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Coverage, reporting degree and design of the Swedish quality registry for patients born with cleft lip and/or palate
Lund Univ, Dept Clin Sci Malmo, Malmo, Sweden.;Skane Univ Hosp, Dept Otorhinolaryngol, Div Speech & Language Pathol, Jan Waldenstroms Gata 18, S-20502 Malmo, Sweden..ORCID iD: 0000-0002-7044-9386
Karolinska Inst, Dept Dent Med, Div Orthodont, Stockholm, Sweden.;Karolinska Inst, Stockholm Craniofacial Team, Stockholm, Sweden.;Karolinska Univ Hosp, Stockholm Craniofacial Team, Stockholm, Sweden..
Linkoping Univ, Maxillofacial Unit, Linkoping, Sweden.;Linkoping Univ, Dept Clin & Expt Med, Linkoping, Sweden..
Sahlgrens Univ Hosp, Dept Plast Surg, Gothenburg, Sweden..
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2020 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 20, no 1, article id 528Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2020. Vol. 20, no 1, article id 528
Keywords [en]
Cleft lip, Cleft palate, Registry, Surgery, Orthodontics, Speech
National Category
Dentistry
Identifiers
URN: urn:nbn:se:uu:diva-418956DOI: 10.1186/s12913-020-05389-xISI: 000543100100001PubMedID: 32522189OAI: oai:DiVA.org:uu-418956DiVA, id: diva2:1465249
Available from: 2020-09-09 Created: 2020-09-09 Last updated: 2022-09-15Bibliographically approved

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Hakelius, MalinOkhiria, Åsa

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