Parents’ ratings of intelligibility in 3-year-olds with cleft lip and/or palate using the intelligibility in context scale: Findings from the cleft collective cohort studies

Background: The International Consortium for Health Outcomes Measurement (ICHOM) Standard Set of outcome measurements for cleft lip and/or palate (CL/P) includes the Intelligibility in Context Scale (ICS) as a measure of speech outcomes following surgical repair of the palate. The ICS is a free parent-reported measure whereby intelligibility is rated on a five point scale (never, rarely, sometimes, usually, always) in seven different contexts (parents, immediate family,extended family, friends, acquaintances, teachers, strangers). Though the ICS has been validated as a screening tool for use with children with speech sound disorders who speak a range of languages, comparative data for children born with CL/P is not yet available.Aims: The aim of this study was to provide preliminary data on performance on the ICS for a sample of 3-year-old, English speaking, children born with CL/P. These data will provide a source for comparison with clinical use of the ICS with this population. Methods: Cross-sectional questionnaire data from the Cleft Collective Birth Cohort study, a national longitudinal clinical cohort study in the UK, was used. Children with orofacial cleft and their families are recruited (providing the mother gaveinformed consent) at pre/post-natal diagnosis. Mothers are asked to complete questionnaires at various time points,including when the child is aged 3. Recruitment/data collection are ongoing; at the time of this study, data from 239 mothers were available and used in the analyses. Descriptive statistics were used to provide means and standard deviations for each cleft type.Ethical approval was provided by Central Bristol and London-Central Research Ethics Committees. The Cleft Collective Birth Cohort study is funded by the Scar Free Foundation; the analysis outlined in this paper was funded by the Underwood Trust with support from the University of Bristol.Results: The mean ICS score for the total sample was 3.72 (SD=0.77) out of a possible total score of 5. For children with cleft lip only the average score was 4.17(SD=0.62) and for children with cleft palate only it was 3.67(SD=0.73). For children with cleft lip and palate, the average score was 3.47(SD=0.77). Overall mothers reported children to be more intelligible to them, mean 4.30 (SD=0.62), than with strangers, mean 3.29 (SD=1.01).Summary/Conclusion: At age 3, the average score on the ICS for children born with any type of cleft is 3.7. Norms for non-cleft children are not available for this age. These results provide preliminary comparative data for clinical services using the ICHOM outcome measures. They also provide clinical markers for outcomes based on low intelligibility to strangers. Future studies will analyse whether additional syndromes and the presence of hearing difficulties affect intelligibility scores. Analyses with the same cohort of children at 5-years-old will allow comparison with normative data fora non-cleft English speaking population and outcome data which can be compared with the baseline data collected at age 3. These analyses will provide a rich dataset to inform use of the ICS as a standalone outcome measure of surgical repair and a baseline/outcome measure of speech intervention.