DESIDERATA 2021 ANNUAL REPORT

OVERVIEW CHILDHOOD CANCER CHILDHOOD OBESITY

Childhood Cancer

The Desiderata Institute has worked to increase the chances of a cure for cancer

Since its inauguration, the Desiderata Institute has worked to increase the chances of a cure for cancer, major cause of disease-related death among children and adolescents aged 1 to 19 years in Brazil. Preventive measures against childhood and adolescent cancer, which is rarer and often more aggressive than cancer in adults, are still lacking. However, early diagnosis and quick access to good-quality treatment increase the chances of cure, which can be as high as 80% – similar to the rates observed in developed countries.

Our projects seek to make sure that all children will have access to a quick diagnosis and proper treatment, providing them with better chances of cure.

Unidos pela Cura (UPC)

Mission

To make sure that children and adolescents with suspected cancer will be referred as soon as possible to the centers for diagnosis and treatment affiliated with the National Public Health System (SUS) in the state of Rio de Janeiro.

Strategy

Early diagnosis and access to good-quality treatment are crucial for obtaining higher chances of cure for childhood and adolescent cancer. Nevertheless, as childhood cancer is rare and its symptoms are similar to those of other childhood diseases, suspecting of its presence in children and adolescents in a timely manner that allows early diagnosis is one of the biggest challenges for attaining higher cure rates. With that in mind, the Desiderata Institute has employed, since 2005, a strategy known as Unidos pela Cura for promoting the early diagnosis of childhood and adolescent cancer in Rio de Janeiro.

This project was developed and conducted in partnership with SUS managers, specialized hospitals, and other civil society organizations.

This policy is hinged upon three interconnected pillars:

Results

264

children and adolescents referred from primary healthcare centers for investigation and treatment

91%

of referred cases scheduled within

3 days

after primary care consultation

online meeting of the UPC strategic committee

288

primary healthcare professionals in the state of RJ trained for the identification of signs and symptoms of childhood cancer

Reformulation of the course

Early Diagnosis of Childhood and Adolescent Cancer for use on the online learning platform

Development of a new version

of the UPC management system

Awareness materials about the signs and symptoms of cancer published on social media and sent out to primary care professionals via WhatsApp

VISIT THE UPC WEBSITE

Learn more about the Unidos pela Cura Project

Expansion of the Unidos pela Cura Project

Strategy

In the past few years, UPC achieved important results in Rio de Janeiro, making sure that 91% of the children with suspected cancer seen at primary health centers were referred to the centers for diagnosis and treatment within three business days. Seeking to ensure that all Brazilian children and adolescents will have the same chances of cure, we implemented a strategy for expansion of the Unidos pela Cura project to other Brazilian states in 2021.

Results

Mapa do Brasil destacando os estados de São Paulo e Sergipe

Selection of two Brazilian states

where the expansion should be prioritized: Minas Gerais and Pernambuco

Publication of a Unidos pela Cura Guide

a step-by-step guide to help other regions with the organization of a healthcare network for the promotion of early diagnosis of childhood cancer

Meetings with key players

in Minas Gerais, Pernambuco, and Recife for introduction to the Unidos pela Cura project

Submarino Carioca. Foto: Gabi Carrera — Carioca Submarine (CT scan)

Aquário Carioca. Photo: Fabio Caffe — Carioca Aquarium (chemotherapy room)

Sala de Raio-X. Photo: Gabi Carrera — Underwater Robots (X-ray room)

Actions for improvement of the treatment network

Strategy

In an attempt to contribute towards the improvement of treatment quality, we support the infrastructure of hospital and adapt chemo, admission, and exam rooms, turning them into ludic and welcoming spaces. These spaces minimize the negative effects of treatment on the patients, their caretakers, and health professionals, offering better quality of life to all those involved in this delicate phase of childhood and adolescent cancer treatment.

