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Proxy- and Patient-Reported Outcome Measures in Cleft Lip and/or Palate Under 8 Years of Age: A Scoping Review

Kariym Joachim1,2, Alexandra D'Souza2, Jessie Howard2,3

  • 1Institute of Medical Science, University of Toronto, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada.

The Cleft Palate-Craniofacial Journal : Official Publication of the American Cleft Palate-Craniofacial Association
|December 16, 2025
PubMed

Insights

This review found few specific outcome measures for young children with cleft lip/palate (CL/P). More research is needed to develop and validate patient-reported outcome (PRO) and proxy-report outcome (ProxRO) tools for this population.

Area of Science:

  • Pediatric Health Outcomes Research
  • Cleft Lip and Palate Care
  • Measurement Science

Background:

  • Patient-reported outcomes (PROs) and proxy-report outcomes (ProxROs) are crucial for assessing care effectiveness, especially when children cannot self-report.
  • The appropriate age for utilizing proxy versus self-report measures in children with cleft lip and/or palate (CL/P) remains underexplored.
  • Existing literature lacks a comprehensive overview of available PROs and ProxROs for young CL/P patients.

Purpose of the Study:

  • To identify existing PRO and ProxRO measures used in children under 8 years with CL/P.
  • To determine the age at which proxy or self-report measures are applied in this pediatric population.
  • To highlight gaps in current outcome measurement for young CL/P patients.

Main Methods:

  • A scoping review was conducted using major databases (Ovid MEDLINE, EMBASE, PsycINFO, Cochrane, Web of Science) up to July 2024.
  • Studies were screened, and data were extracted independently by duplicate reviewers.
  • Identified measures were categorized as PROs, ProxROs, or MultiROs, with narrative synthesis of findings.

Main Results:

  • Of 7001 identified publications, 57 studies met inclusion criteria, yielding 56 distinct measures.
  • Most identified measures (43/56) had published psychometric properties, but few were CL/P-specific.
  • Proxy-report outcome (ProxRO) measures were more common than PROs; parent proxies were used from birth to 8 years, while self-report began at age 3.

Conclusions:

  • There is a significant lack of condition-specific ProxRO measures for assessing cleft care outcomes in children under 8 years.
  • Development and validation of specialized ProxRO tools are urgently needed for the CL/P population.
  • Current measurement practices highlight a need for age-appropriate and condition-specific outcome assessment in pediatric cleft care.

Keywords:
cleft lipcleft palateoutcomespediatricsquality of lifesystematic review

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