Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 22
Filtrar
1.
Nutr Cancer ; 76(10): 994-1000, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39033402

RESUMO

During treatment, children with acute lymphoblastic leukemia (ALL) gain fat mass and lose skeletal muscle mass. The great majority live in low- and middle-income countries with few studies of their body composition and none addressing the hypothesis that the disease itself contributes to nutritional morbidity. At diagnosis, children with ALL were compared to their siblings on socioeconomic status (SES). Nutritional status was assessed by mid-upper arm circumference (MUAC)-for-age Z scores and body composition by dual energy x-ray absorptiometry (DXA). Median SES scores for the patients (47.5) and their siblings (47.0) were very similar (P = 0.5). MUAC Z scores for patients aged >5 years were lower than for siblings (P < 0.001). On DXA siblings had a higher mean appendicular lean mass index Z score, a surrogate of skeletal muscle mass, than patients (P = 0.019). A logistic model to estimate the odds ratio (OR) of being severely/moderately under-nourished (classified by MUAC Z score) by SES revealed that, compared with siblings (n = 49), children with ALL (n = 60) had a higher probability of being under-nourished (OR 5.25, 95% CI 1.44-25.95, P = 0.02). The results support the hypothesis that children at diagnosis of ALL in Guatemala are more nutritionally depleted than their apparently healthy siblings.


Assuntos
Absorciometria de Fóton , Composição Corporal , Estado Nutricional , Leucemia-Linfoma Linfoblástico de Células Precursoras , Irmãos , Humanos , Guatemala , Masculino , Feminino , Criança , Adolescente , Pré-Escolar , Músculo Esquelético
2.
Pediatr Blood Cancer ; 71(10): e31227, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39054688

RESUMO

BACKGROUND: Effective communication is founded on bidirectional participation from families and healthcare providers. In adult medicine, bidirectional communication promotes treatment adherence and builds the family-provider relationship. However, the relationship between communication styles in pediatrics remains poorly understood, particularly in culturally diverse settings. This study aims to investigate parent-provider communication dynamics and parental involvement during diagnostic cancer communication in Guatemala. PROCEDURE: This qualitative study included 20 families of children with cancer and 10 providers at Unidad Nacional de Oncología Pediátrica in Guatemala. Psychoeducation and diagnostic conversations between parents, psychologists, and oncologists were recorded and thematically analyzed using a priori and novel codes exploring communication behaviors, parental engagement, and interpersonal dynamics. RESULTS: Participating parents had children with various diagnoses. Only 15% of fathers and 5% of mothers reported education beyond primary school. Providers spoke 68% of words during psychoeducation and 85% of words during diagnosis conversations. Providers used supportive communication behaviors providing explanations, demonstrating verbal attentiveness, and soliciting questions and non-supportive behaviors including paternalistic talk. Parental participation was considered active when they asked questions, expressed hopes or concerns, or asserted their opinions, and non-active when participation was limited to brief responses to closed-ended questions. Supportive provider communication often encouraged active participation; non-supportive communication did not. Furthermore, active parental participation prompted supportive communication from providers, while non-active participation did not. CONCLUSIONS: Our findings highlight the bidirectional nature of effective communication, establishing that provider communication styles both influence and are influenced by parental participation, and emphasizing the importance of supportive provider communication for patient-centered care.


Assuntos
Comunicação , Neoplasias , Pais , Relações Profissional-Família , Pesquisa Qualitativa , Humanos , Masculino , Feminino , Criança , Neoplasias/psicologia , Neoplasias/diagnóstico , Neoplasias/terapia , Guatemala , Adulto , Pais/psicologia , Adolescente , Pré-Escolar , Lactente , Oncologia , Pessoal de Saúde/psicologia
3.
JCO Glob Oncol ; 10: e2300474, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38870436

