Proxy- and Patient-Reported Outcome Measures in Cleft Lip and/or Palate Under 8 Years of Age: A Scoping Review
Bibliographic record
Abstract
ObjectiveThis scoping review aimed to identify patient-reported outcome (PRO) and proxy-report outcome (ProxRO) measures administered to children under 8 years of age with cleft lip and/or palate (CL/P) and to describe the age at which proxy or self-report measures were used.DesignScoping ReviewSettingWhen children are unable to self-report, PROs and ProxROs can be used. The age at which proxy-report is appropriate has not been described in patients with CL/P.Patients, ParticipantsChildren born with CL/P.InterventionsOvid MEDLINE, EMBASE, PsycINFO, the Cochrane Register, and Web of Science were searched from inception until July 2024. Title and abstract screening, full text review, and data extraction were done independently in duplicate. Measures were categorized as PROs, ProxROs, or "MultiROs," where both caregivers and children responded. A narrative synthesis was performed to describe the identified measures.Main Outcome MeasuresPRO or ProxRO measures in children with CL/P less than 8 years old.ResultsOf 7001 publications identified, 57 studies met the inclusion criteria. Fifty-six measures were identified, of which 43 had at least 1 published psychometric property. Thirteen studies used ad hoc measures. Most measures were not condition-specific to CL/P. ProxROs were more commonly utilized than PROs. Parent-proxy tools were used from birth to 8 years, while self-report was used in patients as young as 3 years old.ConclusionsThere is a paucity of cleft-specific ProxRO measures that assess outcomes of cleft care in patients under 8 years of age. Work to develop and validate ProxRO measures for CL/P is needed.
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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 | 0.032 | 0.141 |
| Meta-epidemiology (narrow) | 0.002 | 0.001 |
| Meta-epidemiology (broad) | 0.007 | 0.007 |
| Bibliometrics | 0.012 | 0.014 |
| Science and technology studies | 0.001 | 0.002 |
| Scholarly communication | 0.005 | 0.005 |
| Open science | 0.002 | 0.003 |
| Research integrity | 0.003 | 0.002 |
| Insufficient payload (model declined to judge) | 0.006 | 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; 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".