Desiderata Annual Report

Childhood Cancer

Cancer is the leading cause of death by disease in Brazilian children and adolescents between the ages of 1 and 19. Childhood cancer is not only rarer and generally more aggressive than cancer in adults, but it also has no effective preventive measures. Its survival rates are, nonetheless, high. Early diagnosis and speedy access to quality treatment can increase this rate up to 80%.

In the face of the Covid-19 pandemic, we have adapted our actions according to the new reality imposed on everyone. Some projects were postponed, and others were adapted. These included awareness-raising materials that became digital products, as well as events, meetings, and summits, which were held in an online format. We were also aware of the main needs of our partner hospitals. As a result, we donated personal protective equipment (PPEs) to their health workers and facilitated the transportation of children to treatment.

Unidos pela Cura (UPC)

MISSION

To guarantee that children and adolescents with suspected cancer arrive early to the diagnostic and treatment centers that are part of the Brazilian public healthcare system – known as the Unified Health Care System (SUS) – in the state of Rio de Janeiro.

STRATEGY

Early diagnosis and access to quality treatment are essential to achieve higher chances of cure for childhood cancer. However, since it is a rare disease and its symptoms are similar to those of other childhood illnesses, detecting cancer in children and adolescents is challenging. Since 2005, the Desiderata Institute has been working with managers of the Brazilian Unified Health Care System (SUS), specialized hospitals, and civil society institutions in Rio de Janeiro to develop the Unidos pela Cura (UPC), a policy that promotes early diagnosis of childhood cancer.

The UPC policy is structured in an integrated manner around three axes:

Referral flow of suspected cancer cases from Primary Care to Specialized Hospitals

Training of primary care professionals on how to detect cancer in children and adolescents

Monitoring suspected cases from referral to its final outcome

Results

272

children and adolescents referred through Primary Care for investigation and treatment

90%

of referred cases were scheduled within 3 working days after the first visit to a Primary Care center

3 online meetings with the UPC Strategic Committee

Formulation of the referral flow for suspected cancer cases within the State Regulatory System together with the State Health Department and the Municipal Health Department

Awareness-raising materials about the signs and symptoms of childhood cancer shared on social media and sent via WhatsApp to primary care professionals

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Humanization of Care

STRATEGY

To improve the quality of treatment, we upgraded the infrastructure of hospitals and transformed chemotherapy, hospitalization, and examination rooms into playful and welcoming spaces. These actions minimize the impact of treatment on patients, their caregivers, and on health care professionals.

Results

1,244

procedures conducted in the Carioca Submarine

77%

reduction in the need for anesthesia during procedures conducted in the Carioca Submarine

8,000^*

children and adolescents benefited by the humanization of hospital spaces *Estimated number according to SIS data and information collected directly from partner hospitals.

Expansion of the advanced diagnostic laboratory for pediatric cancer at the Instituto de Puericultura e Pediatria Martagão Gesteira (IPPMG), with the donation of one microscope, a karyotyping system and reagents, impacting 833 tests

Upgrade of the pediatric ophthalmologic treatment and diagnosis at INCA, through the donation of a cryotherapy device, ultrasound, slit lamp with photo and video, and projector with a video screen, impacting the accurate diagnosis and treatment of 500 children

Donation of equipment for diagnostic analysis, humanization of the X-Ray room, and maintenance of the waiting room at the Department of Radiology of the Jesus Municipal Hospital

Publication of the 2^nd edition of the “Handbook for Caregivers of Children and Adolescents with Cancer”: 300 new copies printed and distributed at the hospitals that participated in its preparation: INCA, HEMORIO, IPPMG, and HFSE.

Carioca Submarine <span>|</span> <br> Photo: Gabi Carrera — Carioca Submarine |
Photo: Gabi Carrera

Carioca Aquarium <span>|</span> <br> Photo: Fabio Caffe — Carioca Aquarium |
Photo: Fabio Caffe

X-Ray Room <span>|</span> <br> Photo: Gabi Carrera — X-Ray Room |
Photo: Gabi Carrera

Cancer Registries

STRATEGY

The population-based cancer registries (PBCR) supply essential data for the planning and implementation of public policies aimed at providing access to quality treatment, such as cancer incidence and survival. The Hospital-Based Cancer Registries (HBCR) provides key information about the patient: diagnosis and staging of the tumor, treatment, and follow-up. A fully functioning hospital-based cancer registry with standardized tumor staging information is an essential tool for planning and controlling pediatric cancer. In this sense, the Desiderata Institute is developing actions that can help qualify pediatric cancer registries: the Panorama of Pediatric Oncology aims to disclose and monitor consolidated information on this scenario. Furthermore, we support the implementation of the Toronto Consensus in Brazil, which standardizes the staging of malignant tumors for registration purposes.

Results

proposed solutions for the access of qualified data during the Children's Health Hackathon, a collaborative event for the development of innovations, which was attended by 137 participants divided in 18 teams

Coordination of 3 meetings for the WG on Cancer Registries of the Childhood Cancer Parliamentary Front - and elaboration of an action plan proposal for the improvement of registries in Brazil

Support for pilot research on the implementation of the Toronto Consensus in 4 Brazilian capitals: Cuiabá, Belo Horizonte, Curitiba, and Aracajú

Replication of the Panorama of Pediatric Oncology in São Paulo, in partnership with Abrale

Strategic Networks

Despite being the leading cause of death by disease among children and adolescents in Brazil, cancer is a rare disease, and therefore not prioritized on the agenda of health care managers. In addition to carrying out projects that can contribute directly to public policies, the Desiderata Institute strives to develop specific actions and establish strategic partnerships with key national and international players, expanding its knowledge and network in this field. The objective is to help ensure that childhood cancer is on the agenda of health managers, and that decisions are made according to national and international guidelines.

SUS

Member of the State Health Council, permanent deliberative body of SUS that acts in the formulation of strategies and the control of health policy implementation.

UICC

Member of the UICC's Global Advocacy Consulting Group, with the goal of contributing to the development of global advocacy strategies for cancer during pandemic times.

WHO

Participation in Working Groups of the World Health Organization's "Childhood Cancer Global Initiative,” which brings together world experts to improve the chances of cure in low- and middle- income countries.

SIOP

Participation in the online International Society of Pediatric Oncology Conference.

TJCC

Participation in the "Public and Private Data" Working Group. Participation in the Intersectoral Forum for the Fight against NCDs as a member of the Working Group "Todos Juntos Contra o Câncer," which discussed the importance of the qualification of data on cancer in Brazil.

CHILDHOOD CANCER PARLIAMENTARY FRONT

Coordination of the Working Group focused on cancer registries.

SOPERJ

Direct articulation to promote actions aimed at medical and nursing students who are part of the pediatric oncology and pediatrics student leagues.

“1^st Online Symposium on Pediatric Oncology," organized in partnership with Soperj and the medical student leagues. This student-centered event had 503 hits, and its intention was to raise awareness about childhood cancer.

Ministry of Health (PRONON)

Line of funding aimed at training primary care professionals in the state of Rio de Janeiro to identify the signs and symptoms of childhood cancer and to quickly refer the suspected cases. In addition, cancer registry professionals are trained to qualify the data entered into the HBCR. This project was postponed due to the pandemic and is expected to return through an online learning platform in the second half of 2021.