Essential fatty acid deficiency (EFAD) may occur in the setting of inadequate fat intake, malabsorption, malnutrition, and altered fat metabolism. Humans lack the enzymes to synthesize the essential acids linoleic acid and alpha-linolenic acid, so they must be obtained from the diet. Patients dependent on parenteral nutrition need adequate amounts of these essential fatty acids supplied in lipid injectable emulsions (ILEs).
View Article and Find Full Text PDFBackground: The motivational interviewing (MI) approach has been shown to help move ambivalent smokers toward the decision to quit smoking. There have been several attempts to broaden access to MI through text-based chatbots. These typically use scripted responses to client statements, but such nonspecific responses have been shown to reduce effectiveness.
View Article and Find Full Text PDFBackground: Youth with Duchenne and Becker muscular dystrophy (DBMD) experience challenges in attaining adult roles, which may impact quality of life. New interventions and treatments may facilitate adult role attainment through improved function. Historical data on adult role attainment is important to assess the impact of new interventions on teens and young adults with DBMD.
View Article and Find Full Text PDFNutritional status greatly affects the health of patients, yet the time devoted to nutrition curriculum in medical school is minimal. We implemented a novel approach of teaching the Nutrition Focused Physical Exam (NFPE) as a tool to demonstrate the importance of assessing the nutritional status of patients and learning about malnutrition and nutrient deficiencies.
View Article and Find Full Text PDFAs the proportion of males with Duchenne muscular dystrophy (DMD) surviving into adulthood increases, more information is needed regarding their health care transition planning, an essential process for adolescents and young adults with DMD. The objective of this study was to describe the health care transition experiences of a population of males living with Duchenne or Becker muscular dystrophy (DBMD). The eligible participants, identified through the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) surveillance project, were 16-31 years old and lived in Arizona, Colorado, Georgia, Iowa, or western New York (n=258).
View Article and Find Full Text PDFThe Duchenne Regulatory Science Consortium (D-RSC) was established to develop tools to accelerate drug development for DMD. The resulting tools are anticipated to meet validity requirements outlined by qualification/endorsement pathways at both the U.S.
View Article and Find Full Text PDFDev Med Child Neurol
September 2016
JPEN J Parenter Enteral Nutr
July 2016
Introduction: Malnutrition is common in hospitalized patients in the United States. In 2010, 80,710 of 6,280,710 hospitalized children <17 years old had a coded diagnosis of malnutrition (CDM). This report summarizes nationally representative, person-level characteristics of hospitalized children with a CDM.
View Article and Find Full Text PDFObjectives: The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population.
Methods: Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist.
Objective: To review current approaches for obtaining patient data in Duchenne muscular dystrophy (DMD) and consider how monitoring and comparing outcome measures across DMD clinics could facilitate standardized and improved patient care.
Methods: We reviewed annual standardized data from cystic fibrosis (CF) clinics and DMD care guidelines and consensus statements; compared current approaches to obtain DMD patient data and outcome measures; and considered the best method for implementing public reporting of outcomes, to drive improvements in health care delivery.
Results: Current methods to monitor DMD patient information (MD STARnet, DuchenneConnect, and TREAT-NMD) do not yet provide patients with comparative outcome data.