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OBJECTIVES: The Kaposi sarcoma (KS) T0 versus T1 staging classification does not address the unique clinical features of paediatric KS in human gammaherpesvirus 8 (HHV-8) endemic regions of Africa. This study seeks to define patterns of childhood KS using a paediatric-specific approach. METHODS: The Lilongwe paediatric KS staging classification categorizes disease based on clinical phenotype: stage 1 = mild/moderate KS limited to cutaneous/oral involvement, stage 2 = primarily lymphadenopathic disease, stage 3 = woody edema KS, stage 4 = visceral and/or severe/disseminated mucocutaneous disease. Characteristics and outcomes were evaluated from paediatric referral centres in Lilongwe, Malawi, and Mbeya, Tanzania. RESULTS: Among 171 patients, the median age was 9.3 years, 37% (n = 63) were female, and 87% (n = 149) had HIV. Breakdown by stage was as follows: 18% (n = 31) stage 1, 33% (n = 56) stage 2, 19% (n = 33) stage 3, and 30% (n = 51) stage 4. Age (younger stage 2 and older stage 3), severe CD4 count suppression (lower CD4 for stages 1 and 4), and presence of severe anaemia and thrombocytopenia (worse for stages 2 and 4) differed across stages. Estimated 2-year event-free survival/progression-free survival/overall survival by stage was as follows: stage 1, 81%/81%/87%; stage 2, 50%/50%/63%; stage 3, 24%/49%/81%; and stage 4, 29%/34%/54%. Sub-analysis of stage 2 lymphadenopathic KS demonstrated superior long-term 6-year event-free survival of 70% (95% confidence interval [CI] 49-83) for younger children (aged <7 years) versus 27% (95% CI 8-51) for older children. CONCLUSIONS: This paediatric-specific staging classification categorizes patients with distinct characteristics and patterns of treatment response. This platform may guide clinicians to provide risk-stratified treatment with the hope of improving survival among children with KS.
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Anemia , Infecções por HIV , Síndrome de Kasabach-Merritt , Sarcoma de Kaposi , Humanos , Criança , Feminino , Adolescente , Masculino , Sarcoma de Kaposi/epidemiologia , Infecções por HIV/tratamento farmacológico , Malaui/epidemiologia , Tanzânia/epidemiologiaRESUMO
The objective of this study was to understand global caregiver concerns about SARS-CoV-2 vaccination for children with cancer and to provide healthcare providers with guidance to support parental decision-making. A co-designed cross-sectional mixed-methods survey was distributed to primary caregivers of children with cancer globally between April and May 2021 via several media. Caregivers were asked to rate the importance of vaccine-related questions and the median scores were ranked. Principal Component Analysis was conducted to identify underlying dimensions of caregiver concerns by World Bank income groups. Content analysis of free-text responses was conducted and triangulated with the quantitative findings. 627 caregivers from 22 countries responded to the survey with 5.3% (n = 67) responses from low-and-middle-income countries (LMIC). 184 caregivers (29%) provided free-text responses. Side effects and vaccine safety were caregivers' primary concerns in all countries. Questions related to logistics were of concern for caregivers in LMIC. A small minority of caregivers (n = 17) did not consider the survey questions important; free-text analysis identified these parents as vaccine hesitant, some of them quoting safety and side effects as main reasons for hesitancy. Healthcare providers and other community organizations globally need to provide tailored information about vaccine safety and effectiveness in pediatric oncology settings. Importantly, continued efforts are imperative to reduce global inequities in logistical access to vaccines, particularly in LMIC.
