scholarly journals The impact of participation in genetic research for families with cleft lip with and without cleft palate: a qualitative study

2014 ◽  
Vol 5 (3) ◽  
pp. 249-256 ◽  
Author(s):  
Lynley J. Donoghue ◽  
Margaret A. Sahhar ◽  
Ravi Savarirayan ◽  
Supriya Raj ◽  
Nicky M. Kilpatrick ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Cleft Palate ◽  
Cleft Lip ◽  
Genetic Research ◽  
The Impact

Reduced Socioeconomic Disparities in Cleft Care After Implementing a Cleft Nurse Navigator Program

2021 ◽  
pp. 105566562110056
Author(s):  
Connor Wagner ◽  
Carrie E. Zimmerman ◽  
Carlos Barrero ◽  
Christopher L. Kalmar ◽  
Paris Butler ◽  
...  
Keyword(s):  
Cleft Palate ◽  
Cleft Lip ◽  
Care Center ◽  
Tertiary Care ◽  
Multidisciplinary Care ◽  
Socioeconomic Disparities ◽  
Outpatient Appointment ◽  
Nurse Navigator ◽  
Insured Patients ◽  
The Impact

Objective: To evaluate the impact of a Cleft Nurse Navigator (CNN) program on care for patients with cleft lip and cleft palate and assess the programs efficacy to reduce existing socioeconomic disparities in care. Design: Retrospective review and outcomes analysis (n = 739). Setting: Academic tertiary care center. Patients: All patients presenting with cleft lip and/or cleft palate (CL/P) born between May 2009 and November 2019 with exclusions for atypical clefts, submucous cleft palates, international adoption, and very late presentation (after 250 days of life). Interventions: Multidisciplinary care coordination program facilitated by the CNN. Main Outcome Measures: Patient age at first outpatient appointment and age at surgery, reported feeding issues, weight gain, and patient-cleft team communications. Results: After CNN implementation, median age at outpatient appointment decreased from 20 to 16 days ( P = .021), volume of patient-cleft team communications increased from 1.5 to 2.8 ( P < .001), and frequency of reported feeding concerns decreased (50% to 35%; P < .001). In the pre-CNN cohort, nonwhite and publicly insured patients experienced delays in first outpatient appointment ( P < .001), cleft lip repair ( P < .011), and cleft palate repair ( P < .019) compared to white and privately insured patients, respectively. In the post-CNN cohort, there were no significant differences in first appointment timing by race nor surgical timing on the basis of racial identity nor insurance type. Conclusions: A variety of factors lead to delays in cleft care for marginalized patient populations. These findings suggest that a CNN can reduce disparities of access and communication and improve early feeding in at-risk cohorts.

Greater Palatal Cleft Width Predicts an Increased Risk for Unfavorable Outcomes in Cleft Palate Repair

2021 ◽  
pp. 105566562110295
Author(s):  
Åsa C. Okhiria ◽  
Fatemeh Jabbari ◽  
Malin M. Hakelius ◽  
Monica M. Blom Johansson ◽  
Daniel J. Nowinski
Keyword(s):  
Cleft Palate ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
University Hospital ◽  
Velopharyngeal Insufficiency ◽  
Secondary Surgery ◽  
Increased Risk ◽  
Cleft Palate Repair ◽  
The Impact ◽  
Nasal Emission

Objective: To investigate the impact of cleft width and cleft type on the need for secondary surgery and velopharyngeal competence from a longitudinal perspective. Design: Retrospective, longitudinal study. Setting: A single multidisciplinary craniofacial team at a university hospital. Patients: Consecutive patients with unilateral or bilateral cleft lip and palate and cleft palate only (n = 313) born from 1984 to 2002, treated with 2-stage palatal surgery, were reviewed. A total of 213 patients were included. Main Outcome Measures: The impact of initial cleft width and cleft type on secondary surgery. Assessment of hypernasality, audible nasal emission, and glottal articulation from routine follow-ups from 3 to 16 years of age. The assessments were compared with reassessments of 10% of the recordings. Results: Cleft width, but not cleft type, predicted the need for secondary surgery, either due to palatal dehiscence or velopharyngeal insufficiency. The distribution of cleft width between the scale steps on a 4-point scale for hypernasality and audible nasal emission differed significantly at 5 years of age but not at any other age. Presence of glottal articulation differed significantly at 3 and 5 years of age. No differences between cleft types were seen at any age for any speech variable. Conclusions: Cleft width emerged as a predictor of the need for secondary surgery as well as more deviance in speech variables related to velopharyngeal competence during the preschool years. Cleft type was not related to the need for secondary surgery nor speech outcome at any age.

