43 results on '"Graetz, Dylan E."'
Search Results
2. Concomitant Wilms tumor and autosomal dominant polycystic kidney disease.
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Fleming, Andrew M., Gehle, Daniel B., Perrino, Melissa R., Graetz, Dylan E., Bissler, John J., McCarville, Beth, Krasin, Matthew J., Brennan, Rachel C., Zhang, Jinghui, Yang, Wentao, Sapkota, Yadav, Hudson, Melissa M., Davidoff, Andrew M., Green, Daniel M., and Murphy, Andrew J.
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- 2024
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3. Parent–provider communication dynamics during the pediatric oncology diagnostic process in Guatemala: A qualitative study.
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Williams, Anneliese H., Welcome, Bria, Rivas, Silvia, Fuentes, Lucia, Cáceres‐Serrano, Ana, Ferrara, Gia, Reeves, Tegan, Antillon‐Klussmann, Federico, Rodriguez‐Galindo, Carlos, Mack, Jennifer W., and Graetz, Dylan E.
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- 2024
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4. Functions of patient- and family-centered pediatric cancer communication in Pakistan.
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Graetz, Dylan E., Ahmad, Alia, Raza, Muhammad Rafie, Hameed, Ambreen, Naheed, Asma, Najmi, Atoofa, Quanita, Afia tul, Munir, Shabnam, Ahmad, Safwan, Ferrara, Gia, Staples, Courtney, Galindo, Carlos Rodriguez, Hamid, Syed Ahmer, Jeha, Sima, and Mack, Jennifer W.
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FAMILY-centered care ,COMMUNICATION models ,PEDIATRIC oncology ,CHILDHOOD cancer ,TRUST - Abstract
Background: Communication is an essential aspect of high-quality patient- and family-centered care. A model for pediatric cancer communication developed in the United States defined eight communication functions. The purpose of this study was to explore the relevance of these functions in Pakistan as part of an effort to understand the role of culture in communication. Materials and methods: Semi-structured interviews were conducted with 20 clinicians and 18 caregivers of children with cancer at two major cancer centers. Interviews were conducted in Urdu or English and transcribed and translated as necessary. Two independent coders used a priori codes related to the communication model as well as novel codes derived inductively. Thematic analysis focused on operationalization of the functional communication model. Results: Clinicians and caregivers in Pakistan discussed the importance of all eight communication functions previously identified including: information exchange, decision-making, managing uncertainty, enabling family selfmanagement, responding to emotions, supporting hope, providing validation, and building relationships. The operationalization of these functions was influenced by Pakistani cultural context. For example, information-exchange included the importance of addressing preconceptions and community myths, while managing uncertainty included strong references to religion and faithbased coping. Essential to all eight functions was trust between the family and the medical team. Discussion: These findings support the use of this functional communication model in diverse pediatric oncology settings and emphasize the importance of trust. Culturally sensitive operationalization of these functions could inform the adaptation of tools to measure communication and interventions aimed at supporting the needs of parents of children with cancer. [ABSTRACT FROM AUTHOR]
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- 2024
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5. Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia
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Ehrlich, Bella S., Yakimkova, Taisiya, Batmunkh, Tsetsegsaikhan, Mishkova, Volha, Movsisyan, Narine, Kirgizov, Kirill, Borisevich, Marina, Kizyma, Roman, Graetz, Dylan E., McNeil, Michael J., Vinitsky, Anna, Smelov, Vitaly, Corbex, Marilys, Lam, Catherine G., Kaye, Erica C., Baker, Justin N., and Agulnik, Asya
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- 2022
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6. Response of bilateral Wilms tumor to chemotherapy suggests histologic subtype and guides treatment.
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Duncan, Colton, Mothi, Suraj Sarvode, Santiago, Teresa C, Coggins, Jordan A, Graetz, Dylan E, Bishop, Michael W, Mullen, Elizabeth A, Murphy, Andrew J, Green, Daniel M, Krasin, Matthew J, and Davidoff, Andrew M
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OLDER patients ,NEPHROBLASTOMA ,NEOADJUVANT chemotherapy ,CHILDREN'S hospitals ,LOGISTIC regression analysis - Abstract
Background Patients with bilateral Wilms tumor initially receive neoadjuvant chemotherapy to shrink the tumors and increase the likelihood of successful nephron-sparing surgery. Biopsy of poorly responding tumors is often done to better understand therapy resistance. The purpose of this retrospective, single-institution study was to determine whether initial chemotherapy response is associated with tumor histology, potentially obviating the need for biopsy or change in chemotherapy. Methods Patients with synchronous bilateral Wilms tumors who underwent surgery at St Jude Children's Research Hospital from January 2000 to March 2022 were considered for this study. A mixed-effects logistic regression model was used to evaluate the likelihood of the tumor being stromal predominant, as predicted by tumor response to neoadjuvant chemotherapy. Results A total of 68 patients were eligible for this study. Tumors that increased in size had an odds ratio of 19.5 (95% confidence interval [CI] = 2.46 to 155.03) for being stromal predominant vs any other histologic subtype. Age at diagnosis was youngest in patients with stromal-predominant tumors, with a mean age of 18.8 (14.1) months compared with all other histologic subtypes (χ
2 = 7.05, P = .07). The predictive value of a tumor growing combined with patient aged younger than 18 months for confirming stromal-predominant histology was 85.7% (95% CI = 57.18% to 93.5%). Conclusions Tumors that increased in size during neoadjuvant chemotherapy were most frequently stromal-predominant bilateral Wilms tumor, especially in younger patients. Therefore, nephron-sparing surgery, rather than biopsy, or extension or intensification of neoadjuvant chemotherapy, should be considered for bilateral Wilms tumors that increase in volume during neoadjuvant chemotherapy, particularly in patients aged younger than 18 months. [ABSTRACT FROM AUTHOR]- Published
- 2024
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7. Wilms Tumor with Vena Caval Intravascular Extension: A Surgical Perspective.
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Gehle, Daniel B., Morrison, Zachary D., Halepota, Huma F., Kumar, Akshita, Gwaltney, Clark, Krasin, Matthew J., Graetz, Dylan E., Santiago, Teresa, Boston, Umar S., Davidoff, Andrew M., and Murphy, Andrew J.
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INFERIOR vena cava surgery ,PEDIATRIC surgery ,TUMORS in children ,NEPHRECTOMY ,TREATMENT effectiveness ,BLOOD-vessel tumors ,SURGICAL complications ,ADJUVANT chemotherapy ,COMBINED modality therapy ,NEPHROBLASTOMA ,THROMBECTOMY ,TUMOR classification ,HEALTH care teams ,CHILDREN - Abstract
Wilms tumor (WT) is the most common kidney tumor in pediatric patients. Intravascular extension of WT above the level of the renal veins is a rare manifestation that complicates surgical management. Patients with intravascular extension are frequently asymptomatic at diagnosis, and tumor thrombus extension is usually diagnosed by imaging. Neoadjuvant chemotherapy is indicated for thrombus extension above the level of the hepatic veins and often leads to thrombus regression, obviating the need for cardiopulmonary bypass in cases of cardiac thrombus at diagnosis. In cases of tumor extension to the retrohepatic cava, neoadjuvant therapy is not strictly indicated, but it may facilitate the regression of tumor thrombi, making resection safer. Hepatic vascular isolation and cardiopulmonary bypass increase the risk of bleeding and other complications when utilized for tumor thrombectomy. Fortunately, WT patients with vena caval with or with intracardiac extension have similar overall and event-free survival when compared to patients with WT without intravascular extension when thrombectomy is successfully performed. Still, patients with metastatic disease at presentation or unfavorable histology suffer relatively poor outcomes. Dedicated pediatric surgical oncology and pediatric cardiothoracic surgery teams, in conjunction with multimodal therapy directed by a multidisciplinary team, are preferred for optimized outcomes in this patient population. [ABSTRACT FROM AUTHOR]
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- 2024
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8. Assessment of the quality of interdisciplinary communication (CritCom): evaluation and refinement of a center summary report.
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Counts, Lara, Rivera, Jocelyn, Wiphatphumiprates, Parima, Puerto-Torres, Maria, Prewitt, Kim, Luke, Douglas A., Graetz, Dylan E., Malone, Sara, and Agulnik, Asya
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INTERDISCIPLINARY communication ,INTENSIVE care units ,CLINICAL deterioration ,PEDIATRIC oncology ,CANCER patients ,BILINGUALISM - Abstract
Communication failures among clinicians in the ICU (intensive care unit) often lead to worse patient outcomes. CritCom is a bilingual (English and Spanish) tool to evaluate the quality of interdisciplinary communication around patient deterioration for pediatric oncology patients. The use of reports, such as the CritCom report, as dissemination methods lead to quicker knowledge translation and implementation of research findings into policy. Nurses and physicians at participating centers who care for patients at risk of deterioration completed the CritCom survey and center-specific reports were generated to communicate CritCom results. Focus groups were conducted with clinicians receiving CritCom reports in both English and Spanish to evaluate report clarity and usability. Participants found the reports to be useful and described the writing and design as clear and specific. Participants provided feedback to improve report design and requested actionable steps to improve communication at their center. Feedback illustrated that the report was easy to interpret and a useful way to disseminate information. Participants noted the utility of the report, illustrating that the use of reports can be a useful method to disseminate research findings back to participants in a way that is applicable to the local context. Communicating research findings through reports can minimize the significant time lag in knowledge translation and provide participants with actionable steps to implement in their setting. [ABSTRACT FROM AUTHOR]
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- 2024
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9. Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala
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Graetz, Dylan E., Rivas, Silvia Elena, Wang, Huiqi, Vedaraju, Yuvanesh, Fuentes, Ana Lucia, Caceres-Serrano, Annie, Antillon-Klussmann, Federico, Devidas, Meenakshi, Metzger, Monika L., Rodriguez-Galindo, Carlos, and Mack, Jennifer W.