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Vacinas contra COVID-19 , COVID-19 , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Neoplasias , Criança , Humanos , Cuidadores , COVID-19/prevenção & controle , Vacinas contra COVID-19/administração & dosagem , Estudos Transversais , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/etiologia , Neoplasias/terapia , Pais , SARS-CoV-2 , Vacinação/efeitos adversos , VacinasRESUMO
OBJECTIVES: Kaposi sarcoma (KS) is one of the most common childhood cancers in eastern and central Africa. It has become a treatable disease with increasing availability of antiretroviral therapy (ART) and chemotherapy. We aimed to fill the data gap in establishing whether long-term survival is achievable for children in low-income countries. METHODS: We retrospectively analysed data for children and adolescents aged ≤ 18.9 years diagnosed with HIV-related or endemic KS from 2006 to 2015 who received standardized institutional treatment regimens utilizing chemotherapy plus ART (if HIV-positive) at a tertiary care public hospital in Lilongwe, Malawi. Long-term survival was analysed and mortality was associated with KS for those with refractory/progressive disease at the time of death. RESULTS: There were 207 children/adolescents with KS (90.8% HIV-related); 36.7% were alive, 54.6% had died, and 8.7% had been lost to follow-up. The median follow-up time for survivors was 6.9 years (range 4.2-13.9 years). Death occurred at a median of 5.3 months after KS diagnosis (range 0.1-123 months). KS progression was associated with mortality for most (61%) early deaths (survival time of < 6 months); conversely, KS was associated with a minority (31%) of late-onset deaths (after 24 months). The 7-year overall survival was 37% [95% confidence interval (CI) 30-44%] and was higher for those diagnosed between 2011 and 2015 compared to 2006-2010: 42% (95% CI 33-51%) versus 29% (95% CI 20-39%), respectively (P = 0.01). Among the 66 HIV-positive survivors, 58% were still on first-line ART. CONCLUSIONS: Long-term survival is possible for pediatric KS in low-resource settings. Despite better survival in more recent years, there remains room for improvement.
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Infecções por HIV , Sarcoma de Kaposi , Adolescente , Criança , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Humanos , Malaui/epidemiologia , Estudos Retrospectivos , Sarcoma de Kaposi/tratamento farmacológico , Sarcoma de Kaposi/epidemiologiaRESUMO
Malnutrion among children with childhood cancer in low and middle income countries (LMICs) is prevelant. While national nutrition programs focus on children under 5 years, childhood cancer can occur regardless of their age. Through a single-center retrospective cohort in Lilongwe, Malawi, we aim to characterize the burden of age-related malnutrition among children diagnosed with cancer in Lilongwe, Malawi, and evaluate them for any associations with mortality. Four hundred and sixty-three children (63.5% ≥5 years and 58.3% males) were identified.The majority of children (63.3%) were malnourished; 23.1% had moderate acute malnutrition (MAM) and 40.2% had severe acute malnutrition (SAM). Malnutrition was more common in children ≥5 years (70.0%) compared to children <5 years (51.8%); p < 0.0001. Age <5 years (HR 1.6; 95%CI 1.1-2.3, p = 0.016) and presence of sever acute malnutrition (HR 1.6, 95%CI 1.1-2.3, p = 0.012) were both associated with increased mortality risk. Acute malnutrition was highly prevalent among children with cancer above 5 years of age. This age group is not prioritized among malnutrition programs in LMICs, hence there is a direct need to include children with cancer regardless of age in national nutrition guidelines in LMICs to give them acces to adequate nutritional support.
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Desnutrição , Neoplasias , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Malaui/epidemiologia , Masculino , Desnutrição/complicações , Desnutrição/epidemiologia , Neoplasias/complicações , Neoplasias/epidemiologia , Estado Nutricional , Estudos RetrospectivosRESUMO
BACKGROUND: Infants are often brought to an emergency department (ED) for medical evaluation upon surrender or abandonment. However, no specific guidelines exist for the care of surrendered or abandoned children. We describe the case of an abandoned infant who was brought to a pediatric quaternary care hospital as a model for evaluation and management. CASE REPORT: A 3-day-old abandoned female was brought to a quaternary care pediatric hospital ED. Given limitations in history, upon physical examination and in consultation with specialists, our team completed an extensive laboratory workup to guide initial management and treatment. WHY SHOULD AN EMERGENCY PHYSICIAN BE AWARE OF THIS?: Abandoned and surrendered infants frequently enter the medical system via the ED, and emergency physicians must be aware of best practices to evaluate and manage these patients. While each infant presentation is unique, commonalities exist. Our care may serve as a starting point by which others may base their own management. © 2022 Elsevier Inc.
