Calidad de vida de los hermanos de pacientes con enfermedad crónica / Quality of life among siblings of patients with chronic conditions

Introducción. La calidad de vida relacionada con la salud (CVRS) es una medida de resultado de salud. Evalúa el impacto subjetivo y global de las enfermedades en la vida cotidiana. Brinda información multidimensional sobre el bienestar físico, relación familiar y sus pares. Los estudios de CVRS de hermanos son limitados.Objetivo. Comparar CVRS de los hermanos de pacientes pediátricos con patologías reumáticas crónicas, trasplante renal o hepático con la de niños sanos con hermanos sin enfermedades crónicas.Resultados. Se compararon hermanos de niños con trasplante renal (n: 65), trasplante hepático (n: 35) y patologías reumáticas crónicas (n: 36) con el grupo control de niños sanos (n: 51). El grupo total de hermanos tuvieron puntuación más baja, estadísticamente significativa, en las dimensiones bienestar físico, amigos-apoyo social y recursos económicos. Los hermanos de trasplante renal tuvieron baja puntuación en las dimensiones de bienestar físico (p < 0,02; tamaño del efecto ­TE­: 0,66) y recursos económicos (p < 0,01; TE: 0,66). Los hermanos de trasplante hepático percibieron menor bienestar físico (p = 0,04), tenían menos amigos y apoyo social (p < 0,01), dificultades en el entorno escolar (p < 0,02) y recursos económicos (p < 0,01). Los hermanos de patologías reumáticas crónicas tuvieron menor bienestar físico (p < 0,05; TE: 0,44) y apoyo social-amigos (p < 0,01; TE: 0,58).Conclusión. La CVRS de niños/as sanos de hermanos con patologías crónicas es menor en bienestar físico, amigos-apoyo social y recursos económicos comparada con el grupo de niños sanos.

Introduction. Health-related quality of life (HRQoL) is a measure of health outcomes. It assesses the subjective and overall impact of diseases on daily life. It also provides multidimensional data about physical well-being, family and peers relations. HRQoL studies on siblings are limited.Objective. To compare HRQoL among siblings of pediatric patients with chronic rheumatic diseases, kidney or liver transplant and healthy children whose siblings had no chronic conditions.Results. The siblings of children with kidney transplant (n: 65), liver transplant (n: 35), and chronic rheumatic diseases (n: 36) were compared to the healthy children group (n: 51). The total siblings group had a lower, statistically significant score in the physical well-being, social support and peers, and financial resources dimensions. The siblings of kidney transplant patients had a low score in the physical well-being (p < 0.02; effect size [ES]: 0.66) and financial resources (p < 0.01; ES: 0.66) dimensions. The siblings of liver transplant patients perceived a lower physical well-being (p = 0.04), less social support and peers(p < 0.01), and difficulties in relation to school environment (p < 0.02) and financial resources (p < 0.01). The siblings of those with chronic rheumatic diseases had a lower score in the physical well-being (p < 0.05; ES: 0.44) and social support and peers (p < 0.01; ES: 0.58) dimensions.Conclusion. HRQoL among healthy children whose siblings have a chronic disease was lower in the physical well-being, social support and peers, and financial resources dimensions compared to the healthy children group.

Calidad de vida relacionada con la salud en niños con cardiopatía congénita operados durante el primer año de vida / Health related quality of life in children with congenital heart disease that undergo cardiac surgery during their first year of life