RESUMO

PURPOSE: This study aimed to describe and assess the regional experience of a pediatric hematology/oncology fellowship program based in Guatemala. METHODS: The Unidad Nacional de Oncología Pediátrica (UNOP) in Guatemala City, Guatemala, is the only hospital in Central America dedicated exclusively to childhood and adolescent cancer. To address the regional need for specialists, a fellowship program in pediatric hematology/oncology was launched in 2003. The UNOP fellowship program comprises 3 years of training. Although the program is based at UNOP, it also includes rotations locally and internationally to enhance clinical exposure. The curriculum is based on international standards to cover clinical expertise, research, professionalism, communication, and health advocacy. Trainees are selected according to country or facility-level need for pediatric hematologists/oncologists, with a plan for them to be hired immediately after completing their training. RESULTS: Forty physicians from 10 countries in Latin America have completed training. In addition, there are currently 13 fellows from five countries in training. Of the graduates, 39 (98%) are now practicing in pediatric hematology/oncology in Latin America. Moreover, many of them have leadership positions within their institutions and participate in research, advocacy, and policy making. Graduates from the UNOP program contribute to institutions by providing care for an increasing number of patients with pediatric cancer. The UNOP program is the first pediatric hematology/oncology fellowship program in the world to be accredited by Accreditation Council for Graduate Medical Education-International, an international body accrediting clinical training programs. CONCLUSION: The UNOP program has trained specialists to increase the available care for children with cancer in Latin America. This regional approach to specialist training can maximize resources and serve as a model for other programs and regions.


Assuntos
Bolsas de Estudo , Hematologia , Oncologia , Pediatria , Humanos , Guatemala , Hematologia/educação , Bolsas de Estudo/organização & administração , Oncologia/educação , Pediatria/educação , Criança , Adolescente , Neoplasias , Feminino
4.
Pediatr Blood Cancer ; 70(5): e30244, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36788461

RESUMO

BACKGROUND: Quality cancer care depends on interdisciplinary communication. This study explored the communication practices of interdisciplinary clinicians, the types of healthcare services for which they engage in interdisciplinary collaboration, and the association between interdisciplinary care and perceived quality of care, as well as job satisfaction. METHODS: We conducted a survey of interdisciplinary clinicians from cancer centers in Guatemala, Honduras, Panama, El Salvador, and Haiti. The survey included 68 items including previously validated tools and novel questions. RESULTS: Total 174 interdisciplinary clinicians completed the survey: nurses (n = 60), medical subspecialists (n = 35), oncologists (n = 22), psychosocial providers (n = 20), surgeons (n = 12), pathologists (n = 9), radiologists (n = 9), and radiation oncologists (n = 5). Oncologists reported daily communication with nurses (95%) and other oncologists (91%). While 90% of nurses reported daily communication with other nurses, only 66% reported daily communication with oncologists, and more than 50% of nurses reported never talking to pathologists, radiologists, radiation oncologists, or surgeons. Most clinicians described interdisciplinary establishment of cancer treatment goals and prognosis (84%), patient preferences (81%), and determination of first treatment modality (80%). Clinicians who described more interdisciplinary collaboration had higher job satisfaction (p = .04) and perceived a higher level of overall quality of care (p = .004). CONCLUSIONS: Clinicians in these limited resource settings describe strong interdisciplinary collaboration contributing to higher job satisfaction and perceived quality of care. However, nurses in these settings reported more limited interdisciplinary communication and care. Additional studies are necessary to further define clinical roles on interdisciplinary care teams and their associations with patient outcomes.


Assuntos
Oncologia , Neoplasias , Criança , Humanos , Neoplasias/terapia , Comunicação Interdisciplinar , Região do Caribe , América Central
5.
Cancer Med ; 12(8): 9966-9975, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36846975

RESUMO

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.


Assuntos
Neoplasias , Pais , Humanos , Criança , Neoplasias/diagnóstico , Neoplasias/terapia , Oncologia , Comunicação , Medo
6.
JCO Glob Oncol ; 8: e2200124, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-36179269

RESUMO

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.


Assuntos
Neoplasias , Pais , Criança , Comunicação , Guatemala , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Pais/psicologia , Assistência Centrada no Paciente , Estados Unidos
7.
BMJ Open ; 12(8): e057350, 2022 08 11.
Artigo em Inglês | MEDLINE | ID: mdl-35953257

RESUMO

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.


