Amina Chaouch
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View article: Fatigue in amyotrophic lateral sclerosis/motor neuron disease: prevalence, influences and trajectories
Fatigue in amyotrophic lateral sclerosis/motor neuron disease: prevalence, influences and trajectories Open
Objective: In a large cohort of people with amyotrophic lateral sclerosis/motor neuron disease (pwALS), we examined the age-sex prevalence of fatigue, its relationship to other symptoms and functioning, and trajectories over time. Methods:…
View article: Patient reported outcome measures require scale metrification and quantified precision: evidence from the assessment of breathlessness in people with ALS/MND
Patient reported outcome measures require scale metrification and quantified precision: evidence from the assessment of breathlessness in people with ALS/MND Open
Introduction: Precision (how closely repeated measures match) and responsiveness (ability to detect change over time) are critical properties of patient reported outcome measures (PROMs). Smallest Detectable Difference (SDD) is a useful st…
View article: Determinants and progression of stigma in amyotrophic lateral sclerosis/motor neuron disease
Determinants and progression of stigma in amyotrophic lateral sclerosis/motor neuron disease Open
Objective: Stigma in amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) may be felt or enacted; felt stigma covers feeling devalued by the illness, whereas enacted stigma refers to being treated differently because of it. Stigma…
View article: The Use of Digital Devices to Monitor Physical Behavior in Motor Neuron Disease: Systematic Review (Preprint)
The Use of Digital Devices to Monitor Physical Behavior in Motor Neuron Disease: Systematic Review (Preprint) Open
BACKGROUND Motor neuron disease (MND) is a progressive and incurable neurodegenerative disease. The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is the primary clinical tool for assessing disease severity and p…
View article: Dyspnea (breathlessness) in amyotrophic lateral sclerosis/motor neuron disease: prevalence, progression, severity, and correlates
Dyspnea (breathlessness) in amyotrophic lateral sclerosis/motor neuron disease: prevalence, progression, severity, and correlates Open
Dyspnea, or breathlessness, is an important symptom in amyotrophic lateral sclerosis/motor neuron disease (ALS/MND). We examined the measurement properties of the Dyspnea-12. Rasch analysis enabled conversion of raw Dyspnea-12 scores to in…
View article: Improving the measurement properties of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): deriving a valid measurement total for the calculation of change
Improving the measurement properties of the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R): deriving a valid measurement total for the calculation of change Open
The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) total score is a widely used measure of functional status in Amyotrophic Lateral Sclerosis/Motor Neuron Disease (ALS), but recent evidence has raised doubts about…
View article: A randomized double-blind clinical trial on safety and efficacy of tauroursodeoxycholic acid (TUDCA) as add-on treatment in patients affected by amyotrophic lateral sclerosis (ALS): the statistical analysis plan of TUDCA-ALS trial
A randomized double-blind clinical trial on safety and efficacy of tauroursodeoxycholic acid (TUDCA) as add-on treatment in patients affected by amyotrophic lateral sclerosis (ALS): the statistical analysis plan of TUDCA-ALS trial Open
Background Amyotrophic lateral sclerosis (ALS) is a highly debilitating neurodegenerative condition. Despite recent advancements in understanding the molecular mechanisms underlying ALS, there have been no significant improvements in thera…
View article: Perry Syndrome with Intrafamilial Heterogeneity in Presentation and Survival Including Acute Respiratory Failure: Case Series
Perry Syndrome with Intrafamilial Heterogeneity in Presentation and Survival Including Acute Respiratory Failure: Case Series Open
Background Perry syndrome is a rare autosomal dominant parkinsonian disorder characterized by respiratory failure. The variability in respiratory presentation in this condition is incompletely understood. Cases We report 2 first‐degree rel…