| 1. |
- Klintö, Kristina, et al.
(författare)
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Coverage, reporting degree and design of the Swedish quality registry for patients born with cleft lip and/or palate
- 2020
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Ingår i: BMC Health Services Research. - : BMJ Publishing Group Ltd. - 1472-6963. ; 20:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The objective of the Swedish cleft lip and palate (CLP) registry is to promote quality control, research and improvement of treatment, by comparison of the long-term results of surgery, orthodontics and speech from all six Swedish CLP centres. The purpose of the study was to investigate the coverage and reporting degree of the Swedish CLP registry, and to describe the design of the registry and discuss questions of reliability and validity of the data included.Methods: All six Swedish CLP centres participate in the registry. All children in Sweden with cleft lip and/or cleft palate, born from 2009 onwards, are included in the registry. Baseline data such as cleft type (ICD-10 diagnosis), heredity, birth weight and additional deformities and/or syndromes, as well as pre-surgical treatment, are recorded at first visit. Data on surgical treatment are recorded continuously. Treatment outcome regarding dentofacial development and speech are recorded at follow-ups at 5, 10, 16 and 19 years of age. Data on dentofacial development are also recorded 1 year after orthognathic surgery. In addition, data on babbling and speech are recorded at 18 months of age. Coverage degree and reporting degree of surgery was assessed by comparison with registrations in the Swedish Central patient registry. Reporting degree of orthodontic and speech registrations at 5 years of age was assessed by comparison with registrations at baseline.Results: The average coverage degree for children born 2009 to 2018 was 95.1%. For cleft-related surgeries, the average reporting degree was 92.4%. Average reporting degree of orthodontic registrations and speech registrations at age 5 years was 92 and 97.5% respectively.Conclusion: In order to achieve valid and reliable data in a healthcare quality registry, the degree of coverage and reporting needs to be high, the variables included should be limited and checked for reliability, and the professionals must calibrate themselves regularly. The Swedish CLP registry fulfils these requirements.
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| 2. |
- Lendt, Louise, et al.
(författare)
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Foreign-born 5-year-old children with cleft palate had poorer speech outcomes than their native-born peers
- 2024
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Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227.
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Tidskriftsartikel (refereegranskat)abstract
- Aim: Speech difficulties are common in children with cleft palate, but research on foreign-born children is limited. This study aimed to compare speech outcomes, surgery and speech intervention in 5-year-old foreign-born and Swedish-born children with cleft palate with or without cleft lip.Methods: This retrospective study analysed data from the Swedish cleft lip and palate registry for children born between 2009 and 2016 using Pearson's Chi-squared test and binary logistic regression.Results: Among 160 foreign-born (106 boys, 54 girls) and 847 Swedish-born (479 boys, 368 girls) 5-year-olds, foreign-born children had significantly lower rates of sufficient velopharyngeal competence (77% vs. 86%), age-appropriate consonant production (28% vs. 60%), and speech without non-oral speech errors (70% vs. 86%). Differences remained after adjustment for cleft type, gender and additional diagnosed conditions. After further adjustments for age at completed primary palatal surgery, differences in age-appropriate consonant production and speech without non-oral speech errors remained significant. Foreign-born children underwent completed primary palatal surgery at older ages and received more secondary palatal surgery and speech intervention than Swedish-born peers.Conclusion: Foreign-born children showed poorer speech outcomes than Swedish-born peers, despite more secondary palatal surgery and speech intervention. Age at completed primary palatal surgery could partly explain these differences.
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| 3. |
- Farzaneh, Farokh, et al.
(författare)
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von Langenbeck procedures at 14 months or Wardill at 18 months for primary repair of cleft palate in adult Swedish patients with bilateral complete cleft lip and palate: A study of facial growth.
