Early use of teduglutide in paediatric patients with intestinal failure is associated with a greater response rate: a multicenter study.

Teduglutide is a glucagon-like-peptide-2 analogue that reduces the need for parenteral support in patients with short bowel syndrome (SBS). Nevertheless, data about long-term therapy with teduglutide in children are still scarce. Our objective was to describe the real-life experience with teduglutide in children with SBS over the last 5 years in Spain. This was a national multicentre and prospective study of paediatric patients with intestinal failure (IF) treated with teduglutide for at least 3 months. The data included demographic characteristics, medical background, anthropometric data, laboratory assessments, adverse events, and parenteral nutrition (PN) requirements. Treatment response was defined as a > 20% reduction in the PN requirement. The data were collected from the Research Electronic Data Capture (REDCap) database. Thirty-one patients from seven centres were included; the median age at the beginning of the treatment was 2.3 (interquartile range (IQR) 1.4-4.4) years; and 65% of the patients were males. The most frequent cause of IF was SBS (94%). The most common cause of SBS was necrotizing enterocolitis (35%). The median residual bowel length was 29 (IQR 12-40) cm. The median duration of teduglutide therapy was 19 (IQR 12-36) months, with 23 patients (74%) treated for > 1 year and 9 treated for > 3 years. The response to treatment was analysed in 30 patients. Twenty-four patients (80%) had a reduction in their weekly PN energy > 20% and 23 patients (77%) had a reduction in their weekly PN volume > 20%. Among the responders, 9 patients (29%) were weaned off PN, with a median treatment duration of 6 (IQR 4.5-22) months. The only statistically significant finding demonstrated an association between a > 20% reduction in the weekly PN volume and a younger age at the start of treatment (p = 0.028).   Conclusions: Teduglutide seems to be an effective and safe treatment for paediatric patients with IF. Some patients require a prolonged duration of treatment to achieve enteral autonomy. Starting treatment with teduglutide at a young age is associated with a higher response rate. What is Known: •  Glucagon-like peptide-2 (GLP-2) plays a crucial role in the regulation of intestinal adaptation in short bowel syndrome (SBS). Teduglutide is a GLP-2 analog that reduces the need for parenteral support in patients with SBS. • Data about long-term therapy with teduglutide in children in real life are still scarce. What is New: • Most pediatric patients with SBS respond in a satisfactory manner to teduglutide treatment. The occurrence of long-term adverse effects is exceptional. • Starting treatment with the drug at a young age is associated with a greater response rate.

Higher adherence to the Mediterranean Diet is associated with lower micronutrient inadequacy in children: the SENDO project.

OBJECTIVE: To assess whether the Mediterranean Diet (MedDiet) is associated with lower micronutrients inadequacy in a sample of Spanish preschoolers. DESIGN: We conducted a cross-sectional study with 4-5-year-old children participating in the SENDO project. Information was gathered through an online questionnaire completed by parents. Dietary information was collected with a previously validated semi-quantitative FFQ. The estimated average requirements or adequate intake levels as proposed by the Institute of Medicine were used as cut-off point to define inadequate intake. STATISTICAL ANALYSES: Crude and multivariable adjusted estimates were calculated with generalised estimated equations to account for intra-cluster correlation between siblings. PARTICIPANTS: We used baseline information of 1153 participants enrolled in the SENDO project between January 2015 and June 2022. MAIN OUTCOMES MEASURES: OR and 95 % CI of presenting an inadequate intake of ≥ 3 micronutrients associated with the MedDiet. RESULTS: The adjusted proportion of children with inadequate intake of ≥ 3 micronutrients was 27·2 %, 13·5 % and 8·1 % in the categories of low, medium and high adherence to the MedDiet, respectively. After adjusting for all potential confounders, children who had a low adherence to the MedDiet showed a significant lower odds of inadequate intake of ≥ 3 micronutrients compared to those with a high adherence (OR 9·85; 95 % CI 3·33, 29·09). CONCLUSION: Lower adherence to the MedDiet is associated with higher odds of nutritional inadequacy.

