Reliability of data on percent consonants correct and its associated quality indicator in the Swedish cleft lip and palate registry

Klintö, Kristina; Hagberg, Emilie; Havstam, Christina; Nelli, Cecilia; Okhiria, Åsa; Brunnegård, Karin

doi:10.1080/14015439.2022.2095017

Logopedics Phoniatrics Vocology

2022

DOI: 10.1080/14015439.2022.2095017

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Reliability of data on percent consonants correct and its associated quality indicator in the Swedish cleft lip and palate registry

Kristina Klintö

Emilie Hagberg

Christina Havstam

et al.

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Cited by 6 publications

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Perceptual Assessment of Cleft Palate Speech—Bridging the Gap From Research to Clinical Practice—the Swedish Perspective

Klintö,

Lohmander

2023

Perspect ASHA SIGs

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Purpose: The purpose of this tutorial is to describe an evidence-based scientifically sustainable perceptual assessment of cleft palate speech and how standardized assessment methods for research on cleft palate speech have been implemented in clinical practice in Sweden, which makes it possible to carry out research on clinical data. Method: This tutorial is based on a literature review and own research on how to perform a valid and reliable perceptual cleft palate speech assessment and the description of clinical practice in Sweden. Perceptual speech assessment of cleft palate speech is discussed in terms of speech material, documentation, perceptual speech analysis, speech outcome measures, cross-linguistic comparisons, calculation of reliability, interpretation of results, and subject selection. We also describe the conditions that have made it possible to integrate research and clinic in cleft palate speech-language pathology in Sweden. Conclusions: Knowledge acquired from national and international research has had a great impact on the development of cleft palate speech assessment procedures in Sweden and has contributed to standardized evaluation of treatment results. This has enabled open comparisons of treatment results from the different Swedish cleft lip and palate (CLP) centers to provide a basis for improved CLP care.

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Perceptual Assessment of Cleft Palate Speech—Bridging the Gap From Research to Clinical Practice—the Swedish Perspective

Klintö,

Lohmander

2023

Perspect ASHA SIGs

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Foreign‐born 5‐year‐old children with cleft palate had poorer speech outcomes than their native‐born peers

Lendt,

Becker,

Eriksson

et al. 2024

Acta Paediatrica

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AimSpeech difficulties are common in children with cleft palate, but research on foreign‐born children is limited. This study aimed to compare speech outcomes, surgery and speech intervention in 5‐year‐old foreign‐born and Swedish‐born children with cleft palate with or without cleft lip.MethodsThis retrospective study analysed data from the Swedish cleft lip and palate registry for children born between 2009 and 2016 using Pearson's Chi‐squared test and binary logistic regression.ResultsAmong 160 foreign‐born (106 boys, 54 girls) and 847 Swedish‐born (479 boys, 368 girls) 5‐year‐olds, foreign‐born children had significantly lower rates of sufficient velopharyngeal competence (77% vs. 86%), age‐appropriate consonant production (28% vs. 60%), and speech without non‐oral speech errors (70% vs. 86%). Differences remained after adjustment for cleft type, gender and additional diagnosed conditions. After further adjustments for age at completed primary palatal surgery, differences in age‐appropriate consonant production and speech without non‐oral speech errors remained significant. Foreign‐born children underwent completed primary palatal surgery at older ages and received more secondary palatal surgery and speech intervention than Swedish‐born peers.ConclusionForeign‐born children showed poorer speech outcomes than Swedish‐born peers, despite more secondary palatal surgery and speech intervention. Age at completed primary palatal surgery could partly explain these differences.

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Using “Real-World Data” to Study Cleft Lip/Palate Care: An Exploration of Speech Outcomes from a Multi-Center US Learning Health Network

Dunworth,

Sharif-Askary,

Grames

et al. 2023

The Cleft Palate Craniofacial Journal

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Objective To assess the ability of a cleft-specific multi-site learning health network registry to describe variations in cleft outcomes by cleft phenotypes, ages, and treatment centers. Observed variations were assessed for coherence with prior study findings. Design Cross-sectional analysis of prospectively collected data from 2019–2022. Setting Six cleft treatment centers collected data systematically during routine clinic appointments according to a standardized protocol. Participants 714 English-speaking children and adolescents with non-syndromic cleft lip/palate. Intervention Routine multidisciplinary care and systematic outcomes measurement by cleft teams. Outcome Measures Speech outcomes included articulatory accuracy measured by Percent Consonants Correct (PCC), velopharyngeal function measured by Velopharyngeal Competence (VPC) Rating Scale (VPC-R), intelligibility measured by caregiver-reported Intelligibility in Context Scale (ICS), and two CLEFT-Q™ surveys, in which patients rate their own speech function and level of speech distress. Results 12year-olds exhibited high median PCC scores (91–100%), high frequency of velopharyngeal competency (62.50–100%), and high median Speech Function (80–91) relative to younger peers parsed by phenotype. Patients with bilateral cleft lip, alveolus, and palate reported low PCC scores (51–91%) relative to peers at some ages and low frequency of velopharyngeal competency (26.67%) at 5 years. ICS scores ranged from 3.93–5.0 for all ages and phenotypes. Speech Function and Speech Distress were similar across phenotypes. Conclusions This exploration of speech outcomes demonstrates the current ability of the cleft-specific registry to support cleft research efforts as a source of “real-world” data. Further work is focused on developing robust methodology for hypothesis-driven research and causal inference.

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Reliability of data on percent consonants correct and its associated quality indicator in the Swedish cleft lip and palate registry

Cited by 6 publications

References 29 publications

Perceptual Assessment of Cleft Palate Speech—Bridging the Gap From Research to Clinical Practice—the Swedish Perspective

Perceptual Assessment of Cleft Palate Speech—Bridging the Gap From Research to Clinical Practice—the Swedish Perspective

Foreign‐born 5‐year‐old children with cleft palate had poorer speech outcomes than their native‐born peers

Using “Real-World Data” to Study Cleft Lip/Palate Care: An Exploration of Speech Outcomes from a Multi-Center US Learning Health Network

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