Abstract 4122307: Longitudinal Changes in Parent-reported Quality of Life in Children with Single Ventricle
Bibliographic record
Abstract
Introduction: Increased knowledge of quality of life (QOL) and the potential impact of the Fontan on QOL is essential to improving outcomes in patients with single ventricle. The primary aim of the Pediatric Heart Network Single Ventricle Reconstruction (SVR) trial II was to investigate outcomes in subjects with SV at age 6 yrs while SVR III characterized outcomes in this cohort at age 10-12 yrs. Aims: The purpose of this study was to evaluate changes in health-related QOL from SVR II to SVR III and to identify factors associated with changes in QOL over time. Methods: Parents completed proxy-reports for their child using the Pediatric Quality of Life Inventory (PedsQL) generic and cardiac scales at SVR II and SVR III. Within-subject differences in PedsQL scores and proportions scoring in the ‘at-risk’ range for significantly impaired QOL between time points were examined using one-sample t-test and McNemar’s tests, respectively. Factors associated with changes in QOL were evaluated using standard univariate tests. Results: A total of 163 patients were included (63% male, 89% Caucasian, 16% Hispanic). PedsQL scores reported by parents decreased across all domains: total score -6.1 ± 17.1, p <.0001; physical -4.0 ± 22.3, p=0.02; psychosocial -7.2 ± 17.4, p<.0001; emotional -6.5 ± 20.7, p=.0001; social -6.6 ± 22.6, p= 0.0003; and school -8.6 ± 22.5, p<.0001, functioning. No significant change in parent-reported heart problems/cardiac symptoms was detected across timepoints (-1.0 ± 20.4, p=0.52). Proportions with impaired QOL increased over time: total 28 to 39%, p=.01, physical 27 to 39%, p=.01, psychosocial 25 to 40%, p=.002, emotional 20 to 34%, p=.001, social 22 to 31%, p=.06, and school 21 to 38%, p=.0001. Only treatment for a psychological or behavioral disorder (n=26) was significantly associated with decline in psychosocial (mean -14.0 vs. -5.9; p=.03) and emotional (mean -17.1 vs. -4.5; p=.004) functioning scores. There was no significant association between socioeconomic status, Vineland adaptive scores at SVR II, or interval complications or procedures and changes in QOL. Conclusion: As perceived by their parents, health-related QOL in children with SV decreases over time unrelated to cardiac symptoms and complications. The greatest decline was in school functioning with 1 in 3 children having significantly impaired school QOL at SVR III. Greater attention to assessment of learning and psychosocial needs is essential to improve QOL in patients with SV.
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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) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 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".