Assuntos
Tomada de Decisões , Neoplasias , Criança , Feminino , Guatemala , Humanos , Lactente , Neoplasias/terapia , Pais , Inquéritos e Questionários
8.
JCO Glob Oncol ; 7: 1529-1536, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-34748391

RESUMO

PURPOSE: Although > 90% of children with cancer live in low- and middle-income countries, little is known about communication priorities and experiences of families in these settings. We examined communication priorities and the quality of information exchange for Guatemalan caregivers of children with cancer during diagnostic communication. METHODS: A cross-sectional survey including items used in pediatric communication studies from high-income countries and novel questions was verbally administered to 100 caregivers of children with cancer in Guatemala. RESULTS: Guatemalan caregivers prioritized communication functions of exchanging information (99%), fostering healing relationships (98%), decision making (97%), enabling self-management (96%), and managing uncertainty (94%) over responding to emotions (66%) and cultural awareness (48%). Almost all caregivers wanted as many details as possible about their child's diagnosis and treatment (96%), likelihood of cure (99%), and late effects (97%). Only 67% were always given the information they needed without asking for it, and most caregivers sometimes (56%) or always (18%) had questions they wanted to discuss but did not. Approximately half of the caregivers (54%) correctly identified their child's diagnosis, primary site, disease extent (localized v metastatic), proposed treatment length, and treatment intent (curative v palliative). Caregivers of children with leukemia were more likely to correctly identify all attributes than those whose children had solid tumors (P < .001). CONCLUSION: Caregivers in Guatemala prioritize many of the same aspects of diagnostic communication as parents in the United States, and experience similar challenges. Shared communication values offer potential for adaptation of communication interventions across settings with varying resources and diverse cultures.


Assuntos
Cuidadores , Neoplasias , Cuidadores/psicologia , Criança , Comunicação , Estudos Transversais , Guatemala , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia
9.
BMJ Glob Health ; 6(5)2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-34039587

RESUMO

INTRODUCTION: Fatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, including treatment abandonment, for children with cancer. This study explored Guatemalan parents' cancer beliefs during initial paediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs. METHODS: Twenty families of children with cancer were included in this study. We audio-recorded psychosocial conversations with psychologists and diagnostic conversations with oncologists, then conducted semi-structured interviews with parents to explore the evolution of their cancer beliefs. Audio-recordings were transcribed and translated from Spanish into English, with additional review in both languages by bilingual team members. All 60 transcripts were thematically analysed using a priori and novel codes. RESULTS: Guatemalan parents' beliefs evolve as they learn about cancer through various sources. Sources of information external to the cancer centre, including prior experiences with cancer, media exposure, community discussion and clinical encounters, contribute to pre-existing beliefs. Many parents' pre-existing cancer beliefs are fatalistic; some are influenced by Mayan spirituality. Sources internal to the cancer centre include psychologists and oncologists, other providers, other patients and families. Psychologists acknowledge pre-existing beliefs and deliver cancer education using verbal explanations and hand-drawings. Oncologists provide diagnostic information and outline treatment plans. Both support hope by providing a path toward cure. Parents' lived experience is a culmination of sources and simultaneously independent. Ultimately most parents arrive at an understanding of cancer that is consistent with an allopathic medical model and offers optimism about outcomes. CONCLUSION: An interdisciplinary communication process that includes cancer education, is attentive to pre-existing beliefs, and supports hope may encourage acceptance of the allopathic medical model and need for treatment. Providers in settings of all resource levels may be able to use these techniques to support cross-cultural cancer communication, reduce treatment abandonment and improve therapy adherence.


Assuntos
Neoplasias , Criança , Comunicação , Guatemala , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Pais , Pesquisa Qualitativa
10.
Am J Infect Control ; 49(5): 608-613, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-32828799

