Assessment of the relationship between disease progression and goals of care by individuals with Duchenne muscular dystrophy and their caregivers.
Daniel H GrossoehmeRachel ThienprayoonHemant SawnaniRachel JenkinsIan RossmanKathryn MosherSarah FriebertPublished in: Muscle & nerve (2022)
Routine inquiry into AYA and caregiver goals for living may normalize goals of care conversations, maximizing patients' ability to process information, reflect on preferences, and articulate wishes. Discussing present-day goals and abilities may invite conversation about future preferences. Framing conversations in terms of AYA autonomy may increase motivation to engage in such discussions.
Keyphrases
- duchenne muscular dystrophy
- palliative care
- healthcare
- global health
- end stage renal disease
- advance care planning
- ejection fraction
- quality improvement
- newly diagnosed
- chronic kidney disease
- peritoneal dialysis
- clinical practice
- decision making
- affordable care act
- patient reported outcomes
- current status
- social media
- health insurance