Causes of Death and Associated Conditions (Codac) - A Utilitarian Approach to the Classification of Perinatal Deaths

J Frederik Frøen; Halit Pinar; Vicki Flenady; Safiah Bahrin; Adrian Charles; Lawrence Chauke; Katie Day; Charles W Duke; Fabio Facchinetti; Ruth C Fretts; Glenn Gardener; Kristen Gilshenan; Sanne J Gordijn; Adrienne Gordon; Grace Guyon; Catherine Harrison; Rachel Koshy; Robert C Pattinson; Karin Petersson; Laurie Russell; Eli Saastad; Gordon CS Smith; Rozbeh Torabi

Disclosures

BMC Womens Health 

In This Article

Abstract

A carefully classified dataset of perinatal mortality will retain the most significant information on the causes of death. Such information is needed for health care policy development, surveillance and international comparisons, clinical services and research. For comparability purposes, we propose a classification system that could serve all these needs, and be applicable in both developing and developed countries. It is developed to adhere to basic concepts of underlying cause in the International Classification of Diseases (ICD), although gaps in ICD prevent classification of perinatal deaths solely on existing ICD codes.
We tested the Causes of Death and Associated Conditions (Codac) classification for perinatal deaths in seven populations, including two developing country settings. We identified areas of potential improvements in the ability to retain existing information, ease of use and inter-rater agreement. After revisions to address these issues we propose Version II of Codac with detailed coding instructions.
The ten main categories of Codac consist of three key contributors to global perinatal mortality (intrapartum events, infections and congenital anomalies), two crucial aspects of perinatal mortality (unknown causes of death and termination of pregnancy), a clear distinction of conditions relevant only to the neonatal period and the remaining conditions are arranged in the four anatomical compartments (fetal, cord, placental and maternal).
For more detail there are 94 subcategories, further specified in 577 categories in the full version. Codac is designed to accommodate both the main cause of death as well as two associated conditions. We suggest reporting not only the main cause of death, but also the associated relevant conditions so that scenarios of combined conditions and events are captured.
The appropriately applied Codac system promises to better manage information on causes of perinatal deaths, the conditions associated with them, and the most common clinical scenarios for future study and comparisons.

Background

A Classification and Its Purpose

Classification is described as a passive construct systematically arranging similar entities with established criteria or differing characteristics.[1,2] The purpose of classification, however, is information management: including information capture, storage, and retrieval. Classification of perinatal deaths is thus primarily the systematic arrangement of deaths in categories based on information known about them to aid in the process of information management.

This information is vital for many purposes, including health care policy development, surveillance and international comparisons, clinical services and research, and it is crucial that a classification is useful for all these aims. Incompatible classifications for pathologists, obstetricians and researchers, hinder the efforts to improve the value and quality of perinatal pathology services, obstetric health care and research. All need answers as to why deaths occur, but the level of detail required differs. While 98% of perinatal deaths occur in developing countries,[3,4] most research on prevention takes place in developed countries. To avoid widening the knowledge gap, a classification should be useful for all populations. In a global setting with almost 50 million unregistered live newborns and even less reporting of stillbirths, there is currently insufficient data collected on causes of death either to guide stillbirth prevention programs or to provide accountability and evidence of effect of such programs.[5] There is a need to scale up efforts to collect data on causes of death in stillbirths in developing countries. No classification system compensates for missing data and misclassifications biased towards the most easily observable conditions that may not be related to the cause of death.

A viable classification system of perinatal deaths that can be applied to existing health information systems should incorporate, or at least relate conceptually, to the International Classification of Diseases (ICD) system, serving as an information management tool for registered conditions. Identifying the underlying cause is the key concept in the cause of death (COD) in ICD,[6] and a classification system must accomplish this goal as well as retain information on non-lethal conditions representing significant associated conditions. Yet, in classifying perinatal deaths, in particular stillbirths, the ICD has shortcomings. By not consistently identifying the fetus (with its cord, placenta and membranes) as an individual entity to assign codes to, there are many missing codes e.g. for the many significant placental lesions. Thus, a comprehensive classification system cannot be based on converting ICD codes alone, but must supplement ICD and serve to inform steps towards the expected revision of ICD in 2013.

The value of a classification system is not based solely on its simplicity, stringently defined and segregated categories, or inter-rater agreement and reproducibility alone. This would favor classifications that include as little information as possible. A utilitarian approach to classification would identify most clinically distinct categories of deaths, providing simplicity and reproducibility in its basic categories yet retaining important detail by extensive subcategorization or layers.