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- 2021
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10. Evaluating the Impact of Bowel Gas Variations for Wilms' Tumor in Pediatric Proton Therapy.
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Ates, Ozgur, Pirlepesov, Fakhriddin, Uh, Jinsoo, Hua, Chia-ho, Merchant, Thomas E., Boria, Andrew, Davidoff, Andrew M., Graetz, Dylan E., and Krasin, Matthew J.
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INTESTINAL physiology ,GAS analysis ,CLINICAL trials ,PEDIATRICS ,NEPHROBLASTOMA ,TREATMENT effectiveness ,PROTON therapy ,RESEARCH funding ,DESCRIPTIVE statistics ,COMPUTED tomography ,CHILDREN - Abstract
Simple Summary: The manuscript discusses the administration of proton therapy to the first 13 pediatric patients in the prospective SJWT21 clinical trial to assess the efficacy of proton therapy in treating children with stage III-V Wilms' tumor. The group of 13 patients received abdominal irradiation after undergoing a nephrectomy or partial nephrectomy. A key aspect of the study highlighted in the manuscript is the rigorous daily monitoring of changes in bowel gas and analyzing how these changes affect the quality of the treatment plan. Additionally, the manuscript investigates the potential inaccuracies in the proton range caused by varying gantry beam angles. It aims to pinpoint the most advantageous gantry angles that would reduce deviations from the intended treatment plan, thereby improving the safety and effectiveness of proton therapy for these young patients. (1) Background: Proton therapy, a precise form of radiation treatment, can be significantly affected by variations in bowel content. The purpose was to identify the most beneficial gantry angles that minimize deviations from the treatment plan quality, thus enhancing the safety and efficacy of proton therapy for Wilms' tumor patients. (2) Methods: Thirteen patients with Wilms' tumor, enrolled in the SJWT21 clinical trial, underwent proton therapy. The variations in bowel gas were systematically monitored using daily Cone Beam Computed Tomography (CBCT) imaging. Air cavities identified in daily CBCT images were analyzed to construct daily verification plans and measure water equivalent path length (WEPL) changes. A worst-case scenario simulation was conducted to identify the safest beam angles. (3) Results: The study revealed a maximum decrease in target dose (ΔD100%) of 8.0%, which corresponded to a WEPL variation (ΔWEPL) of 11.3 mm. The average reduction in target dose, denoted as mean ΔD100%, was found to be 2.8%, with a standard deviation (SD) of 3.2%. The mean ΔWEPL was observed as 3.3 mm, with an SD of 2.7 mm. The worst-case scenario analysis suggested that gantry beam angles oriented toward the patient's right and posterior aspects from 110° to 310° were associated with minimized WEPL discrepancies. (4) Conclusions: This study comprehensively evaluated the influence of bowel gas variability on treatment plan accuracy and proton range uncertainties in pediatric proton therapy for Wilms' tumor. [ABSTRACT FROM AUTHOR]
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- 2024
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11. The most vulnerable pediatric cancer patients
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Graetz, Dylan E.
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- 2023
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12. Retrospective analysis of outcomes for pediatric acute lymphoblastic leukemia in South American centers.
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Duffy, Caitlyn, Graetz, Dylan E., Zapata Lopez, Arturo M., Carrillo, Angela K., Job, Godwin, Yichen Chen, Devidas, Meenakshi, Leon, Sandra Alarcón, Bonzi, Sol Aponte, Cardona Flores, Pedro, Escobar Torres, Lizeth, Broncano, Eddy Hernández, Jiménez Jaramillo, Soledad, Ofelia Zelada, Ma, Novoa, Romulo Reaño, Samudio, Angelica, Sánchez-Fernandez, Gissela, Villanueva, Erika, Metzger, Monika L., and Friedrich, Paola
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LYMPHOBLASTIC leukemia ,ACUTE leukemia ,MEDICAL personnel ,CHILDREN'S hospitals ,CENTRAL nervous system - Abstract
Introduction: Acute lymphoblastic Leukemia (ALL) is the most common pediatric malignancy. While the survival rate for childhood ALL exceeds 90% in high-income countries, the estimated survival in low-and middle-income countries ranges from 22-79%, depending on the region and local resources. Methods: This study retrospectively reviewed demographic, biological, and clinical parameters of children under 18 years of age with newly diagnosed ALL presenting between 2013-2017 across five pediatric centers in 4 countries in South America. Survival analyses were estimated using the Kaplan-Meier method. Results: Across the five centers, 752 patients were analyzed (Bolivia [N=9], Ecuador [N=221], Paraguay [N=197], Peru [N=325]) and 92.1% (n=690) patients were diagnosed with B-cell and 7.5% (n= 56) with T-cell ALL. The median age was 5.5 years old (IQR 7.29). At diagnosis, 47.8% of patients were categorized as standard and 51.9% as high risk per their institutional regimen. Advanced diagnostics availability varied between modalities. MRD was evaluated in 69.1% of patients; molecular testing was available for ETV6-RUNX, BCR-ABL1, TCF3-PBX1, and KMT2A-rearranged ALL in 75-81% of patients; however, karyotyping and evaluation for iAMP21 were only performed in 42-61% of patients. Central nervous system (CNS) involvement was evaluated at diagnosis in 57.3% (n=429) patients; of these, 93.7% (n=402) were CNS 1, 1.6% (n=7) were CNS 2, 0.7% (n=11) were CNS3, 1.9% (n=8) had cranial nerve palsy, and 2.1% (n=9) results unavailable. Chemotherapy delays >2 weeks were reported in 56.0% (n=421) patients during treatment. Delays were attributed to infection in 63.2% (n=265), drug-related toxicities in 47.3% (n=198), and resource constraints, including lack of bed availability in 23.2% (n=97) of patients. The 3-year Abandonment-sensitive EFS and OS were 61.0±1.9% and 67.2±1.8%, respectively. The 3-year EFS and OS were 71.0±1.8% and 79.6±1.7%, respectively. Discussion: This work reveals opportunities to improve survival, including addressing severe infections, treatment interruptions, and modifications due to drug shortages. In 2018, healthcare professionals across South America established the Pediatric Oncology Latin America (POLA) group in collaboration with St. Jude Children's Research Hospital. POLA collaborators developed an evidence-based, consensus-derived, adapted treatment guideline, informed by preliminary results of this evaluation, to serve as the new standard of care for pediatric ALL in participating institutions. [ABSTRACT FROM AUTHOR]
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- 2023
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13. Stages of change: Strategies to promote use of a Pediatric Early Warning System in resource‐limited pediatric oncology centers.
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Woo, Marisa Cristin, Ferrara, Gia, Puerto‐Torres, Maria, Gillipelli, Srinithya R., Elish, Paul, Muniz‐Talavera, Hilmarie, Gonzalez‐Ruiz, Alejandra, Armenta, Miriam, Barra, Camila, Diaz‐Coronado, Rosdali, Hernandez, Cinthia, Juarez, Susana, Loeza, José de Jesús, Mendez, Alejandra, Montalvo, Erika, Peñafiel, Eulalia, Pineda, Estuardo, Graetz, Dylan E., Kortz, Teresa, and Agulnik, Asya
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PEDIATRIC oncology ,HOSPITAL care of children ,CLINICAL deterioration ,ENVIRONMENTAL protection planning ,CHILDHOOD cancer - Abstract
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. [ABSTRACT FROM AUTHOR]
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- 2023
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14. The COVID-19 Pandemic's impact on sustainability and expansion of a Pediatric Early Warning System in resource-limited hospitals.
