The Cleft Care UK (CCUK) is a cross sectional survey of five year old children born with unilateral cleft lip and palate. The project was carried out 15 years after an initial survey commissioned by the Clinical Standards Advisory Group (CSAG) led to government recommendations on centralisation. CCUK was a multi-centre survey recruited children born between 1st April 2005 and 31st March 2007 in cleft centre audit clinics. Three hundreds fifty-nine eligible children were identified and 268 were recruited to the study.
Methods and Study Objectives
The objective of this study was to investigate the impact of reconfigured cleft care services in the United Kingdom on outcomes of children (e.g., facial apperance, speech, hearing, oral health and self-confidence). Centralisation impacts in terms of variation cross cleft centres were also investigated.
The measurements of outcomes were compared against the ones from the CSAG audit, which took place 15 years earlier prior to centralisation arrangements. For each clinical measure, a methodology that followed those of the earlier survey as closely as possible was used. An evaluation of the cleft services - befor and after centralization - was published in a supplement of six papers in the Orthodontics & Craniofacial Research, 2015.
In addition to the comparisons of before-after centralisation, impacts of centre-level variations on each clinical outcom were investigated. Variation across centres was analysed using mixed effects models to account for the random effect of the UK cleft centres on children outcomes. The findings of this analysis were published in a set of six papers in the Orthodontics & Craniofacial Research, 2017.
The scientific team includes: Dr. Osama Mahmoud; Dr. Vanessa Marshall; Prof. Andy Ness; Prof. Jonathan Sandy; Dr. Andrea Waylen; Dr. Andrew Wills.
Responsibilities & Contributions
I am involved in a number of core research directions of this project. A brief description of my research responsibilities are listed below:
1. Analysis of Centralisation Impacts
I performed the statistical analysis of centre-level variations for the entire clincal outcomes. Mixed models, adjusted by age and gender, have been used to estimate the variations across cleft centres for children outcomes.
2. Data Dictionary
I am planning, designing and carrying out the documentation of CCUK data. I am using my own developed tool, named D2, to generate the CCUK data dictionary. This dictionary will play a key role in guiding future researchers through the study and enabling reproduce the research findings and understand clearly the methodology of data collection as well as data structure.
3. Data Catalogue & Electronic Data Request
I have developed an electronic framework for requesting data that allow interested external researchers to easily identify and request their target variables. This framework will not only smooth the track of the requester. It can also make the data extraction process much easier, shorter and more precise since the request form was linking automatecally with the CCUK database. This enables the data team to simply click a button to extract data of the requested variables.
4. Individual Centre Reports
For the purpose of providing UK cleft centres with feedback on their outcomes, I have been responsible to create individual reports addressing how each particular centre performs compared to other cleft centres in the UK. This is achieved by describing the amount of variation across centres for each outcome, and by estimating the extent to which each centre differs from the overall average. The reports were tailored for each particular centre to visualise the amount of variation with anonymised data for all other centres. They covered the following six areas: (1) Dento-alveolar relationship; (2) Facial appearance; (3) Oral health; (4) Audiology; (5) Speech; (6) Wellbeing.
I have developed a novel tool, named 'CCUK-GenRep', to automate generation as well as reproducibility of such reports. This scheme allowed to avoid writing, revising and updating 13 different reports - one for each individual centre. Instead, only one report was structured such that the R code, performing the analysis, is simply embedded in its relevant sections - but hidden in the background. This coded design could identify the centre for which a report is being produced and then generate and present the corresponding results accordingly.
Dissemination of Project Outputs
The project had a number of papers published on centralisation of cleft care in the United Kingdom: results of the Cleft Care UK study. Another set of scientific papers had been published on determinants of outcomes in a centralised service: the Cleft Care UK study:
Wills A, Mahmoud O, Hall A, Sell D, Smallridge J, Southby L, Toms S, Waylen A, Wren Y, Ness A, Sandy J: Centre level variation of treatment and outcome in 5 year old children with non-syndromic unilateral cleft lip and palate: the Cleft Care UK study. Part 1: methodology and results for dento-facial outcomes. Orthod Craniofac Res, 2017, 20 (S2), 1–7.
Hall A, Wills A, Mahmoud O, Sell D, Waylen A, Grewal S, Sandy J, Ness A: Centre level variation in outcomes and treatment for otitis media with effusion and hearing loss and the association of hearing loss with developmental outcomes at age 5 and 7 years in children with non-syndromic unilateral cleft lip and palate: the Cleft Care UK study. Part 2. Orthod Craniofac Res, 2017, 20 (S2), 8–18.
Smallridge J, Wills A, Mahmoud O, Chong A, Clark V, Collard M, Sandy J, Ness A: Centre level variation in dental treatment and oral health and individual and area level predictors of oral health in 5 year old children with non-syndromic unilateral cleft lip and palate: the Cleft Care UK study. Part 3. Orthod Craniofac Res, 2017, 20 (S2), 19–26.
Sell D, Southby L, Wren Y, Wills A, Hall A, Mahmoud O, Waylen A, Sandy J, Ness A: Centre level variation in speech outcome and interventions, and factors associated with poor speech outcomes in 5 year old children with non-syndromic unilateral cleft lip and palate: the Cleft Care UK study. Part 4. Orthod Craniofac Res, 2017, 20 (S2), 27–39.
Waylen A, Mahmoud O, Wills A, Sell D, Sandy J, Ness A: Centre level variation in behaviour and the predictors of behaviour in 5 year old children with non-syndromic unilateral cleft lip: the Cleft Care UK study. Part 5. Orthod Craniofac Res, 2017, 20 (S2), 40–47.
Ness A, Wills A, Mahmoud O, Hall A, Sell D, Smallridge J, Southby L, Stokes D, Toms S, Waylen A, Wren Y, Sandy J: 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 centralised service: the Cleft Care UK study. Part 6: summary and implications. Orthod Craniofac Res, 2017, 20 (S2), 48–51.
From here, you can view the project webpage at the Univerity of Bristol Nutrition BRU.