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Using patient-reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron diseases.


ABSTRACT: BACKGROUND:Poor monitoring of respiratory function may lead to late initiation of non-invasive ventilation (NIV) in patients with motor neuron diseases (MND). Monitoring could be improved by remotely assessing hypoventilation symptoms between clinic visits. We aimed to determine which patient-reported hypoventilation symptoms are best for screening reduced respiratory function in patients with MND, and compared them to the respiratory domain of the amyotrophic lateral sclerosis functional rating scale (ALSFRS-R). METHODS:This prospective multi-center study included 100 patients with MND, who were able to perform a supine vital capacity test. Reduced respiratory function was defined as a predicted supine vital capacity???80%. We developed a 14-item hypoventilation symptom questionnaire (HYSQ) based on guidelines, expert opinion and think-aloud interviews with patients. Symptoms of the HYSQ were related to dyspnea, sleep quality, sleepiness/fatigue and pneumonia. The diagnostic performances of these symptoms and the ALSFRS-R respiratory domain were determined from the receiver operating characteristic (ROC) curves, area under the curve (AUC), sensitivity, specificity, predictive values and accuracy. RESULTS:Dyspnea-related symptoms (dyspnea while eating/talking, while lying flat and during light activity) were combined into the MND Dyspnea Scale (MND-DS). ROC curves showed that the MND-DS had the best diagnostic performance, with the highest AUC?=?0.72, sensitivity?=?75% and accuracy?=?71%. Sleep-quality symptoms, sleepiness/fatigue-related symptoms and the ALSFRS-R respiratory domain showed weak diagnostic performance. CONCLUSION:The diagnostic performance of the MND-DS was better than the respiratory domain of the ALSFRS-R for screening reduced respiratory function in patients with MND, and is, therefore, the preferred method for (remotely) monitoring respiratory function.

SUBMITTER: Helleman J 

PROVIDER: S-EPMC7578163 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Using patient-reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron diseases.

Helleman Jochem J   Kruitwagen-van Reenen Esther T ET   Bakers J J   Kruithof Willeke J WJ   van Groenestijn Annerieke C AC   Jaspers Focks Rineke J H RJH   de Grund Arthur A   van den Berg Leonard H LH   Visser-Meily Johanna M A JMA   Beelen Anita A  

Journal of neurology 20200623 11


<h4>Background</h4>Poor monitoring of respiratory function may lead to late initiation of non-invasive ventilation (NIV) in patients with motor neuron diseases (MND). Monitoring could be improved by remotely assessing hypoventilation symptoms between clinic visits. We aimed to determine which patient-reported hypoventilation symptoms are best for screening reduced respiratory function in patients with MND, and compared them to the respiratory domain of the amyotrophic lateral sclerosis functiona  ...[more]

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