- 2009
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Ingår i: Scandinavian journal of plastic and reconstructive surgery and hand surgery / Nordisk plastikkirurgisk forening [and] Nordisk klubb for handkirurgi. - : Informa UK Limited. - 1651-2073 .- 0284-4311. ; 43:4, s. 214-24
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Tidskriftsartikel (refereegranskat)abstract
- We compared facial growth in patients with bilateral complete cleft lip and palate (BCLP) in whom the palate had been repaired by the von Langenbeck procedure at the age of 14 months (L-14), or by the Wardill procedure at 18 months (W-18). A total of 151 unaffected subjects were used as a reference group. Thirty-six adult patients, 26 in the L-14 group, and 10 in the W-18 group, were investigated clinically and with lateral skull radiography, and they also filled out a questionnaire about their dental condition. Multiple linear regression was used to analyse the effect of surgical strategy, sex, and the presence of a velopharyngeal flap on several dependent variables indicating sagittal and vertical jaw relations, and inclination of incisors. The BCLP group was characterised by a pre-normal basal relation (ss-n-sm), retroclined upper (ILs/NL) and lower (ILi/ML) incisors, maxillary retrognathism (s-n-ss) in men, larger maxillary plane angle (NSL/NL) in women, larger mandibular plane (NSL/ML) and intermaxillary vertical relation (NL/ML) in men, and smaller anterior facial height (n-gn) and upper anterior facial height (n-sp). In the BCLP group, differences in outcomes could be explained only by sex. The sagittal jaw base relation (ss-n-sm) was significantly smaller in men than in women, whereas the total anterior facial height (n-gn) was greater in men. Lateral crossbite was found in about 75% of patients. About 70% were satisfied with their dental condition. The choice of surgical strategy had no significant influence on the variables measured on facial morphology.
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| 4. |
- Klintö, Kristina, et al.
(författare)
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Inter-centre comparison of data on surgery and speech outcomes at 5 years of age based on the Swedish quality registry for patients born with cleft palate with or without cleft lip
- 2022
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Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The objective of the Swedish cleft lip and palate registry (CLP registry) is to promote quality control, research and improvement of treatment, by the comparison of long-term results. The aim was to compare data from the CLP registry among the six treatment centres, regarding data on surgery and speech outcomes at 5 years of age.METHODS: The participants were 430 children born in Sweden from 2009 to 2014, with cleft palate with or without cleft lip and without known syndromes and/or additional malformations. The number of primary and secondary palatal surgeries up to 5 years of age, timing of the last primary palatal surgery, percentage consonants correct, percentage non-oral speech errors and perceived velopharyngeal competence at 5 years were assessed. Multivariable binary logistic regression adjusted for sex and cleft type was used to compare results between the six centres.RESULTS: At one centre (centre 4), the palate was closed in one to three stages, and at the remaining centres in one or two stages. At centre 4, more children underwent a higher number of palatal surgeries, and the last primary palatal surgery was performed at a higher age. Children in centre 4 were also less likely to achieve ≥86% correct consonants (OR = 0.169, P = < 0.001), have no non-oral speech errors (OR = 0.347, P = < 0.001), or have competent or marginally incompetent velopharyngeal competence (OR = 0.244, P = < 0.001), compared to the average results of the other centres. No clear association between patient volume and speech outcome was observed.CONCLUSIONS: The results indicated the risk of a negative speech result if the last primary palatal surgery was performed after 25 months of age. Whether the cleft in the palate was closed in one or two stages did not affect speech outcome. The Swedish CLP registry can be used for open comparisons of treatment results to provide the basis for improvements of treatment methods. If deviating negative results are seen consistently at one centre, this information should be acted upon by further investigation and analysis, making changes to the treatment protocol as needed.
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| 5. |
- Yasin, Lina, et al.
