| 1. |
- Nicholls, Wendy, et al.
(författare)
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Adult-Specific life outcomes of cleft lip and palate in a Western Australian cohort
- 2018
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Ingår i: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 55:10, s. 1419-1429
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: People with a cleft of the lip and/or palate (CL/P) differ from their peers due to their facial appearance, hearing and speech difficulties, and the significant time spent attending appointments and recovering from surgical interventions. These differences may impact life outcomes including occupation, income, education, relationships, psychosocial health issues, and lifestyle choices.METHODOLOGY: A self-administered questionnaire was posted to 338 former and current patients of the Cleft Lip and Palate Unit of Princess Margaret Hospital (PMH), Perth, Western Australia.RESULTS: Completed questionnaires were returned by 158 former and current patients. In comparison to the Australian Bureau of Statistics, study participants attained equivalent highest education levels, full-time annual income levels, occupational categories, employment rates, and home ownership levels. They did not marry later and demonstrated positive health-related lifestyle behaviors. However independent living was significantly delayed, and the number of romantic relationships, marriages, and children was lower, with separation/divorce rates also being lower. A key finding was that 78% of participants self-reported that they experienced at least 1 psychosocial health issue and more than half experienced anxiety and/or depression.CONCLUSION: When comparing the sociological outcomes for the study participants, the psychosocial outcomes were the areas of most concern. Further investigation is required to determine the causes for the high self-reported rates of anxiety and/or depression found in this study.
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| 2. |
- Nicholls, Wendy, et al.
(författare)
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The psychosocial impact of cleft in a Western Australian cohort across 3 age groups
- 2019
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Ingår i: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 56:2, s. 210-221
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:: Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocial problems.METHODOLOGY:: A self-administered questionnaire was completed by a sample from the Western Australian cleft population comprising 3 age groups: child (n = 100), adolescent (n = 101), and adult (n = 158).RESULTS:: Public speaking, being photographed, special relationships, and participation in school were identified as the areas most impacted by having a cleft. Hearing and speech were reported to have a higher importance than facial and dental appearance. Participants rated support given to them by their parents as the most important, with high ratings for treatment providers. For teasing, the impact of cleft was significantly higher among participants with cleft lip and palate for both the adolescent and adult age groups. There was little significant difference by gender across the variables, which suggests that males are just as likely to require support as females.CONCLUSION:: The impact of a cleft across multiple psychosocial domains needs to be recognized and addressed as part of craniofacial team care across age groups.
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| 3. |
- 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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| 4. |
- 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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| 5. |
- 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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| 6. |
- 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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| 7. |
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| 8. |
- 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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| 9. |
- Bessell, Alyson, et al.
(författare)
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Speech and language therapy interventions for children with cleft palate : a systematic review
- 2013
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Ingår i: The Cleft Palate-Craniofacial Journal. - 1055-6656 .- 1545-1569. ; 50:1, s. e1-e17
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Tidskriftsartikel (refereegranskat)abstract
- Objective : (1) 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 (2) to identify types of interventions assessed. Design : Nine databases, including MEDLINE and EMBASE, were searched between inception and March 2011 to identify published articles relating to speech and language therapy for children with cleft palate with or without cleft lip. Studies that included at least 10 participants and reported outcome measures for speech and/or language measures were included. Studies where the experimental group had less than 90% of children with cleft palate with or without cleft lip were excluded. Two reviewers independently completed inclusion assessment, data extraction, and risk of bias assessment for all studies identified. Results : A total of 17 papers were evaluated: six randomized control trials and 11 observational studies. Studies varied widely on risk of bias, intervention used, and outcome measures reported. None of the studies had a low risk of bias. In terms of intervention approaches, seven studies evaluated linguistic approaches and 10 evaluated motor approaches. Outcomes measures did not support either approach over the other, and based on data reported it was difficult to ascertain which approach is more effective for children with cleft palate with or without cleft lip. Conclusions : The review found little evidence to support any specific intervention. Key uncertainties need to be identified and adequately powered, methodologically rigorous studies conducted to provide a secure evidence base for speech-language therapy practice in children with cleft palate with or without cleft lip.
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| 10. |
- 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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