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Criança Abandonada , Serviço Hospitalar de Emergência , Criança , Feminino , Hospitais Pediátricos , Humanos , Lactente , Encaminhamento e ConsultaRESUMO
Vivid descriptions of Kaposi sarcoma (KS) occurring in children and adolescents from central and eastern Africa originated over 50 years ago. Unique clinical characteristics of pediatric KS in Africa were well described within these geographic regions that were eventually understood to be endemic for human herpesvirus-8/Kaposi sarcoma herpesvirus (HHV-8/KSHV) infection, the causative agent of KS. Having catapulted in incidence with the HIV epidemic, KS is currently among the top five most common childhood cancers in numerous countries throughout the region. The main feature that differentiates the childhood form of KS from adult disease is clinical presentation with primarily bulging lymphadenopathy. This group of patients represents the most common clinical subtype of pediatric KS in KSHV-endemic regions. Lymphadenopathic KS in children is associated with other distinct features, such as sparse occurrence of prototypical hyperpigmented cutaneous lesions, frequent presentation with severe cytopenias and a normal CD4 count, and a fulminant clinical course if untreated with chemotherapy. Increased awareness and improved recognition of lymphadenopathic KS are critically important, particularly because this subset of patients typically experiences a favorable response to chemotherapy characterized by durable complete remission. Clinical phenotypes typically observed in adult KS also occur in children-mild/moderate disease limited to cutaneous and oral involvement, woody edema, and visceral disease. This review summarizes the heterogeneous patterns of disease presentation and treatment response observed among the divergent clinical phenotypes of pediatric KS, highlights additional KSHV-related malignancies, and explores some of the potential biological drivers of such clinical phenomena.
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Sarcoma de Kaposi/tratamento farmacológico , Sarcoma de Kaposi/epidemiologia , Criança , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Infecções por HIV/patologia , Humanos , Estadiamento de Neoplasias , Sarcoma de Kaposi/diagnóstico , Sarcoma de Kaposi/virologia , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/tratamento farmacológico , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/virologiaRESUMO
BACKGROUND/OBJECTIVES: Standard supportive care during induction therapy for high-risk neuroblastoma (HR-NBL) includes primary prophylactic granulocyte colony-stimulating factor (G-CSF) aimed at limiting duration of neutropenia, reducing infection risk, and minimizing treatment delays. Preclinical models suggest that G-CSF promotes maintenance of neuroblastoma cancer stem cells and may reduce the efficacy of chemotherapy. This study's objective was to determine the safety and feasibility of administering induction chemotherapy without routine use of prophylactic G-CSF. DESIGN/METHODS: Children with newly diagnosed HR-NBL received six-cycle induction chemotherapy regimen without prophylactic G-CSF in four cycles. G-CSF was administered for stem cell mobilization after cycle 3 and granulocyte-monocyte colony-stimulating factor after cycle 5 prior to surgical resection of primary disease. The primary outcome measure was the incidence of grade 3 or higher infection. We hypothesized that the per patient infection rate would be comparable to our institutional baseline rate of 58% in patients with HR-NBL receiving induction chemotherapy with prophylactic growth factor support. The trial used an A'Hern single-stage design. RESULTS: Twelve patients with HR-NBL received 58 cycles of chemotherapy on study. Three patients completed the entire six-cycle regimen with no infections. Nine patients experienced grade 3 infections (bacteremia four, urinary tract infection two, skin/soft tissue infection three). No patients experienced grade 4 infections or required intensive care treatment for infection. CONCLUSION: A greater than expected number of serious bacterial infections were observed during administration of induction chemotherapy for HR-NBL without primary prophylactic G-CSF. These results support continued prophylactic administration growth factor during induction chemotherapy.