(författare)
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Long-term patient-reported outcomes after anterior distraction osteogenesis of the maxilla in patients with cleft
- 2023
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Ingår i: Journal of Plastic Surgery and Hand Surgery. - : Taylor & Francis Group. - 2000-656X .- 2000-6764. ; 57:1-6, s. 488-493
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Tidskriftsartikel (refereegranskat)abstract
- Maxillary growth inhibition in patients with cleft lip and palate (CLP) is an undesired effect that may occur in the teens despite proper primary care. Dental malocclusion and distortion of facial appearance can be treated with external distraction osteogenesis (DO) of the maxilla. This entails a Le Fort I osteotomy, fastening a semi-circular distractor to the skull, distraction for three weeks, and fixation for three months before removal of the device.The aim of this descriptive long-term follow-up study was to evaluate DO of the maxilla from the patient-reported long-term perspective.Fourteen patients underwent a long-term follow-up including a questionnaire regarding their experience of DO. Sex, CLP diagnosis, age at DO and follow-up, and time required for active distraction and fixation were noted. Furthermore, documentation on rhinoplasty, lip plasty and velopharyngeal plasty after DO was registered. Objective results were assessed by a positive dental overjet in the front.Ten patients considered the distractor an everyday constraint, but all thought the procedure was worthwhile and would recommend it to others. Thirteen patients experienced improved bite and chewing, whereas one considered function unchanged. All were satisfied with their dental alignment. Three patients underwent a velopharyngeal plasty after DO. Moreover, six rhinoplasties and two lip plasties were performed.Despite a long and challenging treatment, teenagers and young adults with CLP and maxillary hypoplasia tolerate DO of the maxilla very well. Secondary measures to improve speech and appearance are often indicated.
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| 6. |
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| 7. |
- Schaar Johansson, Malin, et al.
(författare)
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Surgical treatment of velopharyngeal dysfunction : incidence and associated factors in the Swedish cleft palate population
- 2024
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Ingår i: Journal of Plastic, Reconstructive & Aesthetic Surgery. - : Elsevier. - 1748-6815 .- 1878-0539. ; 90, s. 240-248
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Speech in children with cleft palate can be affected by velopharyngeal dysfunction, which persists after primary palate repair. The incidence of surgery to correct velopharyngeal dysfunction in this patient group has previously been reported as 2.6–37%. We aimed to investigate the incidence of velopharyngeal dysfunction surgery in Swedish children with cleft palate and to examine potential associations of independent variables with this incidence.Methods: In this cohort study, we analysed data from the Swedish cleft lip and palate quality registry for 1093 children with cleft palate with or without cleft lip. Kaplan–Meier analysis was used to estimate the risk of having velopharyngeal dysfunction surgery. Multivariable Cox proportional hazards models were used to estimate the associated effect of cleft subtype, additional diagnoses, gender, and age at and number of stages for primary palate repair on the primary outcome.Results: The risk of having velopharyngeal dysfunction surgery was 25.6%. Complete primary palate repair after the age of 18 months or in more than one stage was associated with a higher risk, but it could not be determined which of these was the more significant factor. Cleft soft palate was associated with a significantly lower risk than other cleft subtypes.Conclusions: Primary palate repair at a higher age or in more than one stage may increase the risk of having velopharyngeal dysfunction surgery. Further analysis of potential unknown confounding factors and the association between the incidence of velopharyngeal dysfunction and surgery to correct this condition is needed.
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| 8. |
- Stiernman, Mia, et al.
(författare)
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Comparison of Corresponding Scores From the Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q in Swedish Patients With Cleft Lip and/or Palate
- 2020
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Ingår i: Cleft Palate - Craniofacial Journal. - : SAGE Publications. - 1055-6656 .- 1545-1569.
