Using patient-reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron dise
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Using patient‑reported symptoms of dyspnea for screening reduced respiratory function in patients with motor neuron diseases Jochem Helleman1,2 · Esther T. Kruitwagen‑van Reenen1,2 · J. Bakers1 · Willeke J. Kruithof1 · Annerieke C. van Groenestijn4 · Rineke J. H. Jaspers Focks5 · Arthur de Grund6 · Leonard H. van den Berg3 · Johanna M. A. Visser‑Meily1,2 · Anita Beelen1,2 Received: 27 March 2020 / Revised: 10 June 2020 / Accepted: 16 June 2020 © The Author(s) 2020
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. Keywords Motor neuron disease · Amyotrophic lateral sclerosis · Dyspnea · Vital capacity · Respiratory function · Patientreported outcome measure
Electronic supplementary material The online version of this article (https://doi.org/10.1007/s00415-020-10003-5) contains supplementary material, which is available to authorized users. * Anita Beelen [email protected] 1
Department of Rehabilitation, Physical Therapy Science and Sports, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX Utrecht, The Netherlands
Center of Excellence for Rehabilitation Medicine, UMC Utrecht Brain Center, University Medical Center Utrecht,
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