Experience With Teduglutide in Pediatric Short Bowel Syndrome: First Real-life Data.

OBJECTIVES: The aim of the study was to describe the experience with teduglutide of several Spanish hospitals in pediatric patients with SBS (SBS). METHODS: Seventeen pediatric patients with intestinal failure associated with SBS were treated with teduglutide. Patients received 0.05 mg ·â€Škg ·â€Šday of subcutaneous teduglutide. Patients' demographics and changes in parenteral nutrition (PN) needs, fecal losses, and citrulline level initially and at 3, 6, and 12 months were collected, as well as any adverse events. RESULTS: Patients were receiving 55 ml ·â€Škg ·â€Šday and 33 kcal ·â€Škg ·â€Šday of parenteral supplementation on average at baseline (2 patients received only hydroelectrolytic solution). A total of 12/17 patients achieved parenteral independence: 3 patients after 3 months of treatment, 4 patients at 6 months, and 5 after 12 months. One patient discontinued treatment 1 year after the beginning as no changes in parenteral support or fecal losses were obtained. All others decreased their intravenous requirements by 50%. One patient suffered an episode of cholecystitis, and another one with a pre-existing cardiac disease, developed a cardiac decompensation. CONCLUSIONS: Teduglutide seems to be a safe and effective treatment in the pediatric SBS population with better results than in the pivotal study as well as in the adult population.

Ethical issues about the paradigm shift in the treatment of children with trisomy 18.

Until recently, trisomy 18 was considered a disease incompatible with life, with a high percentage of electively terminated pregnancies. The usual behavior was denial of treatment. But some medical interventions have changed the survival of children. A search for articles published in the PubMed database on the latest medical decisions in newborns with trisomy 18 was done. Two main subjects were examined: (1) the chances of survival and (2) the perception of quality of life. Trisomy 18 is no longer considered a disease incompatible with life, and the discussion has shifted towards the type of treatment that is appropriate to initiate at birth. There are two medical attitudes towards these children: either palliative care or life-prolonging interventions. With medical intervention, the survival is as high as 23% at 5 years of age. Regarding the quality of life, all decision-makers emphasize the possibility of taking the child home. The physicians' perception is more pessimistic than that of the parents. Only a few children benefit from medical interventions.Conclusion: There is a rethinking of treatment behavior in children with trisomy 18. The possible quality of life achieved should be further investigated. It seems inappropriate to simply dismiss medical interventions.What is Known• Until recently, trisomy 18 was considered a disease incompatible with life. The most common behavior was abortion and denial of treatment.What is New• It is no longer considered a lethal disease. The type of medical intervention that is appropriate to perform is now being discussed. Selected children benefit from an interventionist approach.

[The registers of pediatric patients with home artificial nutrition. The Spanish experience]. / Los registros de pacientes pediátricos con nutrición artificial en el domicilio. La experiencia española.

Introduction: Background: the number of infants and children who receive artificial nutrition at home has been steadily increasing over the last decades, as better outcomes for children with chronic conditions have been achieved. In order to evaluate the need of resources to implement the technique it is necessary to know how many patients benefit from home artificial nutrition. This information can be estimated from the register of patients, when available. Methods: in this paper the characteristics of all registers were reviewed, especially those devoted to pediatric patients. Results: only two pediatric registers are active in 2023: the Canadian register and the Spanish one. NADYA register from the Spanish Society for Clinical Nutrition and Metabolism (SENPE) and the recent REPAFI, form the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition. The most valuable register from the British Society, BANS, stopped providing information in 2018. Conclusion: despite the fact of acknowledging the importance of having gathered information on the prevalence and incidence of home artificial nutrition, to fit resources to necessities, the number of active registers is quite short.

