Advance Care Planning for Adults With Moderate-to-Severe Congenital Heart Disease: Readiness Trial
Bibliographic record
Abstract
Background: Adults with congenital heart disease (CHD) are growing in number and living longer with complex lesions; however, many are at risk of death in midlife. Conversations about advance care planning (ACP) in this population have been found to be infrequent and not part of regular outpatient care. The intent of this study was to explore readiness of patients with adult CHD (ACHD) to discuss ACP and assess the impact of interventions to support ACP conversations. Methods: We conducted a prospective, randomized, single-centre trial of adults with moderate to severe CHD. Simply, the control group was asked if they were ready to discuss their wishes if they were to become seriously ill. The intervention group was provided 2 additional resources with the readiness question, the modified Lyon Family-Centered ACP survey and a patient-partner created ACHD-ACP video. Results: A total of 111 responses (control [n = 59] and intervention group [n = 52]) were collected for analysis. Women represented 59.0% of the participants. The mean age was 39.6 years (standard deviation = 14.8 years). No significant difference was found between the control and experimental groups' readiness (94.9% and 90.4%, respectively). Most participants (92.8%) responded positively towards initiating conversations related to end-of-life and ACP discussions. Conclusions: We found that adults with CHD are ready to have ACP conversations as part of their outpatient care. Patient preferences and values should guide ACP conversations; further research is needed to determine whether the modified Lyon Family-Centered ACP survey and ACHD-ACP video are helpful adjuncts for ACP in outpatient clinics.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.003 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.001 | 0.001 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.004 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".