Browsing by Author "Diaz-Coronado, R"

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An international multicenter survey reveals health care providers’ knowledge gap in childhood central nervous system tumors
(Springer Science and Business Media Deutschland GmbH, 2023) Rajagopal, R; Moreira, DC; Faughnan, L; Wang, H; Naqvi, S; Krull, L; Vasquez, L; Diaz-Coronado, R; Terao, M; Devidas, M; Qaddoumi, I
Childhood central nervous system (CNS) tumors have longer delays in diagnosis than do other pediatric malignancies because health care providers (HCPs) lack awareness about clinical presentation of these tumors. To evaluate the knowledge gap among HCPs, we conducted a global cross-sectional survey. The survey consisted of a set of CNS tumor knowledge questions focused on symptoms, signs, and imaging indications. The survey was disseminated to HCPs via email (November 2018–March 2020). Participants had to complete a pre-test survey, attend an education seminar on CNS tumors, and complete a post-test survey. The knowledge gap was evaluated using pre-test and post-test scores. We received 889 pre-test and 392 post-test responses. Most respondents were from Asia (73.1% of pre-test responses; 87.5% of post-test responses). The median pre-test score was 40.0% (range: 13.1–92.9%). A high percentage of correct answers were given in post-test responses (median score: 77.1%, range: 14.9–98.2%). In the pre-test, 18.7% of participants accurately responded that Cushing’s triad was a less common symptom, and 15.0% recognized that children aged > 10 years are at risk of late diagnosis. Surprisingly, 21.9% falsely reported that patients with malignancy experienced the longest pre-diagnostic symptom interval, and 54.5% of respondents wrongly selected medulloblastoma as the most common CNS tumor. Overall, pediatricians demonstrated a greater knowledge gap on both surveys than did other specialties. Conclusion: Pre- and post-test surveys revealed significant knowledge gaps in childhood CNS tumors among HCPs. Thus, raising professional awareness on clinical presentations of CNS tumors through educational strategies is important to address this knowledge deficit.What is Known:• Diagnostic delay in childhood central nervous system (CNS) tumors continues to be a significant problem that negatively impacts the quality of life and treatment sequelae.• Lack of medical education on CNS tumors is a contributing factor to this problem.What is New:• Most health care providers do not realize that low-grade tumors are the most common neoplasm in children.• Health care providers fail to recognize that teenagers and adolescents are a vulnerable age group for diagnostic delays, with the longest pre-diagnostic symptom interval. © 2022, The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.
Challenges to sustainability of pediatric early warning systems (PEWS) in low-resource hospitals in Latin America
(Frontiers Media S.A., 2022) Agulnik, A; Schmidt-Grimminger, G; Ferrara, G; Puerto-Torres, M; Gillipelli, SR; Elish, P; Muniz-Talavera, H; Gonzalez-Ruiz, A; Armenta, M; Barra, C; Diaz-Coronado, R; Hernandez, C; Juarez, S; Loeza, JJ; Mendez, A; Montalvo, E; Penafiel, E; Pineda, E; Graetz, DE; McKay, V
Background: Sustainability, or continued use of evidence-based interventions for long-term patient benefit, is the least studied aspect of implementation science. In this study, we evaluate sustainability of a Pediatric Early Warning System (PEWS), an evidence-based intervention to improve early identification of clinical deterioration in hospitalized children, in low-resource settings using the Clinical Capacity for Sustainability Framework (CCS). Methods: We conducted a secondary analysis of a qualitative study to identify barriers and enablers to PEWS implementation. Semi-structured interviews with PEWS implementation leaders and hospital directors at 5 Latin American pediatric oncology centers sustaining PEWS were conducted virtually in Spanish from June to August 2020. Interviews were recorded, professionally transcribed, and translated into English. Exploratory thematic content analysis yielded staff perceptions on PEWS sustainability. Coded segments were analyzed to identify participant perception about the current state and importance of sustaining PEWS, as well as sustainability successes and challenges. Identified sustainability determinants were mapped to the CCS to evaluate its applicability. Results: We interviewed 71 staff including physicians (45%), nurses (45%), and administrators (10%). Participants emphasized the importance of sustaining PEWS for continued patient benefits. Identified sustainability determinants included supportive leadership encouraging ongoing interest in PEWS, beneficial patient outcomes enhancing perceived value of PEWS, integrating PEWS into the routine of patient care, ongoing staff turnover creating training challenges, adequate material resources to promote PEWS use, and the COVID-19 pandemic. While most identified factors mapped to the CCS, COVID-19 emerged as an additional external sustainability challenge. Together, these challenges resulted in multiple impacts on PEWS sustainment, ranging from a small reduction in PEWS quality to complete disruption of PEWS use and subsequent loss of benefits to patients. Participants described several innovative strategies to address identified challenges and promote PEWS sustainability. Conclusion: This study describes clinician perspectives on sustainable implementation of evidence-based interventions in low-resource settings, including sustainability determinants and potential sustainability strategies. Identified factors mapped well to the CCS, however, external factors, such as the COVID pandemic, may additionally impact sustainability. This work highlights an urgent need for theoretically-driven, empirically-informed strategies to support sustainable implementation of evidence-based interventions in settings of all resource-levels. Copyright © 2022 Agulnik, Schmidt-Grimminger, Ferrara, Puerto-Torres, Gillipelli, Elish, Muniz-Talavera, Gonzalez-Ruiz, Armenta, Barra, Diaz-Coronado, Hernandez, Juarez, Loeza, Mendez, Montalvo, Penafiel, Pineda, Graetz and McKay.
