Gastrostomy (feeding) tubes are one way of managing swallowing impairments (dysphagia) in patients living with serious illnesses. For patients, families, and health care providers to make well-informed, preference-aligned decisions regarding gastrostomy tube placement, each group must understand the other's goals, concerns, and perspectives. Thus, the goal of this scoping review is to characterize the factors influencing gastrostomy tube placement decisions for people with serious illnesses.
View Article and Find Full Text PDFClin Park Relat Disord
November 2024
Introduction: Malnutrition is a leading cause of death for persons living with X-linked dystonia-parkinsonism (XDP), a degenerative disease endemic to the Philippines. Difficulty swallowing has been linked to malnutrition in other populations; however, knowledge of this relationship is limited in XDP. As such, the purpose of this study was to determine the association between dysphagia and malnutrition in this population.
View Article and Find Full Text PDFFace transplantation has emerged as reconstructive option for the most challenging facial deformities. A comprehensive analysis of functional outcomes, medical complications, incidence of malignancy, and chronic rejection in face transplantation recipients over an extended follow-up period has not yet been published leaving a notable gap in the literature. We retrospectively collected data of morbidity, rejection, vasculopathy, metabolic side effects, as well as functional outcome of sensory return, facial motor function, and speech from 9 patients who underwent face transplantation at Brigham and Women's Hospital between 2009 and 2020.
View Article and Find Full Text PDFIn current sensorimotor theories pertaining to speech perception, there is a notable emphasis on the involvement of the articulatory-motor system in the processing of speech sounds. Using ultra-high field diffusion-weighted imaging at 7 Tesla, we visualized the white matter tracts connected to areas activated during a simple speech-sound production task in 18 healthy right-handed adults. Regions of interest for white matter tractography were individually determined through 7T functional MRI (fMRI) analyses, based on activations during silent vocalization tasks.
View Article and Find Full Text PDFParkinsonism Relat Disord
March 2024
Introduction: X-linked dystonia-parkinsonism (XDP) is a neurodegenerative disorder that may result in severe speech impairment. The literature suggests that there are differences in the speech of individuals with XDP and healthy controls. This study aims to examine the motor speech characteristics of the mixed dystonia-parkinsonism phase of XDP.
View Article and Find Full Text PDFX-linked dystonia parkinsonism is a neurodegenerative movement disorder that affects men whose mothers originate from the island of Panay, Philippines. Current evidence indicates that the most likely cause is an expansion in the gene that may be amenable to treatment. To prepare for clinical trials of therapeutic candidates for X-linked dystonia parkinsonism, we focused on the identification of quantitative phenotypic measures that are most strongly associated with disease progression.
View Article and Find Full Text PDFCurr Phys Med Rehabil Rep
June 2023
Purpose Of Review: Difficulty swallowing (dysphagia) is of great concern to patients with ALS as its complications can increase mortality and reduce the quality of life. This review aims to provide an overview of the recent developments and the current state of assessment, treatment, and management of dysphagia in ALS.
Recent Findings: The optimal timing of assessment, treatment, and management of dysphagia may be early in the ALS disease process, even before the dysphagia occurs.
Plast Reconstr Surg
August 2023
Background: Assessment of motor function restoration following face transplant (FT) is difficult, as standardized, bilateral tests are lacking. This study aims to bolster support for software-based analysis through international collaboration.
Methods: FaceReader (Noldus, Wageningen, The Netherlands), a facial expression analysis software, was used to analyze posttransplant videos of eight FT patients from Boston, Massachusetts (range, 1 to 9 years after transplant), two FT patients from Helsinki, Finland (range, 3 to 4 years after transplant), and three FT patients from Antalya, Turkey (range, 6.
Although speech declines rapidly in some individuals with amyotrophic lateral sclerosis (ALS), longitudinal changes in speech have rarely been characterized. The study objectives were to model the rate of decline in speaking rate and speech intelligibility as a function of disease onset site, sex, and age at onset in 166 individuals with ALS; and estimate time to speech loss from symptom onset. We also examined the association between clinical (speaking rate/intelligibility) measures and patient-reported measures of ALS progression (ALSFRS-R).
View Article and Find Full Text PDFWomens Health Rep (New Rochelle)
May 2022
Introduction: Premenstrual syndrome (PMS) affects the majority of women and is characterized by physical, behavioral, and mood symptoms, which can have a profound impact on quality of life. PMS symptoms have also been linked to licit substance use. This study examined the relationships between daily/problem use (DPU) of caffeine (Caf), alcohol (Alc), and tobacco (Cig) and PMS symptomology in a sample of college women.
View Article and Find Full Text PDFObjectives: Although facial transplantation is considered effective for restoring facial appearance, research on speech outcomes following surgery is limited. More research is critically needed to inform patients of expected rates and extent of recovery, and to develop interventions aimed at improving speech outcomes.
