Cystic fibrosis demographics and healthcare resource utilization in the Brazilian healthcare system
CF Burden and HCRU in Brazil
DOI:
https://doi.org/10.21115/JBES.v17.p59-70Keywords:
cystic fibrosis, Hospital Healthcare Resource Utilization, DatasusAbstract
Objective: To describe the demographic characteristics and hospital healthcare resource utilization (HCRU) in people with cystic fibrosis (CF) in Brazil before the introduction of CF Transmembrane Conductance Regulator modulators, using a public health database system. Methods: This retrospective, cross-sectional study described demographic characteristics of people with CF using the Outpatient Procedure Information System (SIA) and the Hospital Admission Information System (SIH) databases from 2015 to 2019. Patients were identified in the SIH in each year using the International Classification of Diseases (ICD-10) code E84. For the SIA, in addition to ICD-10, the record of ≥ 1 prescription of dornase alfa, pancreatic enzymes, or inhaled tobramycin in that year was also considered. All analyses were descriptive and stratified by age. Results: The number of people with CF in the SIA database increased from 3,737 in 2015 to 4,048 in 2019. Across all years, about half of the population was male (range: 51.4%-52.8%), aged ≥ 12 years, and resided in the southeast region. The number of hospitalizations increased from 1,300 in 2015 to 1,508 in 2019. Annual hospitalization rates per patient were higher among the youngest (<6 years) and oldest (≥18 years) age groups than in the ≥ 6 to < 18-year age group. Most hospitalizations (>80%) required treatment for pulmonary manifestations, and the average length of stay ranged from 11 to 15 days. Conclusion: CF poses substantial HCRU burden to the public health system in Brazil. This study showed that people with CF had a high rate of hospitalizations with lengthy stays per hospitalization.
Downloads
References
Agência Nacional de Saúde. (2023). "Dados e Indicadores do Setor — Agência Nacional de Saúde Suplementar." Retrieved June 16, 2023, from https://www.gov.br/ans/pt-br/acesso-a-informacao/perfil-do-setor/dados-e-indicadores-do-setor.
Ahern, S., F. Salimi, M. Caruso, R. Ruseckaite, P. Wark, A. Schultz and J. Armstrong (2022). The Australian Cystic Fibrosis Data Registry (ACFDR) Annual Report, Monash University, Department of Epidemiology and Preventive Medicine. Report No 23.
Ali, M. S., M. Y. Ichihara, L. C. Lopes, G. C. G. Barbosa, R. Pita, R. P. Carreiro, D. B. Dos Santos, D. Ramos, N. Bispo, F. Raynal, V. Canuto, B. de Araujo Almeida, R. L. Fiaccone, M. E. Barreto, L. Smeeth and M. L. Barreto (2019). "Administrative Data Linkage in Brazil: Potentials for Health Technology Assessment." Front Pharmacol 10: 984.
Amare, R. A., G. Fisseha, A. Berhe and L. L. Tirore (2022). "Incidence of recovery from severe pneumonia and its predictors among children 2-59 months admitted to pediatric ward of Ayder Comprehensive Specialized Hospital, Tigray, Ethiopia: A retrospective Cohort study." J Family Med Prim Care 11(9): 5285-5292.
Athanazio, R. A., L. Silva Filho, A. A. Vergara, A. F. Ribeiro, C. A. Riedi, E. Procianoy, F. V. Adde, F. J. C. Reis, J. D. Ribeiro, L. A. Torres, M. B. Fuccio, M. Epifanio, M. C. Firmida, N. Damaceno, N. Ludwig-Neto, P. J. C. Marostica, S. Z. Rached, S. F. O. Melo and C. Grupo de Trabalho das Diretrizes Brasileiras de Diagnostico e Tratamento da Fibrose (2017). "Brazilian guidelines for the diagnosis and treatment of cystic fibrosis." J Bras Pneumol 43(3): 219-245.