Introducción. En las últimas décadas, el desarrollo de métodos diagnósticos, técnicas quirúrgicas y cuidados intensivos, aumentó la sobrevida de los niños con cardiopatía congénita. En este contexto, las secuelas a largo plazo adquirieron mayor relevancia. La calidad de vida relacionada con la salud mide el impacto de las enfermedades crónicas. Nuestro objetivo fue describir la calidad de vida relacionada con la salud en pacientes con cardiopatía congénita operados durante el primer año de vida.Población y métodos. Estudio observacional, transversal, realizado entre agosto de 2017 y diciembre de 2018 en un hospital general universitario. Se utilizó el cuestionario PedsQL 4.0, versión genérica. Se incluyeron pacientes de entre 2 y 4 años con cardiopatía congénita operados durante el primer año de vida y niños sanos. Se compararon los resultados con T-Test o Wilcoxon según la distribución observada. Se consideró significativo el valor de p < 0,05.Resultados. Se incluyeron 31 pacientes. El 26 % tenían ventrículo único. La primera cirugía fue, en un 61,3 %, en el período neonatal. No hubo diferencia (p = 0,10) entre la calidad de vida relacionada con la salud global de la población con cardiopatía congénita y de los niños sanos. Sin embargo, se observaron puntajes más bajos con diferencia estadísticamente significativa en las esferas social (p = 0,0092) y escolar (p = 0,0001).Conclusiones. Nuestra cohorte de niños con cardiopatía congénita tiene una calidad de vida global comparable con la de los niños sanos, excepto en las escalas correspondientes a funcionamiento social y escolar.

Introduction. Advances in diagnostic methods, surgical techniques and postoperative intensive care have significantly increased the survival rates for children with congenital heart disease.In this context, long term sequelae acquired greater relevance. Health-related quality of life (HRQOL) is a concept that helps to measure the impact of chronic diseases.The purpose of the current study was to describe HRQOL in children with congenital heart disease that undergo cardiac surgery during their first year of life.Methods. A cross-sectional observational study was conducted between August 2017 and December 2018 at a University General Hospital. PedsQL 4.0 Generic Core Scales were used.Children with congenital heart disease between 2 and 4 years old who had cardiac surgery during their first year of life and healthy children were included.Scores were compared with T-test or Wilcoxon according to the observed distribution. p value < 0.05 was considered significant.Results. A total of 31 children with congenital heart disease (26 % with a single ventricle) and 62 healthy children were enrolled. The first surgery was in the neonatal period in 61.3 %.Our study showed no statistical differences (p = 0.10) between HRQOL Total Scale Score of children with congenital heart disease compared to healthy children. However, lower scores were observed with statistically significant differences in social (p = 0.0092) and school (p = 0.0001) scales.Conclusions. Our cohort of children diagnosed with congenital heart disease has a global quality of life comparable with healthy children except in social and school functioning scales.

Validación español-argentina del cuestionario de transición a la atención médica del adulto en adolescentes con enfermedades crónicas / Validation of the Argentine Spanish version of Transition Readiness Assessment Questionnaire for adolescents with chronic conditions

Introducción. El pasaje de adolescentes con enfermedades crónicas al seguimiento como adultos es un proceso complejo y creciente. Los pacientes necesitan adquirir conocimientos y habilidades que aseguren la continuidad de su cuidado. El objetivo fue llevar a cabo la validación del instrumento Transition Readiness Assessment Questionnaire (TRAQ) 5.0, versión en español argentino, en adolescentes y adultos jóvenes con enfermedades crónicas. Población y métodos. Estudio descriptivo, transversal y cuantitativo. Se incluyeron pacientes mayores de 14 años con enfermedad crónica atendidos en el Hospital Garrahan. El TRAQ incluye 20 ítems en 5 subescalas (medicación, asistencia a citas, seguimiento de problemas de salud, comunicación con profesionales, manejo de actividades cotidianas) y se responde de modo autoadministrado. Los pacientes completaron el TRAQ, una encuesta de opinión sobre su uso y otra escala de autopercepción de autonomía; sus médicos, una escala sobre el compromiso de la enfermedad. Se registraron variables sociodemográficas, clínicas y relacionadas con el TRAQ. Resultados. Participaron 191 pacientes. El TRAQ 5.0 pudo ser comprendido y completado por la mayoría de los pacientes (96,3%), en forma autoadministrada, en poco tiempo (mediana: 5 minutos) y con poca o ninguna ayuda (81%). Presentar pobreza o escolaridad no acorde aumentó la necesidad de ayuda. La consistencia interna (alfa de Cronbach) para la puntuación total fue 0,81. Se demostró validez de construcción al testear diferentes hipótesis (todas p < 0,05): discriminación según edad ≥ 16 años (3,01 vs. 3,34), sexo (mujeres: 3,38 > varones: 3,12) y presencia de proyecto futuro (sin: 3,01 < con: 3,34); correlación con escala de autopercepción (r: 0,49). Conclusión. El TRAQ 5.0 queda disponible para ser utilizado en adolescentes argentinos con enfermedades crónicas.