Selecting the Right Information

A classification system will most consistently provide the results it was designed for, and most systems are designed to identify a few specific groups of interest. Accordingly, information managed by typical perinatal mortality classifications is often very restricted. As reviewed elsewhere,[7] classifications broadly manage information in two partly overlapping groups: Some include categories best suited for epidemiology and health care planning purposes, including risk factors such as small for gestational age (SGA)[8] and twin pregnancy,[9] without (or with questionable) claims to represent COD. Others aspire to manage information on COD, often focusing on specific clinical groups or categories related to biomedical research questions.[10,11,12] There is also diversity in the preferred source of information; encompassing to various degrees clinical obstetric diagnoses, pathology reports, full medical charts, or simply routinely provided ICD-codes. In testing contemporary classifications of stillbirths, Flenady et al found inconsistent approaches to the main categories of stillbirth, making datasets and classifications difficult to compare.[7] These problems are especially noteworthy regarding the classification of placental causes of death.[13] But despite apparently conflicting priorities, all categories are easily combined into one utilitarian system managing the most significant information irrespective of source or intended use.

In most clinical and research settings, in ICD, in death certificates and cause of death registries the COD is the main focus, based on the concept of underlying causal conditions. Associated conditions as, for example, SGA and twin pregnancy may be less valued. When relevant, these can often be deduced from the specified COD, but not vice versa. E.g. SGA engulfs just about every lethal chronic condition in fetal life, and when twinning is truly part of the causation, it will be captured by COD as entangled cords, twin-to-twin transfusion, etc.

The best understanding of COD is provided by the well educated health care micro-system surrounding the woman, which may include her clinical care providers, microbiologist, geneticist and perinatal pathologist. A multidisciplinary audit group reviewing deaths at her birthing institution remains the "Gold Standard" for classification of perinatal deaths, and the backbone for improvement of care through feedback.[14] They collect all relevant information for classification and establish diagnoses, and have the narrative - the sequence and relative significance of events - to understanding why the death occurred. A classification should preserve and manage information on both individual conditions and their relative importance from the narrative.

Availability and appropriateness of care is sometimes an essential part of the narrative, and this information is needed to guide health care policies for the prevention of deaths. To preserve information about an intrapartum death, "unavailable obstetric care" may be more important than "malpresentation" in developing countries, but sub-optimal care is also frequently reported in perinatal deaths in developed countries,[15] and this must be understood and such deaths prevented.

The Continuum of Perinatal Loss

The numerator in perinatal mortality classification is the number of individual fetuses entering the perinatal period alive, and dying before it ends. The perinatal period is defined (see Table 4 ) by the WHO as being ≥ 500 grams, and only secondarily ≥ 22 weeks,[6] as gestational age is often unknown in developing countries. Yet, in practice, gestational age has been used interchangeably with birthweight in many settings, and most legal implications are linked to gestational age.[16,17,18] Gestation at birth is commonly used, but should be corrected if time of intrauterine death is known. Valid arguments can be made for other limits of gestation, but for uniform reporting the limit at 500 grams/22 weeks is internationally established, and the WHO also recommend reporting data for international comparisons with the limits 1000 grams/28 weeks/35 cm. Nonetheless, communities who use lower limits should register and classify all their cases and causes of death accordingly, and many would favor also registering late neonatal deaths until the 28th postnatal day (rather than the 7th postnatal day) to capture more deaths with origins in perinatal events.

It should be noted that mean birthweight of stillbirths is significantly below 500 g at 22 completed weeks. Communities using the birthweight criterion will underestimate their stillbirth rate compared with regions using gestational age. In a population-based material with close to universal ultrasound-dating,[19] 10.4% of stillbirths (> 22 weeks) would be unreported if the birthweight criterion was used.

In addition to variations in definitions, incomplete registrations, and differences in registration preferences and cultures, two classification issues hamper comparisons of stillbirth rates: "truncated" data due to terminations of pregnancy, and the "transfers" from stillbirths to neonatal deaths due to medical interventions (e.g. early delivery for hypertensive disorders). To enable interpretation of cause-specific perinatal death rates, information on both terminations and neonatal deaths must be managed together with stillbirths.

Neonatal deaths are often reported at any gestation as long as signs of life are seen. Yet, for consistency, the numerator should remain the same, and neonatal deaths only reported for the cases who have entered the perinatal period alive (500 g/22 weeks corrected post-natal age or weight/length at time of death) and thus qualifying as perinatal deaths.

No criteria can capture terminations with equal consistency. They will cause variations in perinatal mortality reports, some jurisdictions having mandatory registration of terminations among perinatal deaths.[20] When using the same criteria to register both terminations and spontaneous deaths, higher termination rates yields lower anomaly mortality rates[20] (many terminations prior to 22 weeks, not registered, would die perinatally if continued), while extending registrations to include lower gestational age criteria for terminations than for spontaneous deaths add the opposite effect (anomalies may cause death prior to perinatal life, and should not be included). With no perfect solution, the inevitable compromise should reflect the purpose of classification; capturing information on causal contributors to perinatal mortality.

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