Desiderata Annual Report | Childhood Cancer

Childhood cancer

Considered a global public health issue, cancer requires costly and long-term treatments. Early and accurate diagnosis and quick access to quality treatment increase the chances of cure and bring hope to thousands of families.

When it comes to childhood cancer (0 to 19 years of age), the challenge is even more complex: there is no evidence of effective preventive measures, the signs and symptoms are very similar to those of other childhood diseases, the cases are rarer and generally more aggressive. However, the chances of cure are high: with early diagnosis and quick access to quality treatment, this rate can reach up to 80% in developed countries.

United for the Cure (UPC)

Mission: Ensure that children and adolescents with suspicion of cancer arrive early at the diagnostic and treatment centers that are part of 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 better chances of cure for childhood cancer. However, because it has symptoms similar to those of other childhood diseases and is rare, suspecting cancer in children and adolescents is even more challenging. With this in mind, since 2005 in Rio de Janeiro acesso ao tratamento de qualidadeDesiderata has collaborated with managers of the Unified Health Care System (SUS), specialized hospitals, and civil society institutions for the creation of the policy United for the Cure, which promotes the early diagnosis of childhood cancer.

The policy is structured in three integrated pillars:

Monitoring suspected cases from referral until outcome.

Training health care professionals to suspect cancer in children and adolescents.

Referral flow of suspected cases from Primary Care to specialized hospital within 72 hours.

RESULTS

202 children and adolescents were referred from Primary Care for investigation and treatment.

90% of the cases referred were scheduled within 3 days of appointment at Primary Care Unit

459 Family Health Strategy professionals trained

50 nursing and medical students educated on the signs and symptoms of cancer through classes, meetings, and visits to specialized hospitals

Cases monitored and results released in Newsletter n^o17

Meetings with specialized hospitals and the SES-RJ Superintendence of Health Regulation to define the referrals of pediatric oncology outpatient cases in the State Regulation System

4,200 copies of communication material were sent to the Basic Health Care Units in the city of Rio de Janeiro and to qualified cities in Metropolitan Region II, with the aim of providing guidance on how to refer a suspected case and raise awareness about the signs and symptoms of cancer

24 Children undergoing treatment took a trip to Urca Hill, in partnership with the Sugarloaf Mountain Cable Car

Actions to improve the treatment network

STRATEGY

Quality treatment requires both adequate infrastructure and multi-professional teams capable of taking care of patients’ different demands, and in the case of pediatrics, they are children and their families.

To contribute to the quality of treatment, we support the infrastructure of hospitals and transform some treatment locations into playful and welcoming spaces for children and adolescents. We transform chemotherapy, inpatient and exam rooms into happy and sensorial environments. These actions have shown to be important to reduce treatment wear on the patient, caregiver and health professional. To potentialize the care offered, we encourage the development of a multi-professional network of hospital workers who deal with pediatric cancer in Rio de Janeiro.

RESULTS

2,005 tests done at the Carioca Submarine

Reducing the need for anesthesia at the Carioca Submarine: out of 5 medical indications, none were necessary

6,000 children and adolescents benefited by the transformed spaces at the Carioca Aquariums

Donation of a cryostat to Hospital Municipal Jesus

Organizing an open call and selecting three projects

Expansion of the advanced pediatric cancer diagnostic laboratory of the Instituto de Puericultura e Pediatria Martagão Gesteira – IPPMG

Infrastructure improvement and humanization of the Radiology Service at Hospital Jesus

Donation of equipment for the INCA ophthalmology sector, with the objective of increasing chances of preserving the eyesight of children with retinoblastoma

Palliative Care

STRATEGY

"Palliative care consists in the assistance provided by a multi-disciplinary team, which aims to improve the quality of life of patients and their families facing the problem associated with life-threatening illness. This is achieved through the prevention and relief of suffering, early identification, impeccable assessment, and treatment of pain and other physical, social, psychological and spiritual symptoms.” WHO, 2002 | Brazil, Resolution no 41 from 10/31/2018.

Acknowledging the importance of this area for pediatric oncology, Desiderata develops network actions to expand the knowledge on pediatric palliative care, engage multi-professional teams with the issue, and qualify the comprehensive care given to pediatric cancer patients and their families.