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Wiphatphumiprates, Parima P., Graetz, Dylan E., Ferrara, Gia, Puerto-Torres, Maria, Gillipelli, Srinithya R., Elish, Paul, Muniz-Talavera, Hilmarie, Gonzalez-Ruiz, Alejandra, Armenta, Miriam, Barra, Camila, Carpio, Zulma, Hernandez, Cinthia, Juarez, Susana, de Jesus Loeza, Jose, Mendez, Alejandra, Montalvo, Erika, Penafiel, Eulalia, Pineda, Estuardo, McKay, Virginia, and Agulnik, Asya
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COVID-19 pandemic , *RESOURCE-limited settings , *HOSPITALS , *PEDIATRIC oncology , *LAYOFFS , *UNCOMPENSATED medical care , *NURSE-patient ratio - Abstract
Background: The COVID-19 pandemic impacted healthcare delivery worldwide, including pediatric cancer care, with a disproportionate effect in resource-limited settings. This study evaluates its impact on existing quality improvement (QI) programs. Methods: We conducted 71 semi-structured interviews of key stakeholders at five resource-limited pediatric oncology centers participating in a collaborative to implement Pediatric Early Warning System (PEWS). Interviews were conducted virtually using a structured interview guide, recorded, transcribed, and translated into English. Two coders developed a codebook of a priori and inductive codes and independently coded all transcripts, achieving a kappa of 0.8-0.9. Thematic analysis explored the impact of the pandemic on PEWS. Results: All hospitals reported limitations in material resources, reduction in staffing, and impacts on patient care due to the pandemic. However, the impact on PEWS varied across centers. Identified factors that promoted or limited ongoing PEWS use included the availability of material resources needed for PEWS, staff turnover, PEWS training for staff, and the willingness of staff and hospital leaders to prioritize PEWS. Consequently, some hospitals were able to sustain PEWS; others halted or reduced PEWS use to prioritize other work. Similarly, the pandemic delayed plans at all hospitals to expand PEWS to other units. Several participants were hopeful for future expansion of PEWS post-pandemic. Conclusion: The COVID-19 pandemic created challenges for sustainability and scale of PEWS, an ongoing QI program, in these resource-limited pediatric oncology centers. Several factors mitigated these challenges and promoted ongoing PEWS use. These results can guide strategies to sustain effective QI interventions during future health crises. [ABSTRACT FROM AUTHOR]
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- 2023
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15. Impact of hospital characteristics on implementation of a Pediatric Early Warning System in resource-limited cancer hospitals.
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Abutineh, Farris, Graetz, Dylan E., Muniz-Talavera, Hilmarie, Ferrara, Gia, Puerto-Torres, Maria, Yichen Chen, Gillipelli, Srinithya R., Elish, Paul, Gonzalez-Ruiz, Alejandra, Carreras, Yvania Alfonso, Alvarez, Shillel, Cabrera, Daniela Arce, Vargas, Deiby Arguello, Cruz, Miriam Armenta, Barra, Camila, Sotelo, Patricia Calderon, Carpio, Zulma, Rios, Mayra Chavez, Covarrubias, Daniela, and Leon Vasquez, Lucy de
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CANCER hospitals ,RESOURCE-limited settings ,HOSPITAL care of children ,HOSPITALS ,CHILDHOOD cancer - Abstract
Background: Pediatric Early Warning Systems (PEWS) aid in identification of deterioration in hospitalized children with cancer but are underutilized in resource-limited settings. Proyecto EVAT is a multicenter quality improvement (QI) collaborative in Latin America to implement PEWS. This study investigates the relationship between hospital characteristics and time required for PEWS implementation. Methods: This convergent mixed-methods study included 23 Proyecto EVAT childhood cancer centers; 5 hospitals representing quick and slow implementers were selected for qualitative analysis. Semi-structured interviews were conducted with 71 stakeholders involved in PEWS implementation. Interviews were recorded, transcribed and translated to English, then coded using a priori and novel codes. Thematic content analysis explored the impact of hospital characteristics and QI experience on time required for PEWS implementation and was supplemented by quantitative analysis exploring the relationship between hospital characteristics and implementation time. Results: In both quantitative and qualitative analysis, material and human resources to support PEWS significantly impacted time to implementation. Lack of resources produced various obstacles that extended time necessary for centers to achieve successful implementation. Hospital characteristics, such as funding structure and type, influenced PEWS implementation time by determining their resource-availability. Prior hospital or implementation leader experience with QI, however, helped facilitate implementation by assisting implementers predict and overcome resource-related challenges. Conclusions: Hospital characteristics impact time required to implement PEWS in resource-limited childhood cancer centers; however, prior QI experience helps anticipate and adapt to resource challenges and more quickly implement PEWS. QI training should be a component of strategies to scale-up use of evidence-based interventions like PEWS in resource-limited settings. [ABSTRACT FROM AUTHOR]
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- 2023
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16. Interdisciplinary care of pediatric oncology patients: A survey of clinicians in Central America and the Caribbean.
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Graetz, Dylan E., Chen, Yichen, Devidas, Meenakshi, Antillon‐Klussmann, Federico, Fu, Ligia, Quintero, Karina, Fuentes‐Alabi, Soad L., Gassant, Pascale Y., Kaye, Erica C., Baker, Justin N., Rodriguez Galindo, Carlos, and Mack, Jennifer W.
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- 2023
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17. Understanding hope at diagnosis: A study among Guatemalan parents of children with cancer.
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Williams, Anneliese H., Rivas, Silvia, Fuentes, Lucia, Cáceres‐Serrano, Ana, Ferrara, Gia, Reeves, Tegan, Antillon‐Klussmann, Federico, Rodriguez‐Galindo, Carlos, Mack, Jennifer W., and Graetz, Dylan E.
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CHILDHOOD cancer ,HIGH-income countries ,PEDIATRIC oncology ,PARENTS ,HOPE - Abstract
Background: In high‐income countries, hope facilitates parental coping and builds the clinical relationship between families of children with cancer and their clinicians. However, the manifestation of hope in low‐ and middle‐income countries (LMICs) remains poorly understood. Our study explores Guatemalan parents' experiences with hope during the pediatric oncology diagnostic process and aims to identify discrete actions clinicians take to support hope. Methods: This qualitative study utilized audio‐recordings of the diagnostic process and an additional semi‐structured interview for 20 families of children with cancer at Unidad Nacional de Oncología Pediátrica in Guatemala. Spanish audio‐recordings were translated into English, transcribed, and coded using a priori and novel codes. Thematic content analysis using constant comparative methods explored parents' hopes and concerns. Results: At diagnosis, Guatemalan parents expressed both hopes and concerns related to the entire cancer continuum. Throughout the diagnostic process, hope grew as concerns were alleviated. Clinicians supported hope by creating a supportive environment, providing information, affirming religious beliefs, and empowering parents. These strategies helped parents shift their focus from fear and uncertainty toward hope for their child's future. Parents expressed that establishing hope improved mood, promoted acceptance, and enabled them to care for themselves and their children. Conclusion: These results confirm the relevance of supporting hope in pediatric oncology settings in LMICs and suggest that culture informs hope‐related needs. Supporting hope is critical across cultures and can be integrated into clinical conversation using the four processes identified by our results. [ABSTRACT FROM AUTHOR]
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- 2023
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18. Pediatric Early Warning Systems (PEWS) improve provider‐family communication from the provider perspective in pediatric cancer patients experiencing clinical deterioration.
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Gillipelli, Srinithya R., Kaye, Erica C., Garza, Marcela, Ferrara, Gia, Rodriguez, Mario, Soberanis Vasquez, Dora Judith, Mendez Aceituno, Alejandra, Antillón‐Klussmann, Federico, Gattuso, Jami S., Mandrell, Belinda N., Baker, Justin N., Rodriguez‐Galindo, Carlos, Agulnik, Asya, and Graetz, Dylan E.
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PATIENTS' families ,CHILDHOOD cancer ,CLINICAL deterioration ,PATIENTS' attitudes ,CANCER patients ,PEDIATRIC nursing - Abstract
Background: Communication between providers and patients' families is an integral part of clinical care. Family concern is a validated component of Pediatric Early Warning Systems (PEWS); however, little is known about the impact of PEWS on provider‐family communication. Methods: Semi‐structured interviews were conducted with 83 ward and Pediatric Intensive Care Unit (PICU) providers involved in the care of patients with deterioration at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (n = 42) in the United States and Unidad Nacional de Oncología Pediátrica (UNOP, n = 41) in Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Transcripts were coded by two researchers and analyzed for thematic content surrounding family communication and concern. Results: All participants recognized patients' families as a valuable part of the care team, particularly during events requiring escalation of care. Perceived barriers to communication included limited time spent at the bedside, and, at UNOP, language and literacy challenges which occasionally limited providers' ability to assess family concern and involve families in patient care. Despite these barriers, providers perceived PEWS improved communication by facilitating more interaction with families, allowing for relationship‐building, anticipatory guidance, and destigmatization of the PICU. PEWS assessments also allowed families to contribute to identification of deterioration. Conclusions: PEWS improve the quality of communication between providers and families by providing more opportunities for interaction, building relationships, and trust. These findings further support the use of PEWS in the care of children with cancer in hospitals of all resource‐levels. [ABSTRACT FROM AUTHOR]
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- 2023
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19. Multilevel impacts of a pediatric early warning system in resource-limited pediatric oncology hospitals.
