DESIDERATA 2021 ANNUAL REPORT

Childhood and Adolescent Cancer

Since its foundation, the Desiderata Institute has been working towards increasing the chances of cure for cancer, the leading cause of death from disease among children and adolescents aged 1 to 19 years in Brazil.

Even though childhood and adolescent cancer is less frequent, no preventive measures exist and, by and large, it is more aggressive than cancer in adults. However, with an early diagnosis and quick access to good-quality treatment, the chances of cure can be as high as 80% – a rate that is similar to that of developed countries.

Our projects seek to ensure that all children will have access to prompt diagnosis and proper treatment, thus enhancing the chances of cure.

Unidos pela Cura (UPC)

Mission

To guarantee that children and adolescents with suspected cancer will have prompt access to diagnostic and treatment centers affiliated with the Brazilian Public Health System (SUS) in the state of Rio de Janeiro.

Strategy

Early diagnosis and access to good-quality treatment are key to having higher chances of cure for childhood and adolescent cancer. Considering that it is a rare cancer with similar symptoms to those of other childhood diseases, suspecting cancer in children and adolescents in a timely manner is one of the greatest challenges in achieving high cure rates. Bearing that in mind, the Desiderata institute has been coordinating the Unidos pela Cura (UPC) in Rio de Janeiro since 2005, aimed at promoting the early diagnosis of childhood and adolescent cancer. This policy has been developed and implemented in partnership with SUS administrators, specialized hospitals, and other civil society organizations.

The policy centers around three integrated axes:

Referral flow of suspected cases from primary healthcare units to specialized hospitals within 72 hours

Training of health professionals for suspicion of cancer in children and adolescents

Monitoring of suspected cases from referral to specialized care

Learn more about Unidos pela Cura.

Results

297 Crianças e adolescentes encaminhados pela Atenção Primária para investigação e tratamento

90% dos casos encaminhados foram agendados em até 3 dias úteis após consulta na Atenção Primária

Realização da 44 Reunião do Comitê Estratégico Unidos pela Cura

Publicação do relatório final e carta de recomendações do 6o Fórum de Oncologia Pediátrica (FOP)

1.523 profissionais da Atenção Primária à Saúde do estado do Rio de Janeiro qualificados para identificação dos sinais e sintomas do câncer infantil

Primeiro Encontro sobre Saúde Infantil em parceria com a SOPERJ - Sociedade de Pediatria do estado do Rio de Janeiro - e ligas estudantis, com o tema “Sinais e Sintomas do Câncer Infantil e o Retinoblastoma”

UPC strategic planning for the next five years:

42 participantes em três dias de oficinas de trabalho

8 entrevistas para aprofundar o conhecimento sobre os desafios da Rede de Atenção em Oncologia Pediátrica no Rio de Janeiro

o Plano de trabalho desenvolvido em conjunto com os gestores do SUS, serviços especializados e sociedade civil

Expansion of Unidos Pela Cura (UPC)

Strategy

UPC has attained significant results in Rio de Janeiro over the past 16 years. In 2022, it ensured that 90% of children with suspected cancer seen at primary healthcare units had access to diagnostic and treatment centers within three business days. In 2021, we implemented a strategy for expansion of Unidos pela Cura into the state of Pernambuco with the aim of ensuring that all Brazilian children and adolescents will have the same chances of cure.

Results

Parceria firmada com a Organização Pan-Americana de Saúde (OPAS) para implementação do UPC em PE

Diagnóstico situacional favorável à implementação da política

Recurso captado para o início do projeto em 2023

Sala Jardim das Águas Vivas (Telecomandado) | Foto: Flavia Palazzo

Sala dos Robôs Abissais (Raio-X) | Foto: Flavia Palazzo

Sala de Robôs Submarinos | Foto: Gabi Carrera

Actions for Improvement of the Treatment Network

Strategy

To enhance the quality of treatment, we supported the infrastructure of hospitals and changed treatment rooms, admission halls, and examination rooms into playful and welcoming spaces. The activities carried out in these spaces follow the National Humanization Policy (HumanizaSUS) guidelines and minimize the impacts of treatment on patients, caregivers, and health professionals, in addition to improving the quality of life of all those involved in this delicate stage of childhood and adolescent cancer treatment.

In addition to cancer, these spaces also contribute to the diagnosis and treatment of other childhood diseases.

Results

Finalização do projeto de humanização do setor de radiologia do Hospital Municipal Jesus com a inauguração de duas novas salas

1.782 exames realizados no Submarino Carioca (tomografia)

6.389 exames realizados nas salas de Robôs Abissais e Robôs Submarinos (Raio-X)

691 exames realizados na sala Jardim das Águas Vivas (Telecomandado)

1 criança apenas teve necessidade de anestesia nos procedimentos realizados no Submarino Carioca

730 (valor estimado segundo dados do Sistema de Informação em Saúde e informações coletadas diretamente com hospitais parceiros) crianças e adolescentes beneficiados por equipamentos doados pelo Desiderata para diagnóstico e tratamento de câncer

*Value estimated according to the Health Information System data collected directly from partner hospitals.

Cancer registries

Strategy

In a country with continental dimensions such as Brazil, regional and state data on childhood and adolescent cancer, access to treatment, and mortality rate are crucial for the adoption of effective public policies and reduction of regional inequalities. Therefore, Desiderata is committed to systematizing and publicizing national data on childhood and adolescent cancer, as well as encouraging the implementation and improvement of registries for easier access to information that supports decision-making and the planning of public policies.

Results

Conclusion of research on the implementation of the Toronto Consensus in:

4capitais brasileiras: Cuiabá, Belo Horizonte, Curitiba e Aracaju, com apresentação dos resultados consolidados

Strategic networks

While cancer is the leading cause of death from childhood and adolescent diseases in Brazil, its diagnosis and treatment are not a priority for health managers because it is a rare disease. Being aware of that, the Desiderata Institute seeks to forge strategic partnerships with national and international relevant parties, thus expanding its knowledge and its network and helping increase the relevance of childhood and adolescent cancer on the agenda and, most importantly, in health decision-making processes.

UICC

Member of the Global Advocacy Consulting Group of the Union for International Cancer Control (UICC), seeking to contribute to the development of global advocacy strategies for cancer during pandemic periods.

PAHO

Participation in Working Groups of the “Global Initiative for Childhood Cancer” organized by the Pan American Health Organization, which brings together experts to discuss the implementation of this initiative in Latin America and Brazil.

IPPMG

Partnership with the Martagão Gesteira Well-Child Care and Pediatrics Institute (IPPMG/UFRJ) for the development of a course on pediatric palliative care as part of the project “Strategies to deal with the deficiency in pediatric care by means of telemedicine”

ENSP-Fiocruz

A working group was established for the development of a course on palliative care focused on primary healthcare.

INCA

Reception of residents from the Multiprofessional Residency in Oncology and Residency in Medical Physics programs at INCA (Brazilian National Cancer Institute). During the reception, the residents are introduced to Unidos Pela Cura and the Panorama of Pediatric Oncology and are allowed to visit the Division of Radiology of Hospital Municipal Jesus.

TJCC

Participation in the Public and Private Data Working Group “and in the organizing committee of the 1st All Together Against Cancer Forum in Rio de Janeiro.

Participation in the Organizing Committee of the 2nd All Together Against Cancer Digital Forum.