Evaluation of completeness, consistency and non-duplication of leprosy notification data on the Notifiable Health Conditions Information System, João Pessoa, Paraíba, Brazil: a descriptive study, 2001-2019

Evaluación de la completitud, consistencia y no duplicidad de notificación de lepra en el Sistema de Información e Enfermidades de Declaración Obligatoria, en João Pessoa, Paraíba: estudio descriptivo, 2001-2019

Micheline da Silveira Mendes André Luiz Sá de Oliveira Haiana Charifker Schindler About the authors

Abstract

Objective:

to analyze the completeness, consistency and non-duplication of leprosy notification data in João Pessoa, Paraíba, Brazil, 2001-2019.

Methods:

this was a descriptive study, conducted with data from the Notifiable Health Conditions Information System, which checked for “duplication” (acceptable: < 5%), “completeness” (excellent = incompleteness ≤ 5%) and “consistency” (excellent: ≥ 90.0%), based on the proportion of complete and consistent fields.

Results:

the sample consisted of 2,410 notifications. Duplication was acceptable (0.3%). The completeness of the “bacilloscopy”, “affected nerves”, “examined contacts” and “reactive episode” fields was very poor (more than 50% incomplete). Consistency between the “operational classification” and “initial treatment regimen” fields was excellent (99.6%), while consistency between “operational classification” and “clinical form” was low (50.7%).

Conclusion:

although duplication was acceptable, poor completeness of diagnosis and follow-up fields hinders epidemiological analysis, recognition of the status of the disease and adoption of measures to control it.

Keywords:
Leprosy; Health Information Systems; Public Health Surveillance; Epidemiology, Descriptive; Epidemiological Monitoring

Resumen

Objetivo:

analizar la completitud, consistencia y no duplicidad de los datos de notificación de lepra en João Pessoa, Paraíba, 2001 - 2019.

Métodos:

estudio descriptivo, realizado con datos del Sistema de Información de Enfermedades de Declaración Obligatoria, que verificó “duplicidad” (aceptable: < 5%). “completitud” (grado excelente: incompletitud ≤ 5%) y “consistencia” (excelente: ≥ 90,0%), utilizando la proporción de campos completos y coherentes.

Resultados:

se obtuvo una muestra de 2.410 notificaciones. La duplicidad se consideró aceptable (0,3%). La completitud de los campos “baciloscopía”, “nervios afectados”, “contactos examinados” y “episodio reaccional” fue muy pobre (más del 50% incompleta). La consistencia entre los campos “clasificación operativa” y “régimen terapéutico inicial” fue excelente (99,6%), mientras que “clasificación operativa” y “forma clínica” fue baja (50,7%).

Conclusión:

aunque la duplicidad es aceptable, la completitud de los campos de diagnóstico y seguimiento fue deficiente, lo que dificulta el análisis epidemiológico, el reconocimiento de la situación de la enfermedad y la adopción de medidas de control de la enfermedad.

Palabras clave:
Lepra; Vigilancia en Salud Pública; Sistemas de Información en Salud; Epidemiología Descriptiva; Monitoreo Epidemiológico

INTRODUCTION

Leprosy is an infectious disease, known for its magnitude and transcendence, caused by the Mycobacterium leprae bacterium, or Hansen’s bacillus, which affects the skin and peripheral nerves, and can lead to physical disabilities and deformities.11. Nascimento DS, Ramos Junior AN, Araújo OD, Macêdo SF, Silva GV, Lopes WMPS, et al. Limitação de atividade e restrição à participação social em pessoas com hanseníase: análise transversal da magnitude e fatores associados em município hiperendêmico do Piauí, 2001 a 2014. Epidemiol Serv Saude 2020;29(3):e2019543. doi:10.5123/S1679-49742020000300012
https://doi.org/10.5123/S1679-4974202000...

In 1988, the World Health Organization (WHO) recommended that leprosy be classified based on skin lesions, for operational purposes. Since then, individuals with up to five skin lesions are classified as paucibacillary cases, while those with more than five skin lesions are classified as multibacillary cases.22. Chen KH, Lin CY, Su SB, Chen KT. Leprosy: a review of epidemiology, clinical diagnosis, and management. J Trop Med. 2022;2022:8652062. doi: 10.1155/2022/8652062
https://doi.org/10.1155/2022/8652062...

