[Consensus on therapeutic effort limitation, with a palliative care approach]. / Consenso de adecuación de esfuerzo terapéutico con enfoque paliativo.

The National Committee for Palliative Care expressed their commitment to approach the decision of foregoing life sustaining treatment from a palliative care perspective, allowing the implementation of a care program to prevent therapeutic obstinacy, respect the dignity of the patient and their parents, and evaluate a rational, reasonable and adequate use of health and technological resources by focusing on the quality of life of the child, in order to realize their best interest, providing a guide that facilitates the decision-making process in dilemmatic situations in pediatrics.

Desde el Comité Nacional de Cuidados Paliativos surgió la inquietud de aportar una mirada específica a la adecuación del esfuerzo terapéutico que permita implementar un plan de cuidado que prevenga el empecinamiento terapéutico, respete la dignidad del paciente y sus padres, evalúe un uso racional, razonable y adecuado de los recursos sanitarios y tecnológicos, y se focalice en la calidad de vida del niño, en concreción de su interés superior. El objetivo es acercar a los pediatras una guía que facilite el proceso de toma de decisiones en situaciones dilemáticas.

Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study.

CONTEXT: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. OBJECTIVES: To identify barriers to effective symptom management in pediatric advanced cancer. METHODS: Using a qualitative multiple case study we refined the Pediatric Quality of Life and Evaluation of Symptoms Technology Response to the Pediatric Oncology Symptom Experience (PediQUEST Response), a pediatric palliative care (PPC) intervention. Twenty-three children aged ≥2 years old with advanced cancer, their parents and primary and PPC clinicians were enrolled. Children and parents reported symptoms weekly over 4-months using the Memorial Symptom Assessment Scale (MSAS) administered by an electronic system (PediQUEST). When symptom distress episodes (SDEs) were reported (MSAS symptom score ≥33) we studied symptom management processes using interviews of family members/clinicians, and chart abstractions. Data were coded and analyzed using grounded theory and NVivo software. RESULTS: Children reported 308 SDEs within 193 surveys and parents 529 SDEs in 165 surveys administered. We conducted 85 and 88 interviews with families and clinicians respectively. While we confirmed the presence of known barriers, we identified a prominent theme, that symptoms were "normalized." Patients, parents, and all clinicians, including PPC specialists, got accustomed to high symptom burden and lacked expectations that distress could be alleviated. We defined "normalization of symptoms," as the process by which symptom related suffering is appraised as unavoidable. CONCLUSION: Normalization of symptoms is a pervasive barrier enacted by all involved in caring for children with advanced cancer. Strategies to overcome normalization are critical to ease child distress.

Spanish Adaptation of the Pediatric Memorial Symptom Assessment Scale for Children, Teens, and Caregivers.

CONTEXT: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument. OBJECTIVES: To validate Pediatric-MSAS-Spanish (MSAS-Child, MSAS-Teen, and MSAS-Caregiver versions) in patients with cancer treated in two public hospitals in Buenos Aires, Argentina. METHODS: Cross-sectional study, classical psychometric theory. We recruited a convenience sample of 148 caregivers of children ≥ two years, 51 young children (seven to 12 years), and 48 adolescents (≥13 years). We assessed feasibility, comprehensibility, internal consistency, and convergent and known-groups validity. RESULTS: Pediatric-MSAS-Spanish was feasible, acceptable, and comprehensible. Reliability of MSAS-total and subscale scores was satisfactory (Cronbach alpha: 0.90, 0.89, 0.71, respectively, for caregiver, teen, and child MSAS-total score). MSAS-total caregiver, teen, and child scores met a priori criteria for convergent validity correlating with Pediatric Quality of Life Inventory total scores (Spearman correlation (rs) = -0.59, -0.66, and -0.32, respectively) and visual -analogue well-being scores (rs = -0.63, -0.46, and -0.4, respectively). Caregiver-teen correlation was strong for total (rs = 0.78) and physical (rs = 0.85) scores, and moderate for global distress index (rs = 0.64) and psychological (rs = 0.45) scores. MSAS-total caregiver-child correlation was moderate (rs = 0.30) and Kappa analysis showed poor agreement. All MSAS-Caregiver scores and MSAS-Teen total and physical scores differentiated inpatients/outpatients and patients on/off-treatment, while MSAS-Teen psychological and global distress index subscales or MSAS-Child scores did not. CONCLUSION: Pediatric-MSAS-Spanish is feasible and reliable for assessing symptom burden in children with cancer. Validity of MSAS-Caregiver and MSAS-Teen was largely supported. Further work on MSAS-Child is warranted.

