ICD‐10 impact on ascertainment and accuracy of oral cleft cases as recorded by the Brazilian national live birth information system

Abstract

We compared Brazilian oral cleft (OC) frequencies between the population-based Brazilian System of Live Birth (SINASC) and the hospital-based Latin American Collaborative Study of Congenital Malformations (ECLAMC), trying to understand the paucity of cleft of lip and palate (CLP) in the first system. SINASC uses the International Classification of Disease version 10 (ICD-10) for congenital defects coding, ECLAMC uses ICD-8 with modifications. In SINASC, the CLP frequency was 1.7 per 10,000 (95% confidence limits 1.7-1.8), cleft lip (CL) 1.6 (1.5-1.7), and cleft palate (CP) 2.0 (1.9-2.1). In ECLAMC, the CLP frequency was 10.4 per 10,000 (9.0-12.1), CL 5.5 (4.5-6.7), and CP 4.4. (4.5-6.7). In SINASC, only 33% of the oral clefts were CLP, versus 51% in ECLAMC. Part of this discrepancy may have been due to the relative excess of CP and CL cases. Although congenital defect frequencies are usually lower in population than in hospital-based registries, differences in the proportion of the main OC categories are not expected and are probably due to ICD-10 coding issues, such as lumping of unilateral CL and CL without other specifications. ICD-10 codes, whose deficiency for oral clefts is fully explained in the literature, lack modifiers for severity, or clinical subtypes. This paper shows the practical aspect of the ICD-10 system deficiency in capturing cleft lip and palate (CLP) subtypes, as demonstrated in SINASC covering three million births per year. Such errors are expected to occur in any registry that uses the ICD-10 coding system, and must be adjusted, given its relevance worldwide.

Administrative Data Linkage in Brazil: Potentials for Health Technology Assessment

“…SINASC includes information on place of delivery (hospital or home), the mother who gave birth (including name, age, place of residence, marital status, education, number of children, and number of previous live and still births), the pregnancy (number of prenatal appointments, length of gestation, type of pregnancy: singleton or twin, type of delivery); and the newborn (gestational age, birth weight, sex, ethnicity, the presence and type of birth anomalies for live and stillbirths, and 1- and 5-min APGAR score for live births) (da Saúde, 2011). SINASC uses the International Classification of Disease Version 10 (ICD-10) for coding congenital defects (do Nascimento et al, 2018).…”

“…In addition, under-registration of births is still common in some regions of the country and inconsistency of records in variables, such as mother’s education, race, and number of prior childbirths, is still high in North and Northeast regions (Oliveira et al, 2015; Hunter and Sugiyama, 2018). SINASC, in combination with SIM (the Mortality Information System) and SIH (the Hospital Information System), has been used to study the impacts, burden, and/patterns of diseases (Paixao et al, 2018), pregnancy-related hospitalizations (Moura et al, 2018), impact of socio-economic inequalities on prenatal consultation (Mallmann et al, 2018), factors affecting neonatal mortality (Kropiwiec et al, 2017; Paixao et al, 2018), the use of ICD-10 coding system on congenital disease ascertainment (do Nascimento et al, 2018). SINASC and SIM/SIH also provide data that are used as parameters in the HTA studies.…”

The Latin American network for congenital malformation surveillance: ReLAMC

“…Several ReLAMC registries presented prevalence rates for cleft lip (Q36) and cleft lip and palate (Q37) that suggested under registration or coding problems. Oral cleft information such as the proportion of each type of cleft could be used when establishing data quality indicators for congenital anomaly registries (Groisman et al, 2019), and indicated several coding problems in the live birth part of the Brazilian registry (Nascimento, Castilla, Dutra, & Orioli, 2018). The ICD-10 classification of oral clefts could induce oral cleft coding errors in those registries that use the ICD-10 classification without any extension such as the BPA (Nascimento et al, 2018).…”

“…Oral cleft information such as the proportion of each type of cleft could be used when establishing data quality indicators for congenital anomaly registries (Groisman et al, 2019), and indicated several coding problems in the live birth part of the Brazilian registry (Nascimento, Castilla, Dutra, & Orioli, 2018). The ICD-10 classification of oral clefts could induce oral cleft coding errors in those registries that use the ICD-10 classification without any extension such as the BPA (Nascimento et al, 2018). The ICD-10 BPA codes Q36.90 and Q36.99 allow the separation of unilateral cleft lip from a unspecified cleft lip, and the Q37.99 code allows the registration of an unspecified cleft lip with cleft palate case.…”

Projection Word Embedding Model With Hybrid Sampling Training for Classifying ICD-10-CM Codes: Longitudinal Observational Study

“…Disease coding is a common practical data structuralization method that is critical in many fields such as disease surveillance [3], health services management [4], and clinical research [5]. The coding quality can still be improved, and computer-aided coding systems have been considered to increase the accuracy [6,7]. Numerous models have been implemented in recent years [8-11], but they were considered inapplicable [2].…”