Leprosy is part of the group of neglected tropical diseases that are more endemic in regions where the population faces unfavorable living conditions, especially in underdeveloped countries.11. Nascimento DS, Ramos Junior AN, Araújo OD, Macêdo SF, Silva GV, Lopes WMPS, et al. Limitação de atividade e restrição à participação social em pessoas com hanseníase: análise transversal da magnitude e fatores associados em município hiperendêmico do Piauí, 2001 a 2014. Epidemiol Serv Saude 2020;29(3):e2019543. doi:10.5123/S1679-49742020000300012
https://doi.org/10.5123/S1679-4974202000...

In this context, Brazil, India and Indonesia accounted for 74% of new leprosy cases worldwide in 2020.33. World Health Organization. Weekly epidemiological record. Geneva: World Health Organization; 2021 [cited 2021 Oct 30]. Available from em: Available from em: https://apps.who.int/iris/bitstream/handle/10665/345048/WER9636-eng-fre.pdf
https://apps.who.int/iris/bitstream/hand...
In that year, Brazil notified 17,979 new cases, representing a detection rate of 8.5 per 100,000 inhabitants, this being an indicator of average endemicity according to the criteria adopted by the Brazilian Ministry of Health.44. Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Hanseníase 2022. Boletim Epidemiológico [Internet]. 2022 [citado 2023 Jan 7];(Número especial):1-54. Disponível em: Disponível em: https://www.gov.br/saude/pt-br/centrais-de-conteudo/publicacoes/boletins/epidemiologicos/especiais/2022/boletim-epidemiologico-de-hanseniase-_-25-01-2022.pdf
https://www.gov.br/saude/pt-br/centrais-...
Specifically, the state of Paraíba and its capital, João Pessoa, also had average endemicity, with detection rates of 9.9 per 100,000 inhab. and 8.9 per 100,000 inhab. respectively.55. Ministério da Saúde (BR). Departamento de Doenças de Condições Crônicas e Infecções Sexualmente Transmissíveis. Indicadores e dados básicos de hanseníase nos municípios brasileiros [Internet]. Brasília: Ministério da Saúde; 2021 [citado 2021 Out 30]. Disponível em: Disponível em: http://indicadoreshanseniase.aids.gov.br/
http://indicadoreshanseniase.aids.gov.br...

Leprosy is on the national list of compulsorily notifiable health conditions. Notifications are stored and managed on the Notifiable Health Conditions Information System (SINAN), which also enables recording of household contacts examined and case follow-up up until case closure. The SINAN data are used to calculate indicators that assist with gaining knowledge about the epidemiological behavior of the disease and with operationalization of care provided to infected people.66. Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Hanseníase 2022. Boletim Epidemiológico [Internet]. 2021 [citado 2021 Out 30];(Número especial):1-56.. Disponível em: Disponível em: http://www.aids.gov.br/pt-br/pub/2021/boletim-epidemiologico-hanseniase-2021
http://www.aids.gov.br/pt-br/pub/2021/bo...
),(77. Marques CA, Siqueira MM, Portugal FB. Avaliação da não completude das notificações compulsórias de dengue registradas por município de pequeno porte no Brasil. Cien Saude Colet. 2020;25(3):891-900. doi: 10.1590/1413-81232020253.16162018
https://doi.org/10.1590/1413-81232020253...

According to the United States Centers for Disease Control and Prevention (US/CDC) Guidelines for Evaluating Disease Surveillance Systems, evaluation of public health surveillance systems should seek to achieve efficient use of time and resources. Data validity and integrity are analyzed based on the following evaluation attributes: completeness, consistency and non-duplication.88. Center for Disease Control and Prevention. Update guidelines for evaluating disease surveillance systems: recommendations from the guidelines working group MMWR [Internet]. Atlanta: Center for Disease Control and Prevention; 2001 [cited 2021 Dec 1];50:1-51. Available from: Available from: https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5013a1.htm
https://www.cdc.gov/mmwr/preview/mmwrhtm...

