Patient-Reported Outcome Measures for Symptom Perception During a Cystic Fibrosis Exacerbation

Schmid-Mohler, Gabriela; Caress, Ann Louise; Spirig, Rebecca; Benden, Christian; Yorke, Janelle

doi:10.4187/respcare.05638

Cited by 8 publications

(5 citation statements)

References 59 publications

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“…12 clinical scores calculated from outcome data reported by people with CF were identified; three were developed for use in CF pulmonary exacerbations [12,106], three captured respiratory symptoms [ [90,133], two quantified abdominal symptoms [28,31,41] and one has been used to evaluate physical and psychological symptom burden [105,106] (table 2). Of these, the CFRSD-CRISS (chronic respiratory infection symptom score) has been the most widely used in CF studies and is available in 38 languages; it evaluates eight respiratory symptoms and is validated for use in people with CF aged >12 year [44].…”

Section: Characteristics Of Tests and Toolsmentioning

confidence: 99%

The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review

et al. 2021

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There is no consensus on how best to measure responses to interventions among children and adults with cystic fibrosis (CF). We have systematically reviewed and summarised the characteristics and measurement properties of tests and tools that have been used to capture outcomes in studies among people with CF, including their reliability, validity and responsiveness. This review is intended to guide researchers when selecting tests or tools for measuring treatment effects in CF trials. A consensus set of these tests and tools could improve consistency in how outcomes are captured and thereby facilitate comparisons and synthesis of evidence across studies.

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Section: Characteristics Of Tests and Toolsmentioning

confidence: 99%

The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review

et al. 2021

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“…Although our study is relatively small in scope, we calculated several digital measures and evaluated their association with CF severity, and whether the patients were inpatient or outpatient. Because inpatients were admitted for a PEx, this group may show differences in certain cardiorespiratory measures that could prove useful to detect PEx early to corroborate unreliable PROs [5]. HR was increased in severe CF, especially during periods of increased physical activity.…”

Section: Study Takeawaysmentioning

confidence: 99%

“…Clinicians are often reliant on an individual’s recognition and self-reporting of symptoms. However, patient reported outcomes (PROs) specific for pulmonary exacerbations (PEx) in CF are known to be inaccurate and unreliable [5]. User-friendly and clinically validated wearable devices could fill this void by continuously monitoring affected organ systems to generate a more holistic view into the patient’s health status.…”

Section: Introductionmentioning

confidence: 99%

Piloting the Clinical Value of Wearable Cardiorespiratory Monitoring for People with Cystic Fibrosis

Vandendriessche

Bergh²,

Storms

et al. 2020

Preprint

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Introduction. Cystic Fibrosis (CF) is a disease without a primary cure that requires lifelong care and is characterized by pulmonary exacerbations (PEx). Wearable devices could provide a way for long-term monitoring of disease progression and early signs of PEx to intervene as early as possible, thereby improving long-term outcomes. Methods. In-hospital feasibility study (n = 26) to 1) assess the ability of Byteflies Sensor Dot to collect relevant cardiorespiratory data in people with CF and its compatibility with clinical workflows, 2) identify candidate digital biomarkers, and 3) collect user feedback from patients and healthcare providers. Results. Collected sample-level biopotential, bioimpedance and actigraphy data were of high quality. Sensor Dot heart rate (HR) correlated with hospital HR, whereas respiratory rate (RR) did not. HR and RR were associated with CF severity, and HR and coughing with PEx. Willingness to use the device was very high with CF patients and study coordinators considered the device easy-to-use. Conclusion. Determining if a wearable is fit-for-purpose is a long and multidisciplinary process that requires involvement from all stakeholders as early as possible in the development process. Our pilot identified interesting correlations between cardiorespiratory parameters as measured by the wearable, and CF severity and PEx. Together with the usability data, this will inform the next steps in the clinical development process.

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“…Oscillometry is able to assess lung function in adults and can be combined with spirometry as a complementary test (in addition to more complete standard pulmonary function tests), but how well oscillometry may enhance the ability to detect early disease, recognize the risk for or development of an acute exacerbation, reliably identify treatment response or failure, and other patient-related outcomes including long term prognosis remains to be determined. Ideally, oscillometry should be obtained in combination with other "emerging" tests of respiratory function such as multiple breath washout (208) and functional MRI (50) in addition to microbiology, inflammatory markers, patient reported outcomes, clinical phenotypes, exercise performance, and other parameters to address such questions (209)(210)(211)(212)(213)(214)(215)(216). Clearly well-designed prospective multicenter studies to validate the use of oscillometry in the ongoing management of CF in real-world practice are needed.…”

Section: Univariable Multivariablementioning

confidence: 99%

Oscillometry to Assess Respiratory Function in Adult Cystic Fibrosis

Rad

Landry

Dong

et al. 2020

B30. Arthur Dubois Memorial Session: The Small and Large of Airway and Lung Function

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Oscillometry to Assess Respiratory Function in Adult Cystic FibrosisBackground and Rationale: Cystic fibrosis (CF) is a life-limiting multi-system disorder in which respiratory dysfunction predominates. Although spirometry is the most commonly used test of pulmonary function, it has recognized limitations. Oscillometry is an alternative test of respiratory function which provides complementary information. Oscillometry also offers a number of practical and physiological advantages and is increasingly used in both clinical research and patient care. Surprisingly, little data exists using oscillometry to evaluate lung function in adults with CF.Accordingly, the aim of this study was to compare spirometry and oscillometry in a large adult CF cohort. Methods: Spirometry and oscillometry (tremoFlo® C-100, Thorasys Thoracic Medical Systems Inc., Montreal, Canada) were performed according to published guidelines during a routine visit to the Montreal Chest Institute Adult CF Clinic, McGill University Health Centre in 92 adults with established CF in stable state (mean age = 33.0 ± SE 1.3 yrs, 51 men). Oscillometry parameters included respiratory resistance at 5 Hz (R5), the difference in respiratory resistance at 5 and 20 Hz (R5-20), respiratory reactance at 5 Hz (X5), respiratory reactance area (AX), and resonant frequency (Fres).Results: Respiratory function was significantly reduced for the group (forced expiratory volume in one second, FEV1 = 2.27 ± SE 0.1 L; Z score = -3.38 ± SE 0.23). There was generally a good to strong correlation between spirometry and oscillometry parameters, particularly between FEV1 and both X5 and AX, and all relationships were highly significant (P < 0.001). Results were generally similar when expressed as absolute values or Z scores. Logistic regression and marginal

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Patient-Reported Outcome Measures for Symptom Perception During a Cystic Fibrosis Exacerbation

Abstract: Of the current PROMs used during CF pulmonary exacerbations, only 2 have been developed for this purpose, and only the CFRSD fulfilled all FDA guideline criteria. To date, there is no instrument that assesses exacerbation-specific symptom distress.

Cited by 8 publications

References 59 publications

The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review

The measurement properties of tests and tools used in cystic fibrosis studies: a systematic review

Piloting the Clinical Value of Wearable Cardiorespiratory Monitoring for People with Cystic Fibrosis

Oscillometry to Assess Respiratory Function in Adult Cystic Fibrosis

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