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

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.

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

“…For analysis, data were retrieved from the CLP registry via Record Centre South, Lund, Sweden. All Swedish CLP centres are connected to the CLP registry and the coverage degree is above 90% [ 1 ].…”

“…At the first visit/patient contact the following data are registered: born in Sweden or not, cleft type (ICD-10 diagnosis [ 24 ]) and additional deformities and/or syndromes. For further information, see Klintö et al [ 1 ]. A manual review of the baseline data took place every year and before analysis, to ensure that data were correct.…”

“…These children receive treatment by a multidisciplinary team at one of six regional cleft lip and palate (CLP) centres, all connected to the Swedish quality registry for patients born with CL/P (CLP registry). The CLP registry was initiated to enable the continuous evaluation of treatment results at the Swedish CLP centres, with the objective to promote quality control, research and improvements in treatment, via the comparison of long-term results [ 1 ].…”

“…The CRANE database [ 15 ] in the United Kingdom (England, Wales, Northern Ireland) has published several studies, of which one focused on maxillary growth and speech in 5-year-olds with UCLP [ 16 ]. Although the speech assessment procedures in the Swedish CLP registry [ 1 ] are based on the same principles for speech analysis [ 17 , 18 ] as those in the CRANE database [ 19 ], the speech outcome measures differ and are not comparable. The Norwegian CLP registry uses the same speech outcome measures [ 20 ] as the Swedish CLP registry [ 1 ] to a high degree.…”

“…Although the speech assessment procedures in the Swedish CLP registry [ 1 ] are based on the same principles for speech analysis [ 17 , 18 ] as those in the CRANE database [ 19 ], the speech outcome measures differ and are not comparable. The Norwegian CLP registry uses the same speech outcome measures [ 20 ] as the Swedish CLP registry [ 1 ] to a high degree. In the future, it may be possible to compare speech data between the Swedish and Norwegian CLP registries.…”