RESULTS

Class on Palliative Care and Civil Society at the DHIS/ ENSP Specialization Course on Palliative Care in Primary Health Care

Participation in meetings at the Technical Chamber of Palliative Care

4 Working
Group meetings

Support and participation in the 10^th Pediatric Palliative Care Conference by HFSE in Rio de Janeiro and the INCA Palliative Care Conference

Pediatric Oncology Forum

STRATEGY

As it is a rare disease, childhood cancer needs to have its social importance acknowledged in order to enter the agenda of health care managers and make policies contemplate the promotion of early diagnosis and the peculiarities that its treatment requires. For this reason, since 2011 Instituto Desiderata has organized the Rio de Janeiro Pediatric Oncology Forum in order to stimulate various debates on the challenges behind the organization of the treatment network. These debates result in recommendations for managers. in health care, universities and social organizations, and these are monitored annually by Desiderata. In 2019, we held the 5th Pediatric Oncology Forum.

RESULTS

225 participants at the 3-day event, 54 national and 5 international speakers, 15 subjects in working groups, workshops and meetings

Meeting about the Global Initiative for Childhood Cancer with important national and international professionals in the area, and the preparation of a letter to the Ministry of Health requesting Brazil's adherence to this initiative

Preparation of the 4^th letter of recommendations for improving treatment

Cancer Registries

STRATEGY

Population-based cancer registries (PBCR) concentrate key data for the planning and implementation of public policies aimed at access to quality treatment, such as cancer incidence and survival. The hospital-based cancer registries (HBCR) have key information about the patient: diagnosis and staging of the tumor, treatment and follow-up. A fully functioning hospital-based cancer registry that has standardized information on tumor staging can use it as an essential tool for planning and controlling pediatric cancer. In this sense, Desiderata develops actions that can contribute to qualify the pediatric cancer registries: The Panorama of Pediatric Oncology intends to disseminate and monitor consolidated information about the scenario; and support the implementation of the Toronto Consensus in Brazil, a standardization on the staging of malignant tumors for registration purposes.

RESULTS

1,470 Panoramas of Pediatric Oncology distributed to professionals and health managers, as well as its presentation at events

Publishing the 6^th edition of the Panorama of Pediatric Oncology

Publishing the translation of the Toronto Consensus for use in Brazil, and also made available for use in Portugal

Support for a meeting at the INCA about the Toronto Consensus for Brazilian registrars and oncologists, and with researcher Lindsay Harvey (USA)

Support for pilot research on the consensus implementation in 5 Brazilian capitals, which is still in progress, and being coordinated by Dr. Beatriz de Camargo (INCA)

Strategic Networks

Even though it is the first cause of death by childhood disease in Brazil, cancer is rare, and therefore is not prioritized in the agenda of health managers. Besides carrying out projects that can directly contribute to public policies, Instituto Desiderata seeks to develop specific actions and create strategic partnerships with relevant national and international actors, expanding its knowledge and relationship network in the area, and contributing to the presence of childhood cancer on the agenda of health managers and decision-making aligned with national and international guidelines.

SUS (Unified Health Care System)

Elected member of the State Health Board, permanent deliberative body of the SUS that acts in the formulation of strategies and control of health policy execution.

UICC

UICC's "Treatment for all" campaign, which aims to encourage countries to advance the cancer control agenda through four pillars: registries, early diagnosis, access to treatment, and palliative care. Desiderata director, Roberta Costa Marques, was invited to be in the campaign's group of mentors and support a Costa Rican leader in the implementation of their local actions.
Participation in the summit “The War on Cancer” (The Economist) and the meeting “Liderazgo en Acción” (Mexico City).
Participation in the World Cancer Summit in Nur-Sultan, Kazakhstan.

WHO

Participation in working groups of the “Global Initiative for Childhood Cancer” organized by the World Health Organization, which brings together global specialists to increase the chances of cure in low and middle-income countries.
Meeting with the WHO in Brasilia to strengthen actions that address childhood cancer in Brazil.

IARC

Invitation to participate in the Childhood Cancer Registries Workshop and Toronto Consensus Meeting at IARC in Lyon, France.

SIOP

Participation in the SIOP Congress and articulation with several Brazilian and international oncologists in Lyon, France.

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.

Ministry of Health (PRONON)

Funding aimed at training Family Health Strategy professionals in the State of Rio de Janeiro to identify the signs and symptoms of cancer in children and adolescents and the prompt referral of cases. In addition, cancer registry professionals are trained for the qualification of data entered into the HBCR.