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The primary aim of this study was to compare corresponding scores between 2 existing cleft-specific patient-reported outcome measures (PROMs)—Cleft Hearing Appearance and Speech Questionnaire (CHASQ) and CLEFT-Q. The second aim of the study was to investigate patient opinion on the 2 PROMs. Design: Cross-sectional questionnaire study. Setting: Participants were recruited from a University Hospital. They answered CHASQ and CLEFT-Q either in the hospital or at home. Participants: Thirty-three participants with cleft lip and/or palate, aged 10 to 19 years. Main Outcome Measure: CHASQ and CLEFT-Q. Results: The CHASQ scores and the corresponding CLEFT-Q scores on appearance correlated significantly. Corresponding scores regarding speech did not correlate significantly. A majority, 15 (58%) participants, answered that they liked CLEFT-Q more than CHASQ, 18 participants (69%) thought CHASQ was easier to complete, and 19 (76%) thought CLEFT-Q would better inform health care professionals. Conclusion: Both instruments showed strengths and limitations. Clinicians will have to consider each instrument’s respective qualities when choosing to implement either PROM.
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| 9. |
- Aspelin, Ellen, et al.
(författare)
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Additional diagnoses in children with cleft lip and palate up to five years of age
- 2023
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Ingår i: Journal of Plastic Surgery and Hand Surgery. - 2000-656X. ; 57:1-6, s. 476-482
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Tidskriftsartikel (refereegranskat)abstract
- Cleft lip and palate (CL/P) is the most common congenital craniofacial malformation and is often associated with additional diagnoses. The purpose of this study was to explore the cumulative five-year incidence of additional diagnoses for patients with cleft lip and palate. Further aims were, type of cleft and type of additional diagnose and to validate CLP registry data on additional diagnoses. Data from the CLP registry regarding children with CL/P in the Southern Health Care Region were retrieved and based on the registry, participants were selected. A review of medical records of participants born 2006–2016 was performed and data regarding participant characteristics and additional diagnoses were collected. Of the 250 participants included in the review of medical records, 90 participants (36%) had an additional diagnosis. Of the total number of identified additional diagnoses (n = 137), cardiovascular system (20.4%) and extremities and skeletal system (17.5%) were the most prevalent categories. The comparison between medical records and the CLP registry of all children showed a 14.4 percentage points higher incidence of additional diagnoses in the medical records. Roughly every third child received an additional diagnosis and diagnoses related to the cardiovascular system were the most frequent. This study also shows that additional diagnoses were under-reported in the CLP registry. Future research is necessary to strengthen associations of additional diagnoses to CL/P.
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| 10. |
- Becker, Magnus, et al.
(författare)
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Adult skeletal profile in isolated cleft palate: a comparison of the von Langenbeck and Wardill procedures for primary repair of the palate
- 2001
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Ingår i: Scandinavian Journal of Plastic and Reconstructive Surgery and Hand Surgery. - : Informa UK Limited. - 1651-2073 .- 0284-4311. ; 35:4, s. 387-397
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Tidskriftsartikel (refereegranskat)abstract
- Sixty-four adult patients operated on for isolated cleft palate were evaluated with regard to facial skeletal morphology using conventional radio-cephalometry. Dental occlusion was assessed clinically. Forty-two had had a von Langenbeck repair at the age of 7 months and 22 a Wardill repair at 18 months. The mean error of the method was 0.7 degree for angular, and 0.9 mm for linear, measurements. The group with clefts had less maxillary prognathism (s-n-ss), more maxillary inclination (NSL/NL), more retroclined lower incisors (ILI/ML), and shorter total and upper facial heights (n-gn, n-sp) compared with the reference group. Multiple regression analysis was used to evaluate differences between the two treatment regimens. Explanatory variables in addition to surgical technique were sex, severity of cleft, and presence of a velopharyngeal flap. Only one variable, lower incisor inclination (ILI/ML), was different for the two regimens. Ten (24%) in the von Langenbeck group had a lateral cross-bite compared with one (5%) in the Wardill group. Other variables in a multivariate regression analysis were affected by sex and severity of cleft to various degrees. This study showed no obvious differences in facial skeletal morphology that could be attributed to surgical technique. Factors other than technique, including sex, age, and severity of cleft merit attention.
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