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Infecções Bacterianas/prevenção & controle , Fator Estimulador de Colônias de Granulócitos/administração & dosagem , Mobilização de Células-Tronco Hematopoéticas/métodos , Quimioterapia de Indução/métodos , Neuroblastoma/tratamento farmacológico , Neutropenia/prevenção & controle , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino , Neuroblastoma/patologia , Projetos Piloto , Prognóstico , Estudos Prospectivos , Taxa de Sobrevida , Tempo para o TratamentoRESUMO
The increasing intensity of high-risk neuroblastoma (HR NB) treatment over the last decades has resulted in improved survival at the expense of prolonging therapy and exposure to additional potentially toxic agents. Anemia and thrombocytopenia requiring transfusion are common during therapy for HR NB. Risks of cumulative red blood cell and platelet transfusions are incompletely defined in pediatric oncology patients, however, risks of transfusional iron overload are well described in other populations. This study aimed to determine the number of packed red blood cell (pRBC) and platelet transfusions throughout treatment for HR NB and how these numbers have changed with modern therapy. We performed a retrospective review of 92 patients with HR NB from June 2002 until September 2017. Patients received a median of 20 pRBC and 32 platelet transfusions. Our results demonstrated large numbers of transfusions with significantly increased blood product exposures among patients who received intensified therapy, either with additional induction chemotherapy, tandem autologous stem cell transplants, or dinutuximab plus cytokines with isotretinoin. Similar volumes of pRBC transfusions have been associated with iron overload in other populations and warrant further discussion of guidelines for long-term follow up of HR NB patients.
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Transfusão de Sangue/métodos , Neuroblastoma/terapia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Estudos RetrospectivosRESUMO
PURPOSE: Quality of care is an emerging area of focus in the surgical disciplines. However, much of the emphasis on quality is limited to high-income countries. To address this gap, we conducted a systematic review of the literature on the quality of essential surgical care in low- and middle- income countries (LMIC). DATA SOURCES: We searched PubMed, Cinahl, Embase and CAB Abstracts using three domains: quality of care, surgery and LMIC. STUDY SELECTION: We limited our review to studies of essential surgeries that pertained to all three search domains. DATA EXTRACTION: We extracted data on study characteristics, type of surgery and the way in which quality was studied. RESULTS OF DATA SYNTHESIS: 354 studies were included. 281 (79.4%) were single-center studies and nearly half (n = 169, 46.9%) did not specify the level of facility. 207 studies reported on mortality (58.47%) and 325 reported on a morbidity (91.81%), most commonly surgical site infection (n = 190, 53.67%). Of the Institute of Medicine domains of quality, studies were most commonly of safety (n = 310, 87.57%) and effectiveness (n = 180, 50.85%) and least commonly of equity (n = 21, 5.93%). CONCLUSION: We find that while there are numerous studies that report on some aspects of quality of care, much of the data is single center and observational. Additionally, there is variability on which outcomes are reported both within and across specialties. Finally, we find under-reporting of parameters of equity and timeliness, which may be critical areas for research moving forward.
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Países em Desenvolvimento , Cirurgia Geral/estatística & dados numéricos , Qualidade da Assistência à Saúde/estatística & dados numéricos , Procedimentos Cirúrgicos Operatórios/estatística & dados numéricos , Cirurgia Geral/normas , Humanos , Segurança do Paciente/estatística & dados numéricos , Complicações Pós-Operatórias/epidemiologia , Procedimentos Cirúrgicos Operatórios/efeitos adversos , Procedimentos Cirúrgicos Operatórios/mortalidade , Infecção da Ferida Cirúrgica/epidemiologiaRESUMO
BACKGROUND: Gastric cancer is the fifth most common cancer in Eastern Africa. Diagnostic delays in low-resource countries result in advanced disease presentation. We describe perioperative management of gastric cancer in Rwanda. METHODS: A retrospective review of records at three hospitals was performed to identify gastric adenocarcinoma cases from January 2012 to June 2016. Multiple perioperative and tumor-related variables were collected. Descriptive and bivariate analyses were performed. RESULTS: The final analysis included 229 patients with gastric cancer. Median age was 58 years (interquartile range [IQR] 49-65) and 49.6% were female (n = 114). Patients reported symptoms (ie, weight loss, epigastric pain) for a median time of 12 months (IQR 7.5-24). On presentation, 18.8% ( n = 43) had gastric outlet obstruction; 13.5% ( n = 31) had a palpable mass. Fifty-one percent ( n = 117) underwent an operation; of these, 74% ( n = 86) received gastrojejunostomy or were inoperable; and 29% ( n = 34) underwent curative resection. Palliative care referrals were made for 9% ( n = 20). Pathology reports were available for 190 patients (83.0%). Only 11.3% ( n = 26) had Helicobacter pylori ( H. pylori) testing of which 65.4% tested positive ( n = 17). CONCLUSIONS: A majority of patients presented with advanced disease. Very few patients had a curative resection. Significant advances in diagnosis and treatment are needed to improve the care of gastric cancer patients in Rwanda.