Desarrollo e implementación del componente neonatal de la encuesta anual de recursos humanos en salud para cuidados paliativos / Development and implementation of the neonatal component of the annual survey of human resources in health for palliative care

INTRODUCCIÓN Se estima que un 3% de los nacidos vivos tendrán una enfermedad que amenaza la vida. La mayoría de estos niños se internarán en una unidad de cuidados intensivos neonatales (UCIN). Los Cuidados Paliativos (CP), alivian el sufrimiento y mejoran la calidad de vida, pudiendo integrarse a las UCIN. Se desconoce el grado de capacitación del personal de las UCIN así como su integración con CP. OBJETIVO Caracterizar grado de capacitación y competencias auto-percibidas en CP de profesionales que trabajan en UCIN de Argentina, y evaluar aspectos seleccionados de la provisión de CP. MÉTODO Estudio de corte transversal, realizado en servicios de neonatología de nivel IIIB(n=100). INSTRUMENTO Encuesta semiestructurada, online y autoadministrada con un módulo Institucional (jefes de servicio) y otro individual (administrado a médicos de planta y jefe/a de enfermería). Estadística descriptiva, chi2. RESULTADOS De las 100 instituciones que conformaban la muestra, se pudo identificar al jefe de servicio en 68 y 59 de ellos participaron de la encuesta; en 20 instituciones hay un equipo de CP; la tasa de respuesta fue 59% para el institucional y 52% del individual. La presencia de equipos de CP se asoció a mayor utilización de escalas del dolor (médicos p=0.003 / enfermeros p=0.008) y mayor reporte de competencias autopercibidas en cuidados paliativos de los profesionales de la salud. DISCUSIÓN Se pudo obtener información completa acerca competencias y prácticas de los profesionales de la salud en cuidados paliativos que trabajan en UCIN. Las prácticas institucionales respecto al fallecimiento de un neonato incluyen a las familias. Sin embargo, el personal médico y de enfermería de instituciones con equipos de CP se perciben más competentes respecto del uso de estrategias paliativas en la atención de sus pacientes, específicamente, en evaluar y tratar el dolor, comunicarse con las familias y decidir la adecuación del esfuerzo terapéutico

Childhood cancer in Argentina: Survival 2000-2007.

INTRODUCTION: Information on the epidemiology of childhood cancer in Latin America is limited. The Argentinean Oncopaediatric Registry (ROHA) is a population-based registry active since 2000. This paper describes the 3-year survival experience of children diagnosed with cancer in Argentina during 2000-2007 by major morphological subgroup, age, sex, and geographical region of residence. METHODS: Newly diagnosed paediatric cancer cases are registered in ROHA (estimated coverage is 93% of the country's cases). Three-year overall survival was estimated using Kaplan-Meier methods. Univariate Cox models were used to compare subgroup survival. RESULTS: Between 2000 and 2007, a total of 10,181 new cancer diagnoses in children aged 0-14 years were reported to the registry. Three-year overall survival (95%CI) for all cancers was 61.7% (60.7; 62.7). Specific survival for the most frequent morphological types was: leukaemias 63.3% (61.6; 64.9), lymphomas and related neoplasms 75.3% (72.7; 77.7), brain neoplasms 46.3% (43.9; 48.7), soft-tissue sarcomas 52.3% (48.0; 56.5), neuroblastomas 49.6% (44.6; 54.3), renal tumours 76.7% (72.2; 80.6), and malignant bone tumours 47.2% (42.3; 51.9). Overall survival was associated with age but not sex and varied by geographical region. Compared to other regions, patients who resided in the capital city had a significantly higher survival: 69.6% (65.8; 73.0) versus 63.5% (59.4; 67.4) in Patagonia, 63.2% (61.9; 64.5) in the central region, 58.0% (54.2; 61.7) in Cuyo, 55.6% (52.5; 58.6) in the north-east, and 55.4% (52.4; 58.2) in the north-west (all P values <0.005). CONCLUSIONS: Of children diagnosed with cancer in Argentina, 62% survived at least 3 years after diagnosis. Even though this figure is lower than that reported for more developed countries, survival patterns by diagnosis, age and sex were quite similar. Survival was lower in the two northern regions, which are areas with higher poverty levels.

Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children With Advanced Cancer: Assessment of the PediQUEST Study.

CONTEXT: Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. OBJECTIVES: To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. METHODS: This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. RESULTS: Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. CONCLUSION: A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life.

