scholarly journals The Cleft Multidisciplinary Collaborative: Establishing a Network to Support Cleft Lip and Palate Research in the United Kingdom

2018 ◽  
Vol 56 (4) ◽  
pp. 502-507 ◽  
Author(s):  
David C. G. Sainsbury ◽  
Amy Davies ◽  
Yvonne Wren ◽  
Lucy Southby ◽  
Ambika Chadha ◽  
...  
Keyword(s):  
United Kingdom ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
The United Kingdom

Cleft Lip and Palate Care in the United Kingdom—The Clinical Standards Advisory Group (CSAG) Study. Part 4: Outcome Comparisons, Training, and Conclusions

2001 ◽  
Vol 38 (1) ◽  
pp. 38-43 ◽  
Author(s):  
David Bearn ◽  
Sue Mildinhall ◽  
Terrie Murphy ◽  
John J. Murray ◽  
Debbie Sell ◽  
...  
Keyword(s):  
United Kingdom ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Alveolar Bone ◽  
Dental Health ◽  
Parent Satisfaction ◽  
Advisory Group ◽  
Dental Arch ◽  
The United Kingdom ◽  
Alveolar Bone Grafting

Objective A critical appraisal of cleft care in the United Kingdom. Design Retrospective comparative study. Setting All National Health Service cleft centers in the United Kingdom. Patients/Participants Children born with unilateral complete clefts of the lip and palate between April 1, 1982, and March 31, 1984 (12-year-olds), and April 1, 1989, and March 31, 1991 (5-year-olds). Newly appointed and senior cleft clinicians. Main Outcome Measures Skeletal pattern, dental arch relationship, success of alveolar bone grafting, dental health, facial appearance, oral health status, patient/parent satisfaction. Conclusions This paper highlights the poor outcomes for the fragmented cleft care in the United Kingdom, compared with European centers. There is an urgent need for a review of structure, organization, and training.

scholarly journals Closer to the Truth on National Fistula Prevalence After Unilateral Complete Cleft Lip and Palate Repair? The Cleft Care UK Study

2019 ◽  
Vol 57 (1) ◽  
pp. 5-13
Author(s):  
Arthur S. Yang ◽  
Bruce M. Richard ◽  
Andrew K. Wills ◽  
Osama Mahmoud ◽  
Jonathan R. Sandy ◽  
...  
Keyword(s):  
United Kingdom ◽  
Cleft Lip ◽  
Outcome Measure ◽  
Cleft Lip And Palate ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Palatal Fistula ◽  
The United Kingdom ◽  
Palate Repair

Objectives: To (1) determine the prevalence of nonperialveolar palatal fistula up to age 5 following repair of unilateral cleft lip and palate (UCLP) in the United Kingdom, (2) examine the association of palatoplasty techniques with fistula occurrence, and (3) describe the frequency of fistula repairs and their success. Design: Cross-sectional study. Setting: All 11 centralized regional cleft centers in the United Kingdom. Participants: Two hundred sixty-eight children born between 2005 and 2007 recruited by Cleft Care UK, a nationwide cross-sectional study of all 5-year-old children born with nonsyndromic UCLP. Main Outcome Measure: Nonperialveolar palatal fistula prevalence up to age 5. Results: Fistulas were found in 72 children (31.3%, 95% confidence interval: 25.4%-37.7%) and had no significant association with palate repair sequences. Twenty-four fistulas were repaired by age 5, 12 of which had data showing 10 (83.3%) successful repairs. Conclusion: The prevalence of nonperialveolar fistulas following primary palatoplasty of UCLP in the United Kingdom was higher than previously reported. This information should be part of the preoperative discussion with families. Prospective collection of the presence of fistulas will be necessary before we can associate the occurrence of fistulas with a surgeon, institution, surgical technique, or protocol of care.

Cleft Lip and Palate Care in the United Kingdom—The Clinical Standards Advisory Group (CSAG) Study. Part 3: Speech Outcomes

2001 ◽  
Vol 38 (1) ◽  
pp. 30-37 ◽  
Author(s):  
Debbie Sell ◽  
Pamela Grunwell ◽  
Sue Mildinhall ◽  
Terrie Murphy ◽  
Tremaine A. O. Cornish ◽  
...  
Keyword(s):  
United Kingdom ◽  
Cleft Lip ◽  
Speech Therapy ◽  
Cleft Lip And Palate ◽  
Age Groups ◽  
Advisory Group ◽  
Cross Sectional ◽  
The United Kingdom ◽  
Severe Degree ◽  
Therapy Intervention

Objective To summarize speech outcomes in children born with unilateral cleft lip and palate (UCLP) throughout the United Kingdom. Design Prospective descriptive study on a cross-sectional sample of children. Patients/Participants Data were collected for 238 5-year-olds (born between April 1, 1989, and March 31, 1991) and 218 12-year-olds (born between April 1, 1982, and March 31, 1984) with complete UCLP. Main Outcomes Ratings of intelligibility, nasality, “speech cleft type characteristics” and speech therapy intervention. Conclusions Nineteen percent of 5-year-olds and 4% of 12-year-olds were judged to be impossible to understand or just intelligible to strangers. Thirty-four percent of 5-year-olds and 17% of 12-year-olds had at least one serious error of consonant production. Eighteen percent of 5-year-olds and 12-year-olds had consistent hypernasality of mild, moderate, or severe degree. Approximately two-thirds of both age groups had undergone speech therapy.

