Transition of care to adult congenital heart centres: what do patients know about their heart condition?
Bibliographic record
Abstract
BACKGROUND: The population of adults with congenital heart disease is growing rapidly, and the transition of care from the pediatric to the adult setting is often not optimal. OBJECTIVES: To assess the level of knowledge that adults with congenital heart disease have of their condition. METHODS: All new patients referred to an adult congenital heart centre were asked to answer questions about their clinical diagnosis, their need and reason for anti-bioprophylaxis, and their risks of pregnancy when applicable. The patient's age at first visit, source of referral and time from last visit in cardiology (defined as the last visit with a cardiologist) were also noted. RESULTS: From November 1999 to July 2000, 104 patients (42 men) were referred to the adult centre by pediatric cardiologists (56), medical cardiologists (26), general practitioners (11), dentists (two) or obstetricians (two), or they were self-referred (seven). The mean age at the time of referral was 28 11 years (range 16 to 72 years, median 24 years). The time from the last visit in cardiology varied widely from one month to 25 years (median three years), with 29 patients (28%) having had no follow-up for more than five years. Among these, 14 patients had no follow-up for more than 10 years, with six patients having been referred for complications related to their cardiac anatomy, such as heart failure (Eisenmenger, Ebstein), syncope (operated and unoperated tetralogy of Fallot) and arrhythmias (atrial septal defect, unoperated Fallot). The clinical diagnosis was completely unknown by 36 patients (34.6%), including patients with repaired Fallot (three patients), Mustard procedure (two), severe aortic stenosis (two), severe pulmonary stenosis (one), Eisenmenger (one), unoperated Fallot (one), ventricular septal defect (six) and bicuspid aortic valve (seven). Seventy-three patients (79%) knew about antibiotic prophylaxis, but 50% did not comprehend why they needed it. Many women (66%) had never discussed the risks of pregnancy with their physician. CONCLUSIONS: A large percentage of adults with congenital heart abnormalities show a poor level of knowledge about their heart condition. These observations suggest the importance of structured transitional programs, the impact of which will need to be validated in prospective studies.
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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 | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 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".