Introducción: Introducción: el número de pacientes pediátricos que reciben nutrición artificial en el domicilio (NAD) ha crecido en los países occidentales en la medida que ha mejorado el pronóstico de algunas enfermedades graves potencialmente letales. Con el fin de poder estimar la cantidad de recursos necesarios para implementar esta técnica, es necesario conocer el volumen real de pacientes que precisan NAD. Una manera aproximada de conocer estas necesidades puede establecerse a partir de los datos de los registros nacionales de pacientes. Métodos: se revisan las características de los registros de pacientes pediátricos con NAD, tanto los activos como los que no han continuado en el tiempo, con especial atención a los registros españoles. Resultados: solo dos registros de pacientes permanecen activos en 2023, el registro canadiense y los registros españoles de la Sociedad Española de Nutrición Clínica y Metabolismo (SENPE), a través del registro NADYA y el de la Sociedad Española de Gastroenterología Hepatología y Nutrición Pediátrica, registro REPAFI. El registro más completo de la Sociedad Británica, BANS, dejó de publicar resultados en 2018. Conclusiones: a pesar de reconocer la importancia de presentar datos actualizados de prevalencia e incidencia del uso de la NAD, con el fin de adecuar los recursos a las necesidades, el número de registros activos de pacientes pediátricos es excepcional.

[Home parenteral nutrition in patients with malignant bowel obstruction. Ethical considerations]. / Nutrición parenteral domiciliaria en pacientes con obstrucción intestinal maligna. Consideraciones éticas.

Introduction: Background: patients with cancer are one of the main group of patients on home parenteral nutrition (HPN). Patients with malignant bowel obstruction (MBO) represent a challenging group when considering HPN. At the Ethics Working Group of SENPE ethical considerations on this subject were reviewed and a guidelines proposal was made. Methods: a literature search was done and a full set of questions arose: When, if ever, is HPN indicated for patients with MBO? How should the training program be? When withdrawal of HPN should be considered? Other questions should be also taken into consideration. May any Oncologist send home a patient with HPN? The educational program could be shortened? When considering to withdraw parenteral nutrition? Results: HPN in MBO has better outcomes when patients have a good functional status (Karnofsky ≥ 50 or ECOG ≤ 2), expected survival > 2-3 months, and low inflammatory markers. Very few data have been reported on quality of life, but HPN allows a valuable time at home albeit with a considerable burden for both patients and their families. Proposal: once a patient is considered for HPN, there is a need for a deep talk on the benefits, complications and risks. In this initial talk, when HNP should be stopped needs to be included. The palliative care team with the help of the nutrition support team should follow the patient, whose clinical status must be assessed regularly. HPN should be withdrawn when no additional benefits are achieved. Conclusion: HPN may be considered an option in patients with MBO when they have a fair or good functional status and a desire to spend their last days at home.