Brazilian Cystic Fibrosis Study Group (GBEFC) (2018). Brazilan Cystic Fibrosis Registry (REBRAFC) Annual Report 2018.
Brazilian Cystic Fibrosis Study Group (GBEFC) (2019). Brazilan Cystic Fibrosis Registry (REBRAFC) Annual Report 2019.
Brazilian Cystic Fibrosis Study Group (GBEFC) (2020). Brazilan Cystic Fibrosis Registry (REBRAFC) Annual Report 2020.
Brazilian Cystic Fibrosis Study Group (GBEFC) (2020). Brazilan Cystic Fibrosis Registry (REBRAFC) Annual Report 2021.
Bresnick, K., E. Arteaga-Solis, S. J. Millar, G. Laird and C. LeCamus (2021). "Burden of cystic fibrosis in children <12 years of age prior to the introduction of CFTR modulator therapies." BMJ Open Respir Res 8(1).
Briesacher, B. A., A. L. Quittner, H. Fouayzi, J. Zhang and A. Swensen (2011). "Nationwide trends in the medical care costs of privately insured patients with cystic fibrosis (CF), 2001-2007." Pediatr Pulmonol 46(8): 770-776.
Bustamante, A. E., L. T. Fernandez, L. C. Rivas and R. Mercado-Longoria (2021). "Disparities in cystic fibrosis survival in Mexico: Impact of socioeconomic status." Pediatr Pulmonol 56(6): 1566-1572.
Cardoso, T. A., C. Roncada, E. R. D. Silva, L. A. Pinto, M. H. Jones, R. T. Stein and P. M. Pitrez (2017). "The impact of asthma in Brazil: a longitudinal analysis of data from a Brazilian national database system." J Bras Pneumol 43(3): 163-168.
Castro, M. C., A. Massuda, G. Almeida, N. A. Menezes-Filho, M. V. Andrade, K. V. M. de Souza Noronha, R. Rocha, J. Macinko, T. Hone, R. Tasca, L. Giovanella, A. M. Malik, H. Werneck, L. A. Fachini and R. Atun (2019). "Brazil's unified health system: the first 30 years and prospects for the future." Lancet 394(10195): 345-356.
Chen, Q., Y. Shen and J. Zheng (2021). "A review of cystic fibrosis: Basic and clinical aspects." Animal Model Exp Med 4(3): 220-232.
Cystic Fibrosis Canada (2023). The Canadian Cystic Fibrosis Registry 2021 Annual Data Report. Toronto, Canada.
Cystic Fibrosis foundation patient Registry (2023). 2022 Annual Data Report. Bethesda, Maryland.
da Mota Almeida Peroni, F., M. Lindelow, D. Oliveira De Souza and M. Sjoblom (2019). "Realizing the right to health in Brazil's Unified Health System through the lens of breast and cervical cancer." Int J Equity Health 18(1): 39.
Dickinson, K. M. and J. M. Collaco (2021). "Cystic Fibrosis." Pediatr Rev 42(2): 55-67.
Durieu, I., F. Dalon, Q. Reynaud, L. Lemonnier, C. Dehillotte, M. Berard, D. Walther, M. Viprey, E. Van Ganse and M. Belhassen (2022). "Temporal trends in healthcare resource use and associated costs of patients with cystic fibrosis." J Cyst Fibros 21(1): 88-95.
Fonseca, L. G. A., R. B. Florencio, I. Lima and L. Peroni Gualdi (2021). "Time trend of Brazilian hospital admissions and deaths due to asthma among children and teenagers, 1998-2019." PLoS One 16(3): e0248472.
Godoy, C., D. C. Paixao, N. C. A. Boa-Sorte, T. Amorim, L. da Silva Filho and E. L. Souza (2023). "Five-year performance analysis of a cystic fibrosis newborn screening program in northeastern Brazil." J Pediatr (Rio J) 99(1): 23-30.
