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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]

PMID: 32577867

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Project description:BackgroundPulmonary nodules (PNs) are commonly considered too small to cause respiratory symptoms. However, many PN patients present with respiratory symptoms of unknown origin. This study aims to explore these symptoms and identify the associated factors.MethodsDemographic and clinical information were retrospectively collected from 1,633 patients with incidental PNs who visited the thoracic outpatient clinic of Guangdong Provincial People's Hospital. Hospital Anxiety and Depression Scale was used to assess their anxiety and depression level. Logistic regression analyzes were employed to assess the independent risk factors for respiratory symptoms and the psychological impact on patients.ResultsAmong the 1,633 patients, 37.2% reported at least one respiratory symptom. The most common symptoms in patients with PNs were cough (23.6%), followed by chest pain (14.0%), expectoration (13.8%) and hemoptysis (1.3%). Patients with large PNs (>20 mm) showed significantly higher odds of having cough [odds ratio (OR) =2.5; P=0.011] and expectoration (OR =3.6; P=0.001). Patients with multiple PNs were more susceptible to chest pain compared to those with solitary PNs (OR =1.5; P=0.007). Environmental factors such as passive smoking, kitchen fume pollution, environmental dust were the consistent risk contributors to the presence of these respiratory symptoms. Comparable findings were observed among the subgroup of individuals who undergo chest computed tomography scans as a part of their routine health check-up. Presence of respiratory symptoms, especially chest pain, was associated with increased the odds of anxiety (OR =2.2; P<0.001) and depression (OR =2.5; P<0.001) in patients.ConclusionsRespiratory symptoms are common in PN patients, exhibiting a higher prevalence in patients with larger and multiple PNs and there is a strong association with exposure to environmental risk factors. These symptoms might exacerbate the anxiety and depression level in patients.

Project description:People with motor neuron disease often experience non-motor symptoms that may occur secondary to, or distinct from, motor degeneration and that may significantly reduce quality of life, despite being under-recognized and evaluated in clinical practice. Non-motor symptoms explored in this population-based study include pain, fatigue, gastrointestinal issues, poor sleep, low mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction. People registered on the Clinical Audit Research and Evaluation of motor neuron disease platform, the Scottish Motor Neuron Disease Register, were invited to complete a questionnaire on non-motor symptoms and a self-reported Amyotrophic Lateral Sclerosis Functional Rating Scale. The questionnaire comprised a pre-defined list of 11 potential non-motor symptoms, with the opportunity to list additional symptoms. A total of 120 individuals participated in this cross-sectional study, a 39% response rate of those sent questionnaires (n = 311); 99% of participants recruited (n = 120) experienced at least one non-motor symptom, with 72% (n = 120) reporting five or more. The symptoms most often reported were pain and fatigue (reported by 76% of participants, respectively). The symptoms reported to be most impactful were gastrointestinal issues (reported as 'severe' by 54% of participants who experienced them), followed by pain and problematic saliva (51%, respectively). Lower Amyotrophic Lateral Sclerosis Functional Rating Scale scores, indicating more advanced disease and being a long survivor [diagnosed over 8 years ago; Black et al. (Genetic epidemiology of motor neuron disease-associated variants in the Scottish population. Neurobiol Aging. 2017;51:178.e11-178.e20.)], were significantly associated with reporting more symptoms; 73% of respondents were satisfied with the frequency that non-motor symptoms were discussed in clinical care; 80% of participants indicated they believe evaluation of non-motor symptom is important to include as outcomes in trials, independent of their personal experience of these symptoms. The preferred method of assessment was completing questionnaires, at home. The overwhelming majority of people with motor neuron disease report non-motor symptoms and these frequently co-occur. Pain, fatigue, gastrointestinal issues, sleep, mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction are prevalent. People with motor neuron disease who had worse physical function and those who were long survivors were more likely to report more symptoms. Where reported, these symptoms are frequent, impactful and a priority for people with motor neuron disease in clinical care and trial design.

Project description:ImportancePatient-reported outcome (PRO) measures address the need for patient-centered data and are now used in diverse clinical, research, and policy pursuits. They are important in conditions causing upper airway-related dyspnea in which the patient's reported experience and physiological data can be discrepant.ObjectivesTo perform a systematic review of the literature on upper airway dyspnea-related PRO measures and to rigorously evaluate each measure's developmental properties, validation, and applicability.Evidence reviewThis study strictly adhered to Preferred Reporting Items for Systematic Review and Meta-analysis (PRISMA) guidelines. MEDLINE via the PubMed interface, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and the Health and Psychosocial Instruments (HaPI) database were searched using relevant vocabulary terms and key terms related to PRO measures and upper airway-related dyspnea. Three investigators performed abstract review, and 2 investigators independently performed full-text review by applying an established checklist to evaluate the conceptual model, content validity, reliability, construct validity, scoring and interpretability, and respondent burden and presentation of each identified instrument. The initial literature search was conducted in November 2014 and was updated in April 2016.FindingsOf 1269 studies reviewed, 3 upper airway-related dyspnea PRO measures met criteria for inclusion. One PRO measure was designed de novo to assess upper airway-related dyspnea symptoms and monitor treatment outcomes, while 2 were adapted from established instruments designed for lower airway disease. Measurement properties and psychometric characteristics differed, and none met all checklist criteria. Two met a criterion in each of 7 domains evaluated. Two demonstrated test-retest and internal consistency reliability, and 2 showed that their scores were responsive to change. Thematic deficiencies in current upper airway-related dyspnea PRO measures are lack of patient involvement in item development (content validity), plan for interpretation, and literacy level assessments.Conclusions and relevancePRO measures are critical in the assessment of patients with upper airway-related dyspnea. Three instruments with disparate developmental rigor have been designed or adapted to assess this construct. Care must be taken to understand the measurement characteristics and contextual relevance before applying these PRO measures for clinical, research, or quality initiatives.

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

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

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