RESUMO

BACKGROUND: Routine manual cleaning and disinfection of the health care environment is often suboptimal. Residual contamination poses an infection risk, particularly for immunocompromised patients. This study evaluates the efficacy of dry hydrogen peroxide (DHP) on microbial surface contamination in a pediatric oncology intensive care unit. METHODS: Surface samples from 5 high-touch and 2 low-touch surfaces were obtained for culture and adenosine triphosphate readings after manual cleaning on multiple days in 4 intensive care unit rooms, before and after DHP was deployed. Air samples were collected as well at the study site. Data outcomes were measured in terms of total colony-forming units for the cultures and relative light units for adenosine triphosphate. RESULTS: The overall mean surface microbial burden was significantly reduced in the intervention group compared to the control group (mean 5.50 vs 11.77, P<.001). These reductions in colony-forming units were seen across all sampling sites in the intervention group. A reduction in the mean relative light units levels was also noted in the intervention group when compared to the control group (172.08 vs 225.83, P <.006). Reductions with the air samples were also noted (P = .139). CONCLUSIONS: Study demonstrates that DHP was effective in reducing microbial surface contamination and improves quality of environmental cleaning.


Assuntos
Infecção Hospitalar , Neoplasias , Criança , Contagem de Colônia Microbiana , Desinfecção , Humanos , Peróxido de Hidrogênio , Unidades de Terapia Intensiva
11.
JCO Glob Oncol ; 6: 1079-1086, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32673079

RESUMO

PURPOSE: Hospitalized pediatric oncology patients are at high risk of deterioration and require frequent interdisciplinary communication to deliver high-quality care. Pediatric early warning systems (PEWS) are used by hospitals to reduce deterioration, but it is unknown how these systems affect communication about patient care in high- and limited-resource pediatric oncology settings. METHODS: This qualitative study included semistructured interviews describing PEWS and subsequent team communication at 2 pediatric cancer centers, 1 in the United States and 1 in Guatemala. Participants included nurses, and frontline and intensive care providers who experienced recent deterioration events. Transcripts were coded and analyzed inductively using MAXQDA software. RESULTS: The study included 41 providers in Guatemala and 42 providers in the United States (33 nurses, 30 ward providers, and 20 pediatric intensive care providers). Major themes identified include "hierarchy," "empowerment," "quality and method of communication," and "trigger." All providers described underlying medical hierarchies affecting the quality of communication regarding patient deterioration events and identified PEWS as empowering. Participants from the United States described the algorithmic approach to care and technology associated with PEWS contributing to impaired clinical judgement and a lack of communication. In both settings, PEWS sparked interdisciplinary communication and inspired action. CONCLUSION: PEWS enhance interdisciplinary communication in high- and limited-resource study settings by empowering bedside providers. Traditional hierarchies contributed to negative communication and, in well-resourced settings, technology and automation resulted in lack of communication. Understanding contextual elements is integral to optimizing PEWS and improving pediatric oncology outcomes in hospitals of all resource levels.


Assuntos
Comunicação Interdisciplinar , Neoplasias , Criança , Guatemala , Hospitais Pediátricos , Humanos , Unidades de Terapia Intensiva Pediátrica
12.
Pediatr Blood Cancer ; 65(8): e27076, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29637687

RESUMO

Pediatric oncology patients hospitalized in resource-limited settings are at high risk for clinical deterioration resulting in mortality. Intermediate care units (IMCUs) provide a cost-effective alternative to pediatric intensive care units (PICUs). Inappropriate IMCU triage, however, can lead to poor outcomes and suboptimal resource utilization. In this study, we sought to characterize patients with clinical deterioration requiring unplanned transfer to the IMCU in a resource-limited pediatric oncology hospital. Patients requiring subsequent early PICU transfer had longer PICU length of stay. PEWS results prior to IMCU transfer were higher in patients requiring early PICU transfer, suggesting PEWS can aid in triage between IMCU and PICU care.


Assuntos
Técnicas de Apoio para a Decisão , Neoplasias , Transferência de Pacientes , Triagem/métodos , Algoritmos , Criança , Pré-Escolar , Países em Desenvolvimento , Feminino , Guatemala , Hospitais Pediátricos , Humanos , Unidades de Terapia Intensiva Pediátrica , Masculino
13.
Cancer ; 123(24): 4903-4913, 2017 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-28881451