Documenting adaptations to an evidence-based intervention in 58 resource-variable pediatric oncology hospitals across implementation phases
(BioMed Central Ltd, 2024) Quesada-Stoner, AC; Islam, S; Siječić, A; Malone, S; Puerto-Torres, MF; Cardenas, A; Prewitt, K; Alfonso, Carreras, Y; Alvarez-Arellano, SY; Argüello-Vargas, D; Ceballo-Batista, GI; Diaz-Coronado, R; Diniz, Borborema, MDC; Toledo, JE; Fing, E; Garay, Z; Hernández-González, CJ; Jimenez-Antolinez, YV; Juárez, Tobías, MS; Lemos, de, Mendonça, e, Fontes, L; Lopez-Facundo, NA; Mijares, Tobias, JM; Miralda-Méndez, ST; Montalvo, E; Cawich, ZN; Portilla, Figueroa, CA; Sahonero, M; Sánchez-Martín, M; Serrano-Landivar, MX; Soledad, García, V; Vasquez, A; Velásquez, Cabrera, DM; Carothers, BJ; Shelton, RC; Graetz, D; Acuña, C; Luke, DA; McKay, VRR; Agulnik, A
Background: Adaptation of evidence-based interventions (EBIs) often occurs when implemented in new local contexts and settings. It is unclear, however, during which phase of implementation adaptations are most frequently made and how these changes may impact the fidelity, effectiveness, and sustainability of the EBI. Pediatric Early Warning Systems (PEWS) are EBIs for early identification of deterioration in hospitalized children with cancer. This study evaluates adaptations of PEWS made among resource-variable pediatric oncology hospitals in Latin America implementing and sustaining PEWS. Methods: We conducted a cross-sectional survey among pediatric oncology centers participating in Proyecto Escala de Valoración de Alerta Temprana (EVAT), a collaborative to implement PEWS. Adaptations to PEWS were assessed via 3 multiple choice and 1 free text question administered as part of a larger study of PEWS sustainability. Descriptive statistics quantitatively described what, when, and why adaptations were made. Qualitative analysis of free text responses applied the Framework for Reporting Adaptations and Modifications Expanded (FRAME) to describe respondent perspectives on PEWS adaptations. Results: We analyzed 2,094 responses from 58 pediatric oncology centers across 19 countries in Latin America. Participants were predominantly female (82.5%), consisting of nurses (57.4%) and physicians (38.2%) who were PEWS implementation leaders (22.1%) or clinical staff (69.1%). Respondents described multiple PEWS adaptations across all implementation phases, with most occurring during the planning and piloting of EBIs. Adaptations included changes to PEWS content (algorithm, scoring tool, terminology, and use frequency) and context (personnel delivering or population). Respondents felt adaptations streamlined monitoring, enhanced effectiveness, improved workflow, increased comprehension, and addressed local resource limitations. Qualitative analysis indicated that most adaptations were categorized as fidelity consistent and planned; fidelity inconsistent adaptations were unplanned responses to unanticipated challenges. Conclusion: Adaptations made to PEWS across implementation phases demonstrate how EBIs are adapted to fit dynamic, real-world clinical settings. This research advances implementation science by highlighting EBI adaptation as a potential strategy to promote widespread implementation and sustainability in hospitals of all resource levels.