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Mirochnick, Emily, Graetz, Dylan E., Ferrara, Gia, Puerto-Torres, Maria, Gillipelli, Srinithya R., Elish, Paul, Muniz-Talavera, Hilmarie, Gonzalez-Ruiz, Alejandra, Armenta, Miriam, Barra, Camila, Diaz-Coronado, Rosdali, Hernandez, Cinthia, Juarez, Susana, Jesus Loeza, Jose de, Mendez, Alejandra, Montalvo, Erika, Penafiel, Eulalia, Pineda, Estuardo, and Agulnik, Asya
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PEDIATRIC oncology ,PEDIATRIC nursing ,CHILDREN'S hospitals ,INTERDISCIPLINARY communication ,JOB satisfaction ,INTENSIVE care units - Abstract
Background: Pediatric Early Warning Systems (PEWS) reduce clinical deterioration, improve interdisciplinary communication, and provide cost savings; however, little is known about how these impacts are achieved or related. This study evaluates the multi-level impacts of PEWS in resourcelimited pediatric oncology centers. Methods: We conducted 71 semi-structured interviews including physicians (45%), nurses (45%), and administrators (10%) from 5 resource-limited pediatric oncology centers in 4 Latin American countries. Interviews were conducted in Spanish, transcribed, and translated into English. A code book was developed using a priori and inductively derived codes. Transcripts were independently coded by 2 coders, achieving a kappa of 0.8-0.9. Thematic content analysis explored perceived impacts of PEWS at the level of the patient, clinician, healthcare team, and institution. Results: PEWS improved the quality of attention for patients, reducing morbidity and mortality. Clinicians felt more knowledgeable, confident, and empowered providing patient care, resulting in greater job satisfaction. PEWS affected team dynamics by improving interdisciplinary (ward and intensive care unit) and interprofessional (physicians and nurses) relationships and communication. This ultimately led to institutional culture change with emphasis on patient safety, collaboration with other centers, and receipt of institutional awards. Together, these impacts led to hospital-wide support of ongoing PEWS use. Conclusions: In resource-limited hospitals, PEWS use results in multi-level positive impacts on patients, clinicians, teams, and institutions, creating a feedback loop that further supports ongoing PEWS use. These findings can guide advocacy for PEWS to various stakeholders, improve PEWS effectiveness, and inform assessment of other interventions to improve childhood cancer outcomes. [ABSTRACT FROM AUTHOR]
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- 2022
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20. A proposed global framework for pediatric cancer communication research.
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Graetz, Dylan E., Caceres‐Serrano, Ana, Radhakrishnan, Venkatraman, Salaverria, Carmen E., Kambugu, Joyce B., and Sisk, Bryan A.
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The authors introduce a functional communication framework that can be used for global pediatric cancer research. [ABSTRACT FROM AUTHOR]
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- 2022
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21. Impact of the COVID‐19 pandemic on pediatric oncology providers globally: A mixed‐methods study.
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Sniderman, Elizabeth R., Graetz, Dylan E., Agulnik, Asya, Ranadive, Radhikesh, Vedaraju, Yuvanesh, Chen, Yichen, Devidas, Meenakshi, Chantada, Guillermo L., Hessissen, Laila, Dalvi, Rashmi, Pritchard‐Jones, Kathy, Rodriguez‐Galindo, Carlos, Moreira, Daniel C., Bolous, Nancy S., Haidar, Cyrine E., Bihannic, Laure, Sa da Bandeira, Diana, Wang, Jade Xiaoqing, Li, Dongfang, and Graca, Flavia
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PEDIATRIC oncology , *COVID-19 pandemic , *MEDICAL personnel , *PEDIATRIC nursing , *ONCOLOGY nursing , *COVID-19 , *MEDICAL care - Abstract
Background: Coronavirus disease 2019 (COVID‐19) disrupted pediatric oncology care globally, increasing demands on health care providers (HCPs) who adapted to continue care. This study sought to characterize the pandemic's impact on pediatric oncology HCPs worldwide. Methods: A 60‐item survey focused on changes to clinical care, resources, and effects on clinicians. A diverse subgroup of institutions was purposefully selected for focus groups that explored teamwork, communication, and changes to care delivery. Results: The survey included 311 responses from 213 institutions representing 79 countries. Sixteen institutions participated in 19 multidisciplinary focus groups in 8 languages. Decreased clinical staff availability was cited by 51% of institutions as a major impact. Staffing modifications included decreased provider availability (66% of institutions), roles or responsibility changes, and transfer outside the specialty. Physical effects included frequent COVID‐19 illness; 8% of respondents reported HCP deaths. Fifty percent of providers did not have the necessary personal protective equipment. HCPs also experienced psychological distress and financial concerns. Findings indicated more frequent impact on nurses than other providers. Impacts were described across all hospital resource levels, with staffing modifications more frequent in countries with higher COVID‐19 incidence (P <.001) and mortality rate (P =.004). Focus groups revealed negative impacts were stabilized by increased teamwork, communication, contributions outside usual roles, policies aimed at optimizing safety, and feeling that they were contributing. Conclusions: COVID‐19 had a profound impact on the pediatric oncology workforce, creating challenging modifications to staffing and resulting in physical, psychological, and financial distress. Despite these challenges, HCPs caring for children with cancer came together to continue to provide high‐quality care. This mixed‐methods study reveals the impact that the coronavirus disease 2019 (COVID‐19) pandemic has had on pediatric oncology providers globally, and it highlights the importance of implementing strategies to protect the health care workforce during challenging situations. [ABSTRACT FROM AUTHOR]
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- 2022
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22. Utilizing Multilingual Methods and Rapid Analysis for Global Qualitative Research During a Pandemic.
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Graetz, Dylan E., Sniderman, Elizabeth, Villegas, Cesar, Ragab, Iman, Laptsevich, Aliaksandra, Maliti, Biemba, Naidu, Gita, Zhang, Hui, Gassant, Pascale, Nunes, Luciana, Arce, Daniela, Vasquez, Jacqueline Montoya, Arora, Ramandeep S, Alcasabas, Ana P, Rusmawatiningtyas, Desy, Raza, Muhammad Rafie, Hamid, Syed A, Velasco, Pablo, Kambugu, Joyce, and Vinitsky, Anna
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TEAMS in the workplace ,FOCUS groups ,RESEARCH protocols ,MULTILINGUALISM ,CROSS-sectional method ,RESEARCH methodology ,INTERVIEWING ,VIDEOCONFERENCING ,TUMORS in children ,QUALITATIVE research ,SURVEYS ,INTERPROFESSIONAL relations ,SOUND recordings ,JUDGMENT sampling ,COVID-19 pandemic ,PSYCHOLOGICAL resilience - Abstract
Historically, qualitative research has complemented quantitative biologic and epidemiologic studies to provide a more complete understanding of pandemics. The COVID-19 pandemic has generated unique and novel challenges for qualitative researchers, who have embraced creative solutions including virtual focus groups and rapid analyses to continue their work. We present our experience conducting a multilingual global qualitative study of healthcare resilience among teams of pediatric oncology professionals during the COVID-19 pandemic. We provide an in-depth description of our methodology and an analysis of factors we believe contributed to our study's success including our use of technology, engagement of a large multilingual team, global partnerships, and framework-based rapid analysis. We hope these techniques may be useful to qualitative researchers conducting studies during the current pandemic, as well as for all pediatric oncology studies including multiple languages or geographically disparate subjects. [ABSTRACT FROM AUTHOR]
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- 2022
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23. Resilient health care in global pediatric oncology during the COVID‐19 pandemic.
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Graetz, Dylan E., Sniderman, Elizabeth, Villegas, Cesar A., Kaye, Erica C., Ragab, Iman, Laptsevich, Aliaksandra, Maliti, Biemba, Naidu, Gita, Huang, Haiying, Gassant, Pascale Y., Nunes Silva, Luciana, Arce, Daniela, Montoya Vasquez, Jacqueline, Arora, Ramandeep Singh, Alcasabas, Ana Patricia, Rusmawatiningtyas, Desy, Raza, Muhammad Rafie, Velasco, Pablo, Kambugu, Joyce, and Vinitsky, Anna
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PEDIATRIC oncology , *ONCOLOGY nursing , *MEDICAL care , *COVID-19 pandemic , *PEDIATRIC nursing , *COVID-19 , *PEDIATRIC therapy - Abstract
Background: In the face of unprecedented challenges because of coronavirus disease 2019, interdisciplinary pediatric oncology teams have developed strategies to continue providing high‐quality cancer care. This study explored factors contributing to health care resilience as perceived by childhood cancer providers in all resource level settings. Methods: This qualitative study consisted of 19 focus groups conducted in 16 countries in 8 languages. Seven factors have been previously defined as important for resilient health care including: 1) in situ practical experience, 2) system design, 3) exposure to diverse views on the patient's situation, 4) protocols and checklists, 5) teamwork, 6) workarounds, and 7) trade‐offs. Rapid turn‐around analysis focused on these factors. Results: All factors of health care resilience were relevant to groups representing all resource settings. Focus group participants emphasized the importance of teamwork and a flexible and coordinated approach to care. Participants described collaboration within and among institutions, as well as partnerships with governmental, private, and nonprofit organizations. Hierarchies were advantageous to decision‐making and information dissemination. Clinicians were inspired by their patients and explained creative trade‐offs and workarounds used to maintain high‐quality care. Conclusions: Factors previously described as contributing to resilient health care manifested differently in each institution but were described in all resource settings. These insights can guide pediatric oncology teams worldwide as they provide cancer care during the next phases of the pandemic. Understanding these elements of resilience will also help providers respond to inevitable future stressors on health care systems. This multinational, multicenter, qualitative study illustrates how pediatric oncology providers used resilient health care strategies, illuminating creative solutions to mitigate impact, many of which may outlast the pandemic. [ABSTRACT FROM AUTHOR]
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- 2022
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24. Interdisciplinary care of pediatric oncology patients in Central America and the Caribbean.
