| 1. |
- Allori, AC, et al.
(författare)
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A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care
- 2017
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Ingår i: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association. - : SAGE Publications. - 1545-1569. ; 54:5, s. 540-554
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Tidskriftsartikel (refereegranskat)abstract
- Care of the patient with cleft lip and/or palate remains complex. Prior attempts at aggregating data to study the effectiveness of specific interventions or overall treatment protocols have been hindered by a lack of data standards. There exists a critical need to better define the outcomes- particularly those that matter most to patients and their families-and to standardize the methods by which these outcomes will be measured. This report summarizes the recommendations of an international, multidisciplinary working group with regard to which outcomes a typical cleft team could track, how those outcomes could be measured and recorded, and what strategies may be employed to sustainably implement a system for prospective data collection. It is only by agreeing on a common, standard set of outcome measures for the comprehensive appraisal of cleft care that intercenter comparisons can become possible. This is important for quality-improvement endeavors, comparative effectiveness research, and value-based health-care reform.
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| 2. |
- Andine, A., et al.
(författare)
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Cleft Palate in Apert Syndrome: A Descriptive Study of Incidence and Surgical Outcome
- 2023
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Ingår i: The Cleft Palate-Craniofacial Journal. - 1055-6656.
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Tidskriftsartikel (refereegranskat)abstract
- Objective Apert syndrome (AS) is a rare congenital craniofacial disorder that requires a multidisciplinary approach to treatment and multiple surgeries. Given that cleft palate (CP) is presented in some of these cases, this poses an additional risk of aggravating obstructed airways after closure. The timing and outcome of CP repair in these patients remains disputed and requires additional attention. Design This retrospective analysis included patients diagnosed with CP and AS, born between 1950 and 2020, and treated at our institution. Data were collected from medical records and evaluated using descriptive statistics. Setting Data analyses were conducted at Sahlgrenska University Hospital in Gothenburg, Sweden. Patients/Participants A registry of 83 patients with AS resulted in a cohort of 26 patients also presenting with CP. Main Outcome Measures Postoperative complications, requirement for intensive care, and reoperations following CP repair. Results CP incidence among all registered patients was 31%. Patients undergoing CP repair at low age (mean: 22.5 months) tended to experience more frequent postoperative complications and requirements for intensive care. Among the evaluated cohort with medical records describing CP repair (n = 14), 29% experienced postoperative complications, all of which involved aggravation of obstructed airways. Conclusions This study highlights the importance of airway assessment before and after CP repair in AS. The findings suggest that surgical outcomes might benefit from postponing CP repair, avoiding combined surgeries, and operating in two stages when indicated. However, additional and larger studies are required.
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| 3. |
- Apon, I, et al.
(författare)
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Barriers and Facilitators to the International Implementation of Standardized Outcome Measures in Clinical Cleft Practice
- 2022
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Ingår i: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association. - : SAGE Publications. - 1545-1569. ; 59:1, s. 5-13
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Tidskriftsartikel (refereegranskat)abstract
- To identify barriers and facilitators to international implementation of a prospective system for standardized outcomes measurement in cleft care. Design: Cleft teams that have implemented the International Consortium for Health Outcomes Measurement Standard Set for cleft care were invited to participate in this 2-part qualitative study: (1) an exploratory survey among clinicians, health information technology professionals, and project coordinators, and (2) semistructured interviews of project leads. Thematic content analysis was performed, with organization of themes according to the dimensions of the reach, effectiveness, adoption, implementation and maintenance (RE-AIM) framework: reach, effectiveness, adoption, implementation, and maintenance. Results: Four cleft teams in Europe and North America participated in this study. Thirteen participants completed exploratory questionnaires and 5 interviewees participated in follow-up interviews. Survey responses and thematic content analysis revealed common facilitators and barriers to implementation at all sites. Teams reach patients either via email or during the clinic visit to capture patient-reported outcomes. Adopting routine data collection is enhanced by aligning priorities at the organizational and cleft team level. Streamlining workflows and developing an efficient data collection platform are necessary early on, followed by pilot testing or stepwise implementation. Regular meetings and financial resources are crucial for implementing, sustaining, analyzing collected data, and providing feedback to health care professionals and patients. Fostering patient-centered care was articulated as a positive outcome, whereas time presented challenges across all RE-AIM dimensions. Conclusions: Identified themes can inform ongoing implementation efforts. Intentionally investing time to lay a sound foundation early on will benefit every phase of implementation and help overcome barriers such as lack of support or motivation.
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| 4. |
- Bakri, Sherif, et al.
(författare)
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Vertical Maxillary Growth After Two Different Surgical Protocols in Unilateral Cleft Lip and Palate Patients.
