Development of a clinical decision support system for caregivers of children with hemophilia

Authors

  • Gabriela Gräwer Bauermann UFCSPA
  • André Santaló Oliveira UFRGS
  • Eliane Dallegrave UFCSPA
  • Cecília Dias Flores UFCSPA

DOI:

https://doi.org/10.59681/2175-4411.v16.iEspecial.2024.1291

Keywords:

Hemophilia A, Clinical, Decision Support Systems, Caregivers, Decision Support Systems, Clinical

Abstract

Hemophilia is diagnosed in the first years of the patients' lives. Therefore, it is essential that their caregivers are trained on how to manage the disease. Given that, information technologies help in expanding access to information and improving healthcare services. Objective: Develop an application with a Clinical Decision Support System to assist these caregivers. Method: The development of the application took place in three stages, including the modeling of specialist knowledge and the interface of the system. Results: this work demonstrated the potential of using Bayesian Networks in the development of a Clinical Decision Support System to assist caregivers of pediatric hemophiliac patients. Conclusion: This study corroborates the benefits and need for an application that offers useful, easily accessible and understandable information for caregivers of children with hemophilia.

Author Biographies

Gabriela Gräwer Bauermann, UFCSPA

Mestrado em Tecnologia da Informação e Gestão em Saúde, PPG Tecnologia da Informação e Gestão em Saúde, Universidade Federal de Ciências da Saúde de Porto Alegre (UFCSPA), Porto Alegre (RS), Brasil.

André Santaló Oliveira, UFRGS

Bacharelado em Computação, Instituto de Informática, Universidade Federal do Rio Grande do Sul (UFRGS), Porto Alegre (RS), Brasil.

Eliane Dallegrave, UFCSPA

Doutorado em Ciências Veterinárias, PPG Farmacologia, Universidade Federal de Ciências da Saúde de Porto Alegre (UFCSPA), Porto Alegre (RS), Brasil.

Cecília Dias Flores, UFCSPA

Doutorado em Computação, PPG Ensino na Saúde, Universidade Federal de Ciências da Saúde de Porto Alegre (UFCSPA), Porto Alegre (RS), Brasil.

References

Bayes Server. Bayesian Networks - An Introduction. Página inicial. Disponível em: https://www.bayesserver.com/docs/introduction/bayesian-networks. Acesso em 24 Agosto 2021.

Brasil. Manual de Hemofilia. Secretaria de Atenção à Saúde, Departamento de Atenção Especializada e Temática. 2a. ed., 1. reimpr. Brasília: Ministério da Saúde, 2015. 80 p. : il.

Centers for Disease Control and Prevention (CDC). Data & Statistics on Hemophilia. Disponível em: https://www.cdc.gov/ncbddd/hemophilia/index.html. Acesso em 15 Setembro 2022.

Clobridge A. Building a Digital Repository Program with Limited Resources. Oxford: Chandos Publishing, 2010. 272p. DOI: https://doi.org/10.1533/9781780630458

Cutter S, Guelcher C, Hunter S, Rotellini D, Dunn S, Cooper DL. Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study. Patient Relat Outcome Meas. 2019;10:257-266. https://doi.org/10.2147/PROM.S214188 DOI: https://doi.org/10.2147/PROM.S214188

Davis LL. Instrument Review: Getting the Most from a Panel of Experts. Applied Nursing Research, 1992. 5(4), 194-197. https://doi.org/10.1016/S0897-1897(05)80008-4 DOI: https://doi.org/10.1016/S0897-1897(05)80008-4

Dover S, Young NL, Blanchette VS, et al. Measuring the impact of hemophilia on families: Development of the Hemophilia Family Impact Tool (H-FIT). Res Pract Thromb Haemost. 2021;5(4):e12519. https://doi.org/10.1002/rth2.12519 DOI: https://doi.org/10.1002/rth2.12519

Flores CD, Macagnan FE, Almeida ST, Galante R, Bykowski APM, Alonso EEA, Oliveira AS. (2023). SR-BayeS: um framework para criação de Sistemas de Apoio à Decisão Clínica baseados em redes Bayesianas. In Anais Estendidos do XXIII Simpósio Brasileiro de Computação Aplicada à Saúde, (pp. 186-191). Porto Alegre: SBC. https://doi.org/10.5753/sbcas_estendido.2023.231157 DOI: https://doi.org/10.5753/sbcas_estendido.2023.231157

Grant RM. The Knowledge-Based View of the Firm: Implications for Management Practice. Long Range Planning, 1997. 30, 450-454. https://doi.org/10.1016/S0024-6301(97)00025-3 DOI: https://doi.org/10.1016/S0024-6301(97)00025-3

Horny M. Bayesian Networks. Boston University - School of Public Health, 2014. Technical Report No. 5.