Maxillary Growth in Cleft Lip and Palate Patients, With and Without Vomerine Flap Closure of the Hard Palate at the Time of Lip Repair

2018 ◽  
Vol 55 (9) ◽  
pp. 1205-1210 ◽  
Author(s):  
Norman Hay ◽  
Brijesh Patel ◽  
Priya Haria ◽  
Brian Sommerlad
Keyword(s):  
United Kingdom ◽  
Hard Palate ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
The United Kingdom ◽  
Study Support ◽  
Maxillary Growth ◽  
Flap Closure ◽  
Anterior Posterior

Objective: To assess the midterm effect on maxillary growth of vomerine flap (VF) closure of the hard palate, at the time of lip repair. Design: A retrospective analysis of prospectively collected nonrandomized data. Interventions: Consecutive participants with a unilateral cleft lip and palate (UCLP) were operated on, at 3 months of age, by the same surgeon. They were divided into 2 groups, those who had a VF and those who did not (non-VF). Setting: Participants were treated at 2 hospitals in the United Kingdom. Participants: Twenty-eight participants in the VF group and 24 participants in the non-VF group attended follow-up at 10 years of age. Main Outcome Measures: Standardized lateral cephalometric radiographs were taken at 10 years. Following tracing and digitization, parameters to assess the maxillary growth were analyzed. Results: No statistically significant differences were found in the anterior–posterior or vertical skeletal cephalometric parameters. Conclusions: The results of this study support the statement that VF repair does not significantly affect maxillary growth in patients with a UCLP, when assessed cephalometrically at 10 years of age. It should be noted that at this age, growth is not yet complete.

Emotional Well-Being in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom

2020 ◽  
Vol 57 (7) ◽  
pp. 877-885 ◽  
Author(s):  
Kenny Ardouin ◽  
Jess Hare ◽  
Nicola Marie Stock
Keyword(s):  
Mental Health ◽  
United Kingdom ◽  
General Population ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Body Esteem ◽  
Well Being ◽  
Health Condition ◽  
Psychological Support ◽  
The United Kingdom

Objectives: Previous research with adults born with cleft lip and/or palate (CL/P) has identified a range of concerns regarding mental health and quality of life, concluding that overall emotional functioning is poorer compared to the general population. The aim of the current study was to build on this previous work by investigating the self-reported emotional well-being of adults born with CL/P in the United Kingdom. Design: An online, mixed methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received between July and October 2018. Qualitative data were analyzed using inductive content analysis, while quantitative data were analyzed using descriptive statistics and independent t tests. Results: Almost half of the sample reported a diagnosis of a mental health condition. Scores on standardized measures indicated significantly lower global self-worth, higher levels of fear of negative appearance evaluation, and lower self-perceived job competence compared to normative data. Scores of overall body esteem were in line with the general population. Most participants had not received psychological support from their regional CL/P team and 41% were unaware of their entitlement to treatment from the National Health Service. Conclusions: Individuals with CL/P may be at risk of emotional distress persisting into adulthood. The integration of routine psychological support from an early age is highly recommended, as is information for young adults about to complete routine treatment. Comprehensive psychological screening for adults returning to the service later in life is also strongly advised.

Cleft Lip and Palate Care in the United Kingdom—The Clinical Standards Advisory Group (CSAG) Study. Part 1: Background and Methodology

2001 ◽  
Vol 38 (1) ◽  
pp. 20-23 ◽  
Author(s):  
Jonathan R. Sandy ◽  
Alison C. Williams ◽  
David Bearn ◽  
Sue Mildinhall ◽  
Terrie Murphy ◽  
...  
Keyword(s):  
United Kingdom ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Parent Satisfaction ◽  
National Study ◽  
Advisory Group ◽  
Cross Sectional ◽  
Age Cohorts ◽  
The United Kingdom ◽  
Facial Development

Objective To review the history of cleft care in the United Kingdom and the rationale and methodology of a national study. Design Descriptive overview to introduce this series of papers. Setting Fifty National Health Service cleft teams. Patients/Participants Two age cohorts, 5-year-olds and 12-year-olds, with nonsyndromic complete unilateral cleft lip and palate and their parents. Main Outcome Measures Facial development and appearance, quality of bone grafts, speech, oral health and patient/parent satisfaction. Conclusions The case for a national assessment of cleft care is made. The methodology of the cross-sectional outcome study is described, together with a survey of training for recently appointed clinicians.

scholarly journals Centralization of Cleft Lip and Palate Services in the United Kingdom

2018 ◽  
Vol 55 (5) ◽  
pp. 676-681 ◽  
Author(s):  
Nicola Marie Stock ◽  
Hamza Anwar ◽  
Jonathan R. Sandy ◽  
Nichola Rumsey
Keyword(s):  
United Kingdom ◽  
Large Scale ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Patient Centered ◽  
Delivery Of Care ◽  
Emotional Challenges ◽  
The United Kingdom ◽  
Specialist Services ◽  
The Impact

Background: Since the implementation of centralized services in the United Kingdom for those affected by cleft lip and/or palate (CL/P), several studies have investigated the impact of service rationalization on the delivery of care. While large-scale quantitative studies have demonstrated improvements in a range of patient outcomes, and smaller studies have reported on the benefits and challenges of centralization from the views of health professionals, little research has attempted to capture the patient perspective. Furthermore, few studies have investigated the views of adult “returners” who have undergone treatment both pre- and postcentralization. Methods: Qualitative data relevant to the subject of this article were extracted from 2 previous larger studies carried out between January 2013 and March 2014. A total of 16 adults born with CL/P contributed data to the current study. These data were subjected to inductive thematic analysis. Results: The findings suggest that centralization of CL/P services has considerably enhanced the patient experience. Specifically, the overall standard and coordination of care has improved, service delivery has become more patient centered, and access to professional psychological support and peer support has greatly improved patients’ capacity to cope with the associated emotional challenges. Conclusions: The data collected provide additional insight into the impact of centralization from the perspective of a largely unexplored patient population. In combination with other literature, these findings are also relevant to future efforts to centralize other specialist services around the world.

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