High-risk histopathological features of retinoblastoma following primary enucleation: A Global Study Of 1,426 Patients From 5 Continents
(Lippincott Williams and Wilkins, 2024) Kaliki, S; Vempuluru, VS; Bakal, KR; Dorji, S; Tanna, V; Shields, CN; Fallon, SJ; Raval, V; Ahmad, A; Mushtaq, A; Hussain, M; Yousef, YA; Mohammad, M; Roy, SR; Huque, F; Tatiana, U; Yuri, S; Vladimir, P; Zambrano, SC; Alarcón-León, S; Valdiviezo-Zapata, C; Vargas-Martorellet, M; Gutierrez-Chira, C; Buitrago, M; Ortiz, JS; Diaz-Coronado, R; Tripathy, D; Rath, S; Patil, G; Berry, JL; Pike, S; Brown, B; Tanabe, M; Frenkel, S; Eiger-Moscovich, M; Pe'er, J; Shields, CL; Eagle, RC,, Jr; Laiton, A; Velasco, AM; Vega, K; Desimone, J; Bejjanki, KM; Kapoor, AG; Venkataraman, A; Bryant, V; Reddy, MA; Sagoo, MS; Hubbard, GB; Azarcon, CP; Olson, TA; Grossniklaus, H; Rolfe, O; Staffieri, SE; O'day, R; Mathew, AA; Elder, JE; Mckenzie, JD; Fabian, ID; Shemesh, R; Vishnevskia-Dai, V; Ali, MH; Jakati, S; Mishra, DK; Palkonda, VAR
Purpose: To evaluate high-risk histopathological features following primary enucleation of eyes with retinoblastoma and assess the patient outcomes across continents. Methods: A retrospective study of 1,426 primarily enucleated retinoblastoma eyes from five continents. Results: Of all, 923 (65%) were from Asia (AS), 27 (2%) from Australia (AUS), 120 (8%) from Europe (EUR), 162 (11%) from North America (NA), and 194 (14%) from South America (SA). Based on the continent (AS vs. AUS vs. EUR vs. NA vs. SA), the histopathological features included massive choroidal invasion (31% vs. 7% vs. 13% vs. 19% vs. 27%, P = 0.001), postlaminar optic nerve invasion (27% vs. 0% vs. 16% vs. 21% vs. 19%, P = 0.0006), scleral infiltration (5% vs. 0% vs. 4% vs. 2% vs. 7%, P = 0.13), and microscopic extrascleral infiltration (4% vs. 0% vs. <1% vs. <1% vs. 4%, P = 0.68). Adjuvant chemotherapy with/without orbital radiotherapy was given to 761 (53%) patients. Based on Kaplan-Meier estimates in different continents (AS vs. AUS vs. EUR vs. NA vs. SA), the 6-year risk of orbital tumor recurrence was 5% versus 2% versus 0% versus 0% versus 12% (P < 0.001), systemic metastasis was reported in 8% versus 5% versus 2% versus 0% versus 13% (P = 0.001), and death in 10% versus 3% versus 2% versus 0% versus 11% (P < 0.001) patients. Conclusion: There is a wide variation in the infiltrative histopathological features of retinoblastoma across continents, resulting in variable outcomes. SA and AS had a higher risk of orbital tumor recurrence, systemic metastasis, and death compared to AUS, EUR, and NA. Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.
Multilevel impacts of a pediatric early warning system in resource-limited pediatric oncology hospitals
(Frontiers Media S.A., 2022) Mirochnick, E; Graetz, DE; Ferrara, G; Puerto-Torres, M; Gillipelli, SR; Elish, P; Muniz-Talavera, H; Gonzalez-Ruiz, A; Armenta, M; Barra, C; Diaz-Coronado, R; Hernandez, C; Juarez, S; Loeza, JDJ; Mendez, A; Montalvo, E; Penafiel, E; Pineda, E; Agulnik, A
Background: Pediatric Early Warning Systems (PEWS) reduce clinical deterioration, improve interdisciplinary communication, and provide cost savings
Prognostic factors of pediatric ependymomas at a National Cancer Reference Center in Peru
(Frontiers Media SA, 2023) Perez-Roca, E; Negreiros, T; Casavilca-Zambrano, S; Ojeda-Medina, L; Diaz-Coronado, R
Background: Ependymomas are central nervous system tumors that significantly impact the quality of life and carry a high mortality rate. Both the disease itself and its treatment cause significant morbidity. At a national level in Peru, there are no reports on clinical characteristics of the disease. Methods: This retrospective study captured patient aged less than 19 years with a diagnosis of ependymoma from 2012 to 2022 at a tertiary center in Lima. Results: 85 patients were included with a median follow-up time was 51.6 months. The 5-year overall survival and progression-free survival were 55.89% (95% CI: 44.28 – 65.99) and 37.71% (95% CI: 26,21-49,16) respectively. The main prognostic factors identified were completed treatment (p=0.019), adjuvant chemotherapy (p=0.048), presence of metastasis (p=0.012), and disease recurrence (p=0.02). Conclusions: The survival of patients with ependymoma is below that reported in high-income countries. Incomplete treatment and treatment abandonment are factors that negatively impact the prognosis. Further studies are needed to identify barriers in the referral and treatment process for patients with ependymoma.