Apart from diagnosis and treatment of cancer, these spaces are also used for the diagnosis and treatment of other childhood diseases.

Results

863

exams were performed in the Carioca Submarine room (CT scan)

4,403

exams were performed in the Underwater Toy Robots room (new X-ray room at Hospital Municipal Jesus)

77%

of the need for anesthesia was reduced in procedures carried out in the Carioca Submarine room

10,528*

children and adolescents treated in humanized environments

989*

children and adolescents benefited from the equipment donated by Desiderata for the diagnosis and treatment of cancer

*Estimate made according to the data from the Healthcare Information Systems and to information collected directly from partner hospitals.

Pediatric Oncology Forum

Strategy

Childhood and adolescent cancer is a rare disease and its severity has to be frequently pointed out to public managers so they can adopt policies that promote early diagnosis and that address the peculiarities about the treatment of children and adolescents. That is why the Desiderata Institute has held debates through the Pediatric Oncology Forum about the challenges faced by the treatment network. These debates eventually put forward recommendations for healthcare managers, universities, and social organizations, and these recommendations are monitored by Desiderata on a yearly basis.

In 2021, we held the 6th Pediatric Oncology Forum, which took place in a virtual format for the first time. This forum led to an important nationwide mobilization for the strengthening of public policies targeted at childhood cancer.

Results

Organizing committee with representatives

from all Brazilian regions

639

participants

hours of exclusive content

Brazilian lecturers

foreign lecturers

letter with recommendations for the improvement of the treatment network

Healthcare Information

Strategy

Population-based cancer registries (PBCRs) contain essential data for the planning and implementation of public policies targeted at facilitating the access to good-quality treatment, such as incidence and survival rate. Hospital-based cancer registries (HBCRs) include essential information on patients: diagnosis and tumor staging, treatment, and follow-up. A fully operational hospital cancer registry with standardized information about tumor staging is crucial for treatment planning and control of childhood cancer.

Desiderata adopts two strategies for qualification of childhood cancer registries: the publication of the Panorama on Pediatric Oncology, which consolidates information about pediatric cancer in Brazil, and the support to the implementation of the Toronto Consensus in Brazil, a proposal for international standardization of malignant tumor staging.

Results

Publication

of the first Panorama on Pediatric Oncology in Brazil, with regional and state-level information about the profile, access to treatment, and monitoring of information about the disease in our country

Live presentation

during the “Golden September” campaign about the importance of information for public policies on childhood and adolescent cancer

Support to the pilot study

on the implementation of the Toronto Consensus in four Brazilian state capitals: Cuiabá, Belo Horizonte, Curitiba, and Aracaju

Strategic Networks

In addition to conducting projects that may contribute directly to the implementation and strengthening of public policies, the Desiderata Institute seeks to establish strategic partnerships with important actors both at the national and international levels, broadening its knowledge and its network of relationships in the field and helping to put childhood and adolescent cancer on the agenda of healthcare managers and in the decision-making process in line with national and international guidelines.

SUS

Integral member of the State Health Council, permanent deliberative body of the Brazilian National Public Health System (SUS), which is in charge of formulating strategies and controlling the implementation of health policies.

UICC

Full Member of UICC’s (Union for International Cancer Control) Global Advocacy Consulting Group, with the aim of helping devise global advocacy strategies against cancer in times of pandemic.

PAHO

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

TJCC

Participation in the Working Group on “Public and Private Data” and in the organizing committee of the 1st Forum entitled “Todos Juntos Contra o Câncer” (All Together against Cancer) in Rio de Janeiro.

Presentation of the Panorama on Pediatric Oncology in Brazil at the 3rd Digital Forum entitled “Todos Juntos Contra o Câncer - Norte e Nordeste” (All Together Against Cancer – North and Northeast).

SOBOPE

Presentation of the Unidos pela Cura project experience at the workshop “In Search of Equity in Brazil,” organized in partnership with St. Jude Children’s Hospital.