Analyzing notification form data is fundamental for epidemiological monitoring. This analysis takes place by identifying duplicated cases, form field completeness and consistency between the data relating to different notification variables.88. Center for Disease Control and Prevention. Update guidelines for evaluating disease surveillance systems: recommendations from the guidelines working group MMWR [Internet]. Atlanta: Center for Disease Control and Prevention; 2001 [cited 2021 Dec 1];50:1-51. Available from: Available from: https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5013a1.htm
https://www.cdc.gov/mmwr/preview/mmwrhtm...
),(99. Assis Neto JD, Ferrari DF, Milleri KC, Pereira SDS, Almada GL. Qualidade dos bancos de dados de doenças infectocontagiosas notificadas em Vila Velha, Espírito Santo, de 2007 a 2017. Rev Bras Pesq Saude. 2021;22(2):130-9. doi: 10.47456/rbps.v22i2.30266
https://doi.org/10.47456/rbps.v22i2.3026...
) Poor filling out of the notification form, with incomplete or inconsistent data, can lead to unreliable analyses and the respective results thereof.

Completeness is understood to be a good characteristic of records, taking into account the extent to which the variables are filled out, estimated based on the proportion of forms with correctly filled out fields/variables.1010. Andrade RPS. Completitude do sistema de informação sobre tuberculose no Município de Parnamirim/RN [dissertação]. Natal: Universidade Federal do Rio Grande do Norte, Centro de Ciências da Saúde; 2021.),(1111. Espírito Santo TB. Avaliação dos atributos de qualidade do sistema de informação Sinan influenza web [dissertação]. Florianópolis: Universidade Federal de Santa Catarina, Centro de Ciências da Saúde; 2019. Verification of the proportion of fields with missing information - recorded in the “unknown” category or simply not filled out (blank field) - is a way of measuring “completeness”, allowing the completeness and legitimacy of the records held on the system to be evaluated.1212. Instituto Brasileiro de Geografia e Estatística. Cidades@: João Pessoa [Internet]. Rio de Janeiro: Instituto Brasileiro de Geografia e Estatística; 2021 [citado 2021 Out 30]. Disponível em: Disponível em: https://cidades.ibge.gov.br/brasil/pb/joao-pessoa/pesquisa/23/25207?tipo=ranking
https://cidades.ibge.gov.br/brasil/pb/jo...
) Implementing a rigorous evaluation routine helps to improve data quality and reliability, contributing to the control of diseases or health problems.77. Marques CA, Siqueira MM, Portugal FB. Avaliação da não completude das notificações compulsórias de dengue registradas por município de pequeno porte no Brasil. Cien Saude Colet. 2020;25(3):891-900. doi: 10.1590/1413-81232020253.16162018
https://doi.org/10.1590/1413-81232020253...
),(88. Center for Disease Control and Prevention. Update guidelines for evaluating disease surveillance systems: recommendations from the guidelines working group MMWR [Internet]. Atlanta: Center for Disease Control and Prevention; 2001 [cited 2021 Dec 1];50:1-51. Available from: Available from: https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5013a1.htm
https://www.cdc.gov/mmwr/preview/mmwrhtm...

In the case of leprosy, there are few publications focusing on the evaluation of the notified leprosy data records held on the SINAN, despite its undeniable importance for epidemiological surveillance actions. The present study aimed to analyze duplication, completeness and consistency of leprosy notification records in the municipality of João Pessoa, state of Paraíba, Brazil, from 2001 to 2019.

METHODS

This was a descriptive time series study, with secondary data obtained from notifications of leprosy cases held on the SINAN, in João Pessoa, between January 1, 2001 and December 31, 2019.

João Pessoa, capital of the state of Paraíba, is located in the Northeast region of Brazil. In 2021, its population was estimated at 825,796 inhabitants, with an urbanization rate of 99.6% and a municipal human development index considered high: 0.763.1313. Ministério da Saúde (BR). Cobertura da atenção básica. Brasília: Ministério da Saúde; 2021. [citado 2021 Out 30]. Disponível em: Disponível em: https://egestorab.saude.gov.br/paginas/acessoPublico/relatorios/relHistoricoCoberturaAB.xhtml
https://egestorab.saude.gov.br/paginas/a...
The municipal public health care service in João Pessoa carries out diagnosis and treatment of leprosy in its primary health care facilities, comprising 16 primary health care centers and 201 family health teams, as well as the Hospital Universitário Lauro Wanderley outpatient service, and an outpatient clinic specialized in the leprosy at the Hospital de Doenças Infectocontagiosas Dr. Clementino Fraga, which is a tertiary care referral service for the state of Paraíba.1414. Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Departamento de Doenças de Condições Crônicas e Infecções Sexualmente Transmissíveis. Roteiro para uso do Sinan Net Hanseníase e Manual para tabulação dos indicadores de hanseníase [Internet]. Brasília: Ministério da Saúde; 2022 [citado 2023 Jan 7]. Disponível em: Disponível em: http://bvsms.saude.gov.br/bvs/publicacoes/roteiro_uso_sinan_net_hanseniase.pdf
http://bvsms.saude.gov.br/bvs/publicacoe...