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Neoplasias Gástricas/cirurgia , Adenocarcinoma/economia , Adenocarcinoma/microbiologia , Adenocarcinoma/patologia , Adenocarcinoma/cirurgia , Estudos de Coortes , Procedimentos Cirúrgicos do Sistema Digestório/economia , Procedimentos Cirúrgicos do Sistema Digestório/métodos , Feminino , Infecções por Helicobacter/microbiologia , Infecções por Helicobacter/patologia , Helicobacter pylori/isolamento & purificação , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Estudos Retrospectivos , Ruanda , Neoplasias Gástricas/economia , Neoplasias Gástricas/microbiologia , Neoplasias Gástricas/patologia , Tempo para o Tratamento , Resultado do TratamentoRESUMO
BACKGROUND: Laparoscopic cholecystectomy is first-line treatment for uncomplicated gallstone disease in high-income countries due to benefits such as shorter hospital stays, reduced morbidity, more rapid return to work, and lower mortality as well-being considered cost-effective. However, there persists a lack of uptake in low- and middle-income countries. Thus, there is a need to evaluate laparoscopic cholecystectomy in comparison with an open approach in these settings. METHODS: A cost-effectiveness analysis was performed to evaluate laparoscopic and open cholecystectomies at Rwanda Military Hospital (RMH), a tertiary care referral hospital in Rwanda. Sensitivity and threshold analyses were performed to determine the robustness of the results. RESULTS: The laparoscopic and open cholecystectomy costs and effectiveness values were $2664.47 with 0.87 quality-adjusted life years (QALYs) and $2058.72 with 0.75 QALYs, respectively. The incremental cost-effectiveness ratio for laparoscopic over open cholecystectomy was $4946.18. Results are sensitive to the initial laparoscopic equipment investment and number of cases performed annually but robust to other parameters. The laparoscopic intervention is more cost-effective with investment costs less than $91,979, greater than 65 cases annually, or at willingness-to-pay (WTP) thresholds greater than $3975/QALY. CONCLUSIONS: At RMH, while laparoscopic cholecystectomy may be a more effective approach, it is also more expensive given the low caseload and high investment costs. At commonly accepted WTP thresholds, it is not cost-effective. However, as investment costs decrease and/or case volume increases, the laparoscopic approach may become favorable. Countries and hospitals should aspire to develop innovative, low-cost options in high volume to combat these barriers and provide laparoscopic surgery.
