The following people are in this group:
The Facial Disfigurement theme is led by Dr Andrea Waylen.
As part of a National Institute for Health Research (NIHR) funded programme, we are evaluating the impact of the centralisation of cleft services following the recommendations made by the Clinical Standards Advisory Group (CSAG) in 1998. The study will repeat and extend the first CSAG survey by reviewing the treatment and outcomes of around 250 five-year old children with complete unilateral cleft lip and palate. It will also examine the characteristics of cleft teams, and the economic impact of the centralisation of cleft services.
The programme has run two Cleft Research Workshops (2009 workshop - PDF, 3.9Mb; 2010 workshop - PDF,4.25Mb) for researchers, users and clinicians in cleft lip and palate to identify the important research questions that need to be answered. We also ran a joint Cleft/Head and Neck Cancer User Involvement Workshop (2011 workshop - PDF, 5.08Mb) and a joint Research Symposium (2011 Research Symposium-PDF,6.94Mb) in 2011.
Systematic reviews of quantitative and qualitative evidence in cleft lip and palate will also be conducted and where appropriate findings will be translated into evidence-based practice guidelines.
Funded by the Healing Foundation, The Cleft Collective is a research collaboration between the University of Bristol, the University of Manchester, the Royal Manchester Children’s Hospital, and the University of the West of England. It aims to find out more about the causes of cleft, the impact of cleft on a child’s life, and the best treatments. Up to 5,000 children and their families are being recruited to the Birth Cohort Study led by Professor Jonathan Sandy.
This study is funded by the National Institute for Health Research (NIHR) Research for Patient Benefit scheme and led by Dr Andrea Waylen. This is a qualitative research study. Interviews will take place with parents of children born with a cleft lip or palate and also young people who were born with a cleft lip or palate. Selected text, audio and video clips from the interviews will form the core of a new cleft lip and palate site on the Healthtalkonline website. Anyone interested in taking part in this project should contact Dr Aidan Searle.
We have designed a discrete choice experiment questionnaire to elicit parents’ perspectives on centralised cleft services for children in the UK (Ke et al. 2012).
We completed a systematic review (Bessell et al. 2012) 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 to identify the types of interventions assessed. We found that there is currently little evidence to support any specific intervention.
We completed a systematic review (Bessell et al. 2011) of specific feeding interventions for infants with cleft palate and/or lip and found that there is currently insufficient evidence to support any of the intervention methods used to improve growth outcomes in these infants.
We conducted a systematic cleft palate review (Ponduri et al. 2009) to determine whether early routine grommet insertion in children with cleft palate has a beneficial effect on hearing and speech and language development compared with conservative management and found that there is currently insufficient evidence on which to base the clinical practice of early routine grommet placement in children with cleft palate.
Prior to the formation of LEPOH, members of the group were joint researchers in the Clinical Standards Advisory Group (CSAG) study of the outcome of cleft care in the United Kingdom (Sandy et al. 2001; Williams et al. 2001; Sell et al. 2001; Bearn et al. 2001).
Members of the group were funded by the Craniofacial Society of Great Britian and Ireland to conduct a series of Cleft Lip and Palate Gene Bank pilot studies (PDF, 425Kb) that are being used to inform the development of a gene bank, funded by The Healing Foundation, for those children born with orofacial clefting.
Orthognathic surgery is an area of increasing interest. In the South West Region we have evaluated the process of care, the cost and the perceptions of people undergoing orthognathic surgery (Parbatani et al. 2010). The care of 372 people was reviewed. We found that care was generally of acceptable standard and followed international and national practices.