EnSuChiCa Environment, Survival and Childhood Cancer

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Overall Objective

To improve the environmental health and the survivorship care of child and adolescent cancer survivors (CACSs), through structured knowledge exchange, capacity building and a global multidisciplinary collaborative approach, with emphasis on reducing treatment-related mortality and continuous improvement of quality of life from the treatment phase throughout the lifespan.

Specific Objectives

1. The set-up of a collaborative network for institutional twinning of knowledge exchange and capacity building:

• To train professionals in screening and early detection of environment-related risks, including lifestyle factors and late effects for CACSs.
• Standardize screening and early detection of environment-related risks and late effects for appropriate intervention
• To create e-health tools to improve the quality of healthcare and foster greater involvement and empowerment of CACSs in their care process, from the onset and throughout survivorship, including the implementation of communication platforms and online collaboration.
• To identify environmental risk factors regarding survival to reduce treatment-related mortality and prevent late effects for CACSs, by continuous improvement of quality of life from the treatment phase throughout the lifespan, and reduce the incidence of childhood cancer (CACs)
• To promote transformational leadership, social innovation, International and South-South (between Caribbean States and Latin American countries (CELAC)) collaboration to develop a working network of trained professionals to conduct community-based participatory action-research – addressing the involvement of health administrations, private sector providers, policy-makers and patients’ organizations.

2. To promote healthier environments and lifestyles for CACSs, their families and the community by eliminating or reducing environmental/modifiable risk factors and harmful health effects:

• Carrying out careful individualized and community risk assessments to identify and assess environmental and constitutional factors link to the health of the CACSs.
• Integrating the CACSs’ and communities’ data into geographic information systems in order to strengthen efforts to build a CAC Surveillance System for CACSs in Europe and CELAC countries.
• Identifying opportunities to integrate survivorship care with existing primary healthcare to recognize, assess, and manage late effects and environment-related risks, as well as to develop guidelines and recommendations for survivors, parents and healthcare professionals.
• Supporting health information systems for their use in planning, management and public health policies.
• Promote public education and awareness about environmental risks among SCIA, their families, and the community at large as part of efforts to foster healthier lifestyles and environments.

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ENSUCHICA is a context-sensitive international and multidisciplinary collaborative proposal that builds capacity and knowledge translation integrating environmental health, now recognized as global or planetary health, into the healthcare plan for CCSs in Europe and CELAC countries. The ENSUCHICA project will provide improvements not only in prognosis but also in prevention, early detection of non-communicable or chronic diseases and subsequent malignant neoplasms (SMNs), healthcare quality, integrity, and help ensure the health and safety of the survivors of childhood cancer in their countries. 

ENSUCHICA will identify the individuals at greatest risk of a second cancer and other non-communicable diseases – based on primary cancer type, treatment exposures, other environmental cancer risk factors, and genetic susceptibility. These individuals might benefit the most from intervention programs aimed at cancer prevention or screening programs aimed at early detection. The risk is highest among females, those diagnosed with cancer before the age of 5 and those diagnosed with leukaemia.

Moreover, ENSUCHICA provides and constitutes a proposal to gather data for public and environmental health. This data is required to carry out interventions and to obtain the cooperation required to develop health-system guidance to support the implementation of childhood cancer-care strategies based on national context. Improving the registries, identification and control of the environmental risk factor will be progress, will extend survival and finally will lead to the prevention of cancer and other non-communicable diseases in CACSs from infancy to adulthood, and in the general population, albeit rather slowly.

ENSUCHICA is a project where oncologists, paediatricians and environmental health professionals cooperate with other health professionals (general practitioners, pathologists, public health workers, epidemiologists, nurse and social workers) and non-health professionals (engineers, environmental science workers, geographers, mathematicians, statisticians, physicists and chemists). Together, they will be able to recognize, assess and manage environment-related risk and late effects in CCSs. ENSUCHICA findings will provide useful information for health policy makers on the effectiveness of health-care systems and for cancer policy makers to reduce inequalities in childhood cancer survival rates.

The ENSUCHICA consortium offers a unique opportunity to narrow the survival gap between poor and rich countries by providing: training, global coordination, decentralized planning, knowledge structures and architectures for engagement, promoting transformational leadership and social innovation by collaboration between Europe and CELAC countries and South–South (between CELAC) collaboration. ENSUCHICA tries to make positive changes around CCSs at all scales (individual, professional, social, public health and healthcare system) by addressing these complex challenges from the roots upward. ENSUCHICA will create new partnerships by addressing and facing up to the challenges and multidisciplinary cooperation. 

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Any child with cancer is a CCSs from the time of diagnosis, and will continue to be one for the rest of his or her life.