Notification forms of leprosy cases monitored in primary care are input at the headquarters of the Municipal Health Department, while notification forms from the hospitals are input at the local epidemiological surveillance services and sent via internet in weekly consolidated electronic files, all of which go to comprise the Municipal Health Department SINAN database. Once this flow is concluded, the data can be monitored and analyzed, sent to the state database, finally resulting in the production and availability of total information which can be broken down by municipality.

This study included all cases of leprosy reported on the SINAN for people resident in João Pessoa between 2001 and 2019. We defined 2001 as the start of the study period because it is the first year with data available on the municipal database. 2019 was defined as the last year of the study period because it was the last year with closed cases at the time when we accessed the SINAN database (April 2021) at the João Pessoa Municipal Health Department.

The variables selected for the study were extracted from fields classified as mandatory (if data is missing for these fields it is impossible to input the form on the system), essential (not mandatory, although necessary for calculating epidemiological or operational indicators) or other (complementary), according to SINAN criteria.1515. Romero DE, Cunha CB. Avaliação da qualidade das variáveis socioeconômicas e demográficas dos óbitos de crianças menores de um ano registrados no Sistema de Informações sobre Mortalidade do Brasil (1996/2001). Cad Saude Publica. 2006;22:673-84. doi: 10.1590/S0102-311X2006000300022
https://doi.org/10.1590/S0102-311X200600...

For the purpose of analyzing completeness, the variables were divided into blocks according to the situation of case diagnosis and follow-up, as shown in Box 1.

Box 1
Variables selected for analysis of the completeness and consistency of leprosy notification records, João Pessoa, Paraíba, 2001-2019

Variables were considered to be incomplete when the field was not filled out (blank) or filled out as “unknown”. In the case of the “physical disability grade at diagnosis” and “bacilloscopy” variables, fields filled out with the options “not assessed” and “not performed”, respectively, were taken to be incomplete.

The adequacy of the records was verified according to the indicators for duplication, completeness and consistency proposed by Romero & Cunha1616. Abath MB, Lima MLLT, Lima PS, Silva MCM, Lima MLC. Avaliação da completitude, da consistência e da duplicidade de registros de violências do Sinan em Recife, Pernambuco, 2009-2012. Epidemiol Serv Saude. 2014;23:131-42. doi: 10.5123/S1679-49742014000100013
https://doi.org/10.5123/S1679-4974201400...
and Abath et al.1717. Vieira NF, Martínez-Riera JR, Lana FCF. Qualidade da atenção primária e os efeitos em indicadores de monitoramento da hanseníase. Rev Bras Enferm. 2020;73(4):e20190038. doi: 10.1590/0034-7167-2019-0038
https://doi.org/10.1590/0034-7167-2019-0...
Duplicates were identified by analyzing the records organized by date of notification, comparing the names of the individual-case and their mother, the date of birth of the case and the date they started treatment. Based on these comparisons, cases that showed divergence were submitted to a manual review of the respective notification forms, so as to prove whether or not they were duplicated. Duplicate cases were excluded from the study, as per the criteria defined by Abath et al., whereby duplication below 5.0% was considered acceptable.1717. Vieira NF, Martínez-Riera JR, Lana FCF. Qualidade da atenção primária e os efeitos em indicadores de monitoramento da hanseníase. Rev Bras Enferm. 2020;73(4):e20190038. doi: 10.1590/0034-7167-2019-0038
https://doi.org/10.1590/0034-7167-2019-0...

Assessment of completeness was performed for each variable selected. After dividing the number of forms on which there was no information for the variable by the total number of notification forms, the quotient was multiplied by 100. The completeness criteria were the same as those proposed by Romero & Cunha (2006), taking the proportion of in-completeness1616. Abath MB, Lima MLLT, Lima PS, Silva MCM, Lima MLC. Avaliação da completitude, da consistência e da duplicidade de registros de violências do Sinan em Recife, Pernambuco, 2009-2012. Epidemiol Serv Saude. 2014;23:131-42. doi: 10.5123/S1679-49742014000100013
https://doi.org/10.5123/S1679-4974201400...
(Box 2).