RESUMO

BACKGROUND: Pediatric oncology patients are at high risk of clinical deterioration, particularly in hospitals with resource limitations. The performance of pediatric early warning systems (PEWS) to identify deterioration has not been assessed in these settings. This study evaluates the validity of PEWS to predict the need for unplanned transfer to the pediatric intensive care unit (PICU) among pediatric oncology patients in a resource-limited hospital. METHODS: A retrospective case-control study comparing the highest documented and corrected PEWS score before unplanned PICU transfer in pediatric oncology patients (129 cases) with matched controls (those not requiring PICU care) was performed. RESULTS: Documented and corrected PEWS scores were found to be highly correlated with the need for PICU transfer (area under the receiver operating characteristic, 0.940 and 0.930, respectively). PEWS scores increased 24 hours prior to unplanned transfer (P = .0006). In cases, organ dysfunction at the time of PICU admission correlated with maximum PEWS score (correlation coefficient, 0.26; P = .003), patients with PEWS results ≥4 had a higher Pediatric Index of Mortality 2 (PIM2) (P = .028), and PEWS results were higher in patients with septic shock (P = .01). The PICU mortality rate was 17.1%; nonsurvivors had higher mean PEWS scores before PICU transfer (P = .0009). A single-point increase in the PEWS score increased the odds of mechanical ventilation or vasopressors within the first 24 hours and during PICU admission (odds ratio 1.3-1.4). CONCLUSIONS: PEWS accurately predicted the need for unplanned PICU transfer in pediatric oncology patients in this resource-limited setting, with abnormal results beginning 24 hours before PICU admission and higher scores predicting the severity of illness at the time of PICU admission, need for PICU interventions, and mortality. These results demonstrate that PEWS aid in the identification of clinical deterioration in this high-risk population, regardless of a hospital's resource-level. Cancer 2017;123:4903-13. © 2017 American Cancer Society.


Assuntos
Recursos em Saúde/economia , Mortalidade Hospitalar/tendências , Unidades de Terapia Intensiva Pediátrica/economia , Neoplasias/economia , Neoplasias/terapia , Estudos de Casos e Controles , Criança , Pré-Escolar , Países em Desenvolvimento , Feminino , Guatemala , Hospitalização/economia , Hospitalização/estatística & dados numéricos , Humanos , Lactente , Unidades de Terapia Intensiva Pediátrica/estatística & dados numéricos , Masculino , Neoplasias/patologia , Pediatria/economia , Curva ROC , Estudos Retrospectivos , Fatores Socioeconômicos
14.
PLoS One ; 12(8): e0180488, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28817678

RESUMO

We conducted an exome-wide association study of childhood acute lymphoblastic leukemia (ALL) among Hispanics to confirm and identify novel variants associated with disease risk in this population. We used a case-parent trio study design; unlike more commonly used case-control studies, this study design is ideal for avoiding issues with population stratification bias among this at-risk ethnic group. Using 710 individuals from 323 Guatemalan and US Hispanic families, two inherited SNPs in ARID5B reached genome-wide level significance: rs10821936, RR = 2.31, 95% CI = 1.70-3.14, p = 1.7×10-8 and rs7089424, RR = 2.22, 95% CI = 1.64-3.01, p = 5.2×10-8. Similar results were observed when restricting our analyses to those with the B-ALL subtype: ARID5B rs10821936 RR = 2.22, 95% CI = 1.63-3.02, p = 9.63×10-8 and ARID5B rs7089424 RR = 2.13, 95% CI = 1.57-2.88, p = 2.81×10-7. Notably, effect sizes observed for rs7089424 and rs10821936 in our study were >20% higher than those reported among non-Hispanic white populations in previous genetic association studies. Our results confirmed the role of ARID5B in childhood ALL susceptibility among Hispanics; however, our assessment did not reveal any strong novel inherited genetic risks for acute lymphoblastic leukemia among this ethnic group.


