Quality Measures for End-of-Life in Children with Heart Disease: A Modified Delphi Approach

Area of Science:

• Pediatric Cardiology
• Palliative Care
• Healthcare Quality Improvement

Background:

• Defining high-quality end-of-life (EOL) care for pediatric patients with advanced heart disease (AHD) remains undefined.
• Expert consensus is needed to establish quality measures (QM) for EOL care in pediatric AHD.

Purpose of the Study:

• To develop expert-panel endorsed quality measures (QM) for end-of-life (EOL) care in pediatric advanced heart disease (AHD).

Main Methods:

• Modified Delphi panel methodology utilized with 13 experts in pediatric cardiology, palliative care, nursing, psychology, and bereavement.
• Experts reviewed 35 proposed QM, scored their importance, and discussed them via video conference.
• Endorsement required median scores ≥7 and at least 9 experts scoring ≥4.

Main Results:

• Twenty-eight out of 37 proposed QM were endorsed by the expert panel.
• Endorsed QM cover symptom management, communication, hospital policies, and supportive care services.
• Key areas include pain management, prognostic communication, flexible hospital environments, and palliative care involvement.

Conclusions:

• The developed QM represent a significant advancement in improving and standardizing EOL care for children with AHD.
• Future validation of these QM with bereaved parents is planned to ensure relevance and applicability.