Introducción: Introducción: los pacientes con cáncer constituyen uno de los principales grupos de pacientes dentro de los programas de nutrición parenteral domiciliaria (NPD). Existe un grupo de pacientes con obstrucción intestinal maligna (OIM) en quienes el uso de la NPD es controvertido. Desde el Grupo de Ética de la SENPE se revisan las cuestiones éticas detrás de la decisión de iniciar la NPD en un paciente con OIM y se propone una propuesta de acción. Método: se procedió a hacer una revisión crítica de la literatura, tras la cual se diseñaron las preguntas que este documento pretendía responder: ¿Está indicado el uso de la NPD en pacientes con OIM? ¿En qué situaciones? Quedarían otros aspectos que también merecen una reflexión: ¿Cualquier oncólogo puede enviar a un paciente a su domicilio con NPD? ¿Debe ser el programa de formación de los cuidados en la NPD igual que el referente a los pacientes con fracaso intestinal de causa benigna? ¿Se debe suspender la NPD en algún momento? Resultados: la NPD en pacientes con OIM consigue mejores resultados en aquellos con una buena situación funcional (índice de Karnofsky ≥ 50 o ECOG ≤ 2), con un pronóstico vital superior a 2-3 meses e, idealmente, con niveles de marcadores inflamatorios bajos. En los escasos trabajos publicados en los que se valoran las ventajas sobre la calidad de vida, se concluye que la NPD permite a los pacientes disponer de un tiempo valioso en su domicilio pero a costa de una carga significativa para ellos mismos y sus familias. Propuesta de acción: una vez considerado como candidato a la NPD, se debe tener una conversación abierta con el paciente y sus familiares en la que se aborden los beneficios potenciales, las implicaciones prácticas y los riesgos. En esa conversación inicial debe también plantearse en qué momento considerar la retirada de la NPD. El responsable de la NPD es el equipo de soporte domiciliario en colaboración con el de nutrición clínica. La situación clínica debe evaluarse de forma periódica de manera que, cuando la NPD no proporcione ningún beneficio adicional, se plantee su retirada, manteniendo el resto de medidas de tratamiento sintomático paliativo. Conclusión: la NPD puede constituir una opción de tratamiento paliativo en pacientes con OIM con buena capacidad funcional y un deseo manifiesto de disponer de más tiempo en su domicilio en los últimos estadios de su enfermedad.

[Taurolidine lock in pediatric patients with intestinal failure. A practical guideline from the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition (SEGHNP)]. / Sellado con taurolidina en el fracaso intestinal pediátrico. Guía práctica de la Sociedad Española de Gastroenterología, Hepatología y Nutrición Pediátrica (SEGHNP).

Introduction: Objectives: the prevention of central line-associated bloodstream infections is a critical aspect of care for patients with intestinal failure who are treated with parenteral nutrition. The use of taurolidine in this context is becoming increasingly popular, however there is a lack of standardization in its pediatric application. The objective of this work is to develop a guide to support its prescription. Methodology: the guide is based on a review of the literature and expert opinions from the Intestinal Failure Group of the SEGHNP. It was developed through a survey distributed to all its members, addressing aspects of usual practice with this lock solution. Results: this manuscript presents general recommendations concerning taurolidine indications, commercial presentations, appropriate forms of administration, use in special situations, adverse reactions, and contraindications in the pediatric population Conclusions: taurolidine is emerging as the primary lock solution used to prevent central line-associated bloodstream infections, proving to be safe and effective. This guide aims to optimize and standardize its use in pediatrics.

Introducción: Objetivo: la prevención de las infecciones asociadas a catéter ocupa un papel fundamental en los cuidados del paciente en situación de fracaso intestinal en tratamiento con nutrición parenteral. El empleo del sellado del catéter con taurolidina con ese fin se ha generalizado sin que exista una estandarización sobre su uso en población pediátrica. El objetivo de este trabajo es elaborar una guía clínica que sirva de apoyo en su utilización. Métodos: la guía se basa en una revisión de la literatura y en la opinión de expertos del Grupo de Trabajo de Fracaso Intestinal de la SEGHNP recogida a través de una encuesta realizada a todos sus integrantes sobre aspectos de la práctica habitual con este sellado. Resultados: este manuscrito expone unas recomendaciones en cuanto a las indicaciones, presentaciones comerciales disponibles, forma adecuada de administración, uso en situaciones especiales, reacciones adversas y contraindicaciones de la taurolidina en población pediátrica. Conclusiones: el sellado con taurolidina para la prevención de la infección asociada a catéter venoso central se ha mostrado como un tratamiento eficaz y seguro. La presente guía pretender optimizar y homogeneizar su uso en pediatría.

Longer Breastfeeding Duration is Associated With Lower Consumption of Ultraprocessed Foods in a Sample of Spanish Preschoolers: The SENDO Project.