Disparities in pediatric leukemia early survival in Argentina: a population-based study / Disparidades en la supervivencia temprana a la leucemia infantil en Argentina: un estudio poblacional

OBJECTIVE: To identify disparities-using recursive partitioning (RP)-in early survival for children with leukemias treated in Argentina, and to depict the main characteristics of the most vulnerable groups. METHODS: This secondary data analysis evaluated 12-month survival (12-ms) in 3 987 children diagnosed between 2000 and 2008 with lymphoid leukemia (LL) and myeloid leukemia (ML) and registered in Argentina's population-based oncopediatric registry. Prognostic groups based on age at diagnosis, gender, socioeconomic index of the province of residence, and migration to a different province to receive health care were identified using the RP method. RESULTS: Overall 12-ms for LL and ML cases was 83.7% and 59.9% respectively. RP detected major gaps in 12-ms. Among 1-10-year-old LL patients from poorer provinces, 12-ms for those who did and did not migrate was 87.0% and 78.2% respectively. Survival of ML patients < 2 years old from provinces with a low/medium socioeconomic index was 38.9% compared to 62.1% for those in the same age group from richer provinces. For 2-14-year-old ML patients living in poor provinces, patient migration was associated with a 30% increase in 12-ms. CONCLUSIONS: Major disparities in leukemia survival among Argentine children were found. Patient migration and socioeconomic index of residence province were associated with survival. The RP method was instrumental in identifying and characterizing vulnerable groups.

OBJETIVO: Determinar mediante particionamiento recursivo las disparidades en la supervivencia temprana de los niños con leucemia tratados en Argentina, y presentar las características principales de los grupos más vulnerables. MÉTODOS: Análisis de datos secundarios en el que se evaluó la supervivencia a los 12 meses de 3 987 niños diagnosticados entre el 2000 y el 2008 de leucemia linfoide (LL) y leucemia mieloide (LM), e inscritos en el registro oncopediátrico poblacional de Argentina. Mediante el método de particionamiento recursivo se determinaron los grupos pronósticos con base en la edad en el momento del diagnóstico, el sexo, el índice socioeconómico de la provincia de residencia y la migración a una provincia diferente para recibir atención de salud. RESULTADOS: La supervivencia global a los 12 meses correspondiente a los casos de LL y LM fue de 83,7 y 59,9%, respectivamente, y el método detectó brechas importantes en la supervivencia. Entre los pacientes de 1 a 10 años con LL de las provincias más pobres la supervivencia a los 12 meses de los que migraron y de los que no lo hicieron fue de 87,0 y 78,2%, respectivamente. La supervivencia de los pacientes con LM menores de dos años que residían en las provincias con un índice socioeconómico bajo o medio fue de 38,9%, en comparación con 62,1% en los pacientes del mismo grupo etario que residían en las provincias más ricas. En los pacientes con LM de 2 a 14 años de edad que residían en las provincias pobres, la migración se asoció con un aumento de 30% en la supervivencia a los 12 meses. CONCLUSIONES: Se observaron importantes disparidades en la supervivencia de los niños argentinos con leucemia. La supervivencia se asoció con la migración y el índice socioeconómico de la provincia de residencia. El método de particionamiento recursivo contribuyó a la determinación y caracterización de los grupos vulnerables.

A population-based study of retinoblastoma incidence and survival in Argentine children.

BACKGROUND: An increased incidence of retinoblastoma in some developing countries has been reported but no conclusive data are available from population-based studies at national level. PURPOSE: To report the incidence and survival of retinoblastoma in Argentina from the National Pediatric Cancer Registry (ROHA) and the influence of socio-economical indicators on outcome. PROCEDURE: Cases reported to the ROHA (2000-2009) were analyzed. Incidence rates were calculated using National Vital Statistics and survival was estimated. The extended human development index (EHDI) was used as a socio-economical indicator. RESULTS: With 438 patients reported, an incidence of 5.0 cases per million children 0-14 years old (95% CI 3.5-6.4) was calculated. Median age at diagnosis was significantly higher for children from provinces with lower EHDI; (24 vs. 35 months for unilateral, (P = 0.003) and 9 versus 11.5 months for bilateral retinoblastoma (P = 0.027). The 3-year probability of survival was 0.87 and 0.94 for unilateral and bilateral retinoblastoma, respectively. Residents in provinces with higher EHDI had a better 3-year survival (0.93 vs. 0.77 for lower EHDI, P < 0.0001). Probability of survival was higher for patients treated at tertiary level institutions (P = 0.0015). The combination of low EHDI residence province with no treatment at a tertiary institution was associated with the worst survival outcome. For both, unilateral and bilateral disease, children who died were in average diagnosed at older age. CONCLUSIONS: The incidence of retinoblastoma in Argentina is comparable to that of developed countries. Retinoblastoma is diagnosed later and survival is lower in the less developed areas of the country.