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Graetz, Dylan E., Chen, Yichen, Devidas, Meenakshi, Antillon‐Klussmann, Federico, Fu, Ligia, Quintero, Karina, Fuentes‐Alabi, Soad L., Gassant, Pascale Y., Kaye, Erica C., Baker, Justin N., Rodriguez Galindo, Carlos, and Mack, Jennifer W.
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PEDIATRIC therapy , *PEDIATRIC oncology , *CHILD patients , *CANCER treatment , *JOB satisfaction , *ONCOLOGISTS , *PEDIATRIC nursing - Abstract
Background: Interdisciplinary teamwork supports high‐quality cancer care and effective utilization of limited resources. This study purposed to examine the value, structure, process, and effectiveness of interdisciplinary care (IDC) among pediatric oncology providers in low‐income and middle‐income countries in Central America and the Caribbean. Methods: A cross‐sectional survey was disseminated to pediatric oncology providers at 5 centers participating in the Pediatric Hematology‐Oncology Association of Central America. The survey included previously validated items and novel questions assessing the value (importance), structure (multidisciplinary meeting attendance), process (team climate), and effectiveness (job satisfaction, quality of care and communication) of IDC. Results: The survey was completed by 174 providers, including 22 oncologists, 9 pathologists, 9 radiologists, 5 radiation oncologists, 12 surgeons, 35 subspecialists, 60 nurses, 20 psychosocial providers, and 2 other staff. Participants agreed that IDC benefits team members (95%) and patients (96%). IDC structure and processes varied across the region. Multidisciplinary meeting attendance differed by center (P =.005) and discipline (P <.0001). Participants who frequently attended multidisciplinary meetings reported a more positive team climate (P =.0003). Team climate was positively associated with job satisfaction (P <.001). In multivariable analyses, team climate was predictive of an improved perception of communication between professionals (P <.0001), with families (P <.0001), and with patients (P =.0005), as well as with quality of the care environment (P =.006) and overall care quality (P <.0001). Conclusions: Nearly all surveyed participants valued IDC, and the structure and processes supporting IDC varied by center. Associations between a collaborative professional climate, job satisfaction, and the perception of quality care encourage continued investigation and prioritization of IDC in these settings. Structures and processes supporting interdisciplinary care for pediatric oncology patients in Central America and the Caribbean vary. Associations between a collaborative professional climate, job satisfaction, and perception of quality care support the continued investigation and prioritization of interdisciplinary care in these settings. [ABSTRACT FROM AUTHOR]
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- 2021
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25. Impact of PEWS on Perceived Quality of Care During Deterioration in Children With Cancer Hospitalized in Different Resource-Settings.
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Garza, Marcela, Graetz, Dylan E., Kaye, Erica C., Ferrara, Gia, Rodriguez, Mario, Soberanis Vásquez, Dora Judith, Méndez Aceituno, Alejandra, Antillon-Klussmann, Federico, Gattuso, Jami S., Mandrell, Belinda N., Baker, Justin N., Rodriguez-Galindo, Carlos, and Agulnik, Asya
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PEDIATRIC nursing ,HOSPITAL care of children ,HOSPITAL care quality ,CHILDHOOD cancer ,PERCEIVED quality ,CHILDREN'S hospitals ,PEDIATRIC oncology - Abstract
Background: Children with cancer are at high risk for clinical deterioration and subsequent mortality. Pediatric Early Warning Systems (PEWS) have proven to reduce the frequency of clinical deterioration in hospitalized patients. This qualitative study evaluates provider perspectives on the impact of PEWS on quality of care during deterioration events in a high-resource and a resource-limited setting. Methods: We conducted semi-structured interviews with 83 healthcare staff (nurses, pediatricians, oncology fellows, and intensivists) involved in recent deterioration events at two pediatric oncology hospitals of different resource levels: St. Jude Children's Research Hospital (SJCRH; n = 42) and Unidad Nacional de Oncología Pediátrica (UNOP; n = 41). Interviews were conducted in the participant's native language (English or Spanish), translated into English, and transcribed. Transcripts were coded and analyzed inductively. Results: Providers discussed both positive and negative perspectives of clinical deterioration events. Content analysis revealed "teamwork," "experience with deterioration," "early awareness," and "effective communication" as themes associated with positive perception of events, which contributed to patient safety. Negative themes included "lack of communication," "inexperience with deterioration," "challenges with technology", "limited material resources," "false positive score," and "objective tool." Participants representing all disciplines across both institutions shared similar positive opinions. Negative opinions, however, differed between the two institutions, with providers at UNOP highlighting limited resources while those at SJCRH expressing concerns about technology misuse. Conclusion: Providers that care for children with cancer find PEWS valuable to improve the quality of hospital care, regardless of hospital resource-level. Identified challenges, including inadequate critical care resources and challenges with technology, differ by hospital resource-level. These findings build on growing data demonstrating the positive impact of PEWS on quality of care and encourage wide dissemination of PEWS in clinical practice. [ABSTRACT FROM AUTHOR]
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- 2021
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26. Clinician Emotions Surrounding Pediatric Oncology Patient Deterioration.
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Graetz, Dylan E., Giannars, Emily, Kaye, Erica C., Garza, Marcela, Ferrara, Gia, Rodriguez, Mario, Soberanis Vasquez, Dora Judith, Mendez Aceituno, Alejandra, Antillon-Klussmann, Federico, Gattuso, Jami S., Andes, Karen L., Mandrell, Belinda N., Baker, Justin N., Rodriguez-Galindo, Carlos, and Agulnik, Asya
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MEDICAL personnel ,PEDIATRIC oncology ,CHILD patients ,PSYCHO-oncology ,CHILDREN'S hospitals - Abstract
Background: Pediatric oncology patients have a high rate of clinical deterioration frequently requiring critical care. Patient deterioration events are distressing for clinicians, but little is known about how Pediatric Early Warning Systems (PEWS) impact clinicians' emotional responses to deterioration events. Methods: Semi-structured interviews were conducted with 83 nurses, pediatricians, oncologists, and intensive care clinicians who had recently participated in a patient deterioration event at two pediatric oncology hospitals of different resource-levels: St. Jude Children's Research Hospital (N = 42 participants) in Memphis, Tennessee or Unidad Nacional de Oncología Pediátrica (N = 41 participants) in Guatemala City, Guatemala. Interviews were conducted in the participants' native language (English or Spanish), transcribed, and translated into English. Each transcript was coded by two researchers and analyzed for thematic content. Results: Emotions around patient deterioration including concern, fear, and frustration were reported across all disciplines at both hospitals. Concern was often triggered by an elevated PEWS score and usually resulted in increased attention, which reassured bedside clinicians that patients were receiving necessary interventions. However, persistently elevated PEWS scores, particularly at St. Jude Children's Research Hospital, occasionally resulted in a false sense of relief, diminishing clinician attention and negatively impacting patient care. Nurses at both institutions described how PEWS amplified their voices, engendering confidence and empowerment, two of the only positive emotions described in the study. Conclusion: Clinicians experienced a range of emotions while caring for high-risk patients in the setting of clinical deterioration. These emotions have the potential to contribute to compassion fatigue and burnout, or to resilience. Acknowledgment and further investigation of the complex interplay between PEWS and clinician emotions are necessary to maximize the impact of PEWS on patient safety while simultaneously supporting staff wellbeing. [ABSTRACT FROM AUTHOR]
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- 2021
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27. Role of implicit bias in pediatric cancer clinical trials and enrollment recommendations among pediatric oncology providers.
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Graetz, Dylan E., Madni, Arshia, Gossett, Jeffrey, Kang, Guolian, Sabin, Janice A., Santana, Victor M., and Russo, Carolyn L.
