The Effectiveness of Psychosocial Intervention for Individuals with Cleft Lip and/or Palate

Norman, Alison Van; Persson, Mia; Stock, Nicola Marie; Rumsey, Nichola; Sandy, Jonathan R; Waylen, Andrea; Edwards, Zoe; Hammond, Vanessa; Partridge, Lucy; Ness, Andy R

doi:10.1597/13-276

Cited by 35 publications

(36 citation statements)

References 32 publications

(60 reference statements)

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“…The Cleft Collective research team has been engaged in a number of complementary qualitative and quantitative studies, which have been extremely useful in informing the design of current and future studies within The Cleft Collective research program (see Stock and Rumsey, in press;Norman et al, 2015;Stock et al, in press-a;Stock and Rumsey, 2015). For more information about The Cleft Collective substudies, please visit our website.…”

Section: Substudiesmentioning

confidence: 99%

Opportunities and Challenges in Establishing a Cohort Study: An Example from Cleft Lip/Palate Research in the United Kingdom

Stock

Humphries

Pourcain

et al. 2016

The Cleft Palate Craniofacial Journal

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Background: Cleft lip and/or palate (CL/P) is one of the most common birth conditions in the world, but little is known about its causes. Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors that contribute to psychological adjustment are poorly understood. The use of different methodological approaches and tools plays a key role in hampering efforts to address discrepancies within the evidence base. A new UK-wide program of research, The Cleft Collective, was established to combat many of these methodological challenges and to address some of the key research questions important to all CL/P stakeholders.Objective: To describe the establishment of CL/P cohort studies in the United Kingdom and to consider the many opportunities this resource will generate.Results: To date, protocols have been developed and implemented within most UK cleft teams. Biological samples, environmental information, and data pertaining to parental psychological well-being and child development are being collected successfully. Recruitment is currently on track to meet the ambitious target of approximately 9800 individuals from just more than 3000 families.Conclusions: The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P. The data collected will form a comprehensive resource of information about individuals with CL/P and their families. This resource will provide the basis for many future projects and collaborations, both in the United Kingdom and around the world.

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Section: Substudiesmentioning

confidence: 99%

Opportunities and Challenges in Establishing a Cohort Study: An Example from Cleft Lip/Palate Research in the United Kingdom

Stock

Humphries

Pourcain

et al. 2016

The Cleft Palate Craniofacial Journal

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“…Longitudinal studies could help to describe the impact of treatments (such as hearing aids, speech and language therapy or fluoride varnish) and other factors on outcome. Where possible, trials should be considered to identify effective (and ineffective) treatments as at present there is no robust trial evidence to guide practice in a number of areas …”

Section: Implications For Researchmentioning

confidence: 99%

Centre‐level variation in treatment and outcomes and predictors of outcomes in 5‐year‐old children with non‐syndromic unilateral cleft lip treated within a centralized service: the Cleft Care UK study. Part 6: summary and implications

Ness

Wills

Mahmoud

et al. 2017

Orthod Craniofacial Res

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Structured AbstractObjectives: To summarize and discuss centre-level variation across a range of treatment and outcome measures and examine individual and ecological determinants of outcome in children in Cleft Care UK (CCUK).Setting and sample population: Two hundred and sixty-eight 5-year-old British children with non-syndromic unilateral cleft lip and palate (UCLP) recruited to CCUK and treated within a centralized service. Materials and Methods:Children had a range of treatment and outcome measures collected at a 5-year audit clinic. These outcomes included dento-alveolar arch relationships from study models, measures of facial appearance from cropped photographs, hearing loss from audiological assessment, speech from speech recordings, self-confidence and strengths and difficulties from parental self-report. Data were collected on educational attainment at age 7 using record linkage. Centre variation was examined using hierarchical regression and associations between variables were examined using logistic or poisson regression.Results: There was centre-level variation for some treatments (early grommet placement, fitting of hearing aids, fluoride treatment, secondary speech surgery and treatment for cleft speech characteristics) and for some outcomes (intelligibility of speech).Hearing loss was associated with a higher risk of poor speech while speech therapy was associated with a lower risk of poor speech. Children had high levels of caries but levels of preventative treatment (fluoride varnish and tablets) were low. Conclusions:Further improvements to and monitoring of the current centralized model of care are required to ensure the best outcomes for all children with cleft lip and palate. K E Y W O R D Scentralization, cleft lip, cleft palate, outcomes, variationThis 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.

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“…We ran a series of research workshops to design the study that also triggered a James Lind Alliance initiative (21) and a health talk project (22) in children with cleft lip and palate. We completed several systematic reviews on treatment for children with cleft lip and palate (23)(24)(25). We conducted a survey of cleft centres that has described the service provision (12,13) and the process of centralization (26).…”

Section: Other Benefits Of This Programme Of Cleft Researchmentioning

confidence: 99%

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

Ness

Wills

Waylen

et al. 2015

Orthod Craniofacial Res

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Structured AbstractObjectivesWe 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 PopulationA 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 MethodsWe 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.ResultsWe 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.ConclusionsOutcomes 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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The Effectiveness of Psychosocial Intervention for Individuals with Cleft Lip and/or Palate

Cited by 35 publications

References 32 publications

Opportunities and Challenges in Establishing a Cohort Study: An Example from Cleft Lip/Palate Research in the United Kingdom

Opportunities and Challenges in Establishing a Cohort Study: An Example from Cleft Lip/Palate Research in the United Kingdom

Centre‐level variation in treatment and outcomes and predictors of outcomes in 5‐year‐old children with non‐syndromic unilateral cleft lip treated within a centralized service: the Cleft Care UK study. Part 6: summary and implications

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

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