Exploring Pediatric Surgical Journeys Through Patient-Reported Outcome and Experience Measures
Bibliographic record
Abstract
Patient-centered care in pediatric surgery focuses on involving patients and families in decision-making, employing tailored patient-reported measures, and customizing care to meet their unique needs and preferences. This thesis explores the use of Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) to capture the perspectives of pediatric surgical patients and their families, addressing three core questions:1. How closely do parents’ and children’s reports of health outcomes and experiences align when using PROMs and PREMs?In this study a systematic review and meta-analysis were conducted, revealing that children’s and caregivers’ perspectives on health outcomes and experiences are generally aligned in pediatric surgical settings. This suggests that in situations where direct data collection with children is challenging, it may be sufficient to use parental reports alone. However, it is important to seek children’s input whenever possible.2. Can existing PREM measures be effectively adapted for use in Canadian pediatric facilities? To explore this, a PREM instrument was culturally adapted and translated with linguistic validation for the Canadian context. This process resulted in a Canadian-specific measure tailored for pediatric outpatient settings for ages 8-16 years, addressing the need for culturally and linguistically appropriate tools, and providing a more precise assessment of patient experiences within the Canadian healthcare system.3. Can an individualized PROM address gaps in assessing outcomes important to pediatric surgical patients?To investigate this, the usability of the pediatric Patient-Generated Index (pPGI) as an individualized PROM was assessed. The evaluation demonstrated that the pPGI effectively captures outcomes defined by patients themselves, uncovering aspects of their health and well-being that standardized measures might miss. This highlights the benefit of using individualized measures alongside standardized ones to gain a more comprehensive understanding of patient outcomes.This thesis contributes to our understanding of how patient-centered measures can be effectively employed in pediatric surgery. By examining the alignment between child and parent perspectives, adapting measures for various contexts, and exploring individualized tools, it highlights key opportunities for improving care. However, measuring experiences and outcomes alone is not enough. For real impact, these findings must be translated into practice.Parental reports may be sufficient in some cases, but the newly developed Canadian patient-completed PREM and the pPGI offer a unique opportunity to enhance patient-centered care. Their potential lies in guiding meaningful improvements when systematically applied. Consistently integrating these results into clinical decision-making will be essential for enhancing care quality, patient experiences, and outcomes in pediatric surgery. Future efforts should focus on embedding these measures into routine practice, ensuring their findings lead to actionable changes that benefit both patients and providers
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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 | 0.055 | 0.118 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.003 |
| Bibliometrics | 0.005 | 0.007 |
| Science and technology studies | 0.001 | 0.001 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 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".