Iorio A, Stonebraker JS, Chambost H, et al. Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019;171(8):540-546. https://doi.org/10.7326/M19-1208 DOI: https://doi.org/10.7326/M19-1208

Kelley LA, Narváez AL. Criando uma Criança com Hemofilia na América Latina. Baxter, BioScience, 2006. 209-23.11.

Leite SS, Áfio ACE, Carvalho LV, Silva JMD, Almeida PC, Pagliuca LMF. Construction and validation of an Educational Content Validation Instrument in Health. Revista Brasileira de Enfermagem. 2018;71(suppl 4):1635-1641. https://doi.org/10.1590/0034-7167-2017-0648 DOI: https://doi.org/10.1590/0034-7167-2017-0648

Lynn MR. Determination and quantification of content validity. Nurs Res. 1986;35(6):382-385. DOI: https://doi.org/10.1097/00006199-198611000-00017

Lucas PJF, Van Der Gaag LC, Abu-Hanna A. Bayesian Networks in Biomedicine and Health-care. Artificial Intelligence in Medicine, 2004. 30(3), 201-214. DOI: https://doi.org/10.1016/j.artmed.2003.11.001

Madsen AL, Lang M, Kjærulff UB, Jensen F. The Hugin Tool for Learning Bayesian Networks. In Nielsen TD, Zhang NL, editors, Symbolic and Quantitative Approaches to Reasoning with Uncertainty: 7th European Conference. Springer. 2003. p. 594-605. (Lecture Notes in Computer Science; No. 2711). DOI: https://doi.org/10.1007/978-3-540-45062-7_49

Mello NC, Goes FGB, Pereira-Avila FMV, Moraes JRMM, Silva LF, Silva, MA. Construção e Validação de Cartilha Educativa para Dispositivos Móveis sobre Aleitamento Materno. Texto & Contexto - Enfermagem, 2020. Volume 29. https://doi.org/10.1590/1980-265XTCE-2018-0492

Nationwide Children’s Hospital. Hemophilia Carrier. Disponível em: https://www.nationwidechildrens.org/conditions/hemophilia-carrier. Acesso em 14 Fevereiro 2023.

Oliveira AS, Galante R, Flores CD. SR-BayeS – A Framework for Mobile Application of Clinical Decision Support Systems Based on Bayesian Networks. Universidade Federal do Rio Grande do Sul, 2019. Disponível em: https://lume.ufrgs.br/bitstream/handle/10183/198563/001098441.pdf?sequence=1&isAllowed=y. Acesso em 26 Julho 2022.

Oliveira EN, Melo BT, Carvalho AG, Melo FVD, Costa JBC, Lima GF, Aragão HL, Prado FA, Ribeiro LM, Silva M de LB da, Alves Santos L. Application validation in the health context: integrative review. RSD. 2021;10(15):e201101522847. https://doi.org/10.33448/rsd-v10i15.22847 DOI: https://doi.org/10.33448/rsd-v10i15.22847

Polit DF, Beck CT. Livro-Fundamentos de pesquisa em enfermagem: avaliação de evidências para a prática da enfermagem. 7. ed. Porto Alegre: Artmed, 2011.

Saxena K. Barriers and perceived limitations to early treatment of hemophilia. J Blood Med. 2013;4:49-56. https://doi.org/10.2147/JBM.S43734 DOI: https://doi.org/10.2147/JBM.S43734

Tcheng JE, Bakken S, Bates DW, Bonner H, Gandhi TK, Josephs M, Kawamoto K, Lomotan EA, Mackay EA, Middleton B, Teich JM, Weingarten S, Lopez MH. Optimizing strategies for clinical decision support: Summary of a meeting series. 2023. p. 1–77. https://doi.org/10.17226/27122 DOI: https://doi.org/10.17226/27122

Turing. An Overview of Bayesian Networks in AI. Disponível em: https://www.turing.com/kb/an-overview-of-bayesian-networks-in-ai. Acesso em 25 Maio 2023.

World Federation of Hemophilia. Report on the Annual Global Survey 2016. Disponível em: https://www1.wfh.org/publication/files/pdf-1690.pdf. Acesso em 20 Maio 2021.

Published

2024-11-19

How to Cite

Bauermann, G. G., Oliveira, A. S., Dallegrave, E., & Flores, C. D. (2024). Development of a clinical decision support system for caregivers of children with hemophilia. Journal of Health Informatics, 16(Especial). https://doi.org/10.59681/2175-4411.v16.iEspecial.2024.1291

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