Obesity and loss of ambulation are associated with lower extremity oedema in Duchenne muscular dystrophy.

Patients with Duchenne muscular dystrophy have multiple risk factors for lower extremity oedema. This study sought to define the frequency and predictors of oedema. Patients aged 15 years and older were screened by patient questionnaire, and the presence of oedema was confirmed by subsequent physical exam.

Emergency Planning as Part of Healthcare Transition Preparation for Patients with Duchenne Muscular Dystrophy.

Background: Emergency care planning is an important component of healthcare transition, particularly for patients with medical complexity. Duchenne muscular dystrophy (DMD) is a complex, progressive pediatric-onset disease affecting multiple organ systems including impairment of cardiac and pulmonary function, high risk for fractures, fat embolism, adrenal crisis and malignant hyperthermia. Appropriate interdisciplinary emergency management is critical for survival for these patients.

Implementation of a Portable Medical Summary for Adolescents and Young Adults With Medical Complexity in Transition to Adult Health Care.

Background: Adolescents and young adults (AYA) with special health care needs are living into adulthood, as improvements in care increase the likelihood of survival. Fewer than half have the resources needed to transition to adult care (McPheeters et al., 2014).