DESIDERATA 2023 ANNUAL REPORT | Childhood and Adolescent Cancer

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.

Childhood and adolescent cancer is a rare disease without any preventive measures 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.

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.

With respect to the referral flow of children and adolescents with suspected cancer, the State Regulation System (SER) was tasked, from 2023 onwards, to regulate the establishment of schedules for diagnosis and treatment. This change allows extending the Unidos pela Cura strategy to other municipalities across the state.

Results

230 children and adolescents referred from primary healthcare units for investigation and treatment through the State Regulation System (SER);

14 meetings with the Local Department of Health and State Department of Health to redesign and qualify referral flow from primary care to SER;

70 primary healthcare workers in the State of Rio de Janeiro trained for the identification of signs and symptoms of childhood cancer;

Agreements made with the Local Department of Health of Rio de Janeiro under the Unidos Pela Cura initiative:

48 hours for blood tests, CT-scans, X-rays, and ultrasound scans; Test requests identified with Unidos pela Cura stickers for prioritized collection and results; Direct referral to a specialist in case of suspected melanoma and enlarged lymph nodes > 2.5 cm and/or supraclavicular lymphadenopathy.

Publication of the report “Unidos pela Cura: achievements of the strategy for the early diagnosis of childhood and adolescent cancer in Rio de Janeiro 2007 – 2023

45th Meeting of the Unidos pela Cura Strategic Committee;

Promotion of Early Diagnosis in Pernambuco

Strategy

UPC has attained significant results in Rio de Janeiro over the past 19 years, ensuring that children with suspected cancer seen at primary healthcare units had access to diagnostic and treatment centers within three business days. To guarantee that all children and adolescents in Brazil will have the same chances of cure, we implemented a strategy in 2023, inspired by the Unidos pela Cura Project, to strengthen the early diagnosis of childhood and adolescent cancer in Pernambuco.

Results

Launch of the “Global initiative for childhood cancer in Pernambuco:
promoting early diagnosis,” in partnership with PAHO and St. Jude Children's Research Hospital

51 health professionals participated in the event;

18 institutions participated, including the Brazilian Ministry of Health, the State Department of Health of Pernambuco, the Local Department of Health of Recife, reference hospitals in pediatric oncology, and the civil society;

Three working groups were formed: referral flow, education, and monitoring.

Establishment and publication of the Strategic Committee in the Daily Official Gazette of Pernambuco (Directive SES/PE no. 731, October 11, 2023): 16 strategic actors, representing 12 institutions;

Technical note on the specificities of childhood and adolescent cancer prepared in partnership with PAHO, St. Jude Children's Research Hospital, and experts from the State of Pernambuco;

Presentation of the project at the Intergovernmental Health Commission (CIR) for managers from 19 municipalities in the Metropolitan Region of the state, Regional Healthcare Management I (GERES I).

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.

Another front we operate on is the strengthening of pediatric palliative care practices in the daily routine of hospitals to mitigate pain and provide quality of life during the treatment of children and adolescents who need special care.

Results

Humanization of treatment

Renovation and humanization of two pediatric wards at Jesus Municipal Hospital;

2,070 tomographic scans performed in the Carioca Submarine room;

4,687 radiographs performed in the Abyssal Robot and Underwater Toy Robot rooms;

2,462 remote proctored exams performed in the Garden of Living Waters room;

17,991* children and adolescents treated in humanized environments.

Equipment donation

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

Endoscopic and colonoscopic equipment donated to Jesus Municipal Hospital.

Palliative care

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

Health information

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

Mapping of institutions working in the field of pediatric oncology at the national level;

Preparation of report on the public panel of the State Regulation Complex of the Rio de Janeiro State Secretariat.

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.

ENSP/FIOCRUZ

Cooperation Agreement for the development of an online training course on palliative care for primary healthcare workers in the state of Rio de Janeiro.

IMS/UERJ

Institutional partnership in a university extension project led by the Institute of Social Medicine (IMS) entitled “Development of strategies for the qualification of care provided to children and adolescents with suspected or confirmed cancer.”

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 Jesus Municipal Hospital.

MATERNIDADE ESCOLA DA UFRJ

Institutional partnership with the Maternity School of the Federal University of Rio de Janeiro (UFRJ) for the development of the course on pediatric palliative care as part of the project “Actions to fill the gap in pediatric care via telemedicine.”

PAHO

Partnership with the Pan-American Health Organization (PAHO) for implementation of the “Global Initiative for Childhood Cancer” in Brazil. Participation in Working Groups of the “Global Initiative for Childhood Cancer” organized by PAHO and St. Jude Children's Research Hospital, which brings together experts to discuss the implementation of this initiative in Latin America and Brazil.

ST JUDE CHILDREN'S RESEARCH HOSPITAL

Partnership with St. Jude Children's Research Hospital for implementation of the “Global Initiative for Childhood Cancer” in Brazil. Participation in Working Groups of the “Global Initiative for Childhood Cancer” organized by PAHO and St. Jude Children's Research Hospital, which brings together experts to discuss the implementation of this initiative in Latin America and Brazil.

SOPERJ

Partnership with the Brazilian Society of Pediatrics of Rio de Janeiro (SOPERJ) for a lecture on childhood cancer/Unidos Pela Cura for pediatrics students.

TJCC

Member of the Public and Private Data Working Group and participant in the general meetings of All Together Against Cancer (TJCC) working groups.

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 against cancer.