Introduction. The transition of adolescents with chronic conditions to adult follow-up care is an increasingly complex process. Patients need to acquire knowledge and skills that ensure continuity of their care. The goal of this study was to validate the Argentinian Spanish version of the Transition Readiness Assessment Questionnaire (TRAQ) 5.0 tool in adolescents and young adults with chronic conditions. Population and methods. Descriptive, crosssectional, quantitative study. Patients with chronic conditions aged 14 years or older treated at Hospital Garrahan were included. The TRAQ is made up of 20 items divided into 5 subscales (Managing Medication, Appointment Keeping, Tracking Health Issues, Talking with Providers, Managing Daily Activities), and is designed to be self-administered. Patients completed the TRAQ, as well as an opinion survey about its use and a self-perceived autonomy scale; their physicians answered a scale about patients' health impairment due to the condition. Sociodemographic, clinical and TRAQ-related variables were recorded. Results. A total of 191 patients participated. The majority of patients (96.3%) understood the TRAQ 5.0 questionnaire and completed it correctly, in self-administered modality, in a short time (median: 5 minutes), with little or no help (81%). Patients who live in poverty or have a lower education level than the one expected for their age needed more help. Internal consistency (Cronbach's alpha) for the overall score was 0.81. Construct validity was demonstrated by testing different hypotheses (all p < 0.05): discriminationby age ≥ 16 years (3.01 vs. 3.34), sex (women: 3.38 > men: 3.12) and having plans for the future (without plans: 3.01 < with plans: 3.34); correlation with self-perception scale (r= 0.49). Conclusion. The TRAQ 5.0 tool is available for use inArgentinianadolescents with chronic conditions.

Experiencia educativa para estudiantes de medicina de la Universidad de Buenos Aires (UBA) en la evaluación del Calendario Nacional de Vacunación de niños que concurrieron a Hospitales de la Ciudad Autónoma de Buenos Aires (CABA) / Educational experience for medical students at the University of Buenos Aires (UBA) in the evaluation of the National Vaccination Calendar of children who attended hospitals of the Autonomous City of Buenos Aires (CABA)

Objetivos: La participación de alumnos en estudios que evalúan el cumplimiento del programa de Inmunizaciones (PAI) y sus causales representa una experiencia relevante. La evaluación del cumplimiento del PAI permite proponer estrategias para aumentar coberturas.Métodos: Estudio observacional, analítico, transversal. Población: Neonatos a 11 años de edad, realizado en 6 hospitales de la CABA. Período: 1/06-31/12/2014. Participaron estudiantes del internado anual rotatorio capacitados sobre PAI,supervisados por docentes.Criterio de inclusión: Presentar el carné de vacunación, no tener condiciones que impidieran indicación del PAI.Resultados: Encuestas 531. Esquema incompleto o no recibió ninguna vacuna 25,7 por ciento. Se asociaron a incumplimiento las siguientes variables: Edad <1 año, edad materna <28 años, escasa educación materna, embarazo no controlado, ausencia de control de salud, internados, consulta porenfermedad. Análisis multivariado: falta de control de salud: RR 2,1(IC 95 por ciento:1,4-2,9).Como motivo de OPV predominó olvido (71,8 por ciento). Los alumnos refirieron útil su participación. Consideraron positivo aprender a investigar, contacto con pacientes y familiares, trabajar en equipo. Negativo: restó tiempo para estudiar.Conclusiones: Interactuar con la comunidad permitiría eliminar barreras que condicionan OPV. La comunicación es valiosa para lograr este objetivo. La participación supervisada de alumnos fue una experiencia innovadora, al introducirlos en la investigación clínica.