- 2014
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Ingår i: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association. - : SAGE Publications. - 1545-1569. ; 51:6, s. 645-650
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Tidskriftsartikel (refereegranskat)abstract
- Objective: The aim of the present study was to compare vertical maxillofacial growth in patients born with unilateral cleft lip and palate (UCLP) who were treated using two different surgical protocols. Design: A retrospective cohort study. Subjects: We studied 92 patients with complete UCLP (61 male and 31 female) treated at Sahlgrenska University Hospital in Gothenburg, Sweden: 46 consecutive patients born between 1965 and 1974 who were operated according to the Wardill-Kilner (W-K) protocol and 46 consecutive patients born between 1982 and 1989 who were operated according to the Gothenburg delayed hard palate closure (DHPC) protocol. Methods: We analyzed lateral cephalograms obtained at 10 years of age. Results: Patients treated according to the Gothenburg DHPC protocol had significantly greater anterior upper facial height, anterior maxillary height, overbite, and inclination of the maxilla than those treated with the W-K protocol. Both techniques led to similar posterior upper facial height. Conclusion: The Gothenburg DHPC protocol in patients with complete UCLP results in more normal anterior maxillary vertical growth and overbite and therefore increased maxillary inclination at 10 years of age.
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| 5. |
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| 6. |
- Bartzela, Theodosia, et al.
(författare)
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A longitudinal three-center study of dental arch relationship in patients with bilateral cleft lip and palate.
- 2010
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Ingår i: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association. - : SAGE Publications. - 1545-1569. ; 47:2, s. 167-74
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Tidskriftsartikel (refereegranskat)abstract
- To compare and evaluate longitudinally the dental arch relationships from 4.5 to 13.5 years of age with the Bauru-BCLP Yardstick in a large sample of patients with bilateral cleft lip and palate (BCLP).Retrospective longitudinal intercenter outcome study.Dental casts of 204 consecutive patients with complete BCLP were evaluated at 6, 9, and 12 years of age. All models were identified only by random identification numbers.Three cleft palate centers with different treatment protocols.Dental arch relationships were categorized with the Bauru-BCLP yardstick. Increments for each interval (from 6 to 9 years, 6 to 12 years, and 9 to 12 years) were analyzed by logistic and linear regression models.There were no significant differences in outcome measures between the centers at age 12 or at age 9. At age 6, center B showed significantly better results (p=.027), but this difference diminished as the yardstick score for this group increased over time (linear regression analysis), the difference with the reference category (center C, boys) for the intervals 6 to 12 and 9 to 12 years being 10.4% (p=.041) and 12.9% (p=.009), respectively.Despite different treatment protocols, dental arch relationships in the three centers were comparable in final scores at age 9 and 12 years. Delaying hard palate closure and employing infant orthopedics did not appear to be advantageous in the long run. Premaxillary osteotomy employed in center B appeared to be associated with less favorable development of the dental arch relationship between 9 and 12 years.
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| 7. |
- Botticelli, Susanna, et al.
(författare)
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Do Infant Cleft Dimensions Have an Influence on Occlusal Relations? A Subgroup Analysis Within an RCT of Primary Surgery in Patients With Unilateral Cleft Lip and Palate
- 2020
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Ingår i: The Cleft Palate-Craniofacial Journal. - : Sage Publications. - 1055-6656 .- 1545-1569. ; 57:3, s. 378-388
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To investigate whether infant cleft dimensions, in a surgical protocol with early or delayed hard palate closure, influence occlusion before orthodontics.less thanbr /greater thanDesign: Subgroup analysis within a randomized trial of primary surgery (Scandcleft).less thanbr /greater thanSetting: Tertiary health care. One surgical centre.less thanbr /greater thanPatients and Methods: A total of 122 unilateral cleft lip and palate infants received primary cheilo-rhinoplasty and soft palate closure at age 4 months and were randomized for hard palate closure at age 12 versus 36 months. A novel 3D analysis of cleft size and morphology was performed on digitized presurgical models. Occlusion was scored on 8-year models using the modified Huddarth-Bodenham (MHB) Index and the Goslon Yardstick.less thanbr /greater thanMain Outcome Measurements: Differences in MHB and Goslon scores among the 2 surgical groups adjusted for cleft size.less thanbr /greater thanResults: The crude analysis showed no difference between the 2 surgical groups in Goslon scores but a better MHB (P = .006) for the group who received delayed hard palate closure. When adjusting for the ratio between cleft surface and palatal surface (3D Infant Cleft Severity Ratio) and for posterior cleft dimensions at tuberosity level, the delayed hard palate closure group received 3.65 points better for MHB (confidence interval: 1.81; 5.48; P less than .001) and showed a trend for reduced risk of receiving a Goslon of 4 or 5 (P = .052). For posterior clefts larger than 9 mm, the Goslon score was better in the delayed hard palate closure group (P = .033).less thanbr /greater thanConclusions: Seen from an orthodontic perspective, when the soft palate is closed first, and the cleft is large, the timing of hard palate closure should be planned in relation to posterior cleft size.
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| 8. |
- Brunnegård, Karin, et al.
(författare)
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A cross-sectional study of speech in 10-year-old children with cleft palate: results and issues of rater reliability.
