Browsing by Author "Fuentes-Alabi, S"

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Alfabetización en salud sobre calidad de vida en pacientes pediátricos con cáncer: módulos sobre cuidados paliativos pediátricos
(Pan American Health Organization, 2023) Garcia-Quintero, X; Blanco, DB; Vasquez, L; Fuentes-Alabi, S; Benites-Majano, S; Maza, M; Ugaz, C; Morales, R; Baker, JN; McNeil, MJ
Objective. To describe the development of educational materials for parents and other caregivers of children with cancer, which utilized a culturally sensitive approach to reduce acceptance barriers to palliative care (PC). Methods. The Pan American Health Organization (PAHO), St. Jude Children’s Research Hospital, and partners in Latin America and the Caribbean collaborated in a three-phase project, beginning with a needs assessment survey of caregivers of children with cancer in Peru. Based on this finding, an interdisciplinary team of pediatric PC experts developed educational content that was designed and validated by an international committee of PC and communication experts. Results. The collaboration resulted in the development of an eight-module series that introduces caregivers to key concepts of pediatric PC, including management of pain, quality of life, and end of life care. The series was designed to reduce caregiver stigma associated with PC through culturally sensitive education that addresses the low levels of health literacy among caregivers in Latin America and the Caribbean. In the 15 months since the launch, these modules have been distributed throughout Latin America and were downloaded 2 825 times. Conclusions. Educational materials and anticipatory guidance of PC were considered to be a priority for parents and other caregivers of children with cancer throughout Latin America. The materials developed through this project have been widely utilized and are available through the PAHO website and the Together by St. Jude™ online resource.
Impact of COVID-19 in pediatric oncology care in Latin America during the first year of the pandemic
(John Wiley and Sons Inc, 2022) Villanueva, G; Sampor, C; Palma, J; Villarroel, M; Valencia, D; Lombardi, MG; Garcia, WG; Caceres, EL; Sobrero, V; Garcia, L; Cabrera, V; Maza, I; Velasquez,T; Ugaz, C; Vasquez, JM; Coronado, RD; Gonzalez, N; Aguiar, S; Dabezies A; Moreno, F; Sardinas, S; Gamboa, Y; Maradiegue, E; Fu, L; Gassant, P; Moreno, K; Gonzales, O; Schelotto, M; Luna-Fineman, S; Antoneli, CG; Fuentes-Alabi, S; Luciani, S; Cappellano, A; Chantada, G; Vasquez, L
Background: The ongoing coronavirus 2019 disease (COVID-19) pandemic strained medical systems worldwide. We report on the impact on pediatric oncology care in Latin American (LATAM) during its first year. Method: Four cross-sectional surveys were electronically distributed among pediatric onco-hematologists in April/June/October 2020, and April/2021 through the Latin American Society of Pediatric Oncology (SLAOP) email list and St Jude Global regional partners. Results: Four hundred fifty-three pediatric onco-hematologists from 20 countries responded to the first survey, with subsequent surveys response rates above 85%. More than 95% of participants reported that treatment continued without interruption for new and active ongoing patients, though with disruptions in treatment availability. During the first three surveys, respondents reported suspensions of outpatient procedures (54.2%), a decrease in oncologic surgeries (43.6%), radiotherapy (28.4%), stem cell transplants (SCT) (69.3%), and surveillance consultations (81.2%). Logistic regression analysis showed that at the beginning of the first wave, participants from countries with healthcare expenditure below 7% were more likely to report a decrease in outpatient procedures (odds ratio [OR]: 1.84, 95% CI: 1.19–2.8), surgeries (OR: 3, 95% CI: 1.9–4.6) and radiotherapy (OR: 6, 95% CI: 3.5–10.4). Suspension of surveillance consultations was higher in countries with COVID-19 case fatality rates above 2% (OR: 3, 95% CI: 1.4–6.2) and SCT suspensions in countries with COVID-19 incidence rate above 100 cases per 100,000 (OR: 3.48, 95% CI: 1.6–7.45). Paradoxically, at the beginning of the second wave with COVID-19 cases rising exponentially, most participants reported improvements in cancer services availability. Conclusion: Our data show the medium-term collateral effects of the pandemic on pediatric oncology care in LATAM, which might help delineate oncology care delivery amid current and future challenges posed by the pandemic. © 2022 Wiley Periodicals LLC.