Triggers for Serious Illness Conversations in Adults With Congenital Heart Disease

BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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." RESULTS: 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. CONCLUSIONS: 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.

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Publication Details

Journal
JACC Advances
Published
2026-07-25
DOI
https://doi.org/10.1016/j.jacadv.2026.103067
Primary Topic
Phonocardiography and Auscultation Techniques
Type
article
Field-Weighted Citation Impact
0.00

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article

Triggers for Serious Illness Conversations in Adults With Congenital Heart Disease

Corina Thomet, Caroline Hertler, Mathias Possner, Sarah Godfrey et al.
JACC Advances
Phonocardiography and Auscultation Techniques
article

Triggers for Serious Illness Conversations in Adults With Congenital Heart Disease

Corina Thomet, Caroline Hertler, Mathias Possner, Sarah Godfrey, Lorna Swan, Rafael Alonso-González, Andrew S. Mackie, Daniel Tobler, Alexander Van De Bruaene, Derek Baas, Chiara Pelosi, Matthias Greutmann, Jasmine Grewal, Christine Bui, Markus Schwerzmann, Jane Hannah, Philip Moons, Jack M. Colman, Adrienne H. Kovacs, Marie-Alexandre CHAIX, Karen Stout, Joanne Nilusha Joseph, Keren Mbondo Kasuku, James Tam, Eva Goossens, Luke J. Burchill, Laura Dos-Subirà, Abigail Khan, Sarah Blissett, Jamil Aboulhosn, Michael Landzberg, Kayla Wolofsky, Alvan Buckley, Warren Lewin, Jolien Roos-Hesselink, Clare O’Donnell, Isabelle Vonder Muhll, Erwin Oechslin, Michelle Keir, Amanda Fregonas, Jill M. Steiner, Gruschen R. Veldtman, Werner Budts, Lene Osmundsen, Shelagh Ross, Geetha Kandavello, Jennifer Graham
article en

Abstract

BACKGROUND: 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. OBJECTIVES: 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. METHODS: 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." RESULTS: 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. CONCLUSIONS: 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.

JACC AdvancesVol. 5(8)
University of Bern (CH), Western University (CA), Memorial University of Newfoundland (CA), Mayo Clinic (US), University of Antwerp (BE), University of Ottawa (CA), University of Alberta (CA), University of California, Los Angeles (US), Oregon Health & Science University (US), University of Calgary (CA), University of Basel (CH), University of Toronto (CA), University of Washington (US), University of Zurich (CH), Montreal Heart Institute (CA), University Hospital of Bern (CH), Auckland City Hospital (NZ), Toronto General Hospital (CA), University of Washington Medical Center (US), Erasmus MC (NL), Golden Jubilee National Hospital (GB), University Hospital of Basel (CH), Jubilee Hospital (GB), University of Alberta Hospital (CA), Stiftung Lindenhof Bern (CH), University Hospital of Zurich (CH), Victoria Heart Institute Foundation (CA), Adult Congenital Heart Association (US), Equilibrium Research (GB), Helen DeVos Children's Hospital (US), National Heart Institute (MY), ERN GUARD-Heart (NL), St. Paul's Hospital (CA), Hope Heart Institute (US), Canadian Heart Research Centre (CA), Stollery Children's Hospital (CA), University of Manitoba (CA), Libin Cardiovascular Institute of Alberta (CA), Université de Montréal (CA), Catholic University of America (US), University of Gothenburg (SE), Erasmus University Rotterdam (NL), KU Leuven (BE)
Heart and Stroke Foundation of Canada, Canadian Institutes of Health Research
Good health and well-being
Openalex Percentile: Top 9%
Phonocardiography and Auscultation Techniques
DOIOpen Access PDFOpenAlex
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