374: The impact of the introduction of the 20 weeks fetal anomaly scan on prenatal diagnosis of fetal cleft lip with or without cleft palate

2012 ◽  
Vol 206 (1) ◽  
pp. S174-S175
Author(s):  
Sabine Ensing ◽  
Emily Kleinrouweler ◽  
Saskia Maas ◽  
Katia Bilardo ◽  
Chantal van der Horst ◽  
...  
Keyword(s):  
Prenatal Diagnosis ◽  
Cleft Palate ◽  
Cleft Lip ◽  
Fetal Anomaly ◽  
The Impact

scholarly journals Age of Individuals Undergoing Cleft Lip and Cleft Palate Surgeries in Nepal

2013 ◽  
Vol 52 (192) ◽  
Author(s):  
Shankar Man Rai ◽  
Kiran Nakarmi ◽  
Surendra Basnet ◽  
Pramila Shakya ◽  
Krishna Nagarkoti ◽  
...  
Keyword(s):  
Cleft Palate ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Cross Sectional Study ◽  
Health Concern ◽  
Cross Sectional ◽  
Remote Areas ◽  
Age At Surgery ◽  
The Right ◽  
The Impact

Introduction: Timely repair of cleft lip and palate maximises the benefits of surgery. Developing countries have large number of adults with unrepaired clefts. The impact of a cleft program can be determined by observing the trends of lower age at surgery. Public Health Concern Trust, Nepal has been providing a comprehensive nationwide cleft service since 1999. This study was conducted to see any change in the age at surgery. Methods: A retrospective cross sectional study was conducted to analyse the data of all the individuals’ age at primary cleft surgery from July 1999 to June 2010. Mean and median age of individuals as well as the proportion of individuals operated on at the right age in different years were calculated and compared. Results: The median age for cleft lip surgery decreased from 100 to 24 months. Similarly the median age for cleft palate surgery decreased from 70 to 28 months. Proportion of surgeries carried out in the recommended age also increased. A change in the policy of the program reaching out to more remote areas and removing the age barrier for surgery resulted in older adults receiving surgery and increased median age especially for cleft palate repairs. Conclusions: A nationwide cleft program for a decade had a small impact on age at surgery. There are still many individuals who are missing the ideal age for surgery. The program needs to reach more remote areas. This information will be useful for governmental as well as non-governmental organizations working in the area of clefts. Keywords: age; cleft lip; cleft palate; Nepal.    

Quality of Life Using General Population Validated Questionnaires in Children With Cleft Lip and/or Palate in New Zealand

2020 ◽  
pp. 105566562096237 ◽  
Author(s):  
John M. D. Thompson ◽  
S. Louise Ayrey ◽  
Rebecca F. Slykerman ◽  
Peter R. Stone ◽  
Peter V. Fowler
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Cleft Palate ◽  
Cleft Lip ◽  
Family Impact ◽  
Primary Surgery ◽  
Impact Scale ◽  
Pedsql 4.0 ◽  
The Impact

