Health Care Transition Experiences of Males with Childhood-onset Duchenne and Becker Muscular Dystrophy: Findings from the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) Health Care Transitions and Other Life Experiences Survey
Year: 2018
Type: article
Study design: Observational Study
Abstract: This study identified potential barriers to the successful health care transition of males with DBMD. The results of this study may indicate a lack of targeted informational resources and education focused on supporting the transition of young men with DBMD as they age from adolescence into adulthood within the healthcare system. Future studies could determine the reasons for the potential barriers to health care and identify the optimal transition programs for males with DBMD. There are a few online resources on transition available to adolescents and young adults with special health care needs.
Source: PLoS Currents
Institutions: Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities, National Center for HIV/AIDS Viral Hepatitis STD and TB Prevention, Colorado School of Public Health, Parent Project Muscular Dystrophy, Children's Hospital Colorado, University of Rochester Medicine, University of Rochester, RTI International, New York State Department of Health, University at Buffalo, State University of New York
Language: English
Subfield: Speech and Hearing
Field: Health Professions
Domain: Health Sciences
Open Access status: green
Awards: COMP A-MD AND NEUROMUSCULAR DISORDER SURVEILLANCE AND RESEARCH IN IOWA, SUREILLANCE AND EPIDEMIOLOGIC RESEARCH OF DUCHENNE AND BECKER MUSCULAR DYSTROPHY, COMP A-SURVEILLANCE AND RESEARCH OF MUSCULAR DYSTROPHIES AND NEUROMUSCULAR DISORDERS, SURVEILLANCE AND EPIDEMIOLOGIC RESEARCH OF DUCHENNE AND BECKER MUSCULAR DYSTROPHY, MD STARNET: FEASIBILITY OF EXPANSION TO OTHER MUSCULAR DYSTROPHIES, ARIZONA MUSCULAR DYSTROPHY SURVEILLANCE AND RESEARCH PROGRAM, COMP A-NY STATE SURVEILLANCE AND RESEARCH OF MD AND NEUROMUSCULAR DISORDERS, SURVEILLANCE AND EPIDEMIOLOGIC RESEARCH OF DUCHENNE AND BECKER MUSCULAR DYSTROPHY
OpenAlex ID: W2888315988