Introduction: The participation of students in research studies is a valuable teaching objective. Particularly evaluating implementation of the National immunization Program and their causal, allowing to propose strategies to increase coverage.Methods: An observational, analytical, crosssectional study. Population: Newborn to 11 years old, conducted in 6 hospitals of Buenos Aires city. Period: 1/06-31/12/2014. Pediatrics students belonging to the pediatric annualtraining in pediatrics, supervised by their teachers. Inclusion criteria: Presentation the vaccination card, have no conditions that would prevent indication of the vaccines.Results: 531 surveys were completed.Incomplete scheme, or no received vaccine 25.7 percent. The following variables were associated with non-compliance schedule: Age <1 year, maternal age <28 years, lowmaternal education, uncontrolled pregnancy, lack of health control, boarding, ambulatory consult for disease. Multivariate analysis: lackof control health: RR 2.1 (95 percent CI: 1.4-2.9).Family forgot vaccinate the child prevailed (71.8 percent). Students reported their participation useful. They considered positive learning how to research, contact with patients andfamilies, teamwork. As negative: Rest time to study.Conclusions: Interacting with the community enable barriers that condition not comply with the scheme. Communication is valuable to achieving this aim. Supervised student participation was an innovative experience to introduce in clinical research.

Calidad de vida relacionada con la salud de niños con enfermedades crónicas alojados en un hospedaje integral en la Ciudad de Buenos Aires / Health-related quality of life in children with chronic conditions lodged at a comprehensive accommodation in the City of Buenos Aires

Introducción. El tratamiento de enfermedades crónicas suele requerir un entrenamiento profesional multidisciplinario. Existen alojamientos integrales adaptados a las necesidades de familias que deben permanecer por períodos prolongados lejos de su hogar. Objetivos. Evaluar el impacto de un programa de hospedaje integral sobre la calidad de vida relacionada con la salud de niños con patologías crónicas atendidos en un hospital de la Ciudad de Buenos Aires, en comparación con niños alojados en hospedajes tradicionales y con niños sanos. Analizar la concordancia entre la declaración de niños y cuidadores. Métodos. Estudio observacional transversal. Grupo 1: niños con trastornos crónicos hospedados en un alojamiento integral; Grupo 2: niños con trastornos crónicos hospedados en un alojamiento tradicional; Grupo 3: niños sanos. Se utilizó la versión argentina del cuestionario Kidscreen-52. El valor p < 0,05, tamaño de efecto (TE) > 0,20 y el coeficiente de correlación interclase (CCI) > 0,60 fueron considerados significativos. Resultados. 250 duplas niños/as-cuidadores (50 en cada grupo crónico y 150 controles sanos). Edad media: 12,6 años (rango de 8-18 años); 56%, varones. Niños del Grupo 1 manifestaron mejor estado de ánimo, relación parental, amigos y entorno escolar comparado con el Grupo 2 (p < 0,05, TE > 0,20). La concordancia entre la declaración de niños y cuidadores fue baja, principalmente en las dimensiones psicosociales (CCI < 0,29). Conclusiones. Los niños con trastornos crónicos pueden conservar, pese al desarraigo, una buena relación parental, lazos de amistad y apoyo social, y no ver discontinuada su escolaridad, en un hogar integral adaptado a sus necesidades durante su estadía en la Ciudad de Buenos Aires.

Introduction.The treatment of chronic diseases usually requires a multidisciplinary professional training.There are comprehensive accommodations that are adapted to the needs of the families that have to stay away from home for long periods. Objectives.To assess the impact of a comprehensive accommodation on the health-related quality of life of children with chronic conditions seen at a hospital of the City of Buenos Aires compared to children lodged at a traditional accommodation and to healthy children. To analyze the agreement between children's and caregivers' opinions. Metfeods.Cross-sectional, observational study. Group 1:children with chronic conditions lodged at a comprehensive accommodation. Group 2: children with chronic conditions lodged at a traditional accommodation. Group 3: healthy children. The Argentine version of the Kidscreen-52 questionnaire was used. A value of p < 0.05, the effect size (ES) > 0.20, and the intraclass correlation coefficient (ICC) > 0.60 were considered significant. Results.Two hundred and fifty children/caregiver dyads (50 in each chronic group and 150 healthy controls). Mean age: 12.6 years old (range: 8-18 years old), 56% were males. The children in Group 1 showed better moods and emotions, a better relationship with parents and peers, and a better school environment than those in Group 2 (p < 0.05, ES > 0.20). Agreement between children's and caregivers' opinion was low, especially in relation to psychosocial dimensions (ICC < 0.29). Conclusions.In spite of their uprooting, children with chronic conditions are capable of maintaining a good relationship with their parents, a good peer bond and social support, and do not need discontinue their education while lodged at a comprehensive accommodation adapted to their needs during their stay in the City of Buenos Aires.