Objective: To determine the level of quality of life (QoL) in children with cleft lip and/or palate (CL/P) and whether this differs by cleft phenotype. Design: A cohort of children with CL/P born in New Zealand. Setting: A nationwide study of children born with CL/P and having primary surgery in New Zealand. Participants: Children with CL/P and their families (n = 397) who attended a cleft clinic between October 1, 2014, and September 30, 2017, and agreed to complete questionnaires on QoL. Main Outcomes: Primary outcomes were QoL from the PedsQL 4.0 core generic questionnaires and the PedsQL 2.0 Family impact scale. Results: Children with CL/P in New Zealand generally have a high QoL as assessed by the PedsQL. The impact of cleft phenotype had limited effects on the child, however there were significant impacts on parents and families. We found that the family impact scale differed by cleft phenotype with those with CL having the highest QoL and those with cleft palate the lowest, and this was consistent across QoL subscales. Quality of life improved as a whole by age, particularly in physical and cognitive functioning, as well as in the ability to undertake family activities. Conclusions: Children with CL/P have generally good levels of QoL in New Zealand, however cleft phenotype impacts on the level, with the lowest levels in those with cleft palate. Psychological support of children with cleft and their families should be an integral part of cleft care.

In Utero Cleft Palate Repair in the Ovine Model

1994 ◽  
Vol 31 (1) ◽  
pp. 37-44 ◽  
Author(s):  
John W. Canady ◽  
Steve K. Landas ◽  
Hughlett Morris ◽  
Sue Ann Thompson
Keyword(s):  
Cleft Palate ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
In Utero ◽  
Speech Impairment ◽  
Ovine Model ◽  
Minimal Scarring ◽  
Skeletal Defects ◽  
Cleft Palate Repair ◽  
The Impact

Cleft lip end palate defects assume many forms from mild to severe, but all may be associated with abnormal craniofacial development. Even the most expert and sophisticated methods of surgical repair are followed by scar contraction and fibrosis, which result in skeletal defects, dental abnormalities, cosmetic disfigurement, and speech Impairment. Recent clinical and experimental observations that fetal cutaneous wounds heal without scarring are of great potential interest In the management of cleft lip and palate. The objective of this study was to investigate the effect of prenatal repair of iatrogenically produced cleft palate on scar formation in the fetal lamb model. Ten ewes were operated on ranging in gestation from 70 to 133 days. Fifteen lambs were studied (nine cleft palates produced and repaired In utero; one cleft produced in utero and not repaired, four normal, unoperated palates; and one cleft palate produced and repaired 1 week postnatally). The lambs were delivered normally at 145 to 147 days gestation and maintained with the ewe until 1 month of age. The lambs were euthanized, and the surgical area of the palates studied grossly and histologically. Animals operated at 112 days or later in gestation exhibited scars both clinically and histologically. The animals that had cleft palate produced and repaired at 70 days gestation did not have a visible palatal scar at 1 month of age. Histologically, there was evidence of minimal scarring without disruption of normal architecture. Studies are underway to determine the impact of reduced scarring on craniofacial growth after palatal repair during mid gestation in the ovine model.

scholarly journals The impact of nonsyndromic cleft lip with or without cleft palate on oral health-related quality of life

2018 ◽  
Vol 26 (0) ◽  
Author(s):  
Maria Augusta Ramires da Silva ◽  
Isis de Fátima Balderrama ◽  
Ana Paula Wobeto ◽  
Renata Iani Werneck ◽  
Luciana Reis Azevedo-Alanis
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Palate ◽  
Cleft Lip ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Stability of Orofacial Clefting Rate in Alberta, 1980–2011

2014 ◽  
Vol 51 (6) ◽  
pp. 113-121 ◽  
Author(s):  
R. Brian Lowry ◽  
Barbara Sibbald ◽  
Tanya Bedard
Keyword(s):  
Folic Acid ◽  
Cleft Palate ◽  
Congenital Anomalies ◽  
Cleft Lip ◽  
Folic Acid Supplementation ◽  
Multiple Sources ◽  
Orofacial Clefts ◽  
Folic Acid Fortification ◽  
Orofacial Clefting ◽  
The Impact