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Colecistectomia/economia , Países em Desenvolvimento , Laparoscópios/economia , Colecistectomia/estatística & dados numéricos , Colecistectomia Laparoscópica/economia , Colecistectomia Laparoscópica/estatística & dados numéricos , Análise Custo-Benefício , Cálculos Biliares/cirurgia , Hospitais Militares , Humanos , Anos de Vida Ajustados por Qualidade de Vida , RuandaRESUMO
BACKGROUND: In low-resource settings, access to emergency cesarean section is associated with various delays leading to poor neonatal outcomes. In this study, we described the delays a mother faces when needing emergency cesarean delivery and assessed the effect of these delays on neonatal outcomes in Rwanda. METHODS: This retrospective study included 441 neonates and their mothers who underwent emergency cesarean section in 2015 at three district hospitals in Rwanda. Four delays were measured: duration of labor prior to hospital admission, travel time from health center to district hospital, time from admission to surgical incision, and time from decision for emergency cesarean section to surgical incision. Neonatal outcomes were categorized as unfavorable (APGAR <7 at 5 min or death) and favorable (alive and APGAR ≥7 at 5 min). We assessed the relationship between each type of delay and neonatal outcomes using multivariate logistic regression. RESULTS: In our study, 9.1% (40 out of 401) of neonates had an unfavorable outcome, 38.7% (108 out of 279) of neonates' mothers labored for 12-24 h before hospital admission, and 44.7% (159 of 356) of mothers were transferred from health centers that required 30-60 min of travel time to reach the district hospital. Furthermore, 48.1% (178 of 370) of cesarean sections started within 5 h after hospital admission and 85.2% (288 of 338) started more than 30 min after the decision for cesarean section was made. Neonatal outcomes were significantly worse among mothers with more than 90 min of travel time from the health center to the district hospital compared to mothers referred from health centers located on the same compound as the hospital (aOR = 5.12, p = 0.02). Neonates with cesarean deliveries starting more than 30 min after decision for cesarean section had better outcomes than those starting immediately (aOR = 0.32, p = 0.04). CONCLUSIONS: Longer travel time between health center and district hospital was associated with poor neonatal outcomes, highlighting a need to decrease barriers to accessing emergency maternal services. However, longer decision to incision interval posed less risk for adverse neonatal outcome. While this could indicate thorough pre-operative interventions including triage and resuscitation, this relationship should be studied prospectively in the future.
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Cesárea/estatística & dados numéricos , Resultado da Gravidez/epidemiologia , Tempo para o Tratamento/estatística & dados numéricos , Transporte de Pacientes/estatística & dados numéricos , Meios de Transporte/estatística & dados numéricos , Estudos Transversais , Tratamento de Emergência/estatística & dados numéricos , Feminino , Hospitais de Distrito , Humanos , Recém-Nascido , Avaliação de Resultados em Cuidados de Saúde , Gravidez , Estudos Retrospectivos , RuandaRESUMO
Health disparities education is an integral and required part of medical professional training, and yet existing curricula often fail to effectively denaturalize injustice or empower learners to advocate for change. We discuss a novel collaborative intervention that weds the health humanities to the field of health equity. We draw from the health humanities an intentional focus retraining provider imaginations by centering patient narratives; from the field of health equity, we draw the linkage between stigmatized social identities and health disparities. We describe a longitudinal health equity curriculum for the Hospice and Palliative Medicine fellowship in Memphis, Tennessee, to give trainees exposure to the concept of structural violence and how it affects clinical care. The curriculum was developed in partnership with humanities and social sciences faculty who staff a Health Equity academic program at a small liberal arts college in Memphis. This curriculum has been implemented for the past four years in support of 22 hospice and palliative medicine fellows. Group debriefs and a mixed methods survey have revealed widespread and lasting impact towards understanding health equity concepts, enhanced communication and treatment of patients, and empowerment to address the broader needs and policies affecting patients and the communities in which they live. Ultimately, we model an educational initiative that integrates equity across the full scope of healthcare practice and equips learners with skills for sustaining compassionate practices, focusing on equity-oriented, person-centered care across the full scope of healthcare practice.