Assuntos
Proteínas de Ligação a DNA/genética , Exoma , Predisposição Genética para Doença , Estudo de Associação Genômica Ampla , Hispânico ou Latino/genética , Leucemia-Linfoma Linfoblástico de Células Precursoras/genética , Fatores de Transcrição/genética , Adolescente , Alelos , Criança , Pré-Escolar , Feminino , Estudos de Associação Genética , Genótipo , Guatemala , Humanos , Lactente , Recém-Nascido , Masculino , Polimorfismo de Nucleotídeo Único , Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Texas
15.
Cancer ; 123(15): 2965-2974, 2017 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-28440868

RESUMO

BACKGROUND: Hospitalized pediatric oncology patients are at high risk of clinical decline and mortality, particularly in resource-limited settings. Pediatric early warning systems (PEWS) aid in the early identification of clinical deterioration; however, there are limited data regarding their feasibility or impact in low-resource settings. This study describes the successful implementation of PEWS at the Unidad Nacional de Oncología Pediátrica (UNOP), a pediatric oncology hospital in Guatemala, resulting in improved inpatient outcomes. METHODS: A modified PEWS was implemented at UNOP with systems to track errors, transfers to a higher level of care, and high scores. A retrospective cohort study was used to evaluate clinical deterioration events in the year before and after PEWS implementation. RESULTS: After PEWS implementation at UNOP, there was 100% compliance with PEWS documentation and an error rate of <10%. Implementation resulted in 5 high PEWS per week, with 30% of patients transferring to a higher level of care. Among patients requiring transfer to the pediatric intensive care unit (PICU), 93% had an abnormal PEWS before transfer. The rate of clinical deterioration events decreased after PEWS implementation (9.3 vs 6.5 per 1000-hospitalpatient-days, p = .003). Despite an 18% increase in total hospital patient-days, PICU utilization for inpatient transfers decreased from 1376 to 1088 PICU patient-days per year (21% decrease; P<.001). CONCLUSIONS: This study describes the successful implementation of PEWS in a pediatric oncology hospital in Guatemala, resulting in decreased inpatient clinical deterioration events and PICU utilization. This work demonstrates that PEWS is a feasible and effective quality improvement measure to improve hospital care for children with cancer in hospitals with limited resources. Cancer 2017;123:2965-74. © 2017 American Cancer Society.


Assuntos
Algoritmos , Institutos de Câncer , Recursos em Saúde , Hospitais Pediátricos , Neoplasias/terapia , Avaliação em Enfermagem , Pneumonia/diagnóstico , Sepse/diagnóstico , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Progressão da Doença , Diagnóstico Precoce , Intervenção Médica Precoce , Feminino , Guatemala , Humanos , Lactente , Unidades de Terapia Intensiva Pediátrica , Tempo de Internação , Masculino , Pneumonia/terapia , Melhoria de Qualidade , Estudos Retrospectivos , Sepse/terapia , Choque Séptico/diagnóstico , Choque Séptico/terapia , Sinais Vitais
16.
Pediatr Blood Cancer ; 64(10)2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28423236

RESUMO

BACKGROUND: Treatment refusal and abandonment are major causes of treatment failure for children with cancer in low- and middle-income countries (LMICs), like Guatemala. This study identified risk factors for and described the intervention that decreased abandonment. METHODS: This was a retrospective study of Guatemalan children (0-18 years) with cancer treated at the Unidad Nacional de Oncología Pediátrica (UNOP), 2001-2008, using the Pediatric Oncology Network Database. Treatment refusal was a failure to begin treatment and treatment abandonment was a lapse of 4 weeks or longer in treatment. The impact of medicina integral, a multidisciplinary psychosocial intervention team at UNOP was evaluated. Cox proportional hazards analysis identified the effect of demographic and clinical factors on abandonment. Kaplan-Meier analysis estimated the survival. RESULTS: Of 1,789 patients, 21% refused or abandoned treatment. Abandonment decreased from 27% in 2001 to 7% in 2008 following the implementation of medicina integral. Factors associated with increased risk of refusal and abandonment: greater distance to the centre (P < 0.001), younger age (P = 0.017) and earlier year of diagnosis (P < 0.001). Indigenous race/ethnicity (P = 0.002) was associated with increased risk of abandonment alone. Abandonment correlated with decreased overall survival: 0.57 ± 0.02 (survival ± standard error) for those who completed therapy versus 0.06 ± 0.02 for those who abandoned treatment (P < 0.001) at 8.3 years. CONCLUSION: This study identified distance, age, year of diagnosis and indigenous race/ethnicity as risk factors for abandonment. A multidisciplinary intervention reduced abandonment and can be replicated in other LMICs.


