Health care for children with Down Syndrome in primary health care in Botucatu-SP: protocol and flowchart of diagnosis and comprehensive care in the Unified Health System (SUS)

• Grant number: 23/10099-6
• Support Opportunities: Research Grants - Research in Public Policies
• Start date: February 01, 2024
• End date: January 31, 2027
• Field of knowledge: Health Sciences - Medicine - Maternal and Child Health
• Principal Investigator: Cátia Regina Branco da Fonseca
• Grantee: Cátia Regina Branco da Fonseca
• Host Institution: Faculdade de Medicina (FMB). Universidade Estadual Paulista (UNESP). Campus de Botucatu. Botucatu , SP, Brazil
• Associated researchers: Eliana Goldfarb Cyrino
• Associated scholarship(s): 24/16258-1 - Adequacy of the Botucatu/SP Municipal Information system to include recording of Down syndrome and its comorbidities., BP.TT; 24/16350-5 - Adequacy of the Botucatu/SP Municipal Information system, learning how to prepare a Standard Operating Procedure (SOP)., BP.TT; 24/16124-5 - Implementation of the standard service form for assistance to people with Down syndrome, in the municipality of Botucatu, BP.TT

Abstract

In Brazil, it is estimated that Down syndrome (DS) affects about 300,000 people. The importance of knowing the syndrome and its comorbidities imply quality of life, prognosis and social inclusion, thus, in Brazil as in the world there are protocols and guidelines for individualized care for children with DS from the antenatal diagnosis or at birth, with well-established proposals for multidisciplinary and interdisciplinary follow-up, and necessary complementary exams. These actions make up the National Policy for Primary and Comprehensive Child Health Care (PNAB and PNAISC), of the Unified Health System (SUS). For the integral health care of children and those with DS, it is important to have uniformity in the assistance provided by Primary Health Care (PHC) professionals, who are the gateway to the public health system, and a flowchart for comprehensive care in the PHC and in the institutions that make up the specialized and multidisciplinary support network. This project aims to promote comprehensive care for children with DS, in the APS of Botucatu, based on the improvement of records in the Municipal Information System, through the improvement of the primary care policy, with the implementation of the protocol and flowchart of assistance for children with DS in the APS of Botucatu/SP - a policy in execution (PEX) that is included in the municipal health plan, since children with DS are part of the child population of the municipality and the Municipal Health Department of Botucatu is the partner institution of this proposal. There will be the participation of the Information Technology management team, as well as PHC professionals, including community health agents. The SMS will support and provide conditions for research actions, and for training in Health Education, as well as for the review and implementation of the protocol and care flowchart, objectives of this project with and for public policies. There will be a need to carry out training and health education actions for all PHC health professionals in the municipality, since gaps in health care for children with DS have already been identified in previous research, which need to be remedied in the PHC context so that actions can be implemented at this level, unlike research carried out in university hospital outpatient clinics. Through the contribution of the rapid science of the evaluation of the population of children identified by the municipal management, research involving clinical, nutritional and assistance aspects will contribute to the improvement of care for these children, as well as produce advances in knowledge at this level of care in health, so little research on child health care in general, and even more specifically for children with DS. Based on the current research, proposed jointly with the local health management, other protocols for other alterations, or even early childhood illnesses, may be carried out in sequence, such as Autism, since this project intends to be a pilot for other in the municipality. It is expected, as results of research on food and food safety, assistance according to the PNAISC and evaluation of bowel habits and prevalence of chronic intestinal constipation, to identify specific approaches and to improve and implement protocols and flowchart of assistance to children with DS and the elaboration and implementation of the Standard Operating Procedure (SOP), and the line of care for children with DS. The project will support the public management process and will bring great contributions to the community, to the PHC and to the SUS. It will be able to produce scientific articles and abstracts for academic, management and public policy congresses, in addition to promoting research training in PHC, exercising the social function of the University in its fullness, without academic or scientific risks, without conflicts of interest, agreed with management and in accordance with the Municipal Health Plan (2022-25). (AU)