- 2007
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Ingår i: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association. - : SAGE Publications. - 1055-6656. ; 44:1, s. 33-44
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To describe speech based on perceptual evaluation in a group of 10-year-old children with cleft palate. A secondary aim was to investigate the reliability of speech-language pathologists' perceptual assessment of cleft palate speech. DESIGN: Retrospective cross-sectional study in children with cleft palate. External raters made assessments from randomized speech recordings. SUBJECTS: Thirty-eight children with unilateral cleft lip and palate (UCLP) or cleft palate only (CPO) and 10 children in a comparison group. MAIN OUTCOME MEASURES: Ratings of hypernasality, hyponasality, audible nasal air leakage, weak pressure consonants, and articulation. Exact agreement and weighted kappa values were used for reliability. RESULTS: Hypernasality was found in 25% of children with a cleft of the soft palate (CSP), 33% of children with a cleft of the hard and soft palate (CHSP), and 67% of children with a UCLP. Similar results were found for audible nasal air leakage. Articulation errors were found in 6% of the CHSP group and 25% of the UCLP group, whereas no child in the CSP group had articulation errors. The reliability was moderate to good for different variables, with lowest values for hypernasality. CONCLUSIONS: Speech results in this series seem less satisfactory than those reported in other published international studies, but it is difficult to draw any certain conclusions about speech results because of large methodological differences. Further developments to ensure high reliability of perceptual ratings of speech are called for.
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| 9. |
- Brunnegård, Karin, et al.
(författare)
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Reliability of Speech Variables and Speech-Related Quality Indicators in the Swedish Cleft Lip and Palate Registry
- 2020
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Ingår i: Cleft Palate-Craniofacial Journal. - : SAGE Publications. - 1055-6656 .- 1545-1569. ; 57:6, s. 715-722
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To assess the reliability of speech variables and speech-related quality indicators in the Swedish quality registry for cleft lip and palate (CLP). Design: Retrospective study. Setting: Primary care university hospitals. Participants: Fifty-two 5-year-old children with unilateral CLP and 41 with bilateral CLP. Main Outcome Measures: Registry data for “percent nonoral errors” and “perceived velopharyngeal competence” (VPC) were compared to reassessments by 4 independent judges based on audio recordings. Interjudge agreement for “percent consonants correct” (PCC) and the reliability of 3 quality indicators were also assessed. Agreement was calculated with single measures intraclass correlation coefficient (ICC) for articulation outcomes, quadratic weighted κ and ICC for VPC, and percentage agreement and κ for quality indicators. Results: When the agreement between registry data and the judges’ reassessments was assessed, the ICC was 0.79 for percent nonoral errors. For VPC, the κ coefficient was 0.66 to 0.75 and the ICC was 0.73. Interjudge agreement for PCC calculated with ICC was 0.85. For the quality indicator “proportion of children with ≥86% correct consonants,” all 4 judges were in agreement for 72% of the cases. For “proportion of children without nonoral speech errors” and “proportion of children with competent or marginally incompetent velopharyngeal function,” the agreement between registry data and the 4 judges was 89% and 85%, respectively. Conclusions: The results indicate that registry data on PCC, percent nonoral errors, VPC, and the quality indicators “proportion of children without nonoral speech errors” and “proportion of children with competent or marginally incompetent velopharyngeal function” are reliable. © 2020, American Cleft Palate-Craniofacial Association.
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| 10. |
- Canto Moreira, Nuno, 1962-, et al.
(författare)
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Visualisation of the fetal lip and palate : is brain-targeted MRI reliable?
- 2013
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Ingår i: The Cleft Palate-Craniofacial Journal. - : Sage Publications. - 1055-6656 .- 1545-1569. ; 50:5, s. 513-519
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The purpose of the study was to evaluate the ability of brain-targeted MRI to assess the anatomy of the fetal upper lip and palate.Methods: Two independent readers made a blind retrospective review of 60 MRI of fetuses of 20 to 38 gestational weeks (GW). Fifty-five fetuses had normal post-natal follow-up. Five fetuses had oro-facial anomalies at post-natal follow-up, including five cleft lips (two bilateral, three unilateral), four cleft primary palates (two bilateral, two unilateral) and two cleft secondary palates.The upper lip, primary palate, secondary palate and nasal septum were scored into four levels, from evidently normal to evidently abnormal. In case of a suspected pathology, the readers attempted a diagnosis.Results: Interobserver agreement (weighted kappa) was 0.79 for the upper lip, 0.70 for the primary palate, 0.86 for the secondary palate, and 0.90 for the nasal septum. The scoring levels of the readers did not change significantly across gestational age.The readers identified 100% of all pathological cases. The normality was correctly scored in 96-100% of the normal lips and primary palates and in 93-97% of the normal secondary palates depending on the reader. A deviated septum was only scored in two fetuses with unilateral cleft palates.Conclusion: MRI in experienced hands seems reliable for assessment of the fetal lip and palate, even in brain-targeted examinations. Attention should therefore be paid to the lip and palate in all fetal MRI examinations, since unsuspected clefts may be revealed.
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