Temporal Trends in the Completeness of Epidemiological Variables in a Hospital-Based Cancer Registry of a Pediatric Oncology Center in Brazil

Temporal Trends in the Completeness of Epidemiological Variables in a Hospital-Based Cancer Registry of a Pediatric Oncology Center in Brazil

1. Introduction

Pediatric tumors account for 1 to 4% of all malignant tumors in most populations [1,2,3], with the proportion varying according to the population’s age distribution [3]. In low- and middle-income countries (LMICs), where the child population reaches about 50%, this proportion reaches between 3 and 10% of all neoplasms [4]. Pediatric cancer patients living in high-income countries (HICs) achieve very good outcomes, with approximately 80% surviving 5 years after diagnosis [5]. However, LMICs cover more than 90% of children and adolescents who are at risk of developing childhood cancer annually [4,6].
According to estimates for the triennium 2023–2025, Brazil is expected to have 7930 new cancer cases each year, which corresponds to an estimated risk of 134.81 per million children and adolescents (between 0 and 19 years old), and of these there is an estimated risk of 140.50 new cases per million male children and 128.87 per million female children [7].
Despite being regarded as one of the most significant achievements in modern science, the progress in the prognosis of children with cancer witnessed in HICs in the past few decades has not been replicated in most LMICs, where available data indicate that a much lower number of children survive [8,9,10,11]. Many of these countries lack accurate information on the incidence and outcomes of pediatric neoplasms. This is partly due to the absence of cancer registration and vital registration systems required to document and report data [3,11,12].
Hospital-based cancer registries (HbCRs) have been developed in several LMICs, particularly in Latin America, as well as Asia. In summary, they are very useful for multiple purposes such as providing information about the diagnosis and treatment of patients related to the specific tumor characteristics, as well as clinical outcomes [13].
In Brazil, the HbCR was established by the Brazilian National Cancer Institute (INCA) to enable the standardization of technical training and improve hospital management for cancer patients at the national level. The HbCR collects data on malignant neoplasm cases diagnosed as well as treated at a specific hospital [14] and serves as a valuable source of information for clinical and epidemiological research, including the evaluation of treatment outcomes and patient survival analysis using therapeutic protocols. Several studies have utilized HbCR data to improve patient care and inform cancer control policies [9,10,13,15,16,17,18,19].

The present study aimed to examine the temporal trends in the completeness of epidemiological variables from a HbCR of a reference center for pediatric oncology in Brazil.

