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

StudyPalliative medicine reports· Jan 2026

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

Clara Mao, Lori Herbst

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Palliative & End-of-LifeStudyClinical practiceQ1IF 1.4

Quality improvement effort raised code status order documentation to 72% in Duchenne muscular dystrophy.

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

Clara Mao, Lori Herbst

Palliative medicine reports · Jan 2026

Background

Duchenne muscular dystrophy (duchenne muscular dystrophy) is a progressive neuromuscular disease.

Methods

Identified key drivers included provider awareness of prior advance care planning conversations, documentation workflow, and patient readiness for conversations.

n = 123 visits

Results

documentation of code status wishes more than tripled after the effort, most patients now covered

HCPOA baseline

29%

HCPOA follow-up

68%

Code status baseline

6%

Code status follow-up

72%

More results

123 visits were reviewed over 13 months.

“

Conclusion · 1 of 2

This project demonstrated that many young adults with duchenne muscular dystrophy were open to advance care planning conversations, as reflected in improved rates of health care power of attorney paperwork completion and code status order documentation.

Conclusion · 2 of 2

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.

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

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

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