Journal ArticleDOI
What lurks in the mind of someone with dysphagia
Reads0
Chats0
TLDR
The study by Youssof and colleagues in this issue of the journal evaluates the effect of chronic dysphagia on quality of life (QOL) in patients with oculopharyngeal muscular dystrophy and identified limitations of the SWAL-QOL in this disorder, including domains with low specificity for OPMD patients with Dysphagia.Abstract:
Submitted are editorial comments and implications of the above-captioned research manuscript This article is protected by copyright. All rights reserved.read more
Citations
More filters
Journal ArticleDOI
Experienced fatigue in people with rare disorders: a scoping review on characteristics of existing research
TL;DR: Experienced fatigue is an under-recognized and under-researched feature in persons with many different rare diseases as mentioned in this paper , and more research on experienced fatigue is needed, both in children and adults with rare diseases.
The impact of dysphagia and gastrostomy on quality of life in caregivers of patients with amyotrophic lateral sclerosis
TL;DR: Patients with bulbar-onset ALS and their caregivers were recruited regardless of their decision to accept or decline future gastrostomy, and the Modified Caregiver Strain Index (MCSI) was completed to assess levels of caregiver strain as an index of quality of life.
References
More filters
Journal ArticleDOI
The SWAL-QOL and SWAL-CARE outcomes tool for oropharyngeal dysphagia in adults: III. Documentation of reliability and validity.
Colleen A. McHorney,JoAnne Robbins,Kevin Lomax,John C. Rosenbek,Kimberly A. Chignell,Amy E. Kramer,D. Earl Bricker +6 more
TL;DR: It is intended that the standardization and publication of the SWAL–QOL and theSWAL–CARE will facilitate their use in clinical research and clinical practice to better understand treatment effectiveness as a critical step toward improving patients' quality of life and quality of care.
Journal ArticleDOI
Defining Swallowing-Related Quality of Life Profiles in Individuals with Amyotrophic Lateral Sclerosis.
TL;DR: Overall, SR-QOL was moderately reduced in this cohort of ALS patients and profoundly impacted in ALS aspirators and individuals with advanced disease.
Journal ArticleDOI
Dysarthria and dysphagia in Amyotrophic Lateral Sclerosis with spinal onset: a study of quality of life related to swallowing.
TL;DR: Dysarthria and dysphagia were common symptoms in patients with spinal onset of ALS and the swallowing quality of life decrease was directly related to with severity of dysarthria, and the SWAL-QOL outcomes was significant for the same domains.
Journal ArticleDOI
Dysphagia-related quality of life in oculopharyngeal muscular dystrophy: Psychometric properties of the SWAL-QOL instrument.
TL;DR: The Swallowing Quality of Life instrument (SWAL‐QOL) is a patient‐reported outcome measure of swallowing‐related quality of life (SR‐QoL) and its psychometric properties in oculopharyngeal muscular dystrophy are not known.