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Currículo , Equidade em Saúde , Humanos , Educação Médica , Medicina Paliativa/educação , Ciências Humanas/educação , TennesseeRESUMO
CONTEXT: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. OBJECTIVE: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred language. METHODS: We conducted a cross-sectional study of patients who died at Texas Children's Hospital from 2018 to 2019. Demographics, date of death, and final code status were extracted. Medical complexity prior to admission and mode of death were obtained from chart review. RESULTS: We included 433 patients. Over one-third were Hispanic (39.3%) with 42.3% preferring Spanish. The majority were White (61.4%) or Black (21.0%). Most patients had significant medical complexity (52.0%) or were infants in their birth admission (29.4%). Half (52.4%) received palliative care; patients with increased medical complexity were more likely to have palliative care involved (P<0.001). There were no differences in palliative care, code status, or mode of death by race. Hispanic patients were less likely to have a full code status (OR 0.42, 95% CI: 0.25-0.73). Spanish-speaking patients were more likely to have palliative care involvement (OR 2.05, 95% CI: 1.21-3.46) and less likely full code orders (OR 0.24, 95% CI: 0.1-0.63). CONCLUSION: Palliative care services are engaged with most children at end of life and is accessible to marginalized patient groups. Spanish-speaking patients have different code status orders and modes of death at end of life. Further studies are needed to elucidate explanatory factors for differences revealed and multicenter studies are needed to characterize more widespread experiences.
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BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child's death. Using a hybrid deductive-inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of "bad news" encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model ("Lend an EAR") to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.
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Neoplasias , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Criança , Estudos Prospectivos , Feminino , Masculino , Estudos Longitudinais , Relações Médico-Paciente , Pré-Escolar , Pessoalidade , Idioma , Adolescente , Respeito , Oncologia , ComunicaçãoRESUMO
CONTEXT: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES: To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS: We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS: Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative medicine and hospice (15/44, 34%). CONCLUSION: Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.
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Introduction: SARS-CoV-2 has led to an unprecedented pandemic where vulnerable populations, such as those with childhood cancer, face increased risk of morbidity and mortality. COVID-19 vaccines are a critical intervention to control the pandemic and ensure patient safety. This study explores global caregiver's perspectives related to COVID-19 immunization in the context of pediatric cancer management. Methods: A mixed methods survey was developed based on consensus questions with iterative feedback from global medical professional and caregiver groups and distributed globally to caregivers of childhood cancer via electronic and paper routes. We present qualitative findings through inductive content analysis of caregiver free-text responses. Results: A total of 184 participants provided qualitative responses, 29.3% of total survey respondents, with a total of 271 codes applied. Codes focused on themes related to safety and effectiveness (n = 95, 35.1%), logistics (n = 69, 25.5%), statements supporting or opposing vaccination (n = 55, 20.3%), and statements discussing the limited availability of information (n = 31, 11.4%). Within the theme of safety and effectiveness, safety itself was the most commonly used code (n = 66, 24.4% of total segments and 69.5% of safety and effectiveness codes), followed by risks versus benefits (n = 18, 18.9% of safety and effectiveness codes) and efficacy (n = 11, 11.6%). Discussion: This study provides insights to guide healthcare professionals and caregiver peers in supporting families during the complex decision-making process for COVID-19 vaccination. These findings highlight the multidimensionality of concerns and considerations of caregivers of children with cancer regarding COVID-19 vaccination and suggest that certain perspectives transcend borders and cultures.
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COVID-19 , Neoplasias , Humanos , Criança , Vacinas contra COVID-19 , SARS-CoV-2 , COVID-19/prevenção & controle , Neoplasias/terapia , VacinaçãoRESUMO
PURPOSE: In this scoping review, we evaluated existing literature related to factors influencing treatment decision-making for patients diagnosed with cancer in low- and middle-income countries, noting factors that influence decisions to pursue treatment with curative versus non-curative intent. We identified an existing framework for adult cancer developed in a high-income country (HIC) context and described similar and novel factors relevant to low-and middle-income country settings. METHODS: We used scoping review methodology to identify and synthesize existing literature on factors influencing decision-making for pediatric and adult cancer in these settings. Articles were identified through an advanced Boolean search across six databases, inclusive of all article types from inception through July 2022. RESULTS: Seventy-nine articles were identified from 22 countries across six regions, primarily reporting the experiences of lower-middle and upper-middle-income countries. Included articles largely represented original research (54%), adult cancer populations (61%), and studied patients as the targeted population (51%). More than a quarter of articles focused exclusively on breast cancer (28%). Approximately 30% described factors that influenced decisions to choose between therapies with curative versus non-curative intent. Of 56 reported factors, 22 novel factors were identified. Socioeconomic status, reimbursement policies/cost of treatment, and treatment and supportive care were the most commonly described factors. CONCLUSIONS: This scoping review expanded upon previously described factors that influence cancer treatment decision-making in HICs, broadening knowledge to include perspectives of low- and middle-income countries. While global commonalities exist, certain variables influence treatment choices differently or uniquely in different settings. Treatment regimens should further be tailored to local environments with consideration of contextual factors and accessible resources that often impact decision-making.
