Patient and Public Involvement in Paediatric Pragmatic Randomized Controlled Trials: A Mixed Methods Study
Bibliographic record
Abstract
BACKGROUND/OBJECTIVES: Patient and public involvement (PPI) in the design, conduct, and dissemination of pragmatic trials may make trial results more relevant and meaningful. The nature of PPI in paediatric pragmatic trials has been poorly characterized in the literature. This study examined the prevalence and nature of PPI in paediatric pragmatic trials and lessons learned from researchers' experiences. METHODS: For this mixed methods study, we conducted an online survey and semi-structured interviews with corresponding authors of published paediatric pragmatic trials, identified using an online search filter in MEDLINE. Descriptive statistics and qualitative thematic analysis were used to analyse the data. RESULTS: PPI was reported by 71/127 (56%) survey respondents. Reported impacts of PPI in the survey included the following: more feasible interventions (71%), higher-quality research (57%), improved recruitment and retention (57%), and increased applicability of research findings (57%). Both survey and interview participants identified that insufficient resources, time, and training for relationship development were challenges to PPI in paediatric trials. Three themes were identified from the semi-structured interview data (recruitment and engagement, sustaining PPI relationships, and PPI value added). CONCLUSIONS: PPI aligns with the purpose and intended impact of pragmatic trials, and paediatric researchers perceive that PPI leads to increased research relevance, quality, and dissemination. There is, however, a need for institutional and funding bodies to invest in PPI partnership, including offering support for researchers and providing opportunities for children, youth, and parents as PPI partners.
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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 | 0.038 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.004 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.001 | 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) | 0.000 | 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".