4. Discussion

Our results showed that several variables for understanding the health–disease process were classified as ‘excellent’; for example, sex and date of first diagnosis. However, some registries presented a high incompleteness rate for relevant variables, such as level of education, history of tobacco and alcohol consumption, TNM, and family history. These findings are in line with a study that examined the quality of information, verifying the completeness and consistency of the HbCR in a state located in the Central-West Region of Brazil, and have also found that TNM and schooling were among the most incomplete data variables [27].
The variable “sex” was classified as excellent over the whole time period of the study. It is important that this variable presents a high completeness rate, because gender predicts the incidence of several types of pediatric cancers [28]. The low interpretational subjectivity required to record this information may explain the results of this finding. Similar results were found in other studies with excellent completeness for the sex variable [27,29].
The completeness of the race/color variable worsened over time, with an increasing tendency towards non-completion. However, this variable was regularly recorded in the last two years of the study. It is important to note that the study of race/color goes beyond just biological differences and represents a complex variable that encompasses economic as well as cultural meanings, highlighting inequities in access to cancer care. These results are consistent with other research carried out in Brazil [19,27,29,30,31]. It is worth noting that incomplete and incorrect registration of this variable presents a challenge in accurately assessing the actual need for health promotion and disease prevention programs in vulnerable populations [31]. Additionally, the race/color variable is relevant in expanding discussions on social inclusion and social, individual, and political programmatic vulnerability [19,32].
Indeed, the race/color variable represents a set of sociocultural exposures that demonstrate the existing social inequity [31]. A retrospective cohort study conducted at a women’s health reference center in a public hospital in the State of São Paulo evaluated the completeness of variables in elderly women diagnosed with breast cancer. The study found a trend of whitening and whiteness, with a worsening completeness of the race/color variable, and an increasing trend of non-completeness of the data [31]. In contrast, the present study found that completeness for the same variable increased from 2010 to 2016.
Another study highlighted the challenges in collecting and interpreting data related to the race/color variable. The authors found that data collection was inadequate due to limitations in the classifications of newborns and deaths, as the ideal and recommended method for classification is through self-reporting. Incompleteness data for this variable were classified as stable in Espírito Santo and decreasing in the Southeast Region and the rest of Brazil [29].
In this study, we found that the variable ‘level of education’ had a poor score in most of the years investigated, which is consistent with other studies conducted in the same state, other HbCRs [19], and other Brazilian regions [27,30,31]. This variable is of great importance in determining a patient’s prognosis, and improving its completeness is of clinical and epidemiological relevance [19,33]. Additionally, studying the level of education allows us to indicate a patient’s socioeconomic situation, when accurate information on income is not available [19,33]. Furthermore, low levels of education may also be associated with late diagnosis, indicating that education level can hinder access to early diagnosis, treatment, and prognosis [27,31]. Data regarding education are not important only due to the late notification of cancer by the oncologist. Its relevance also extends to the subsequent implications of the absence of oncological knowledge. For instance, survivors of childhood cancer face a high risk of cardio-oncological complications in the future and, given this, it is imperative to carry out regular exams in adulthood [34].
Alcohol and tobacco consumption variables are challenging to fill in accurately, particularly when it comes to cancer in children and adolescents, as their measurement is subjective. As a result, there is a risk of bias in quantifying the use of these substances, or the field may be left incomplete [35]. The trend test for patterns of alcohol consumption and tobacco use did not reveal statistical significance; however, similarities are identified between both variables. During this study, there was no contact with the professionals responsible for records at the reference hospital in order to verify the reason for the lack of data completion. However, it is assumed that, given the nature of the population studied, composed of children and adolescents, the lack of information suggests that the consumption of these substances did not occur. A strategy to mitigate the incompleteness of this variable might be to adopt the marking ‘not applicable’ when, in fact, there was no consumption. Even in the adult population of the same state, the alcoholism variable presents a poor filling pattern, with up to 50.1% of data missing. For the smoking variable, the percentages of incompleteness also presented a poor classification in almost the entire period analyzed [19].
A recent study, which aimed to investigate temporal trends and factors associated with cancers diagnosed at stage IV in Brazil over two decades, showed that there was a high frequency of cancer diagnosed at stage IV and an increasing trend in different cancer types, which were associated with distinct sociodemographic, lifestyle, and clinical factors [36].
Very poor completeness was verified for the TNM variable. Studies in Brazil [19,33] found a “poor” degree of completeness when analyzing the HbCR data. Conversely, excellent completeness was observed for the TNM variable in another state [31]. TNM is used worldwide, and it is extremely important to know about the disease [19,27,37,38]. The classification of malignant tumors (TNM) represents the main tumor classification system; thus, it is an essential variable in primary studies using databases. Therefore, knowing the staging is essential, making it possible to differentiate the tumor’s dimensions at diagnosis [27]. Additionally, knowing the tumor and its staging contributes to therapeutic planning and effective treatment. A recent Brazilian study reported an “excellent” and “good” rating in the database for the countryside of the state of Mato Grosso, Brazil, and a “poor” and “very poor” completeness in the database for the capital Cuiabá. In the present study, it was found that the percentage of completeness for the TNM variable decreased from 2010 to 2016 [27].
Because of their heterogeneity and rarity, childhood cancers already represent a particular data management challenge for registries. Hence, staging systems should be able to be applied by registry staff using available records and should be sufficiently detailed for the analysis and interpretation of population cancer data, while respecting the different capacities and resources of different registries [17]. Because most pediatric cancers have specific staging systems, general adult stage classifications are not appropriate.
Therefore, it is recommended that the tiered, pediatric-specific staging systems endorsed by the Toronto Pediatric Cancer Stage guidelines be adopted for pediatric cases by cancer registries in countries of all income levels and integrated into registry manuals. In addition, tiered staging systems should be endorsed, with more detailed systems for well-resourced cancer registries with appropriate data access, and less detailed systems for registries with limited resources and access. Lower-tier systems should be based on collapsing higher-tier system categories to preserve comparability across registries [17]. A family history (FH) of cancer is a hallmark for early detection of cancer [30,39,40,41]. Nevertheless, the FH variable in our study was classified as very poor in almost all periods studied. Family history is crucial to differentiate between cases of sporadic malignant neoplasms, those with family grouping, and those that are hereditary [38,39,40]. Identifying family members at risk for hereditary neoplastic syndromes is pivotal for preventive care, reducing cancer-related morbimortality and costs for health systems [42,43,44]. In comparison with another previous study from the same Brazilian state, but in the adult population, the family history of cancer variable also obtained a very poor classification in all years, with percentages of non-completion between 62.5% and 70.3%; the year with the highest amount of missing data was 2015, with 5980 (70.3%) [19].
Indeed, political commitments to report on cancer and to achieve better health outcomes in cancer care have accentuated the need for high-quality data, mainly taking into account the personalized care expected in the current precision medicine era [45,46]. However, only one in three countries has high-quality incidence data worldwide, and one in four has high-quality mortality statistics [11,45,46]. For instance, for childhood cancer at the age of 0–19 years, the acuity of the problem is particularly pronounced [45].

The present study has some limitations. Firstly, the study was conducted at a single pediatric oncology hospital in a state in the Southeast Region of Brazil, which may limit the generalizability of the findings to other settings. Secondly, all the analyses reported are based upon secondary cancer data, and, as we know, inherent to all health information systems is the issue of missing and incomplete data. Thirdly, while the hospital-based cancer registry (HbCR) provides valuable information about the quality of care provided, it may not reflect the entire regional or national cancer epidemiology. Nonetheless, this research addresses a topic of increasing epidemiological relevance and might help elucidate gaps in HbCRs across the world, mainly in middle-income-countries. Finally, the present study draws attention to the importance and relevance of complete and reliable data in HbCRs. When data follows the principles of accuracy, completeness, conformity, punctuality, consistency, and integrity, some actions become even more efficient; for example, accurate and reliable decision-making by healthcare professionals and clinicians can be guaranteed by the good management of data quality.

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