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Neoplasias da Mama , Países em Desenvolvimento , Adulto , Humanos , Criança , Feminino , RendaRESUMO
BACKGROUNDKaposi sarcoma (KS) is among the most common childhood cancers in Eastern and Central Africa. Pediatric KS has a distinctive clinical presentation compared with adult KS, which includes a tendency for primary lymph node involvement, a considerable proportion of patients lacking cutaneous lesions, and a potential for fulminant disease. The molecular mechanisms or correlates for these disease features are unknown.METHODSThis was a cross-sectional study. All cases were confirmed by IHC for KS-associated herpesvirus (KSHV) LANA protein. Baseline blood samples were profiled for HIV and KSHV genome copy numbers by qPCR and secreted cytokines by ELISA. Biopsies were characterized for viral and human transcription, and KSHV genomes were determined when possible.RESULTSSeventy participants with pediatric KS were enrolled between June 2013 and August 2019 in Malawi and compared with adult patients with KS. They exhibited high KSHV genome copy numbers and IL-6/IL-10 levels. Four biopsies (16%) had a viral transcription pattern consistent with lytic viral replication.CONCLUSIONThe unique features of pediatric KS may contribute to the specific clinical manifestations and may direct future treatment options.FUNDINGUS National Institutes of Health U54-CA-254569, PO1-CA019014, U54-CA254564, RO1-CA23958.
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Infecções por HIV , Herpesvirus Humano 8 , Sarcoma de Kaposi , Estados Unidos , Humanos , Criança , Adulto , Herpesvirus Humano 8/genética , Estudos Transversais , Replicação Viral , Infecções por HIV/tratamento farmacológicoRESUMO
Background: Low- and middle-income countries face distinct challenges in providing health care services and training. The community of practice (CoP) has been described as a method of facilitating much-needed connections and conversations on this topic and has been adapted over time to include virtual CoPs. We describe the development and evaluation of a global Clinical Lead Forum (CLF) using a CoP framework to structure informal continuing professional development (CPD) and enhance the capacity of health care professionals in low- and middle-income countries. Methods: Baylor College of Medicine International Pediatric AIDS Initiative (BIPAI) and its network of affiliated, independent non-governmental organizations (NGOs) provide paediatric and maternal health care for vulnerable populations around the world. We established virtual sessions across the network to discuss clinical topics, which evolved based on the need to include a COVID-19 series. We collected demographic, participation, participant and facilitator assessments, as well as leadership notes from each session as part of an educational quality improvement study. We developed and evaluated the program using the Logic Model and used the Kirkpatrick Model to assess learning outcomes. Results: A total of 299 unique participants engaged in sessions, representing a total of 10 disciplines. There were a total of 1295 participants who joined for the 11 sessions in the regular CLF series and the 23 sessions in the COVID-19 series. Survey responses were overall consistent with a value-added intervention. Conclusions: The CLF, via both the regular sessions and the COVID-19 series, served as an impactful global health CoP for CPD. By focusing on creating a safe and inviting space, ensuring equity and inclusion, activating champions, fostering engagement, and promoting innovation and adaptability, this program decreased professional isolation, strengthened peer relationships, and enhanced the knowledge and practices of health care professionals. Our model may be scaled to other systems across the world to bridge divides and create similarly meaningful communities.