Box 2
Analysis of completeness, according to percentage incompleteness of the study reference

In order to analyze consistency, that is, the level of coherence between one variable and another (absence of conflict between them), the records were aligned in four correlation scenarios: “operational classification” and “initial treatment regimen”; “operational classification” and “clinical form”; “operational classification” and “No. of skin lesions”; and “initial treatment regimen” and “clinical form”. The proportion of inconsistent records was calculated after excluding cases for which these fields were either not filled out or were filled out as “not classified”. In the pairing between “operational classification” and “No. of cutaneous lesions”, cases defined as paucibacillary but with more than five skin lesions were considered inconsistent. The classification proposed by Abath et al.1717. Vieira NF, Martínez-Riera JR, Lana FCF. Qualidade da atenção primária e os efeitos em indicadores de monitoramento da hanseníase. Rev Bras Enferm. 2020;73(4):e20190038. doi: 10.1590/0034-7167-2019-0038
https://doi.org/10.1590/0034-7167-2019-0...
was adopted in order to assess consistency: excellent, when consistency percentages are equal to or greater than 90.0%; regular, between 70.0% and 89.0%; and low, when below 70.0%.

The data obtained, processed and analyzed using Microsoft Excel software were made available in graphs and simple frequency and proportion distribution tables. In the case of completeness analysis, case diagnosis and follow-up variables were presented according to health facility.

The study project was conducted in accordance with the recommendations of National Health Council Resolution No. 466, dated December 12, 2012, and was approved by the Instituto Aggeu Magalhães/Fundação Instituto Oswaldo Cruz (Fiocruz) Research Ethics Committee - File No. 4.573.230.

RESULTS

A total of 2,418 leprosy case notifications were recorded on the SINAN in the municipality of João Pessoa between 2001 and 2019. Of this total, 8 (0.3%) duplicate notifications were excluded, resulting in 2,410 notification forms: 1,717 cases diagnosed at the state referral service, 579 at municipal primary care services and 114 at the Hospital Universitário Lauro Wanderley.

Completeness was found to be good and excellent for the “race/skin color”, “clinical form”, “No. of skin lesions” and “No. of contacts registered” fields. Completeness of the “schooling” and “disability grade at diagnosis” variables was regular (10%-19% of fields incomplete), while completeness of “occupation”, “No. of nerves affected” and “bacilloscopy” was very poor (over 50% of fields incomplete), for all types of health services (Figure 1).

Figure 1
Percentage incompleteness of essential fields on the leprosy case notification form on the Notifiable Health Conditions Information System, and degree of completeness, by notifying health service, João Pessoa, Paraíba, 2001-2019

Figure 2 shows the percentage completeness of variables related to case follow-up. Completeness of the “No. of supervised doses” variable was poor (from 20% to 50% of fields not completed), completeness of “reactive episode” and “No. of contacts examined” was classified as very poor (above 50% of fields without information), whereby the percentage of fields not completed was more significant for the state referral service: 72.9% “reactive episode” and 63.3% “No. of contacts examined” fields not filled out.

Figure 2
Percentage of incomplete fields related to leprosy case follow-up on the Notifiable Health Conditions Information System, and degree of completeness attributed, by follow-up health service, João Pessoa, Paraíba, 2001-2019

When considering the consistency of the variables, forms without information in the evaluated fields were excluded, thus impacting the total number of forms for each pair of fields analyzed. As such, the following were excluded: 8 (0.3%) forms when analyzing the “operational classification” and “initial treatment regimen” fields; 77 (3.2%) forms for “operational classification” and “No. of skin lesions”; and 142 (5.9%) forms for “operational classification” and “clinical form”, “clinical form” and “initial treatment regimen” (Table 1).

The consistency analysis considered coherence between the information recorded in the “operational classification” and “initial treatment regimen” fields, with an excellent result (equal to or above 90% consistency) in total. However, when analyzing consistency between the pairs of records in the “operational classification”, “clinical form”, “initial treatment regimen” and “No. of skin lesions” fields, low or regular consistency was found (Table 1).