Assuntos
Neoplasias/mortalidade , Neoplasias/terapia , Recusa em Tratar , Adolescente , Assistência ao Convalescente , Criança , Pré-Escolar , Intervalo Livre de Doença , Feminino , Guatemala/epidemiologia , Humanos , Lactente , Masculino , Estudos Retrospectivos , Taxa de Sobrevida
17.
World J Pediatr ; 12(3): 320-326, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27351567

RESUMO

BACKGROUND: Varicella-zoster virus infection is associated with significant morbidity and mortality in immune-compromised children, despite treatment with antiviral agents. Universal varicella vaccine programs have significantly decreased this risk in many highincome countries, but in most low-income and middleincome countries, the burden of varicella in children treated for malignancy is poorly defined. METHODS: We retrospectively reviewed records of children at the National Unit of Pediatric Oncology (UNOP) in Guatemala diagnosed with varicella between January 2009 and March 2013 in order to calculate incidence of varicella and evaluate morbidity, mortality, treatment interruption, and cost. RESULTS: Fifty-nine cases of varicella were identified. Incidence was 23.4 cases per 1000 person-years (p-y). 66.1% of cases occurred in children with leukemia (median age 5.2 years; interquantile range 3.4-7 years) and 41.0% of these occurred during maintenance therapy. Source of exposure was identified for 14/59 (23.7%) children. Most were hospitalized (71.2%) and given intravenous acyclovir (64.4%). Eight (13.6%) children required critical care, and two (3.4%) died from disseminated varicella with multiorgan failure. Chemotherapy was delayed or omitted due to varicella in 50%. No significant differences in outcomes based on nutritional and immunologic status were detected. The minimum average cost of treatment per episode was 598.75 USD. CONCLUSIONS: Varicella is a significant problem in children treated for cancer in Guatemala, where effective post-exposure prophylaxis is limited. In the absence of universal varicella vaccination, strategies to improve recognition of exposure and the future use of novel inactivated vaccines currently under investigation in clinical trials could mitigate this burden.


Assuntos
Varicela/epidemiologia , Neoplasias/epidemiologia , Neoplasias/terapia , Aciclovir/uso terapêutico , Adolescente , Distribuição por Idade , Antineoplásicos/uso terapêutico , Varicela/diagnóstico , Varicela/tratamento farmacológico , Criança , Pré-Escolar , Comorbidade , Bases de Dados Factuais , Países em Desenvolvimento , Feminino , Seguimentos , Guatemala/epidemiologia , Humanos , Incidência , Lactente , Infusões Intravenosas , Masculino , Avaliação das Necessidades , Neoplasias/diagnóstico , Estudos Retrospectivos , Medição de Risco , Distribuição por Sexo , Taxa de Sobrevida , Resultado do Tratamento
18.
Artigo em Inglês | MEDLINE | ID: mdl-29147140

RESUMO

E-learning has been widely used in the infection control field and has been recommended for use in hand hygiene (HH) programs by the World Health Organization. Such strategies are effective and efficient for infection control, but factors such as learner readiness for this method should be determined to assure feasibility and suitability in low- to middle-income countries. We developed a tailored, e-learning, Spanish-language HH course based on the WHO guidelines for HH in healthcare settings for the pediatric cancer center in Guatemala City. We aimed to identify e-readiness factors that influenced HH course completion and evaluate HCWs' satisfaction. Pearson's chi-square test of independence was used to retrospectively compare e-readiness factors and course-completion status (completed, non-completed, and never-started). We surveyed 194 HCWs for e-readiness; 116 HCWs self-enrolled in the HH course, and 55 responded to the satisfaction survey. Most e-readiness factors were statistically significant between course-completion groups. Moreover, students were significantly more likely to complete the course if they had a computer with an Internet connection (P=0.001) and self-reported comfort with using a computer several times a week (p=0.001) and communicating through online technologies (p=0.001). Previous online course experience was not a significant factor (p=0.819). E-readiness score averages varied among HCWs, and mean scores for all e-readiness factors were significantly higher among medical doctors than among nurses. Nearly all respondents to the satisfaction survey agreed that e-learning was as effective as the traditional teaching method. Evaluating HCWs' e-readiness is essential while integrating technologies into educational programs in low- to middle-income countries.