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PEDIATRIC oncology , *CLINICAL trials , *CHILDHOOD cancer , *CHILDREN'S hospitals , *RACISM , *CLINICAL trials monitoring , *PEDIATRIC hematology - Abstract
Background: Provider implicit bias can negatively affect clinician‐patient communication. In the current study, the authors measured implicit bias training among pediatric oncology providers and exposure to implicit association tests (IATs). They then assessed associations between IATs for race and socioeconomic status (SES) and recommendations for clinical trial enrollment. Methods: A prospective multisite study was performed to measure implicit bias among oncology providers at St. Jude Children's Research Hospital and affiliate clinics. An IAT was used to assess bias in the domains of race and SES. Case vignettes were used to determine an association between bias and provider recommendation for trial enrollment. Data were analyzed using Student t tests or Wilcoxon tests for comparisons and Jonckheere‐Terpstra tests were used for association. Results: Of the 105 total participants, 95 (90%) had not taken an IAT and 97 (92%) had no prior implicit bias training. A large effect was found for (bias toward) high SES (Cohen d, 1.93) and European American race (Cohen d, 0.96). The majority of participants (90%) had a vignette score of 3 or 4, indicating recommendation for trial enrollment for most or all vignettes. IAT and vignette scores did not significantly differ between providers at St. Jude Children's Research Hospital or affiliate clinics. No association was found between IAT and vignette scores for race (P =.58) or SES (P =.82). Conclusions: The authors noted a paucity of prior exposure to implicit bias self‐assessments and training. Although these providers demonstrated preferences for high SES and European American race, this did not appear to affect recommendations for clinical trial enrollment as assessed by vignettes. The current multisite study measures implicit bias in the domains of race and socioeconomic status among pediatric oncology providers in an academic center and community‐based practices. The impact of implicit bias in clinical trial enrollment is assessed using case vignettes. [ABSTRACT FROM AUTHOR]
- Published
- 2021
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28. Pediatric cancer communication in low‐ and middle‐income countries: A scoping review.
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Graetz, Dylan E., Garza, Marcela, Rodriguez‐Galindo, Carlos, and Mack, Jennifer W.
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MIDDLE-income countries , *CHILDHOOD cancer , *HEALTH care teams , *HIGH-income countries , *FAMILY relations - Abstract
The burden of global childhood cancer lies in low‐ and middle‐income countries (LMICs). Communication is essential to pediatric cancer care, and the National Cancer Institute (NCI) has defined 6 functions of communication between patients, family members, and providers, including 1) fostering healing relationships, 2) responding to emotions, 3) exchanging information, 4) making decisions, 5) managing uncertainty, and 6) enabling self‐management. Nevertheless, communication needs and practices in LMICs remain incompletely understood. For this review, the Web of Science, Scopus, PubMed, and Turning Research Into Practice databases were searched according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analysis Extension for Scoping Reviews. Searching identified 2988 articles, with 11 added through snowballing. Forty articles met the inclusion criteria. Two reviewers extracted data on study characteristics, communication functions, enablers, barriers, and additional major themes. This review included work from 17 countries. Most studies (85%) used qualitative methodology; the number of participants ranged from 7 to 304. All 6 of the NCI‐defined communication functions were identified in included studies, with rates ranging from 100% of studies for information exchange to 28% of studies for decision making. Communication barriers included cancer misconceptions, stigma, and hierarchy between parents and providers. Provider training and community education facilitated communication. Additional themes included disclosure to children, family dynamics, and the multidisciplinary health care team. In conclusion, all 6 of the communication functions defined by the NCI were applied by pediatric cancer researchers in LMICs. Additional barriers, enablers, and communication themes noted in LMICs deserve further exploration, and a relative paucity of research in comparison with high‐income countries highlights the need for further work. This is a scoping review of pediatric cancer communication in low‐ and middle‐income countries. It includes communication functions, barriers, and enablers and highlights the need for further research. [ABSTRACT FROM AUTHOR]
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- 2020
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29. Barriers to the early integration of palliative care in pediatric oncology in 11 Eurasian countries.
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Ehrlich, Bella S., Movsisyan, Narine, Batmunkh, Tsetsegsaikhan, Kumirova, Ella, Borisevich, Marina V., Kirgizov, Kirill, Graetz, Dylan E., McNeil, Michael J., Yakimkova, Taisiya, Vinitsky, Anna, Ferrara, Gia, Li, Chen, Lu, Zhaohua, Kaye, Erica C., Baker, Justin N., and Agulnik, Asya
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PALLIATIVE treatment ,CHILDHOOD cancer ,PEDIATRIC hematology ,LOW-income countries ,MIDDLE-income countries ,CANCER patient care ,ATTITUDE (Psychology) - Abstract
Background: The early integration of palliative care significantly improves quality of life for children with cancer. However, cultural, structural, and socioeconomic barriers can delay the integration of palliative care into cancer care, particularly in low‐income and middle‐income countries. To date, little is known regarding the timing of and barriers to palliative care integration in Eurasia. Methods: The Assessing Doctors' Attitudes on Palliative Treatment (ADAPT) survey evaluates physician perceptions regarding palliative care integration into pediatric oncology in Eurasia. This evidence‐based survey was adapted to the regional context; iteratively reviewed by US and regional panelists; and piloted in English, Russian, and Mongolian. After distribution to physicians caring for children with cancer, statistical analysis was complemented by qualitative analysis of open‐ended responses. Results: A total of 424 physician responses were received from 11 countries in the Eurasian region. Study findings demonstrated wide variability in access to palliative care experts across countries (18%‐96%), with the majority of providers (64%) reporting that the initial palliative care consultation typically occurs when curative options are no longer available. Providers desired an earlier initial palliative care consultation than what currently occurs in their setting (P <.001). Primary barriers to timely consultation included limited access to palliative care services and specialists, lack of physician education, and perceived family resistance. Conclusions: The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care and associated barriers in Eurasia. These findings will inform the development of targeted interventions to mitigate local structural and cultural barriers to access and facilitate earlier palliative care integration in the region. The current study is the first to identify physician perceptions of the delayed timing of palliative care integration into childhood cancer care in Eurasia. Primary barriers to timely consultation included limited access to palliative care services and specialists, a lack of physician education, and perceived family resistance. [ABSTRACT FROM AUTHOR]
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- 2020
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30. A multicountry assessment in Eurasia: Alignment of physician perspectives on palliative care integration in pediatric oncology with World Health Organization guidelines.
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Ehrlich, Bella S., Movsisyan, Narine, Batmunkh, Tsetsegsaikhan, Kumirova, Ella, Borisevich, Marina V., Kirgizov, Kirill, Graetz, Dylan E., McNeil, Michael J., Yakimkova, Taisiya, Vinitsky, Anna, Ferrara, Gia, Li, Chen, Lu, Zhaohua, Kaye, Erica C., Baker, Justin N., Agulnik, Asya, and ADAPT Research Group
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PALLIATIVE treatment ,CHILDHOOD cancer ,WORLD health ,PHYSICIANS ,HEALTH literacy ,PEDIATRIC hematology ,ONCOLOGISTS ,TUMORS & psychology ,TUMOR treatment ,RESEARCH ,TERMINAL care ,ATTITUDE (Psychology) ,RESEARCH methodology ,PEDIATRICS ,MEDICAL personnel ,MEDICAL cooperation ,EVALUATION research ,MEDICAL protocols ,COMPARATIVE studies ,QUESTIONNAIRES ,RESEARCH funding ,TUMORS ,POVERTY ,ONCOLOGY ,PSYCHOLOGY of physicians - Abstract
Background: The World Health Organization (WHO) advocates for early integration of palliative care for all children with life-threatening illness. Provider awareness and misperceptions, however, can impede this imperative. In the Eurasian region, little is known about physician knowledge and perspectives on palliative care.Methods: The Assessing Doctors' Attitudes on Palliative Treatment survey was developed as an evidence-based and culturally relevant assessment of physician perceptions on palliative care integration into childhood cancer care in Eurasia. Iteratively tested by American and Eurasian palliative care experts, the survey was culturally adapted, translated, and piloted in English, Russian, and Mongolian. The survey was distributed to physicians caring for children with cancer. Fifteen statements were scored in accordance with WHO guidelines to evaluate provider knowledge. The statistical analysis was complemented by a qualitative analysis of open-ended responses.Results: This study received 424 responses from 11 countries in Eurasia. The mean alignment between provider perspectives and WHO recommendations was 70% (range, 7%-100%). Significant independent predictors of higher alignment included country, prior palliative care education, and greater experience with patient death. Respondents primarily described palliative care as end-of-life care and symptom management. Two-thirds of respondents (67%) reported not feeling confident about delivering at least 1 component of palliative care.Conclusions: This is the first study assessing physician perspectives and knowledge of palliative care in Eurasia and reveals wide variability in alignment with WHO guidelines and limited confidence in providing palliative care. Study findings will inform targeted educational interventions, which must be tailored to the local political, economic, and cultural context. [ABSTRACT FROM AUTHOR]- Published
- 2020
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31. Finding Grace in Grief.
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Graetz, Dylan E.
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- 2020
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32. Assessment of Barriers and Enablers to Implementation of a Pediatric Early Warning System in Resource-Limited Settings.