Table 1
Percentage coherence between paired variables for leprosy case notifications held on the Notifiable Health Conditions Information System, and classification of total consistency, João Pessoa, Paraíba, 2001-2019

DISCUSSION

Considering the criteria evaluated in the present study, based on the records of leprosy cases held on the SINAN in the municipality of João Pessoa for the period between 2001 and 2019, we found that all follow-up fields (essential) evaluated, and three diagnosis fields (complementary), had a poor or very poor degree of completeness, regardless of the type of health facility. The results showed excellent consistency only when consistency between two mandatory variables was analyzed. However, the percentage of duplicate records was found to be acceptable. This finding indicates that duplicates were controlled; however, there are failures in filling out the fields and in monitoring the system that compromise the information produced through the SINAN, leading to errors in interpretation and, consequently, in the planning of actions in the face of this health condition.

The study’s limitations include those related to the use of secondary data from the data recording system. Secondary data can produce biases by underestimating the number of people affected, thus impacting the indicators. There is no way to quantify underreporting, although a reduction in this risk is to be expected, since the first level of grouping of data from all services in the municipality was used, in addition to medication packaged and sent by pharmaceutical care services following case notification, which has been done for the last decade. Another limitation of this work is related to the limited availability of studies on the completeness of leprosy data, making it difficult to make comparisons with data from other studies.

Some 71% of notifications containing diagnosis of leprosy cases, during the study period, were made by the state referral service; in disagreement with what the Ministry of Health advocates, that is, decentralization of leprosy control actions to Primary Health Care with emphasis on tracing, diagnosis, treatment, prevention, surveillance and combating social stigma associated with leprosy.1818. Rodrigues RN, Arcêncio RA, Lana FCF. Epidemiologia da hanseníase e a descentralização das ações de controle no Brasil. Rev Baiana Enferm. 2021;35:e39000. doi: 10.18471/rbe.v35.39000
https://doi.org/10.18471/rbe.v35.39000...
In Brazil, the main strategy for decentralizing leprosy control actions consists of expanding the coverage of Family Health teams, expanding the population’s access to health services and thus making early diagnosis and timely treatment possible. However, the concentration of diagnosis in the referral service demonstrates that the challenges of decentralization go beyond increasing the coverage of Primary Care. A study on the epidemiology of leprosy and its association with the decentralization of disease control actions in Brazilian municipalities, between 2001 and 2015, points to the need for changes in the training and employment of health professionals, in health team work processes and in the priorities of the health service management’s political agenda, so that the decentralization of leprosy case tracing, diagnosis and follow-up activities becomes effective.1919. Aguiar YPS. Qualidade dos registros de hanseníase no sistema de informação de agravos de notificação em Teresina, Piauí, 2012 [dissertação]. Rio de Janeiro: Fundação Oswaldo Cruz, Escola Nacional de Saúde Pública Sergio Arouca; 2015. Notwithstanding, a study conducted out in Teresina, Piauí, in 2012, found a different distribution, with a higher proportion of diagnoses in Primary Care.2020. Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Departamento de Vigilância das Doenças Transmissíveis. Diretrizes para vigilância, atenção e eliminação da hanseníase como problema de saúde pública: manual técnico-operacional [Internet]. Brasília: Ministério da Saúde; 2016 [citado 2023 Jan 7]. Disponível em: Disponível em: http://biblioteca.cofen.gov.br/wp-content/uploads/2022/01/diretrizes-vigilancia-atencao-eliminacao-hanseniase.pdf
http://biblioteca.cofen.gov.br/wp-conten...

Primary Care is considered the main gateway to the health system and its capillarity is linked to advances in decentralized care, identification of suspected cases, diagnosis, follow-up and examination of contacts, while the referral service serves as a backup, for more complex diagnoses, investigation of drug intolerance, relapses, therapeutic resistance and prescription of replacement treatment regimens.2121. Freitas BHBM, Cortela DCB, Ferreira SMB. Perfil sociodemográfico, clínico e epidemiológico da hanseníase em menores de quinze anos, Mato Grosso, Brasil. Hansen Int. 2017;42(1-2):12-8. doi: 10.47878/hi.2017.v42.34969
https://doi.org/10.47878/hi.2017.v42.349...