Retinoblastoma Outcomes Based on the 8th Edition American Joint Committee on Cancer Pathological Classification in 1411 Patients
(Elsevier Inc., 2024) Vempuluru, VS; Shields, CL; Berry, JL; Kaliki, S; Ahmad, A; Bejjanki, KM; Diaz-Coronado, R; Eiger-Moscovich, M; Elder, JE; Fabian, ID; Frenkel, S; Grossniklaus, H; Hubbard, GB,, III; Kapoor, AG; Mohammad, M; McKenzie, JD; Pe'er, J; Rath, S; Reddy, MA; Rolfe, O; Roy, SR; Sagoo, MS; Staffieri, SE; Tanabe, M; Tatiana, U; Tripathy, D; Vishnevskia-Dai, V; Vladimir, P; Yousef, YA
Purpose: To evaluate the outcomes of retinoblastoma (RB) based on the 8th edition of the American Joint Committee on Cancer (AJCC) pathological classification in a global cohort of patients. Design: Retrospective, multicenter, intercontinental, collaborative study. Participants: A total of 1411 patients. Intervention: Primary enucleation with or without adjuvant chemotherapy or radiotherapy. Main Outcome Measures: Orbital tumor recurrence, tumor-related metastasis, and tumor-related death. Results: According to the 8th edition AJCC pathological classification, 645 eyes (46%) belonged to pathological T (pT)1, 164 (11%) to pT2, 493 (35%) to pT3, and 109 (8%) to pT4 categories. At a mean follow-up of 38 months (median, 35 months; < 1–149 months), orbital tumor recurrence was seen in 8 (1%), 5 (3%), 22 (4%), and 25 (23%) of pT1, pT2, pT3, and pT4 (P < 0.001) categories, respectively; tumor-related metastasis was seen in 7 (1%), 5 (3%), 40 (8%), and 46 (43%) of pT1, pT2, pT3, and pT4 (P < 0.001) categories, respectively; tumor-related death was seen in 12 (2%), 7 (4%), 64 (13%), and 64 (59%) of pT1, pT2, pT3, and pT4 (P < 0.001) categories, respectively. Multivariate Cox proportional hazards analysis of outcomes revealed pT category and adjuvant therapy as independent predictors of outcomes. Categories pT3b (P = 0.005), pT3c (P < 0.001), pT3d (P < 0.001), and pT4 (P < 0.001) had a greater hazard for orbital recurrence; categories pT2a (P = 0.015), pT3a (P < 0.001), pT3b (P < 0.001), pT3c (P < 0.001), pT3d (P < 0.001), and pT4 (P < 0.001) had a greater hazard for tumor-related metastasis; and categories pT2a (P = 0.068), pT2b (P = 0.004), pT3a (P < 0.001), pT3b (P < 0.001), pT3c (P < 0.001), pT3d (P < 0.001), and pT4 (P < 0.001) had a greater hazard for tumor-related death when compared with the pT1 category. Patients who did not receive adjuvant therapy had greater hazards of orbital tumor recurrence in categories pT3b (P = 0.005), pT3c (P = 0.003), and pT4 (P = 0.002); greater hazards of tumor-related metastasis in categories pT3a (P = 0.001), pT3b (P = 0.01), pT3c (P = 0.001), and pT4 (P = 0.007); and tumor-related death in categories pT3a (P < 0.001), pT3b (P = 0.009), pT3c (P = 0.018), and pT4 (P < 0.001) when compared with those who received adjuvant therapy. Conclusions: The 8th edition AJCC pathological classification predicts outcomes in patients undergoing primary enucleation for RB, and adjuvant therapy is associated with a lower risk of orbital recurrence, tumor-related metastasis, and tumor-related death in the pT3 and pT4 categories. Financial Disclosure(s): The author(s) have no proprietary or commercial interest in any materials discussed in this article.
