Triggers for Serious Illness Conversations in Adults With Congenital Heart Disease: A Delphi Consensus Study

Adults with congenital heart disease (CHD) experience earlier and higher cardiovascular morbidity and mortality than the general population. Serious illness conversations (SICs) can help align care with patients' values and preferences but are underused, partly because clinicians lack guidance on when to initiate them.

This study aimed to develop consensus-based clinical criteria that should prompt SICs in adults with CHD, incorporating perspectives from clinical experts, people with lived experience (PWLE), and advocacy group representatives.

In a modified Delphi study, an international panel of 39 health care professionals rated 67 potential SIC trigger criteria over 3 rounds. Consensus was predefined as ≥70% agreement. A second panel of 4 PWLEs and 4 advocacy group representatives rated the Round 1 consensus triggers for appropriateness. Triggers deemed sufficient on their own were labeled as "major," those requiring at least one additional criterion were labeled as "minor."

Forty-one clinical experts were invited, of which 39 agreed to participate. Response rates were 94.9% in Rounds 1 and 2, and 92.3% in Round 3. Fifty of 67 criteria (74.6%) reached consensus in Round 1, and all were judged appropriate by PWLE and advocacy group representatives. Eighteen criteria were classified as major, spanning "patient needs," "CHD-defect characteristics," "lifetime events," "preintervention" triggers, "disease progression," and the surprise question.

This international consensus identified 18 major trigger criteria to support timely SIC initiation in adults with CHD. These criteria span diverse clinical scenarios and provide a practical framework for integrating SICs into routine care for adults with CHD.