The analysis of the records used in this study found only 8 (0.3%) duplicate records, this being a proportion considered acceptable, corroborating the results found in the state of Mato Grosso (99.5%) regarding leprosy in children under 15 years of age, between 2001 and 2013, (2222. Barbosa CC, Bonfim CV, Brito CMG, Souza WV, Melo MFO, Medeiros ZM. Spatial analysis of epidemiological and quality indicators of health services for leprosy in hyperendemic areas in Northeastern Brazil. Rev Inst Med Trop Sao Paulo. 2020;62:e93. doi: 10.1590/S1678-9946202062093
https://doi.org/10.1590/S1678-9946202062...
as well as those of an evaluation of indicators for the state of Pernambuco between 2005 and 2014.2323. Tavares AMR. Perfil epidemiológico da hanseníase no estado de Mato Grosso: estudo descritivo. Einstein (São Paulo). 2021;19:eAO5622. doi: 10.31744/einstein_journal/2021AO5622
https://doi.org/10.31744/einstein_journa...
Despite the proportion of duplicates found (0.3%) being acceptable, the João Pessoa municipal surveillance service needs have a routine for finding duplicates, since repeated notifications lead to overestimation of case prevalence, thereby impacting the results of studies, calculation of indicators and planning of actions.

With regard to our analysis of the filling out of the variables reported by the first notifying health facility, the degree of completeness was considered good or excellent for the “race/skin color”, “clinical form”, “No. of skin lesions” and “No. of contacts registered” variables. These results draw attention, since for the variables in question, despite their being essential for case characterization and active tracing of new cases, filling them out is not mandatory. The result we obtained for the “race/skin color” variable is similar to that of a national analysis conducted between 2016 and 2020, when missing information in this field accounted for just 3.4%;2424. Romanholo HSB, Souza EA, Ramos Júnior AN, Kaiser ACGCB, Silva IO, Brito AL, et al. Vigilância de contatos intradomiciliares de hanseníase: perspectiva do usuário em município hiperendêmico. Rev Bras Enferm. 2018;71(1):163-9. doi: 10.1590/0034-7167-2016-0607
https://doi.org/10.1590/0034-7167-2016-0...
as well as being similar to the 3.7% found in Londrina, state of Paraná, from 2009 to 2016, with excellent completeness.2525. Rocha MCN, Nobre ML, Garcia LP. Características epidemiológicas da hanseníase nos idosos e comparação com outros grupos etários, Brasil (2016-2018). Cad Saude Publica. 2020;36(9):e00048019. doi: 10.1590/0102/311X00048019
https://doi.org/10.1590/0102/311X0004801...
Filling out this field contributes to analyses of social inequalities and risk of illness, and to building public policies that consider the needs of different ethnic-racial groups.

Based on the analysis of the filling out of the “No. of nerves affected” field, we found that the degree of completeness was poor or very poor, regardless of the type of health service. However, the “disability grade at diagnosis” had good completeness at the Hospital Universitário Lauro Wanderley, while it was regular at the state referral service and at the primary care facilities. Physical disability at diagnosis indicates operational aptitude for early diagnosis.

Completeness of the “bacilloscopy” field was very poor. It is neither a mandatory nor an essential field for filling out on the notification form. Its use is recommended when there is certainty that testing is available. Slit-skin smear bacilloscopy is an auxiliary examination for diagnosis and classification of the disease, in addition to assisting with defining leprosy relapse. This poor performance may be a consequence of centralizing sample collections and tests at a health service, as well as its non-mandatory nature. Similar findings were found in studies carried out in Bahia, between 2001-2014 and 2005-2015, and in Mato Grosso, between 2001 and 2013, with individuals under 15 years of age.2525. Rocha MCN, Nobre ML, Garcia LP. Características epidemiológicas da hanseníase nos idosos e comparação com outros grupos etários, Brasil (2016-2018). Cad Saude Publica. 2020;36(9):e00048019. doi: 10.1590/0102/311X00048019
https://doi.org/10.1590/0102/311X0004801...

As for case follow-up, the “No. of supervised doses” field was completed in less than 50% of the cases monitored, at all levels of health services. This finding is worrying, because monitoring the monthly dose is an opportunity to assess the health service user and reinforce guidelines on treatment and self-care. Monitoring monthly doses makes it possible to identify service users who fail to attend, and they should receive a home visit within 30 days, in order to avoid treatment abandonment.2121. Freitas BHBM, Cortela DCB, Ferreira SMB. Perfil sociodemográfico, clínico e epidemiológico da hanseníase em menores de quinze anos, Mato Grosso, Brasil. Hansen Int. 2017;42(1-2):12-8. doi: 10.47878/hi.2017.v42.34969
https://doi.org/10.47878/hi.2017.v42.349...

