Transition from Childhood to Adulthood in Patients with Duchenne Muscular Dystrophy.
Eliza WasilewskaSylwia MałgorzewiczAgnieszka Sobierajska-RekJoanna Jabłońska-BrudłoLucyna GórskaKarolina ŚledzińskaJoanna Bautembach-MinkowskaJolanta WierzbaPublished in: Medicina (Kaunas, Lithuania) (2020)
Recently, progress has been observed in the knowledge about Duchenne Muscular Dystrophy (DMD), which is a severe and commonly diagnosed genetic myopathy in childhood, historically resulting in early death. Currently, there are a lot of methods available to improve the clinical course of DMD and extend patients' life expectancy to more than 30 years of age. The key issue for DMD patients is the period between 16-18 years of age, which is described as a transition from pediatric- to adult-oriented healthcare. Adolescents and adults with DMD have highly complex healthcare needs associated with long-term steroid usage, orthopedic, ventilation, cardiac, and gastrointestinal problems. The current paper provides a comprehensive overview of special healthcare needs related to the transfer of a patient with DMD from child-oriented to adult-oriented care. Additionally, the need to organize effective care for adults with DMD is presented.
Keyphrases
- duchenne muscular dystrophy
- healthcare
- muscular dystrophy
- end stage renal disease
- newly diagnosed
- ejection fraction
- chronic kidney disease
- prognostic factors
- physical activity
- young adults
- quality improvement
- depressive symptoms
- early onset
- gene expression
- patient reported outcomes
- social media
- copy number
- chronic pain
- acute respiratory distress syndrome
- pain management