Centralization of cleft care in the UK. Part 6: a tale of two studies

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Structured Abstract

Objectives

We summarize and critique the methodology and outcomes from a substantial study which has investigated the impact of reconfigured cleft care in the United Kingdom (UK) 15 years after the UK government started to implement the centralization of cleft care in response to an earlier survey in 1998, the Clinical Standards Advisory Group (CSAG).

Setting and Sample Population

A UK multicentre cross-sectional study of 5-year-olds born with non-syndromic unilateral cleft lip and palate. Data were collected from children born in the UK with a unilateral cleft lip and palate between 1 April 2005 and 31 March 2007.

Materials and Methods

We discuss and contextualize the outcomes from speech recordings, hearing, photographs, models, oral health and psychosocial factors in the current study. We refer to the earlier survey and other relevant studies.

Results

We present arguments for centralization of cleft care in healthcare systems, and we evidence this with improvements seen over a period of 15 years in the UK. We also make recommendations on how future audit and research may configure.

Conclusions

Outcomes for children with a unilateral cleft lip and palate have improved after the introduction of a centralized multidisciplinary service, and other countries may benefit from this model. Predictors of early outcomes are still needed, and repeated cross-sectional studies, larger longitudinal studies and adequately powered trials are required to create a research-led evidence-based (centralized) service.

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Most cited references 27

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The Cleft Care UK study. Part 4: perceptual speech outcomes

D Sell, S Mildinhall, L Albery … (2015)

Structured Abstract Objectives To describe the perceptual speech outcomes from the Cleft Care UK (CCUK) study and compare them to the 1998 Clinical Standards Advisory Group (CSAG) audit. Setting and sample population A cross-sectional study of 248 children born with complete unilateral cleft lip and palate, between 1 April 2005 and 31 March 2007 who underwent speech assessment. Materials and methods Centre-based specialist speech and language therapists (SLT) took speech audio–video recordings according to nationally agreed guidelines. Two independent listeners undertook the perceptual analysis using the CAPS-A Audit tool. Intra- and inter-rater reliability were tested. Results For each speech parameter of intelligibility/distinctiveness, hypernasality, palatal/palatalization, backed to velar/uvular, glottal, weak and nasalized consonants, and nasal realizations, there was strong evidence that speech outcomes were better in the CCUK children compared to CSAG children. The parameters which did not show improvement were nasal emission, nasal turbulence, hyponasality and lateral/lateralization. Conclusion These results suggest that centralization of cleft care into high volume centres has resulted in improvements in UK speech outcomes in five-year-olds with unilateral cleft lip and palate. This may be associated with the development of a specialized workforce. Nevertheless, there still remains a group of children with significant difficulties at school entry.

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Speech and language therapy interventions for children with cleft palate: a systematic review.

Alyson Bessell, Debbie Sell, Penny Whiting … (2013)

Objective : (1) To examine the evidence for the effectiveness of differences in timing and type of speech and language therapy for children with cleft palate with or without a cleft lip and (2) to identify types of interventions assessed. Design : Nine databases, including MEDLINE and EMBASE, were searched between inception and March 2011 to identify published articles relating to speech and language therapy for children with cleft palate with or without cleft lip. Studies that included at least 10 participants and reported outcome measures for speech and/or language measures were included. Studies where the experimental group had less than 90% of children with cleft palate with or without cleft lip were excluded. Two reviewers independently completed inclusion assessment, data extraction, and risk of bias assessment for all studies identified. Results : A total of 17 papers were evaluated: six randomized control trials and 11 observational studies. Studies varied widely on risk of bias, intervention used, and outcome measures reported. None of the studies had a low risk of bias. In terms of intervention approaches, seven studies evaluated linguistic approaches and 10 evaluated motor approaches. Outcomes measures did not support either approach over the other, and based on data reported it was difficult to ascertain which approach is more effective for children with cleft palate with or without cleft lip. Conclusions : The review found little evidence to support any specific intervention. Key uncertainties need to be identified and adequately powered, methodologically rigorous studies conducted to provide a secure evidence base for speech-language therapy practice in children with cleft palate with or without cleft lip.

