Validation of reported dentoalveolar relationships in the Swedish Quality Registry for Cleft Lip and Palate

Pegelow, Marie; Klintö, Kristina; Stålhand, Gudrun; Lemberger, Mathias; Vesterbacka, Malin; Rizell, Sara; Chalien, Midia Najar; Björnström, Lena; Becker, Magnus; Lindberg, Marianne; Marcusson, Agneta; Karsten, Agneta

doi:10.1093/ejo/cjz069

Cited by 3 publications

(3 citation statements)

References 21 publications

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“…Agreement between orthodontic data in the Swedish CLP registry and re-assessments has been found to be reliable for the chosen indices [26], and the reporting degree to be good. It was considered possible to use orthodontic data for open comparison.…”

Section: Orthodontic Datamentioning

confidence: 79%

“…For individuals who have been treated with bone-grafting, we will also record bone level in the cleft At the second calibration meeting, the orthodontists also performed blinded re-assessments of dental casts and photos. Agreement between data in the registry and re-assessments was investigated, and the registry data were found to be reliable for the chosen indices [26].…”

Section: Orthodontic Datamentioning

confidence: 99%

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Coverage, reporting degree and design of the Swedish quality registry for patients born with cleft lip and/or palate

Klintö

Karsten

Marcusson

et al. 2020

BMC Health Serv Res

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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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Section: Orthodontic Datamentioning

confidence: 79%

Section: Orthodontic Datamentioning

confidence: 99%

Coverage, reporting degree and design of the Swedish quality registry for patients born with cleft lip and/or palate

Klintö

Karsten

Marcusson

et al. 2020

BMC Health Serv Res

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“…The Swedish Quality Registry for CLP started as a collaboration between six Swedish CLP centres in 1999 (Pegelow et al, 2020). The orthodontists in the teams agreed to record the dental occlusions and treatment outcomes in the registry at 5, 10, 16, and 19 years of age.…”

Section: The Established Registriesmentioning

confidence: 99%

Untitled

2019

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Cleft lip and palate (CLP) is one of the most prevalent birth defects. CLP can have a profound physical impact on the child and a psychological impact on both the parents and child. The systemic collection and audit of data on CLP has traditionally been an integral part of comprehensive cleft care. This requires the development of a national cleft registry. This article describes the current orthodontic cleft care, the benefits of a registry and assesses the challenges faced in developing a national cleft registry in Malaysia from an orthodontic point of view.

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