Grosse, S. D., T. Q. N. Do, M. Vu, L. B. Feng, J. G. Berry and G. S. Sawicki (2018). "Healthcare expenditures for privately insured US patients with cystic fibrosis, 2010-2016." Pediatr Pulmonol 53(12): 1611-1618.
Guo, J., A. Garratt and A. Hill (2022). "Worldwide rates of diagnosis and effective treatment for cystic fibrosis." J Cyst Fibros 21(3): 456-462.
Huang, L., H. J. Lai, N. Antos, M. J. Rock, F. Asfour, M. Howenstine, J. M. Gaffin and P. M. Farrell (2022). "Defining and identifying early-onset lung disease in cystic fibrosis with cumulative clinical characteristics." Pediatr Pulmonol 57(10): 2363-2373.
Kaur, B. P., S. Lahewala, S. Arora, K. Agnihotri, S. S. Panaich, E. Secord and D. Levine (2015). "Asthma: Hospitalization Trends and Predictors of In-Hospital Mortality and Hospitalization Costs in the USA (2001-2010)." Int Arch Allergy Immunol 168(2): 71-78.
Lieu, T. A., G. T. Ray, G. Farmer and G. F. Shay (1999). "The cost of medical care for patients with cystic fibrosis in a health maintenance organization." Pediatrics 103(6): e72.
Liou, T. G., E. P. Elkin, D. J. Pasta, J. R. Jacobs, M. W. Konstan, W. J. Morgan and J. S. Wagener (2010). "Year-to-year changes in lung function in individuals with cystic fibrosis." J Cyst Fibros 9(4): 250-256.
Magalhaes, L. S., G. M. Policena, V. S. M. Carneiro, L. D. C. Costa, M. Costa and M. Vieira (2021). "Analysis of the trend of hospitalizations for asthma in children and adolescents in Brazil." J Pediatr (Rio J) 97(3): 309-314.
Martiniano, S. L., A. A. Elbert, P. M. Farrell, C. L. Ren, M. K. Sontag, R. Wu and S. A. McColley (2021). "Outcomes of infants born during the first 9 years of CF newborn screening in the United States: A retrospective Cystic Fibrosis Foundation Patient Registry cohort study." Pediatr Pulmonol 56(12): 3758-3767.
Martins, J. P., G. C. Forte, M. Simon, M. Epifanio, L. A. Pinto and P. J. C. Marostica (2018). "The role of neonatal screening in nutritional evolution in the first 12 months after diagnosis of cystic fibrosis." Rev Assoc Med Bras (1992) 64(11): 1032-1037.
Ministério da Saúde. (2021). "Indicadores da Triagem Neonatal no Brasil." Retrieved February 20, 2024, from https://www.gov.br/saude/pt-br/composicao/saes/sangue/pntn/indicadores-da-triagem-neonatal.
Ministério da Saúde, S. d. C., Tecnologia, Inovação e Complexo da Saúde - SECTICS. Relatório de Recomendação nº 844- MEDICAMENTO. (2023). " Elexacaftor/Tezacaftor/Ivacaftor para o tratamento de pacientes com fibrose cística com 6 anos de idade ou mais com ao menos uma mutação F508del no gene regulador de condução transmembrana de fibrose cística. Brasília/DF. ."
Ministério da Saúde. Secretaria de Ciência, T., Inovação e Complexo da Saúde - SECTICS. Relatório de Recomendação nº 892- PROTOCOLOS & DIRETRIZES. (2024). "Protocolo Clínico e Diretrizes Terapêuticas Fibrose Cística. Brasília/DF. ."
Ouyang, L., S. D. Grosse, D. D. Amendah and M. S. Schechter (2009). "Healthcare expenditures for privately insured people with cystic fibrosis." Pediatr Pulmonol 44(10): 989-996.