Objective To determine the prevalence and trends of orofacial clefts in Alberta (Canada) over a 33-year period (1980 through 2011) and to determine whether the trends differ for subcategories of orofacial clefts for the period from 1997 through 2011. Design A prevalence study based on the Alberta Congenital Anomalies Surveillance System, which has multiple sources of ascertainment, capability of verification, and an upper age limit of 1 year. Inclusion All live born and stillborn babies and fetal deaths less than 20 weeks' gestation (including terminations of pregnancy) born in Alberta of mothers who reside in Alberta. Results and Conclusions Rates for cleft lip with or without cleft palate and cleft palate only have been very stable over the 33-year period (1980 through 2011). These rates include all clefts (isolated, syndromes, recognizable conditions, chromosomal and multiple congenital anomalies). Ascertainment of fetal deaths less than 20 weeks' gestation began in 1997. There are trends for the 1997 through 2011 cohort with a marginally significant increase for cleft lip with or without cleft palate in the isolated category and a significant decrease for cleft palate, mainly in the associated groups. The impact of folic acid fortification and/or multivitamins/folic acid supplementation reports in the literature have shown no consensus with respect to a change in the prevalence of orofacial clefts. It is unclear whether folic acid fortification has had any impact in Alberta.

scholarly journals Implementing the Brazilian Database on Orofacial Clefts

2013 ◽  
Vol 2013 ◽  
pp. 1-10 ◽  
Author(s):  
Isabella Lopes Monlleó ◽  
Marshall Ítalo Barros Fontes ◽  
Erlane Marques Ribeiro ◽  
Josiane de Souza ◽  
Gabriela Ferraz Leal ◽  
...  
Keyword(s):  
Cleft Palate ◽  
Cleft Lip ◽  
International System ◽  
Genetic Research ◽  
Orofacial Clefts ◽  
High Quality ◽  
Routine Patient Care ◽  
History Of ◽  
User Friendly ◽  
Case Classification

Background. High-quality clinical and genetic descriptions are crucial to improve knowledge of orofacial clefts and support specific healthcare polices. The objective of this study is to discuss the potential and perspectives of the Brazilian Database on Orofacial Clefts. Methods. From 2008 to 2010, clinical and familial information on 370 subjects was collected by geneticists in eight different services. Data was centrally processed using an international system for case classification and coding. Results. Cleft lip with cleft palate amounted to 198 (53.5%), cleft palate to 99 (26.8%), and cleft lip to 73 (19.7%) cases. Parental consanguinity was present in 5.7% and familial history of cleft was present in 26.3% subjects. Rate of associated major plus minor defects was 48% and syndromic cases amounted to 25% of the samples. Conclusions. Overall results corroborate the literature. Adopted tools are user friendly and could be incorporated into routine patient care. The BDOC exemplifies a network for clinical and genetic research. The data may be useful to develop and improve personalized treatment, family planning, and healthcare policies. This experience should be of interest for geneticists, laboratory-based researchers, and clinicians entrusted with OC worldwide.

scholarly journals Speech resonance in orthognathic surgery in subjects with cleft lip and palate

2005 ◽  
Vol 13 (3) ◽  
pp. 232-236 ◽  
Author(s):  
Trixy Cristina Niemeyer ◽  
Adriana de Oliveira Camargo Gomes ◽  
Ana Paula Fukushiro ◽  
Katia Flores Genaro
Keyword(s):  
Confidence Interval ◽  
Cleft Palate ◽  
Orthognathic Surgery ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Perceptual Analysis ◽  
Risks And Benefits ◽  
Maxillary Advancement ◽  
The Impact

The main purpose of this study was to investigate the impact of maxillary advancement on speech resonance in subjects with cleft lip and palate. The study sample was composed of 42 subjects aged 16 to 41 years old with operated cleft palate ± lip submitted to maxillary advancement. Resonance was evaluated before and 3 to 12 months after surgery by perceptual analysis and graduated from absent to severe. It was observed that 47.5% of the subjects presented impairment of resonance after orthognathic surgery, with a confidence interval (at 95%) from 31.5% to 63.9%. These results suggest that orthognathic surgery in individuals with cleft palate may interfere in resonance, causing, or increasing the degree of hypernasality. Therefore, this highlights the importance of the orientation about the risks and benefits of maxillary advancement surgery and follow-up of these patients.

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