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Previous studies have shown that CCSs are at greater risk of morbidity and mortality during childhood, adolescence and adulthood, usually due to late relapses, secondary tumours and an increased susceptibility to the early development of chronic diseases of adulthood. In fact, cancer survivors are 8 times more likely than their siblings to experience many of these severe or life threatening health condition.

Several studies have emphasized the need for lifestyle changes and reducing or eliminating the environmental risks as being among the most important goals in the long-term follow-up of CCSs. National and international agencies recommend a structured and if possible lifelong follow-up of CCSs.

There is growing consensus that inadequate follow-up care may be related to a fragmented health system that impedes communication and care coordination. Also, the Union for International Cancer Control (UICC) identified one principal goal for childhood cancer in Latin America the need for pan-regional leadership and collaboration on childhood cancer.

One of the goals of the ENSUCHICA-LAC is increasing the education in, and the promotion of, healthier environments and lifestyles for the survivor current and future, his or her family and the community. Another goal is the performance of screenings for the early detection and appropriate management of late effects of the disease and the treatments received by the patient to improve prognosis. Having a personalized care plan constitutes a fundamental pillar around which to build a quality long-term follow-up.

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Tool: from Pediatric Environmental History

The PEHis is a tool to identify and to assess the ambiomic fields including genoma and exposure of CCS to environment factors affecting their health. It provides a unique opportunity for a close interacting between the health professionals and the parents, and in turn with other clinical, environmental scientists, investigators, educators, those responsible for making desisions, and different members of the community. Moreover, it constitutyes a key mechanism to gather data in a harmonic way and to generate the evidence required to carry out interventins and to obtain cooperatinand thus improve the quality of CCSs’s life.

The PEHis in CCSs includes clinical records and employs a series of basic and concise questions, including genetic, genealogical, and constitutional aspects that allow the clinicians to identify the environmental risk factors. Questions applied within the history taking when children are ill, as well as during visits for survivor supervision, reminding the physician to explore for possible environmental sources, contaminants…: home, hobbies, occupational exposure, and personal behaviours.

A detailed integrative cancer risk-assessment, including an environmental clinical history of each case and the potentially relevant community-related data, may contribute to achieving two targets: improving our understanding of the etiopathogenesis behind these cases and to give the opportunities to build an environmental monitoring system to improve public health decision making under complex problems.

The development and training of the healthcare professionals in this field is essential.

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WHY THIS PROPOSAL?

This project is the result of evolution and maturity of the group.

The Environment and Pediatric Cancer Project (MACAPE) funded by the AECC Foundation (Madrid), and led by Drs. Ferrís and Ortega-García in 2004, it was the starting point for the development of the environmental clinical history of the patient with cancer, in which 11 hospitals from Spain participated. The MACAPEMUR (Medio Ambiente y Cáncer Pediátrico en la Región MURcia) project was funded as an innovative line in 2010 by the FFIS / Health Regional Office with a grant that contributed to establish itself as a research group. The group has published dozens of research papers in the area of environment and childhood cancer. National and international teaching activities have been organized with the participation of the team members.

The Pediatric Environmental History in children with cancer has been recognized as a Good Practice in the National Cancer Strategy, Ministry of Health 2006

Likewise, we have in the Region of Murcia the working group in Childhood Cancer Survivors most active in Spain and among the best in Europe. All the program available here

In addition, since 2006, the Mount Sinai Hospital in New York has collaborated in this project, providing human and financial resources in a training program linked to the scientific project. See the 2014-2016 activity report, which mentions the 25 North American researchers who have worked in Murcia related to this project Environment and Childhood Cancer. Project funded by the US NIH. (Grant MD 001452), http://pehsu.org/wp/wp-content/uploads/memopehsu14_16.pdf (see page 9).

The trajectory of collaboration with groups in Europe, USA and Latin America in Children’s Health and the Environment is broad and includes the direction of international courses of innovation and leadership in Environment and Children’s Health for Latin America, focusing on childhood cancer, held in the National Institute of Public Health of Cuernavaca (Mexico) (2009-2014), Chile (2012), Argentina and Brazil on several occasions. All funded and supported by the Division of International Health of the Mount Sinai Hospital led by Dr. Luz Claudio. In addition, in 2013, the PEHSU organized in Murcia the first Ibero-American Congress on Pediatric Environmental Health, where cancer was a main theme. In which professional from 10 countries participated (Portugal, Spain, Argentina, Chile, Colombia, Mexico, Peru, Nicaragua, Uruguay and United States). We have continued the online training for environmental screening with the Green Sheet through the FFIS. The list of the members of requests to collaborate with us from Latin America is wide and we will have to establish priorities.

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