BACKGROUND: Breastfeeding has been linked to a higher consumption of fruit and vegetables at ages 4 to 5 years. More recently, it has been suggested that it may also be associated with lower ultraprocessed food (UPF) consumption in childhood. OBJECTIVE: The aim of this study was to assess whether breastfeeding duration was associated with consumption of UPF in a sample of Mediterranean preschoolers. DESIGN: This study involved a cross-sectional analysis of baseline information of children in the Child Follow-Up for Optimal Development cohort. Children were enrolled at ages 4 to 5 years and information was gathered through an online questionnaire completed by parents. Dietary information was collected with a previously validated semi-quantitative food frequency questionnaire and foods were classified based on the degree of processing according to the NOVA classification. PARTICIPANTS/SETTING: This study used baseline information for 806 participants enrolled in the Child Follow-Up for Optimal Development cohort between January 2015 and June 2021 in Spain. MAIN OUTCOMES MEASURES: Main study outcome measures were difference in grams per day and in the percentage of total energy intake from UPF consumption related to breastfeeding duration, and odds ratio that UPF represents a high percentage of total energy intake. STATISTICAL ANALYSES: Crude and multivariable adjusted estimates were calculated with generalized estimating equations to account for intracluster correlation between siblings. RESULTS: The prevalence of breastfeeding in the sample was 84%. After adjusting for potential confounders, children who were breastfed for some time reported significantly lower consumption of UPF than children who were not breastfed at all. The mean differences were -19.2 g (95% CI -44.2 to 10.8) for children who were breastfed for <6 months, -42.5 g (95% CI -77.2 to -7.80) for those who were breastfed for 6 to 12 months, and -43.6 g (95% CI -79.8 to -7.48) for those who were breastfed for 12 months or more (P value for trend = 0.01). After adjusting for potential confounders, compared with children who were not breastfed, those who were breastfed for ≥12 months had consistently lower odds of UPF representing more than 25%, 30%, 35%, and 40% of total energy intake. CONCLUSIONS: Breastfeeding is associated with lower consumption of UPF in Spanish preschoolers.

The Effects of COVID-19 Lockdown on the Sleep Quality of Children.

INTRODUCTION: The COVID-19 lockdown has caused important changes in children's routines, especially in terms of nutrition, physical activity, screen time, social activity, and school time. Regarding these changes, recent studies show that the COVID-19 lockdown is associated with higher levels of anxiety and depression in children. The objective of this study was to assess changes in sleep quality in Spanish children during the lockdown decreed by the Spanish government between March and June 2020. METHODOLOGY: We compared the BEAR (bedtime, excessive daytime sleepiness, awakening during the night, and regularity and duration of sleep) scores of 478 participants (median age = 7.5 years; 48% girls) in the SENDO project during the periods before, during, and after lockdown. The questionnaires were filled out by one of the parents. We used hierarchical models with two levels of clustering to account for the intra-cluster correlation between siblings. The interaction of time with a set of a priori selected variables was assessed by introducing the interaction term into the model and calculating the likelihood ratio test. RESULTS: The mean scores in the BEAR questionnaire referred to the periods before, during, and after lockdown were 0.52 (sd 1.25), 1.43 (sd 1.99), and 1.07 (sd 1.55), respectively. These findings indicate a deterioration in sleep quality during the period of confinement. Parental level of education was found to be an effect modifier (p for interaction = 0.004). Children whose parents had higher education (university graduates or higher) showed a smaller worsening than those without. CONCLUSION: Our study shows that the COVID-19 lockdown was associated with a significant worsening of sleep quality. Moreover, although the end of the lockdown brought about a slight improvement, mean scores on the BEAR scale remained significantly higher than before the lockdown, suggesting that the consequences for sleep quality could persist over time. This worsening was higher in children whose parents had lower educational degrees. Helping children maintain healthy sleeping habits despite the circumstances and providing early psychological support when needed is important to prevent negative psycho-physical symptoms due to lockdown that could persist over the years.

Breastfeeding Is Associated with Higher Adherence to the Mediterranean Diet in a Spanish Population of Preschoolers: The SENDO Project.