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Agulnik, Asya, Ferrara, Gia, Puerto-Torres, Maria, Gillipelli, Srinithya R., Elish, Paul, Muniz-Talavera, Hilmarie, Gonzalez-Ruiz, Alejandra, Armenta, Miriam, Barra, Camila, Diaz, Rosdali, Hernandez, Cinthia, Juárez Tobias, Susana, de Jesus Loeza, Jose, Mendez, Alejandra, Montalvo, Erika, Penafiel, Eulalia, Pineda, Estuardo, and Graetz, Dylan E.
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- 2022
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33. Physician Perceptions of Palliative Care for Children With Cancer in Latin America.
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McNeil, Michael J., Ehrlich, Bella S., Wang, Huiqi, Vedaraju, Yuvanesh, Bustamante, Marisol, Dussel, Veronica, Friedrich, Paola, Garcia Quintero, Ximena, Gillipelli, Srinithya R., Gomez Garcia, Wendy, Graetz, Dylan E., Kaye, Erica C., Metzger, Monika L., Sabato Danon, Carla Vittoria, Devidas, Meenakshi, Baker, Justin N., and Agulnik, Asya
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- 2022
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34. Finding Grace in Grief.
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Graetz, Dylan E
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- 2019
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35. Measuring Stigma in Pediatric Oncology: A Cross-Sectional Analysis of Three Global Sites.
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Counts LE, Tanner RS, Chen Y, Devidas M, Ferrara G, Chitsike I, Chokwenda N, Matsikidze E, Cáceres-Serrano AM, Fuentes L, Herrera TV, Halalsheh H, Fraihat N, Bhakta N, Jeha S, Santana VM, Malone SM, and Graetz DE
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- Humans, Cross-Sectional Studies, Male, Female, Adolescent, Child, Guatemala epidemiology, Zimbabwe epidemiology, Jordan epidemiology, Neoplasms psychology, Medical Oncology, Surveys and Questionnaires, Retinoblastoma psychology, Adult, Social Stigma, Caregivers psychology, Caregivers statistics & numerical data
- Abstract
Purpose: Stigma contributes to fear and shame, resulting in delays in care-seeking behavior among individuals with cancer. As a social construct, stigma is affected by language, religion, culture, and local norms. This study explored pediatric cancer stigma at the time of diagnosis across diverse settings through the adaptation of two stigma measures., Methods: This study was conducted with adolescents and caregivers of children with osteosarcoma and retinoblastoma at three centers in Jordan, Guatemala, and Zimbabwe. The Stigma-related Social Problems (SSP) and the eight-item Stigma Scale for Chronic Illness (SSCI-8) measures were translated into Arabic, Spanish, and Shona and contextually adapted for use with adolescents and caregiver proxies. Adapted measures were pilot-tested and iteratively revised., Results: Extensive adaptations were made to both measures to make them relevant to the local pediatric contexts. The final measures were used in nine patients and 28 caregivers. The exploratory analysis found that domain-specific and overall scale scores for both measures indicate a higher level of stigma than those found in previous studies (SSP: patient [51.23], caregiver [40.74]; SSCI-8: patient [50.41], caregiver [49.78]). Paired, patient-caregiver proxy responses were analyzed, with disagreement between the pairs for both scales., Conclusion: Adapted measures detected high levels of stigma among patients with pediatric cancer and their caregiver proxies and demonstrated a lack of concordance in the reports. This suggests the importance of studying stigma in this population and the need to ask patients about their stigma without using proxy measures. The required adaptations suggest a need for stigma measures developed specifically for pediatric cancer.
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- 2025
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36. Explanatory models in real-world clinical interactions at a pediatric cancer center in Guatemala.
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Harrison LC, Rivas S, Fuentes L, Cáceres-Serrano A, Ferrara G, Antillon-Klussmann F, Rodriguez-Galindo C, Mack JW, and Graetz DE
- Abstract
Explanatory models (EMs) are used in medical anthropology to characterize individual understandings of illness. This study investigated how interdisciplinary clinical interactions elicited caregiver EMs at a pediatric cancer center in Guatemala. This qualitative study included caregivers of 20 children with newly diagnosed cancer at Unidad Nacional de Oncología Pediátrica (UNOP) in Guatemala City, Guatemala. UNOP's diagnostic process includes social work intake, psychoeducation with a psychologist, and a diagnostic conversation with an oncologist and psychologist. Audio-recordings from the diagnostic process and a semi-structured interview were obtained, transcribed, and translated from Spanish. Transcripts were coded using a priori codes based on the five explanatory model (EM) components (occurrence, causation, pathophysiology, course of sickness, and treatment), as well as disease, and illness accounts. Thematic content analysis explored the EM framework as applied to diagnostic interactions between families and clinicians. All five components of the EM were addressed during the diagnostic process at UNOP. Clinicians, particularly psychologists, initiated conversation about the EM more than caregivers. When prompted, caregivers discussed all aspects of the EM but only rarely mentioned pathophysiology. Disease accounts were primarily described by clinicians, while caregivers used illness accounts to describe cancer causation. Clinicians validated existence of both disease and illness accounts. UNOP's interdisciplinary team elicited families' beliefs and facilitated in-depth discussion of all aspects of the EM, leading to a shared understanding of cancer and its treatment. Utilizing the EM framework in clinical practice may support culturally-competent pediatric cancer care., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Harrison et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)
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- 2024
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37. Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe.
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Graetz DE, Velasquez T, Chitsike I, Halalsheh H, Cáceres-Serrano A, Fuentes L, Chokwenda N, Matsikidze E, Ferrara G, Bilbeisi T, Williams A, Bhakta N, Jeha S, Rodriguez Galindo C, Mack JW, and Santana VM
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- Humans, Adolescent, Guatemala, Child, Female, Male, Zimbabwe, Young Adult, Adult, Caregivers psychology, Social Stigma, Retinoblastoma psychology, Osteosarcoma psychology
- Abstract
Purpose: Stigma is an understudied barrier to health care acceptance in pediatric oncology. We sought to explore the stigma experience, including its impact on cancer treatment decision making, and identify strategies to mitigate stigma for patients with osteosarcoma and retinoblastoma in Guatemala, Jordan, and Zimbabwe., Methods: Participants included caregivers, adolescent patients (age 12-19 years), and health care clinicians. A semistructured interview guide based on The Health Stigma and Discrimination Framework (HSDF) was adapted for use at each site. Interviews were conducted in English, Spanish, Arabic, or Shona, audio-recorded, translated, and transcribed. Thematic analysis focused on stigma practices, experiences, outcomes, drivers, mitigators, and interventions., Results: We conducted 56 interviews (28 caregivers, 19 health care clinicians, nine patients; 20 in Guatemala, 21 in Jordan, 15 in Zimbabwe). Major themes were organized into categories used to adapt the HSDF to global pediatric cancer care. Themes were described similarly across all sites, ages, and diagnoses, with specific cultural nuances noted. Pediatric cancer stigma was depicted as an isolating and emotional experience beginning at diagnosis and including internalized and associative stigma. Stigma affected decision making and contributed to negative outcomes including delayed diagnosis, treatment abandonment, regret, and psychosocial fragility. Overcoming stigma led to positive outcomes including resilience, treatment adherence, pride, and advocacy. Identified stigma drivers and mitigators were linked to potential interventions., Conclusion: Participants describe a shared stigma experience that transcends geography, cultural context, age, and diagnosis. Stigma manifestations have the potential to impact medical decision making and affect long-term psychological outcomes. Stigma assessment tools and interventions aimed at stigma mitigation including educational initiatives and support groups specific to pediatric cancer should be the focus of future research.
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- 2024
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38. CritCom: assessment of quality of interdisciplinary communication around deterioration in pediatric oncologic patients.
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Rivera J, Malone S, Puerto-Torres M, Prewitt K, Counts L, Wiphatphumiprates P, Sakaan F, Al Zebin Z, Arias AV, Bhattacharyya P, Gunasekera S, Johnson S, Kambugu J, Kaye EC, Mandrell B, Mack J, McArthur J, Mendez A, Morrissey L, Sharara-Chami R, Snaman J, Sniderman E, Luke DA, Graetz DE, and Agulnik A
- Abstract
Background: High-quality clinical care requires excellent interdisciplinary communication, especially during emergencies, and no tools exist to evaluate communication in critical care. We describe the development of a pragmatic tool focusing on interdisciplinary communication during patient deterioration (CritCom)., Methods: The preliminary CritCom tool was developed after a literature review and consultation with a multidisciplinary panel of global experts in communication, pediatric oncology, and critical care to review the domains and establish content validity iteratively. Face and linguistic validity were established through cognitive interviews, translation, and linguistic synthesis. We conducted a pilot study among an international group of clinicians to establish reliability and usability., Results: After reviewing 105 potential survey items, we identified 52 items across seven domains. These were refined through cognitive interviews with 36 clinicians from 15 countries. CritCom was piloted with 433 clinicians (58% nurses, 36% physicians, and 6% other) from 42 hospitals in 22 countries. Psychometric testing guided the refinement of the items for the final tool. CritCom comprised six domains with five items each (30 total). The final tool has excellent reliability (Cronbach's alpha 0.81-0.86), usability (93% agree or strongly agree that the tool is easy to use), and similar performance between English and Spanish tools. Confirmatory factor analysis was used to establish the final 6-domain structure., Conclusions: CritCom is a reliable and pragmatic bilingual tool to assess the quality of interdisciplinary communication around patient deterioration for children in diverse resource levels globally. Critcom results can be used to design and evaluate interventions to improve team communication., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Rivera, Malone, Puerto-Torres, Prewitt, Counts, Wiphatphumiprates, Sakaan, Al Zebin, Arias, Bhattacharyya, Gunasekera, Johnson, Kambugu, Kaye, Mandrell, Mack, McArthur, Mendez, Morrissey, Sharara-Chami, Snaman, Sniderman, Luke, Graetz and Agulnik.)