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Cleft lip and palate care in the United Kingdom--the Clinical Standards Advisory Group (CSAG) Study. Part 2: dentofacial outcomes and patient satisfaction.

Michael J. Murray, S Mildinhall, J Sandy … (2000)

To describe facial development and appearance, quality of bone grafts, oral health, and patient/parent satisfaction, with clinical outcome, for children in two age cohorts born with unilateral cleft lip and palate (UCLP) throughout the United Kingdom. Cross-sectional outcome study. Fifty National Health Service cleft centers. Children born with complete UCLP between April 1, 1982, and March 31, 1984, (12-year-olds) and April 1, 1989, and March 31, 1991 (5-year-olds). Data were collected for 239 5-year-olds and 218 12-year-olds. The parents of these children were also interviewed to determine levels of satisfaction with care received. Skeletal pattern, dental arch relationship, success of alveolar bone grafting, facial appearance, oral health status, and patient/parent satisfaction. Nearly 40% of 5- and 12-year-olds had poor dental arch relations, and 70% of 12-year-olds had midface retrusion. Fifteen percent of 12-year-olds had not received an alveolar bone graft, and only 58% of bone grafts that had been undertaken were successful. Twenty percent of 12-year-olds and 40% of 5-year-olds had untreated dental caries. Less than one-third of subjects had a good facial appearance as judged by a panel of experts. Levels of patient and parent satisfaction were generally high. A rigorous evaluation of cleft care in the United Kingdom reveals disappointing outcomes.

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Author and article information

Journal

Journal ID (nlm-ta): Orthod Craniofac Res

Journal ID (iso-abbrev): Orthod Craniofac Res

Journal ID (publisher-id): ocr

Title: Orthodontics & Craniofacial Research

Publisher: John Wiley & Sons, Ltd (Chichester, UK )

ISSN (Print): 1601-6335

ISSN (Electronic): 1601-6343

Publication date (Print): November 2015

Publication date (Electronic): 16 November 2015

Volume: 18

Issue: Suppl 2

Pages: 56-62

Affiliations

National Institute for Health Research (NIHR) Biomedical Research Unit in Nutrition, Diet and Lifestyle at the University Hospitals Bristol NHS Foundation Trust and the University of Bristol Bristol, UK

School of Oral and Dental Sciences, University of Bristol Bristol, UK

Musgrove Park Hospital Taunton, UK

Cleft Lip and Palate Association London, UK

Centre for Appearance Research, University of the West of England Bristol, UK

South Thames’ Cleft Unit, Guy’s and St Thomas Hospital London, UK

Cleft Net East Cleft Network, Addenbrooke’s Hospital Cambridge, UK

Children’s Hearing Centre, University Hospitals Bristol NHS Foundation Trust Bristol, UK

Centre for Child and Adolescent Health, School of Social and Community Medicine, University of Bristol Bristol, UK

Speech and Language Therapy Department and Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), Great Ormond Street Hospital NHS Foundation Trust London, UK

Author notes

Professor J. R. Sandy , School of Oral and Dental Sciences, University of Bristol, Lower Maudlin Street, Bristol, BS1 2LY, UK, E-mail: jonathan.sandy@ 123456bris.ac.uk

Article

DOI: 10.1111/ocr.12111

PMC ID: 4670710

PubMed ID: 26567856

SO-VID: 784dc466-d8ea-48c5-98f6-3e95d8b358ba

License:

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Centralization of cleft care in the UK. Part 6: a tale of two studies

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Structured Abstract

Objectives

Setting and Sample Population

Materials and Methods

Results

Conclusions

Related collections

Point-of-Care Testing for COVID-19

Most cited references 27

The Cleft Care UK study. Part 4: perceptual speech outcomes

Speech and language therapy interventions for children with cleft palate: a systematic review.

Cleft lip and palate care in the United Kingdom--the Clinical Standards Advisory Group (CSAG) Study. Part 2: dentofacial outcomes and patient satisfaction.

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