Manejo clínico da Síndrome de Down na atenção primária: avanços e desafios
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Resumo
Objetivo: Analisar os avanços e desafios no manejo clínico de pessoas com Síndrome de Down na atenção primária à saúde. Métodos: Revisão integrativa da literatura, com triagem inicial de 92 artigos nas bases PubMed, BVS e SciELO. Após aplicação de filtros e critérios de elegibilidade, foram incluídos 14 estudos publicados entre 2015 e 2025. A seleção seguiu as diretrizes PRISMA e considerou abordagens metodológicas quantitativas, qualitativas e mistas, com ênfase em experiências na atenção primária. Resultados: Os achados apontam para avanços como a adoção de diretrizes clínicas voltadas para adultos com SD, integração de prontuários eletrônicos e uso de aplicativos de coordenação de cuidados. Destacam-se também experiências de clínicas de transição e programas com impacto na redução de hospitalizações. No entanto, persistem entraves como baixa adesão às diretrizes, formação deficiente das equipes e ausência de fluxos estruturados para a transição assistencial. Considerações finais: O fortalecimento do manejo na APS exige capacitação, protocolos padronizados e soluções tecnológicas adaptadas. Há lacunas relevantes na produção científica nacional.
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Referências
2. AHLSTRÖM G, et al. Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study. BMC Health Services Research, 2020; 20: 949.
3. AXMON A, et al. Health care utilisation among older persons with intellectual disability and dementia: a registry study. Journal of Intellectual Disability Research, 2016.
4. BERENS JC e PEACOCK C. Implementation of an academic adult primary care clinic for adolescents and young adults with complex, chronic childhood conditions. Journal of Pediatric Rehabilitation Medicine, 2015; 8: 3–12.
5. BURKE EA, et al. Ageing, osteoporosis and intellectual disability; risks differ, and diagnosis can be missed. British Journal of Learning Disabilities, 2024.
6. COSGROVE B, et al. A mixed methods analysis of care coordination needs and desirable features of an m-health application to support caregivers of children with Down syndrome. Journal of Pediatric Health Care, 2023; 37(1): 30–39.
7. DE GRAAF G, et al. Estimation of live birth and population prevalence of Down syndrome in nine US states. *American Journal of Medical Genetics Part A, 2017; 173(10): 2710-2719.
8. DELANY C, et al. What is ethically required to adapt to intellectual disability in cancer care? A case study of testicular cancer management. Journal of Intellectual & Developmental Disability, 2023; 48: 456–460.
9. GOLAN-TRIPTO I, et al. The effect of azithromycin treatment on respiratory morbidity in children with Down syndrome. BMC Pediatrics, 2025; 25: 53.
10. MANIKAM L, et al. Limited evidence on the management of respiratory tract infections in Down’s syndrome: A systematic review. The Pediatric Infectious Disease Journal, 2016; 35(10): 1075–1079.
11. MANIKAM L, et al. Respiratory tract infection-related healthcare utilisation in children with Down’s syndrome. Infection, 2020; 48: 403–410.
12. MATRANA MR, et al. Changes in non-small cell lung cancer (NSCLC) next-generation sequencing (NGS) rates after electronic health record (EHR) integration using large-scale, multi-institutional, real-world data. Journal of Clinical Oncology, 2024.
13. MCDERMOTT S, et al. Factors associated with ambulatory care sensitive emergency department visits for South Carolina Medicaid members with intellectual disability. Journal of Intellectual Disability Research, 2017.
14. MCMANUS M, et al. Value-based payment to support health care transition for young adults with intellectual and developmental disabilities: A feasibility study. Maternal and Child Health Journal, 2023; 1–9.
15. MIRZAIAN CB, et al. Barriers to mental health care transition for youth and young adults with intellectual and developmental disabilities and co-occurring mental health conditions: Stakeholders’ perspectives. Community Mental Health Journal, 2024; 60: 1104–1116.
16. MIXTER S e STEWART RW. Adult head and neck health care needs for individuals with complex chronic conditions of childhood. Medical Clinics of North America, 2018; 102: 1055–1061.
17. O’NEILL ME, et al. Evaluation of pediatrician adherence to the American Academy of Pediatrics health supervision guidelines for Down syndrome. *American Journal on Intellectual and Developmental Disabilities*, 2018; 123(5): 387–398.
18. OJHA V, et al. Exploring dual diagnosis: Examining professional’s knowledge, attitudes, and training on intellectual disability and psychiatric disorder. Multidisciplinary Reviews, 2024.
19. PAGE MJ, et al. A declaração PRISMA 2020: diretriz atualizada para relatar revisões sistemáticas. Revista Panamericana de Salud Pública, 2023; 46: 112-120.
20. PINEDA PÉREZ EJ. Bioética: necessidade de sua aplicação na atenção a crianças com Síndrome de Down. Revista Cubana de Medicina General Integral, 2016; 32(3).
21. SANTORO SL, et al. Specialty clinics for adults with Down syndrome: A clinic survey. American Journal of Medical Genetics Part A, 2021; 185(6): 1767-1775.
22. SANTORO SL, et al. Use of electronic health record integration for Down syndrome guidelines. Pediatrics, 2018; 142(3): 20174119.
23. SKELTON BB, et al. Care coordination needs of families of children with Down syndrome: A scoping review to inform development of mHealth applications for families. Children, 2021; 8.
24. SOUSA MNA, et al. Trilhando o caminho do conhecimento: o método de revisão integrativa para análise e síntese da literatura científica. Observatorio de la Economía Latinoamericana, 2023; 21(10): 18448-18483.
25. TOLER F. Females with Down syndrome: lost opportunities in primary care. Journal of the American Association of Nurse Practitioners, 2014.
26. TSOU AY, et al. Medical care of adults with Down syndrome: a clinical guideline. Jama, 2020; 324(15): 1543-1556.
27. WILLIAMS K, et al. Disparities in health supervision for children with Down syndrome. Clinical Pediatrics, 2017; 56(14): 1319-1327.
28. WOOD JC, et al. Adherence to adult clinical practice guidelines for Down syndrome. American Journal of Medical Genetics. Part A, 2024; 63850.
29. ZORZI VN, et al. Promoção de saúde mental na atenção primária: o papel dos grupos de saúde na perspectiva de usuários e profissionais. Interface (Botucatu), 2024; 28: 230447.