Methods: Four patients in early recovery (3 weeks-24 months postsurgery) and three patients in late recovery (36-60 months postsurgery) were included.
Amyotroph Lateral Scler Frontotemporal Degener
May 2022
: For patients diagnosed with ALS, dysphagia can result in aspiration, malnutrition, and mortality. The purpose of this study was to develop a clinical prediction model capable of identifying patients with ALS at imminent risk for developing swallowing complications. : A retrospective cohort study using the Pooled Resource Open-Access ALS Clinical Trials Database (PRO-ACT) was conducted.
View Article and Find Full Text PDFParkinsonism Relat Disord
August 2021
Introduction: X-linked Dystonia-Parkinsonism (XDP) is a progressive, disabling disease characterized by the devastating impairment of bulbar function, including speech and swallowing. Despite these detrimental impacts, bulbar impairments in this population are not well characterized.
Objectives: To identify impairments in the bulbar system measured by oromotor performance in individuals with XDP relative to healthy controls.
A number of foodborne outbreaks have occurred in the past decade, with higher incidences associated with romaine lettuce and strawberries. Contaminated agricultural water has been reported as the source of microbial contamination in most of these outbreaks. Maintaining the adequate and sanitary quality (0 /100 mL) of agricultural water can be challenging during post-harvest operations such as washing.
View Article and Find Full Text PDFThere is limited experience with facial retransplantation (fRT). We report on the management of facial retransplantation in a facial vascularized composite allotransplant recipient following irreversible allograft loss 88 months after the first transplant. Chronic antibody-mediated rejection and recurrent cellular rejection resulted in a deteriorated first allograft and the patient underwent retransplantation.
View Article and Find Full Text PDFIntroduction/aims: Dysphagia worsens mortality and quality of life for persons diagnosed with amyotrophic lateral sclerosis (ALS), yet our understanding of its incidence and timing remains limited. In this study we sought to estimate dysphagia incidence and dysphagia-free survival over time.
Methods: Using data from the Pooled Resource Open-Access ALS Clinical Trials Database, we compared characteristics of persons with and without dysphagia upon study entry.
Despite signs of facial nerve recovery within a few months following face transplantation, speech deficits persist for years. Behavioral speech modifications (e.g.
View Article and Find Full Text PDFAbstract: Grocery stores handle fresh produce in large quantities daily. According to the Food and Drug Administration Food Code, food is to be stored at least 15 cm above the floor, and all foods shall be protected from any source of contamination or otherwise discarded. It is reported in the literature that dropped produce could be a potential source of microbial contamination.
View Article and Find Full Text PDFBackground: The impact of tongue dysfunction on deglutition in persons diagnosed with amyotrophic lateral sclerosis (ALS) is not well understood. This information is needed to improve our understanding of the mechanisms of swallowing impairment, for identifying risk factors of dysphagia, and for establishing impairment-specific treatments aimed at slowing the loss of swallow function.
Objectives: The goals of this study were to determine the relation between biomechanical measures of oral tongue movements using electromagnetic articulography (EMA) and measures of swallow physiology, swallow safety and efficiency, and self-reported swallowing function.
Introduction: Universally established comprehensive clinical bulbar scales objectively assessing disease progression in amyotrophic lateral sclerosis (ALS) are currently lacking. The goal of this working group project is to design a best practice set of provisional bulbar ALS guidelines, available for immediate implementation within all ALS clinics.
Methods: ALS specialists across multiple related disciplines participated in a series of clinical bulbar symposia, intending to identify and summarize the currently accepted best practices for the assessment and management of bulbar dysfunction in ALS Results: Summary group recommendations for individual speech, Augmentative and Alternative Communication (AAC), and swallowing sections were achieved, focusing on the optimal proposed level of care within each domain.
Early identification of bulbar involvement in persons with ALS is critical for improving diagnosis and prognosis; however, efficacious diagnostic markers have not yet been identified. The purpose of this study was to determine whether kinematic changes of the tongue and jaw during swallowing, measured using 3D electromagnetic articulography (EMA), predate clinically identifiable symptoms of speech and swallowing impairment in persons diagnosed with ALS. Data were collected from 16 adults diagnosed with ALS and 18 neurotypical controls.
View Article and Find Full Text PDFBackground: Trismus can be a challenging consequence of ballistic trauma to the face, and has rarely been described in the setting of face transplantation. Almost half of all current face transplant recipients in the world received transplantation to restore form and function after a ballistic injury. Here we report our experience and challenges with long standing trismus after face transplantation.
View Article and Find Full Text PDFBackground: For more than a decade, a large proportion of research on caffeine use in college students has focused on energy drinks (ED), demonstrating an association between ED consumption and heavy/problem alcohol use. The present study examined the relationship between daily coffee consumption and varied measures of alcohol use and problems in a sample of college women.
Methods: Participants were undergraduate females (N=360) attending an urban university in 2001-02 and prior to the rise in ED popularity on college campuses.