-care spending, faces high rates of adverse events, and inconsistently delivers evidence-based practices. ICU directors are increasingly required to understand all aspects of the value provided by their units to inform local improvement eff orts and relate eff ectively to external parties. A clear understanding of the overall process of measuring quality and value as well as the strengths, limitations, and potential application of individual metrics is critical to supporting this charge. In this review, we provide a conceptual framework for understanding value metrics, describe an approach to developing a value measurement program, and summarize common metrics to characterize ICU value. We fi rst summarize how ICU value can be represented as a function of outcomes and costs. We expand this equation and relate it to both the classic structure-process-outcome framework for quality assessment and the Institute of Medicine's six aims of health care. We then describe how ICU leaders can develop their own value measurement process by identifying target areas, selecting appropriate measures, acquiring the necessary data, analyzing the data, and disseminating the fi ndings. Within this measurement process, we summarize common metrics that can be used to characterize ICU value. As health care, in general, and critical care, in particular, changes and data become more available, it is increasingly important for ICU leaders to understand how to eff ectively acquire, evaluate, and apply data to improve the value of care provided to patients.

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“…The body of literature regarding HRQOL has increased dramatically in the last 10 years in CF research. Recent PE in patients with CF (using criteria developed by Fuchs and colleagues [29]) has been shown to have a profound negative effect on HRQOL (assessed with the Child Health Questionnaire and the SF-36) (30); a CF PE has also been associated with worse symptoms and health perception and reduced function and vitality (CFQ) (31). Given that PE is an important and often frequent clinical event in the natural history of CF lung disease, HRQOL is clearly an important endpoint.…”

Section: State Of the Art Of Pro Instruments That Measure Hrqol In Cfmentioning

confidence: 99%

“…To date, two different disease-specific HRQOL instruments have been developed specifically for CF, the CFQ-revised (CFQ-R) and the Cystic Fibrosis Quality of Life (CFQoL) questionnaire (20,32). Both of these instruments are considered valid instruments with demonstrated reliability, internal validity, and sensitivity (20,31,32). Data regarding the minimal change associated with treatment with inhaled tobramycin are being collected to estimate the MCID for the CFQ-R and will be useful for future therapeutic trials involving antimicrobials and possibly other therapies.…”

Section: State Of the Art Of Pro Instruments That Measure Hrqol In Cfmentioning

confidence: 99%

“…HRQOL instruments have also been used to assess associations between HRQOL and clinical variables, including sex (Child Health Questionnaire [CHQ] and CFQoL) (38)(39)(40) and family dynamics (adolescent and parents) (CHQ, adolescent and parent version; CFQ-R) (41,42). Additional studies have examined the relationships between HRQOL and treatment burden, nutritional status, and the effects of CF PE on sleep (CHQ, CFQoL, CFQ-R) (31,43,44). Several studies have used HRQOL instruments to assess the site of treatment for PE (inpatient or outpatient); one used the CHQ-Parent Form (PF-50) and the Medical Outcomes Study SF-36 (45), and the other study used the Chronic Respiratory Questionnaire (CRQ) (46).…”

Section: State Of the Art Of Pro Instruments That Measure Hrqol In Cfmentioning

confidence: 99%

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Patient-reported Outcomes in Cystic Fibrosis

Goss¹,

Quittner²

2007

Proceedings of the American Thoracic Society

116

107

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Over the past 20 years, there has been tremendous progress in the area of patient-reported outcomes (PROs). A PRO instrument is defined as any measure of a patient's health status that is elicited directly from the patient and assesses how the patient "feels or functions with respect to his or her health condition." The advances seen in clinical research regarding PROs has been mirrored in research in cystic fibrosis (CF). A large number of instruments have been used for both therapeutic and nontherapeutic clinical research for many chronic conditions. This review will summarize a history of the development of PROs and how PROs are viewed by the U.S. Food and Drug Administration. We will then review the current state of the art of patient-reported outcomes in CF, specifically addressing the evaluation of different PRO instruments in terms of their reliability and validity. Finally, we will delineate further areas for development of PROs in CF. We believe that the future of CF research will incorporate a more diverse selection of PRO outcome measures; these outcome measures ultimately may be incorporated into clinical care to standardize symptom assessment and provide information regarding the need for specific clinical interventions to improve the quality of care delivered to these patients.

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The Effect of Infective Exacerbations on Sleep and Neurobehavioral Function in Cystic Fibrosis

Cited by 72 publications

References 26 publications

Quality of life and healthcare utilisation in cystic fibrosis: a multicentre study

Quality of life and healthcare utilisation in cystic fibrosis: a multicentre study

ICU Director Data

Patient-reported Outcomes in Cystic Fibrosis

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