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- 2023
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39. A new measure for multi-professional medical team communication: design and methodology for multilingual measurement development.
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Malone S, Rivera J, Puerto-Torres M, Prewitt K, Sakaan F, Counts L, Al Zebin Z, Arias AV, Bhattacharyya P, Gunasekera S, Johnson S, Kambugu J, Kaye EC, Mandrell B, Mack JW, McArthur J, Mendez A, Morrissey L, Sharara-Chami R, Snaman J, Sniderman E, Luke DA, Graetz DE, and Agulnik A
- Abstract
Background: As implementation science in global health continues to evolve, there is a need for valid and reliable measures that consider diverse linguistic and cultural contexts. A standardized, reproducible process for multilingual measure development may improve accessibility and validity by participants in global health settings. To address this need, we propose a rigorous methodology for multilingual measurement development. We use the example of a novel measure of multi-professional team communication quality, a determinant of implementation efforts., Methods: The development and translation of this novel bilingual measure is comprised of seven steps. In this paper, we describe a measure developed in English and Spanish, however, this approach is not language specific. Participants are engaged throughout the process: first, an interprofessional panel of experts and second, through cognitive interviewing for measure refinement. The steps of measure development included: (1) literature review to identify previous measures of team communication; (2) development of an initial measure by the expert panel; (3) cognitive interviewing in a phased approach with the first language (English); (4): formal, forward-backward translation process with attention to colloquialisms and regional differences in languages; (5) cognitive interviewing repeated in the second language (Spanish); (6) language synthesis to refine both instruments and unify feedback; and (7) final review of the refined measure by the expert panel., Results: A draft measure to assess quality of multi-professional team communication was developed in Spanish and English, consisting of 52 questions in 7 domains. This measure is now ready for psychometric testing., Conclusions: This seven-step, rigorous process of multilingual measure development can be used in a variety of linguistic and resource settings. This method ensures development of valid and reliable tools to collect data from a wide range of participants, including those who have historically been excluded due to language barriers. Use of this method will increase both rigor and accessibility of measurement in implementation science and advance equity in research and practice., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (© 2023 Malone, Rivera, Puerto-Torres, Prewitt, Sakaan, Counts, Al Zebin, Arias, Bhattacharyya, Gunasekera, Johnson, Kambugu, Kaye, Mandrell, Mack, McArthur, Mendez, Morrissey, Sharara-Chami, Snaman, Sniderman, Luke, Graetz and Agulnik.)
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- 2023
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40. Communication transforms the impact of the COVID-19 pandemic on children with cancer and their families.
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Ferrara G, Aguina M, Mirochnick E, Wiphatphumiprates P, Moreira DC, Sniderman E, Villegas CA, Kaye EC, Ragab I, Maliti B, Naidu G, Gassant PY, Arce D, Arora RS, Alcasabas AP, Raza MR, Velasco P, Kambugu J, Vinitsky A, Rodriguez Galindo C, Agulnik A, and Graetz DE
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- Humans, Child, Pandemics, Communication, Language, COVID-19 epidemiology, Neoplasms epidemiology, Neoplasms therapy
- Abstract
Background: The COVID-19 pandemic altered healthcare systems globally, causing delays in care delivery and increased anxiety among patients and families. This study examined how hospital stakeholders and clinicians perceived the global impact of the COVID-19 pandemic on children with cancer and their families., Methods: This secondary analysis examined data from a qualitative study consisting of 19 focus groups conducted in 8 languages throughout 16 countries. A codebook was developed with novel codes derived inductively from transcript review. In-depth analysis focused on the impact of the COVID-19 pandemic on children with cancer and their families., Results: Eight themes describing the impact of the pandemic on patients and their families were identified and classified into three domains: contributing factors (COVID-19 Policies, Cancer Treatment Modifications, COVID-19 Symptoms, Beliefs), patient-related impacts (Quality of Care, Psychosocial impacts, Treatment Reluctance), and the central transformer (Communication). Participants described the ability of communication to transform the effect of contributing factors on patient-related impacts. The valence of impacts depended on the quality and quantity of communication among clinicians and between clinicians and patients and families., Conclusions: Communication served as the central factor impacting whether the COVID-19 pandemic positively or negatively affected children with cancer and families. These findings emphasize the key role communication plays in delivering patient-centered care and can guide future development of communication-centered interventions globally., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)
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- 2023
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41. Challenges to sustainability of pediatric early warning systems (PEWS) in low-resource hospitals in Latin America.
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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, and McKay V
- Abstract
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., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (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.)
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- 2022
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42. Development and Adaptation of a Patient-Centered Communication Survey for Parents of Children With Cancer in Guatemala.
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Graetz DE, Rivas SE, Fuentes AL, Caceres-Serrano A, Antillon-Klussmann F, Rodriguez-Galindo C, and Mack JW
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- Child, Communication, Guatemala, Humans, Patient-Centered Care, United States, Neoplasms diagnosis, Neoplasms therapy, Parents psychology
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Purpose: Surveys to assess patient and family experiences of pediatric cancer care have been primarily developed and validated in high-income Western settings with English-speaking participants. However, 90% of children with cancer live in low- and middle-income countries. We sought to develop a survey focused on pediatric cancer communication for use in a low-literacy population in Guatemala, including adaptation of many previously validated items., Methods: A multidisciplinary team developed a quantitative survey on the basis of a theoretical model of important components and influences on pediatric cancer communication. The original survey included established items previously used in high-income settings and novel questions designed for this study. The survey was translated into Spanish and pilot tested with parents of children receiving treatment at Unidad Nacional de Oncologia Pediatrica in Guatemala City, Guatemala, from April-June 2019. Cognitive interviews were used during pilot testing, and the survey was iteratively revised throughout this process., Results: Early in testing, Guatemalan parents tended to choose answers at the extreme ends of response categories and socially desirable responses. Ultimately, a visual aid was developed to accompany three-item Likert scale response options. This allowed for successful administration of the survey instrument, resulting in moderate variation of response options and similar proportions to those generated when the original five-item responses were used in parent populations from the United States., Conclusion: Appropriately adapted surveys are necessary to understand patient-centered communication among pediatric oncology populations in low- and middle-income countries. Eventual validation of such tools will enable cross-cultural studies and comparative analysis of results.
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- 2022
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43. Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study.
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Graetz DE, Rivas S, Wang H, Vedaraju Y, Ferrara G, Fuentes L, Cáceres-Serrano A, Antillon-Klussmann F, Devidas M, Metzger M, Rodriguez-Galindo C, and Mack JW
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- Child, Female, Guatemala, Humans, Infant, Parents, Surveys and Questionnaires, Decision Making, Neoplasms therapy
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Objectives: To examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala., Setting: This study was conducted at Guatemala's National Pediatric Cancer Center in Guatemala City., Participants: Spanish-speaking parents of paediatric patients (≤18 years of age) diagnosed with any form of cancer within the 8 weeks prior to study enrolment. The quantitative portion of this study included 100 parent participants; the qualitative component included 20 parents. Most participants were Catholic or Evangelical Spanish-speaking mothers., Outcomes: Priorities and experiences of cancer treatment decision-making including decision-making role and experienced regret., Results: A range of paediatric ages and cancer diagnoses were included. Most Guatemalan parents surveyed (70%) made decisions about their child's cancer together and almost all (94%) without input from their community. Surveyed parents predominately preferred shared decision-making with their child's oncologist (76%), however 69% agreed it was best not to be provided with many options. Two-thirds of surveyed parents (65%) held their preferred role in decision-making, with fathers more likely to hold their preferred role than mothers (p=0.02). A small number of parents (11%) experienced heightened decisional regret, which did not correlate with socio-demographic characteristics or preferred decision-making role. Qualitative results supported quantitative findings, demonstrating a decision-making process that emphasised trust and honesty., Conclusions: Guatemalan parents preferred to make decisions with their medical team and appreciated providers who were honest and inclusive, but directive about decisions. This study reinforces the importance of the provider-parent relationship and encourages clinicians in all settings to ask about and honour each parent's desired role in decision-making., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2022
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