Quality Improvement to Promote Advance Care Planning for Young Adults with Duchenne Muscular Dystrophy

Duchenne muscular dystrophy (DMD) is a progressive neuromuscular disease. With improved life expectancy of patients with DMD, the need for advance care planning (ACP) has been identified by patients and providers. A quality improvement effort to address this gap was initiated at an academic children's hospital where patients are seen within a multidisciplinary neuromuscular clinic, which integrates palliative care into visits starting at age 18. The team followed outcome measures of (1) health care power of attorney (HCPOA) paperwork completion and (2) code status order documentation from baseline rates of 29% and 6%, respectively, between August 2024 and August 2025 for patients with DMD aged 18 or older.

Identified key drivers included provider awareness of prior ACP conversations, documentation workflow, and patient readiness for conversations. Interventions included: creation of a DMD ACP Checklist, provider education, weekly e-mails, and access to state-specific ACP documents.

123 visits were reviewed over 13 months. Improvement interventions led to a centerline shift for both outcome measures, with an increase from 29% to 68% for HCPOA paperwork completion and from 6% to 72% for code status order documentation.

This project demonstrated that many young adults with DMD were open to ACP conversations, as reflected in improved rates of HCPOA paperwork completion and code status order documentation. However, some families continued to express discomfort with topics surrounding end-of-life. Further exploration is needed to understand how to best address these challenges in order to provide goal-concordant care with disease progression.