Patient Preferences in Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC) Screening and ICD Implantation: Canadian ARVC Registry Substudy
Bibliographic record
Abstract
Background: Arrhythmogenic right ventricular cardiomyopathy (ARVC) is typically diagnosed following an arrhythmic event or during screening after a family member experiences sudden cardiac death. Implantation of a defibrillator (ICD) improves survival but can be associated with morbidity and risks, an important consideration within a shared decision-making context. This study examined patient decisional needs and preferences surrounding ARVC screening and prophylactic ICD implantation. Methods: This Canadian ARVC registry substudy included 20 new patients and/or families offered ARVC screening (the screen group), and 27 diagnosed ARVC patients who were offered an ICD. Measures included the following: the Decisional Conflict Scale; preference and benefit-risk visual analogue scales; the Medical Outcomes Study Short Form-36 (SF-36); and exercise restriction. Descriptive analysis was employed, and results are reported as mean (standard deviation) or proportions. Results: ICD patients reported having lower decisional conflict scores-19.6 (13.6) compared to the screen group patients-33.1 (32.2). The visual analogue scale results showed lower benefit and risk clarity scores for screen group patients-6.6 (3.6)-compared to those offered ICD implantation-7.4 (2.6). More screen group patients (55%) reported restricting exercise than did ICD patients (30%). In both groups, the Medical Outcomes Study Short Form-36 Physical Component Summary scores were higher than population norms-50 (standard deviation 10): the screen group, 52.0 (8.8); the ICD group, 54.1 (7.4), and the Mental Component Summary scores were slightly lower-the screen group, 47.7 (10.8); the ICD group, 49.7 (8.9). Conclusions: Patients undergoing ARVC screening reported greater decisional conflict and lower benefit and risk clarity compared to patients diagnosed with ARVC who were offered an ICD. Screen group patients were more restrictive in their exercise. Understanding patient preferences and needs during ARVC screening and ICD candidacy can assist in improving decision support with patients and families.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 teacher head, 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".