Perkins, R. C., M. Shah and G. S. Sawicki (2021). "An evaluation of healthcare utilization and clinical charges in children and adults with cystic fibrosis." Pediatr Pulmonol 56(5): 928-938.
Procianoy, E., N. Ludwig Neto and A. F. Ribeiro (2023). "Patient care in cystic fibrosis centers: a real-world analysis in Brazil." J Bras Pneumol 49(1): e20220306.
Raskin, S., L. Pereira-Ferrari, F. C. Reis, F. Abreu, P. Marostica, T. Rozov, J. Cardieri, N. Ludwig, L. Valentin, N. A. Rosario-Filho, E. Camargo Neto, E. Lewis, R. Giugliani, E. M. Diniz, L. Culpi, J. A. Phillip, 3rd and R. Chakraborty (2008). "Incidence of cystic fibrosis in five different states of Brazil as determined by screening of p.F508del, mutation at the CFTR gene in newborns and patients." J Cyst Fibros 7(1): 15-22.
Santo, A. H. and L. Silva-Filho (2021). "Cystic fibrosis-related mortality trends in Brazil for the 1999-2017 period: a multiple-cause-of-death study." J Bras Pneumol 47(2): e20200166.
Saúde., B. M. d. (2024). "DATASUS. Informatics Department of SUS. 2024. Available at: http://www2.datasus.gov.br/DATASUS/index.php."
Scotet, V., C. L'Hostis and C. Ferec (2020). "The Changing Epidemiology of Cystic Fibrosis: Incidence, Survival and Impact of the CFTR Gene Discovery." Genes (Basel) 11(6).
Skolnik, K., Ronksley, P., Pendharkar, S. R., Wick, J. P., Quon, B. S., & Williamson, T. (2021). "Hospital costs of Canadian cystic fibrosis patients." Canadian Journal of Respiratory, Critical Care, and Sleep Medicine 6: 145–152.
Sociais., I. C. d. E. (2024). "Sistema de Informacões Ambulatoriais do SUS–SIA/SUS. ."
Sociais., I. C. d. E. (2024a). "Sistema de Informacões Hospitalares do SUS–SIH/SUS.".
Thorat, T., L. J. McGarry, M. M. Bonafede, B. L. Limone, J. L. Rubin, K. Jariwala-Parikh and M. W. Konstan (2021). "Healthcare resource utilization and costs among children with cystic fibrosis in the United States." Pediatr Pulmonol 56(9): 2833-2844.
Turcios, N. L. (2020). "Cystic Fibrosis Lung Disease: An Overview." Respir Care 65(2): 233-251.
van Gool, K., R. Norman, M. B. Delatycki, J. Hall and J. Massie (2013). "Understanding the costs of care for cystic fibrosis: an analysis by age and health state." Value Health 16(2): 345-355.
Williams, S., S. Gousen and C. DeFrances (2018). "National Hospital Care Survey Demonstration Projects: Pneumonia Inpatient Hospitalizations and Emergency Department Visits." Natl Health Stat Report(116): 1-11.
Zhao, Q., M. Coelho, S. Li, P. H. N. Saldiva, M. J. Abramson, R. R. Huxley and Y. Guo (2020). "Trends in Hospital Admission Rates and Associated Direct Healthcare Costs in Brazil: A Nationwide Retrospective Study between 2000 and 2015." Innovation (Camb) 1(1): 100013.
Zolin, A., A. Orenti, A. Jung and J. van Rens (2023). "The European Cystic Fibrosis Society Patient Registry (ECFSPR) Annual Report 2021."
Zuppo Laper, I., C. Camacho-Hubner, R. Vansan Ferreira, C. Leite Bertoli de Souza, M. V. Simoes, F. Fernandes, E. de Barros Correia, A. de Jesus Lopes de Abreu and G. Silva Julian (2024). "Assessment of potential transthyretin amyloid cardiomyopathy cases in the Brazilian public health system using a machine learning model." PLoS One 19(2): e0278738.