Disparities in pediatric leukemia early survival in Argentina: a population-based study.

OBJECTIVE: To identify disparities-using recursive partitioning (RP)-in early survival for children with leukemias treated in Argentina, and to depict the main characteristics of the most vulnerable groups. METHODS: This secondary data analysis evaluated 12-month survival (12-ms) in 3 987 children diagnosed between 2000 and 2008 with lymphoid leukemia (LL) and myeloid leukemia (ML) and registered in Argentina's population-based oncopediatric registry. Prognostic groups based on age at diagnosis, gender, socioeconomic index of the province of residence, and migration to a different province to receive health care were identified using the RP method. RESULTS: Overall 12-ms for LL and ML cases was 83.7% and 59.9% respectively. RP detected major gaps in 12-ms. Among 1-10-year-old LL patients from poorer provinces, 12-ms for those who did and did not migrate was 87.0% and 78.2% respectively. Survival of ML patients < 2 years old from provinces with a low/medium socioeconomic index was 38.9% compared to 62.1% for those in the same age group from richer provinces. For 2-14-year-old ML patients living in poor provinces, patient migration was associated with a 30% increase in 12-ms. CONCLUSIONS: Major disparities in leukemia survival among Argentine children were found. Patient migration and socioeconomic index of residence province were associated with survival. The RP method was instrumental in identifying and characterizing vulnerable groups.

Initial validation of the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in children and adolescents with chronic diseases: acceptability and comprehensibility in low-income settings.

BACKGROUND: To validate the Argentinean Spanish version of the PedsQL 4.0 Generic Core Scales in Argentinean children and adolescents with chronic conditions and to assess the impact of socio-demographic characteristics on the instrument's comprehensibility and acceptability. Reliability, and known-groups, and convergent validity were tested. METHODS: Consecutive sample of 287 children with chronic conditions and 105 healthy children, ages 2-18, and their parents. Chronically ill children were: (1) attending outpatient clinics and (2) had one of the following diagnoses: stem cell transplant, chronic obstructive pulmonary disease, HIV/AIDS, cancer, end stage renal disease, complex congenital cardiopathy. Patients and adult proxies completed the PedsQL 4.0 and an overall health status assessment. Physicians were asked to rate degree of health status impairment. RESULTS: The PedsQL 4.0 was feasible (only 9 children, all 5 to 7 year-olds, could not complete the instrument), easy to administer, completed without, or with minimal, help by most children and parents, and required a brief administration time (average 5-6 minutes). People living below the poverty line and/or low literacy needed more help to complete the instrument. Cronbach Alpha's internal consistency values for the total and subscale scores exceeded 0.70 for self-reports of children over 8 years-old and parent-reports of children over 5 years of age. Reliability of proxy-reports of 2-4 year-olds was low but improved when school items were excluded. Internal consistency for 5-7 year-olds was low (alpha range = 0.28-0.76). Construct validity was good. Child self-report and parent proxy-report PedsQL 4.0 scores were moderately but significantly correlated (rho = 0.39, p < 0.0001) and both significantly correlated with physician's assessment of health impairment and with child self-reported overall health status. The PedsQL 4.0 discriminated between healthy and chronically ill children (72.72 and 66.87, for healthy and ill children, respectively, p = 0.01), between different chronic health conditions, and children from lower socioeconomic status. CONCLUSION: Results suggest that the Argentinean Spanish PedsQL 4.0 is suitable for research purposes in the public health setting for children over 8 years old and parents of children over 5 years old. People with low income and low literacy need help to complete the instrument. Steps to expand the use of the Argentinean Spanish PedsQL 4.0 include an alternative approach to scoring for the 2-4 year-olds, further understanding of how to increase reliability for the 5-7 year-olds self-report, and confirmation of other aspects of validity.

Infección por virus sincicial respiratorio en poblaciones vulnerables: riesgo biológico contra riesgo social / Respiratory syncitial virus infection in vulnerable population: biological risk versus social risk

Los prematuros con displasia broncopulmonar y sin ella tienen alto riesgo de hospitalización por infección por virus sincicial respiratorio. En Argentina no existen suficientes datos epidemiológicos que permitan extrapolar las recomendaciones establecidas para el empleo de palivizumab para la profilaxis pasiva de este virus en poblaciones vulnerables. Además del riesgo biológico, pocos estudios han explorado el impacto del contexto socioambiental. El objetivo de este estudio fue analizar los factores biológicos y socioambientales asociados con la ocurrencia de formas graves de infección respiratoria por virus sincicial respiratorio en prematuros con displasia broncopulmonar o sin ella.