Impacto da separação sobre a qualidade de vida de crianças em idade escolar / Impact of divorce on the quality of life in school-age children

OBJETIVO: Avaliar a qualidade de vida psicossocial em filhos de pais separados em idade escolar. MÉTODOS: Conduziu-se um estudo transversal no ambulatório pediátrico de um hospital comunitário. Foram incluídas crianças de 5 a 12 anos de idade, de famílias intactas e de famílias separadas. A qualidade de vida das crianças foi avaliada através de relatórios maternos, utilizando-se o Child Health Questionnaire - Parent Form 50. Um modelo de regressão linear múltipla foi construído incluindo variáveis clinicamente relevantes significativas para a análise univariada (coeficiente beta e IC de 95 por cento). RESULTADOS: Trezentas e trinta famílias foram convidadas a participar e 313 preencheram o questionário. A análise univariada demonstrou que a qualidade de vida estava significativamente associada à separação parental, sexo da criança, tempo passado com o pai, padrão de vida e nível de instrução materno. Em um modelo de regressão linear múltipla, os escores de qualidade de vida se mostraram mais baixos em meninos -4,5 (-6,8 a -2,3) e mais altos para tempo passado com o pai 0,09 (0,01 a 0,2). Em famílias separadas, a regressão demonstrou que os escores de qualidade de vida foram maiores quando a separação dos pais ocorrera em acordo mútuo 6,1 (2,7 a 9,4), quando a mãe possuía nível universitário 5,9 (1,7 a 10,1) e para cada ano passado desde a separação 0,6 (0,2 a 1,1), enquanto os escores foram menores em meninos -5,4 (-9,5 a -1,3) e para cada incremento de um ano da idade materna -0,4 (-0,7 a -0,05). CONCLUSÃO: A qualidade de vida psicossocial das crianças foi afetada pela separação. O Child Health Questionnaire pode ser útil para detectar um declínio na qualidade de vida psicossocial.

OBJECTIVE: To assess psychosocial quality of life in school-age children of divorced parents. METHODS: A cross-sectional survey was conducted at the pediatric outpatient clinic of a community hospital. Children 5 to 12 years old from married families and divorced families were included. Child quality of life was assessed through maternal reports using a Child Health Questionnaire - Parent Form 50. A multiple linear regression model was constructed including clinically relevant variables significant on univariate analysis (beta coefficient and 95 percentCI). RESULTS: Three hundred and thirty families were invited to participate and 313 completed the questionnaire. Univariate analysis showed that quality of life was significantly associated with parental separation, child sex, time spent with the father, standard of living, and maternal education. In a multiple linear regression model, quality of life scores decreased in boys -4.5 (-6.8 to -2.3) and increased for time spent with the father 0.09 (0.01 to 0.2). In divorced families, multiple linear regression showed that quality of life scores increased when parents had separated by mutual agreement 6.1 (2.7 to 9.4), when the mother had university level education 5.9 (1.7 to 10.1) and for each year elapsed since separation 0.6 (0.2 to 1.1), whereas scores decreased in boys -5.4 (-9.5 to -1.3) and for each one-year increment of maternal age -0.4 (-0.7 to -0.05). CONCLUSION: Childrens psychosocial quality of life was affected by divorce. The Child Health Questionnaire can be useful to detect a decline in the psychosocial quality of life.