Stages of change: Strategies to promote use of a Pediatric Early Warning System in resource-limited pediatric oncology centers
(John Wiley and Sons Inc, 2023) Woo, MC; Ferrara, G; Puerto-Torres, M; Gillipelli, SR; Elish, P; Muniz-Talavera, H; Gonzalez-Ruiz, A; Armenta, M; Barra, C; Diaz-Coronado, R; Hernandez, C; Juarez, S; Loeza, JDJ; Mendez, A; Montalvo, E; Peñafiel, E; Pineda, E; Graetz, DE; Kortz, T; Agulnik, A
Background: Pediatric Early Warning Systems (PEWS) assist early detection of clinical deterioration in hospitalized children with cancer. Relevant to successful PEWS implementation, the “stages of change” model characterizes stakeholder support for PEWS based on willingness and effort to adopt the new practice. Methods: At five resource-limited pediatric oncology centers in Latin America, semi-structured interviews were conducted with 71 hospital staff involved in PEWS implementation. Purposive sampling was used to select centers requiring variable time to complete PEWS implementation, with low-barrier centers (3–4 months) and high-barrier centers (10–11 months). Interviews were conducted in Spanish, professionally transcribed, and translated into English. Thematic content analysis explored “stage of change” with constant comparative analysis across stakeholder types and study sites. Results: Participants identified six interventions (training, incentives, participation, evidence, persuasion, and modeling) and two policies (environmental planning and mandates) as effective strategies used by implementation leaders to promote stakeholder progression through stages of change. Key approaches involved presentation of evidence demonstrating PEWS effectiveness, persuasion and incentives addressing specific stakeholder interests, enthusiastic individuals serving as models for others, and policies enforced by hospital directors facilitating habitual PEWS use. Effective engagement targeted hospital directors during early implementation phases to provide programmatic legitimacy for clinical staff. Conclusion: This study identifies strategies to promote adoption and maintained use of PEWS, highlighting the importance of tailoring implementation strategies to the motivations of each stakeholder type. These findings can guide efforts to implement PEWS and other evidence-based practices that improve childhood cancer outcomes in resource-limited hospitals.
Treatment Outcomes and Definition Inconsistencies in High-Risk Unilateral Retinoblastoma
(Elsevier Inc., 2024) Arazi, M; Baum, A; Casavilca-Zambrano, S; Alarcon-Leon, S; Diaz-Coronado, R; Ahmad, Alia; Mushtaq, Asma; Hussain, M; Ushakova, T; Yuri, S; Vladimir, P; Shields, Cl; Eagle, RC; Berry, JL; Pike, S; Brown, B; Roy, Sr; Huque, F; Fabian, Ina; Frenkel, S; Eiger-Moscovich, Maya; Pe'er, J; Hubbard, GB; Olson, TA; Grossniklaus, H; Reddy, MA; Sagoo, MA; Staffieri, SE; Elder, JE; Mckenzie, JD; Tanabe, M; Kaliki, S; Fabian, ID
Purpose: To compare the clinical outcomes of children with unilateral retinoblastoma (Rb) and high-risk histopathology features (HRHF) following upfront enucleation with/without adjuvant chemotherapy, and investigate cases locally considered non-HRHF but converted to a standardized HRHF definition. Design: Retrospective multinational clinical cohort study. Methods: Children with Rb who presented to 21 centers from 12 countries between 2011-2020, and underwent primary enucleation were recruited. Centers retrieved clinical data and were asked to report detailed histopathology findings, as well as indicate cases defined locally as high-risk. For analysis, only unilateral cases with standardized HRHF, defined as retrolaminar optic nerve invasion, massive choroidal invasion, scleral invasion, anterior-segment involvement, and/or combined nonmassive choroidal and prelaminar/laminar optic nerve invasion, were included. Main outcome measures included orbital tumor recurrence, systemic metastasis, survival and number, and outcome of cases converted to standardized HRHF. Results: A total of 600 children presenting to 14 centers in 9 countries were included. Of these, 505 (84.2%) were considered locally as HRHF and received adjuvant chemotherapy. After a median follow-up period of 39.2 ± 1.6 months (range: 0.8-60.0 months), 36 (6.0%) had orbital tumor recurrence, 49 (8.2%) metastasis, and 72 (12.0%) children died. Children not receiving adjuvant chemotherapy were at significantly increased risk of orbital tumor recurrence, metastasis, and death (P ≤ .002). Of the study children, 63/600 (10.5%) were considered locally non-HRHF, but converted to standardized HRHF and included in the analysis. Of these, 6/63 (9.5%) had orbital tumor recurrence, 5/63 (7.9%) metastasis, and 6/63 (9.5%) children died. Isolated minor choroidal invasion with prelaminar/laminar optic nerve invasion was reported in 114 (19.0%) children, but considered locally as HRHF only in 68/114 (59.6%). Of these, 6/114 (5.3%) children developed metastasis and subsequently died, yielding a number needed to treat of 15. Conclusion: Based on this multinational cohort of children with Rb, we recommend the use of adjuvant chemotherapy following upfront enucleation and diagnosis of HRHF. Variation exists worldwide among centers when defining HRHF, resulting in adverse patient outcomes, warranting standardization.