In general, recording of the “No. of contacts examined” during treatment scored a very poor degree of completeness. Completing this field correctly contributes to assessment of the capacity of health services in performing surveillance actions aimed at this group, as well as contributing to building the operational indicator that verifies the proportion of leprosy contacts examined, among those recorded.2323. Tavares AMR. Perfil epidemiológico da hanseníase no estado de Mato Grosso: estudo descritivo. Einstein (São Paulo). 2021;19:eAO5622. doi: 10.31744/einstein_journal/2021AO5622
https://doi.org/10.31744/einstein_journa...
),(2424. Romanholo HSB, Souza EA, Ramos Júnior AN, Kaiser ACGCB, Silva IO, Brito AL, et al. Vigilância de contatos intradomiciliares de hanseníase: perspectiva do usuário em município hiperendêmico. Rev Bras Enferm. 2018;71(1):163-9. doi: 10.1590/0034-7167-2016-0607
https://doi.org/10.1590/0034-7167-2016-0...
A study carried out in 2014 in the municipality of Cacoal, state of Rondônia, in Northern Brazil, found low completeness for dermatological and neurological clinical evaluation of contacts, and reiterated the need for more evidence-based health education actions.2525. Rocha MCN, Nobre ML, Garcia LP. Características epidemiológicas da hanseníase nos idosos e comparação com outros grupos etários, Brasil (2016-2018). Cad Saude Publica. 2020;36(9):e00048019. doi: 10.1590/0102/311X00048019
https://doi.org/10.1590/0102/311X0004801...

Examination of contacts is the main active tracing activity for new cases, among people who live or have lived with a person affected by leprosy. Individuals identified as contacts of leprosy cases represent the group with the highest risk of contracting leprosy compared to the general population. Active tracing promotes early diagnosis and prevention of disabilities and permanent sequelae caused by the disease. Examining contacts is a fundamental strategy for surveillance and breaking the leprosy transmission chain.2525. Rocha MCN, Nobre ML, Garcia LP. Características epidemiológicas da hanseníase nos idosos e comparação com outros grupos etários, Brasil (2016-2018). Cad Saude Publica. 2020;36(9):e00048019. doi: 10.1590/0102/311X00048019
https://doi.org/10.1590/0102/311X0004801...

The consistency of the information system evaluated in this study, especially when pairing “clinical form” with “operational classification” or with “initial treatment regimen”, proved to be low. However, when “operational classification” was paired with “treatment regimen”, excellent consistency was found between both variables. The pairing of “operational classification” with “No. of skin lesions” revealed regular consistency, impacted by paucibacillary cases with more than six skin lesions. Similar findings were found for Teresina, capital of the state of Piauí, in 2012.2020. Ministério da Saúde (BR). Secretaria de Vigilância em Saúde. Departamento de Vigilância das Doenças Transmissíveis. Diretrizes para vigilância, atenção e eliminação da hanseníase como problema de saúde pública: manual técnico-operacional [Internet]. Brasília: Ministério da Saúde; 2016 [citado 2023 Jan 7]. Disponível em: Disponível em: http://biblioteca.cofen.gov.br/wp-content/uploads/2022/01/diretrizes-vigilancia-atencao-eliminacao-hanseniase.pdf
http://biblioteca.cofen.gov.br/wp-conten...
As such, the importance of knowing the different clinical presentations of the disease and guaranteeing the recording of data was demonstrated, especially when classification mistakes occur.

In conclusion, weaknesses were identified in the records of information with regard to case diagnosis, as well as in case follow-up, this being essential in order to avoid treatment abandonment, carry out surveillance of contacts and achieve a favorable outcome. Monitoring and systematic evaluation of the completeness, consistency and non-duplication of input to the SINAN is confirmed as a necessary activity for epidemiological surveillance of leprosy in the city of João Pessoa.

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  • ASSOCIATED ACADEMIC WORK

    This article is one of the products of the doctoral thesis in Public Health entitled Leprosy: clinical, operational and spatial perspectives, in João Pessoa, Paraíba, 2000-2019, to be defended by Micheline da Silveira Mendes at the Centro de Pesquisas Aggeu Magalhães, Fundação Instituto Oswaldo Cruz, Recife, in the first semester of 2023.

Publication Dates

  • Publication in this collection
    08 May 2023
  • Date of issue
    2023

History

  • Received
    01 Nov 2022
  • Accepted
    26 Jan 2023
Secretaria de Vigilância em Saúde e Ambiente - Ministério da Saúde do Brasil Brasília - Distrito Federal - Brazil
E-mail: ress.svs@gmail.com