Análisis de registros de tensión arterial en pacientes de 3-20 años por pediatras en la historia clínica electrónica / Analysis of blood pressure measurement by pediatricians, in patients from 3 to 20 year of age in the electronic health record

Introducción. El control de la tensión arterial (TA)es una práctica recomendada por lo menos una vezal año, para todos los niños sanos mayores de 3 añosy antes de esta edad en aquellos niños con riesgo elevado de desarrollar hipertensión arterial. Los médicos pediatras cumplen en forma irregular esta recomendación. Objetivos. Conocer la prevalencia de registros de tensión arterial en una historia clínica informatizada en pacientes de 3-20 años de edad en el servicio de Clínica Pediátrica y la prevalencia de registros de TA elevados (hipertensión arterial y TA alta o prehipertensión) según sexo, edad y percentilo de talla. Población, material y métodos. Se realizó un estudio transversal, descriptivo y analítico. Se evaluaron 8.140 registros de pacientes de 3-20 años de edad atendidos al menos en una oportunidad entre enero y junio de 2005 por su médico de cabecera. Para definir hipertensión arterial, prehipertensión y registros de tensión arteriales normales se utilizóla recomendación publicada en Pediatrics 2004 Aug;114: 555-76. Resultados. A 2.723 de los 8.140 pacientes atendidosse les registró la TA (33,4 por ciento). El 76 por ciento de los registros fueron de normotensión, el 17 por ciento de prehipertensión y el 7 por ciento de hipertensión. El porcentaje de prehipertensión fue significativamente mayor en los varones (21,7 por ciento contra 13,4 por ciento) OR: 1,6 (IC 95 por cientol 1,3-1,9), enpacientes con registros de hipertensión no hubo diferencias (7,4 por ciento contra 6,8 por ciento). El 50 por ciento de los pediatras registró la TA al 9 por ciento o menos de los niños. Conclusiones. La prevalencia de registros de TA fuede un tercio en las historias clínicas electrónicas delos pacientes. Corresponde generar acciones que estimulen esta práctica

Introduction. Blood pressure measurement (BPM) is a recommended practice at least once a year for all of healthy children starting from 3 years old and before that age in population at risk. Pediatricians fulfilling of this recommendation is irregular. Objective. Identify the prevalence of records of BPM in a pediatric electronic health record (EHR) in patients from 3 to 20 years of age and the prevalence of records of hypertension (HBP) and prehypertension (preHBP) according to sex, age and percentile of height. Population, material and methods. A cross-sectional and analytical study was conducted. 8140 patients from 3 to 20 years of age seen by their primary care physician at least in one opportunity between January and June 2005 were evaluated. Hypertension, prehypertension and normal BP was defined based on the recommendation published in Pediatrics 2004 Aug; 114: 555-76. Results. 2.723 of the 8.140 patients had BP registered in the EHR (33.4%), 76% of the records were of normal BP, 17% of preHBP and 7% of HBP. The percentage of preHBP was significantly higher in males (21.7% vs. 13.4%) OR: 1.6 (IC 95% 1.3-1.9), but not in HBP (7.4% vs. 6.8%). 50% of the pediatricians registered 9% or less of their patients BP. Conclusions. The prevalence of BPM was a third; there is a need of generating actions that stimulate this practice.

Growth acceleration in children with chronic renal failure treated with growth-hormone-releasing hormone (GHRH)

Growth retardation is a prominent clinical manifestation in children with chronic renal failure (CRF). Nine children with CRF (3 on conservative treatment; 3 on dialysis and 3 after renal transplantation) aged 1.6 to 14.0 (x+ SE: 8.1 + 1.4) years, were treated with twice daily subcutaneous injections of 26 + 2.4 mug/Kg/day growth-hormone-releasing-hormone [GHRH (1-29) NH2 Serono (Geref)] during 3 to 6 months. Mean serum urea and creatinine remained stable, although 2 patients on conservative treatment showed a moderate increase in serum creatinine. At the start of the study, heigth SDS was - 2.2 + 0.2 (x + SE), growth velocity was 4.5 + 1.0 cm/year (-2.3 + 0.6 DS for chronological age) and growth hormone (GH) response to acute GHRH test (1 mug/Kg IV) was 62 + 17.5 ng/ml. Five patients increased height velocity from 3.8 + 0.7 to 8.0 + 1.2 cm/year (paired t test, p < 0.05). The peak GH response to GHRH was significantly higher in the group of growth non-responders than in the responders (p<0.05). In conclusion, 5 out of 9 short children with CRF, 3 on conservative treatment, 1 on dialysis and 1 post renal transplantation, showed improved growth in response to GHRH therapy. No consistent effect on renal function was detected. GHRH may be an alternative therapy to increase grwth velocity in patients with CRF.