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

How to define high quality end-of-life (EOL) care for children with advanced heart disease (AHD) is unknown.

We sought to develop expert-panel endorsed quality measures (QM) for EOL for pediatric AHD.

The Modified Delphi panel methodology was used to assess potential QM. Proposed QMs were derived from EOL QM in pediatric oncology, previously conducted bereaved parent interviews, and advisory board discussions. Panelists were nominated by professional organizations, research collaboratives, and national experts. The panel included 13 experts from pediatric cardiology, pediatric palliative care, nursing, psychology, and bereavement services. Panelist received a literature review of 35 proposed QM. The panelist scored the importance of each measure on a nine-point scale (higher = 9) prior to discussion of the measures during a four hour video call, where two additional measures were added. Panelists then re-scored the measures. QM with median scores ≥7 and with at least nine experts scoring it as ≥4 were endorsed.

Twenty-eight of 37 QM were endorsed. They fell into four categories: symptom management (e.g., children receiving the help they wanted for pain), communication and information provided (e.g., prognostic communication), hospital policies and guidelines (e.g., less restrictive EOL environment), and supportive care services (e.g., subspecialty palliative care involvement). Unendorsed measures included measures related to transporting the child to the morgue and location of death.

These QM are an important step in improving and standardizing the quality of EOL care for children with AHD. Next steps include validating the measures with a cohort of bereaved parents.