The main purpose of this
initiative is to develop a national population-based pediatric cancer registry.
As a first step, we have created a population-based cancer registry for the
district of Guatemala City, but integrating all hospitals serving the pediatric
cancer population and other stakeholders such as pathology centers. As the
processes are consolidated, the plan is to expand to cover the entire
Guatemalan pediatric population.
cancer registries: Population-based cancer
registries serve principally two purposes. The primary purpose is to provide
the data for planning and evaluation of cancer control and treatment. Cancer
registration allows health policy-makers to assess and address inequalities in
prevention, access and care within and between countries according to factors
such as ethnicity, occupation, socioeconomic status. Cancer registration is
also used to assess the impact of interventions designed to promote early
diagnosis, such as screening or provider education. The second purpose of
cancer registration is to serve as the basis for epidemiological studies. For
instance, using the limited data currently available, variations in incidence
of pediatric cancer appear to be quite significant if one examines incidence
rates in low- and middle-income countries versus high-income countries.
The development of a population-based cancer registry is a critical step in the
evolution of pediatric cancer care and evaluation in Central America and will
directly inform the allocation of health resources and advance clinical,
epidemiological, and health services research.
This research project aims to
improve outcomes for hospitalized pediatric oncology patients in Guatemala by
using an Oncology Pediatric Early Warning Score (Onc-PEWS).
Specialized pediatric oncology centers
in low-and middle-income countries face the combined challenge of caring for a
high-risk population in a low-resource environment, resulting in high inpatient
mortality rates. Many deaths, however, can be prevented with early and
appropriate interventions. There is an urgent need for effective,
low-cost methods for early identification of deterioration to improve inpatient
outcomes and overall pediatric cancer survival in these settings. To facilitate
early identification of clinical deterioration in hospitalized patients, many
hospitals in high-resource countries use Pediatric Early Warning Scores
(PEWS). Working closely with staff at Unidad Nacional de Oncología
Pediátrica (UNOP), our team created a modified Onc-PEWS, developed a nursing
education curriculum, and implemented the score throughout the hospital. We also established a system for monitoring all abnormal Onc-PEWS and unplanned
ICU transfers. We are now studying the effect of Onc-PEWS implementation
on patient outcomes at UNOP and evaluating the ability of the score to predict
need for unplanned ICU transfer, with the overall goal of creating an effective
tool to improve care and reduce mortality for children with cancer worldwide.
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