19.
Pediatr Blood Cancer ; 61(2): 345-54, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24376230

RESUMO

Bridging the survival gap for children with cancer, between those (the great majority) in low and middle income countries (LMIC) and their economically advantaged counterparts, is a challenge that has been addressed by twinning institutions in high income countries with centers in LMIC. The long-established partnership between a Central American consortium--Asociación de Hemato-Oncología Pediátrica de Centro América (AHOPCA)--and institutions in Europe and North America provides a striking example of such a twinning program. The demonstrable success of this endeavor offers a model for improving the health outcomes of children with cancer worldwide. As this remarkable enterprise celebrates its 15th anniversary, it is appropriate to reflect on its origin, subsequent growth and development, and the lessons it provides for others embarking on or already engaged in similar journeys. Many challenges have been encountered and not all yet overcome. Commitment to the endeavor, collaboration in its achievements and determination to overcome obstacles collectively are the hallmarks that stamp AHOPCA as a particularly successful partnership in advancing pediatric oncology in the developing world.


Assuntos
Institutos de Câncer/organização & administração , Serviços de Saúde da Criança/organização & administração , Gerenciamento Clínico , Cooperação Internacional , Neoplasias/prevenção & controle , Pediatria/organização & administração , América Central , Criança , Conservação dos Recursos Naturais , Europa (Continente) , Humanos
20.
Cancer ; 120(1): 112-25, 2014 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-24132910

RESUMO

BACKGROUND: The delivery of effective treatment for pediatric solid tumors poses a particular challenge to centers in middle-income countries (MICs) that already are vigorously addressing pediatric cancer. The objective of this study was to improve the current understanding of barriers to effective treatment of pediatric solid tumors in MICs. METHODS: An ecologic model centered on pediatric sarcoma and expanded to country as the environment was used as a benchmark for studying the delivery of solid tumor care in MICs. Data on resources were gathered from 7 centers that were members of the Central American Association of Pediatric Hematologists and Oncologists (AHOPCA) using an infrastructure assessment tool. Pediatric sarcoma outcomes data were available, were retrieved from hospital-based cancer registries for 6 of the 7 centers, and were analyzed by country. Patients who were diagnosed from January 1, 2000 to December 31, 2009 with osteosarcoma, Ewing sarcoma, rhabdomyosarcoma, and other soft tissue sarcomas were included in the analysis. To explore correlations between resources and outcomes, a pilot performance index was created. RESULTS: The analyses identified specific deficits in human resources, communication, quality, and infrastructure. The treatment abandonment rate, the proportion of metastatic disease at diagnosis, the relapse rate, and the 4-year abandonment-sensitive overall survival (AOS) rate varied considerably by country, ranging from 1% to 38%, from 15% to 54%, from 24% to 52%, and from 21% to 51%, respectively. The treatment abandonment rate correlated inversely with health economic expenditure per capita (r = -0.86; P = .03) and life expectancy at birth (r = -0.93; P = .007). The 4-year AOS rate correlated inversely with the mortality rate among children aged <5 years (r = -0.80; P = 0.05) and correlated directly with the pilot performance index (r = 0.98; P = 0.005). CONCLUSIONS: Initiatives to improve the effectiveness of treatment for pediatric solid tumors in MICs are warranted, particularly for pediatric sarcomas. Building capacity and infrastructure, improving supportive care and communication, and fostering comprehensive, multidisciplinary teams are identified as keystones in Central America. A measure that meaningfully describes performance in delivering pediatric cancer care is feasible and needed to advance comparative, prospective analysis of pediatric cancer care and to define resource clusters internationally.


Assuntos
Acessibilidade aos Serviços de Saúde/economia , Sarcoma/economia , Sarcoma/terapia , Adolescente , América Central , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Sistema de Registros , Sarcoma/diagnóstico , Fatores Socioeconômicos , Análise de Sobrevida , Resultado do Tratamento
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA