Research quality and dissemination of paediatric randomised controlled trials with and without patient and family engagement: systematic review
Bibliographic record
Abstract
OBJECTIVES: Authentic patient and family engagement in child health research is defined as researchers working in partnership with patients and families on all aspects of the research process, including refining the research question, tailoring the intervention, devising study procedures and disseminating study findings. While there is good evidence of a positive impact of patient engagement on the research process, on research teams and on patient partners, there are few empirical data on the impact of patient and family engagement on research quality and dissemination. We conducted a systematic review to compare research quality and dissemination metrics for paediatric randomised controlled trials (RCTs) that engaged patients and families in the research process with trials that did not. DESIGN: Systematic review using the Cochrane Highly Sensitive Search to identify RCTs. DATA SOURCES: Ovid MEDLINE from 1 January 2011 through to 31 December 2020. ELIGIBILITY CRITERIA: (a peer-reviewed general medical journal). DATA EXTRACTION AND SYNTHESIS: Trials were categorised as those engaging patients and families (PE+) and those that did not (PE-). A standardised review form was used to confirm trial eligibility and extract data on study characteristics. Two reviewers independently screened and sorted RCTs into PE+ and PE- groups, extracted data and assessed research quality using the modified Cochrane Risk of Bias Tool (based on seven methodological criteria). The dissemination of RCT findings was determined using measures of academic and non-academic citation collected from Web of Science and Scopus. RESULTS: published 45 RCTs involving children and youth. Only 10/45 RCTs (22%) reported engaging patients and families in the research process. Research quality for PE+ and PE- paediatric RCTs was similar; 4/10 (40%) of PE+ trials and 13/35 (37%) of PE- trials were rated as 'fair' or 'good' (p=1.00). Academic citation frequency per year was similar for PE+ trials and PE- trials: Web of Science (median 6.6 vs 7.1, respectively; p=0.84). Non-academic dissemination measures were generally higher among PE+ trials; for example, median PlumX Social Media score per year for PE+ trials was 46.6, compared with a median score of 7.6 for PE- trials (p=0.02). CONCLUSIONS: Despite increasing interest in patient and family engagement in child health research, this review showed that few paediatric RCTs report patient engagement activity. Research quality was similar for trials engaging patients and families compared with those that did not. Patient and family engagement in the trial, however, was associated with higher metrics for social media attention, compared with trials with no engagement.
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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 | 0.309 | 0.724 |
| Meta-epidemiology (narrow) | 0.003 | 0.004 |
| Meta-epidemiology (broad) | 0.021 | 0.020 |
| Bibliometrics | 0.017 | 0.019 |
| Science and technology studies | 0.002 | 0.008 |
| Scholarly communication | 0.012 | 0.013 |
| Open science | 0.005 | 0.006 |
| Research integrity | 0.008 | 0.005 |
| Insufficient payload (model declined to judge) | 0.008 | 0.001 |
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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".