Infección por virus sincicial respiratorio en poblaciones vulnerables: riesgo biólógico contra riesgo social / Respiratory syncytial virus prophylaxis in high populations: biological risk vs. social risk

Introducción. Los prematuros con displasia broncopulmonary sin ella tienen alto riesgo de hospitalización por infección por virus sincicial respiratorio. En Argentina no existen suficientes datos epidemiológicos que permitan extrapolar las recomendaciones establecidas para el empleo de palivizumab para la profilaxis pasiva de este virus en poblaciones vulnerables. Además del riesgo biológico,pocos estudios han explorado el impacto del contexto socioambiental. El objetivo de este estudio fueanalizar los factores biológicos y socioambientales asociados con la ocurrencia de formas graves deinfección respiratoria por virus sincicial respiratorio en prematuros con displasia broncopulmonar osin ella. Población, material y métodos. El diseño del estudio esde casos y controles. Se incluyeron todos los niños atendidos en el programa de seguimiento entre losmeses de mayo a septiembre de los años 1998 a2002, que cumplían con los criterios para profilaxiscon palivizumab que recomienda la Academia Estadounidensede Pediatría. Se exploraron retrospectivamente variables de riesgo biológico y de riesgo social.Resultados. De los 121 pacientes analizados, 30(25%) requirieron internación (casos). No requirieron internación 91 pacientes (controles). Entrelas variables de riesgo biológico analizadas, los casos tuvieron peso al nacer y edad gestacional mayores que los controles (PN: 1.329 g ± 450 contra1.145 g ± 393). No se hallaron diferencias significativas en otras variables de riesgo biológico. El análisis de las variables de riesgo social sólo mostró diferencias al comparar la presencia de hermanoso convivientes en edad escolar y el nivel de educación materna menor a primario completo(OR 5,4 IC 95% 1,7-16; OR 5,8 IC95% 2,2-15,4). Conclusiones. Nuestros resultados muestran que el peso de nacimiento y la edad gestacional podrían peso de nacimiento y la edad gestacional podrían ser insuficientes para determinar la probabilidad de internación por virus sincicial respiratorio. La presencia de convivientes menores de 10 años y la educación materna se asociaron con riesgo de infección. bilidad de internación por virus sincicial respiratorio. La presencia de convivientes menores de 10 años y la educación materna se asociaron con riesgo de infección.

Infección por virus sincicial respiratorio en poblaciones vulnerables: riesgo biólógico contra riesgo social / Respiratory syncytial virus prophylaxis in high populations: biological risk vs. social risk

Introducción. Los prematuros con displasia broncopulmonary sin ella tienen alto riesgo de hospitalización por infección por virus sincicial respiratorio. En Argentina no existen suficientes datos epidemiológicos que permitan extrapolar las recomendaciones establecidas para el empleo de palivizumab para la profilaxis pasiva de este virus en poblaciones vulnerables. Además del riesgo biológico,pocos estudios han explorado el impacto del contexto socioambiental. El objetivo de este estudio fueanalizar los factores biológicos y socioambientales asociados con la ocurrencia de formas graves deinfección respiratoria por virus sincicial respiratorio en prematuros con displasia broncopulmonar osin ella. Población, material y métodos. El diseño del estudio esde casos y controles. Se incluyeron todos los niños atendidos en el programa de seguimiento entre losmeses de mayo a septiembre de los años 1998 a2002, que cumplían con los criterios para profilaxiscon palivizumab que recomienda la Academia Estadounidensede Pediatría. Se exploraron retrospectivamente variables de riesgo biológico y de riesgo social.Resultados. De los 121 pacientes analizados, 30(25%) requirieron internación (casos). No requirieron internación 91 pacientes (controles). Entrelas variables de riesgo biológico analizadas, los casos tuvieron peso al nacer y edad gestacional mayores que los controles (PN: 1.329 g ± 450 contra1.145 g ± 393). No se hallaron diferencias significativas en otras variables de riesgo biológico. El análisis de las variables de riesgo social sólo mostró diferencias al comparar la presencia de hermanoso convivientes en edad escolar y el nivel de educación materna menor a primario completo(OR 5,4 IC 95% 1,7-16; OR 5,8 IC95% 2,2-15,4). Conclusiones. Nuestros resultados muestran que el peso de nacimiento y la edad gestacional podrían peso de nacimiento y la edad gestacional podrían ser insuficientes para determinar la probabilidad de internación por virus sincicial respiratorio. La presencia de convivientes menores de 10 años y la educación materna se asociaron con riesgo de infección. bilidad de internación por virus sincicial respiratorio. La presencia de convivientes menores de 10 años y la educación materna se asociaron con riesgo de infección.(AU)