OBJECTIVE: To assess whether breastfeeding during the first months of life is associated with adherence to the Mediterranean dietary (MedDiet) pattern in preschool children. DESIGN: The Seguimiento del Niño para un Desarrollo Óptimo (SENDO) project is an ongoing pediatric cohort with open recruitment, started in 2015 in Spain. Participants, recruited when they are 4 to 5 years old at their primary local health center or school, are followed annually through online questionnaires. For this study, 941 SENDO participants with full data on study variables were included. Breastfeeding history was collected retrospectively at baseline. Adherence to the Mediterranean diet was assessed with the KIDMED index (range -3 to 12). RESULTS: After accounting for multiple sociodemographic and lifestyle confounders, including parental attitudes and knowledge about dietary recommendations for children, breastfeeding was independently associated with a higher adherence to the MedDiet. Compared with children who were never breastfed, children breastfed for ≥6 months had a one-point increase on their mean KIDMED score (Mean difference +0.93, 95%confidence interval [CI]. 0.52-1.34, p for trend <0.001). The odds ratio of high adherence to the MedDiet (KIDMED index ≥8) was 2.94 (95%CI 1.50-5.36) in children who were breastfed for at least 6 months, as compared to their peers who were never breastfeed. Children who were breastfed for less than 6 months exhibited intermediate levels of adherence (p for trend <0.01). CONCLUSION: Breastfeeding for 6 months or longer is associated with a higher adherence to the Mediterranean diet during the preschool years.

Which is the best route to achieve nutritional goals in pediatric ECMO patients?

OBJECTIVES: Estimating caloric intake and choosing route of administration are fundamental in the nutritional support of patients being supported by extracorporeal membrane oxygenation (ECMO). The aim of this study was to review the nutritional intervention carried out in a pediatric cohort in a third-level hospital. METHODS: This was a prospective descriptive study. Age, sex, underlying pathology, Pediatric Risk of Mortality score, ECMO indication, type of care, duration of ECMO support, and prognosis were collected. Type of nutritional support, route of administration, kcal/kg achieved, estimated energy requirements, and percentage of caloric objective (%CO) reached on days 3 and 5 after cannulation were recorded. RESULTS: Twenty-four venoarterial ECMO runs in 23 patients over a period of 2 y were recorded. Of the 23 patients, 15 were <1 y of age. The underlying pathology in 56.5% was cardiac disease. Three groups were identified: parenteral nutrition (group 0, n = 7), enteral nutrition (group 1, n = 8), and mixed nutrition (group 2, n = 7). The median of the %CO was 33.34 (0-84) on day 3 and 87.75% (78.4-100) on day 5 of ECMO, respectively for group 0; 75.5 (42.25-98.5) and 85% (24.4-107.7) in group 1 and 68.7 (44.4-82.2) and 91.2% (35.5-92) in group 2 (P > 0.05). Children <12 mo of age and cardiac patients represented 85.71% and 71.43% of total patients in group 0. Among the eight episodes of exclusive enteral nutrition, no complications were identified. CONCLUSION: Enteral nutrition appears to be safe in the setting of hemodynamic stability and absence of contraindications and is equivalent to other nutritional interventions in terms of compliance with estimated energy requirements.

[Nutrition in palliative care: guidelines from the Working Group on Bioethics, Spanish Society of Clinical Nutrition and Metabolism (SENPE)]. / Nutrición en cuidados paliativos: resumen de recomendaciones del Grupo de Trabajo de Ética de la SENPE.

Introduction: Palliative care provides a holistic approach and care for patients with a terminal illness and their families. In palliative care physical complaints as well as emotional, social and spiritual aspects are considered. Nutritional care should be also considered within palliative support. For those working in the nutritional support field, to withhold or withdraw nutritional support may be an ethical dilemma in this scenario. The controversy starts when considering nutrition and hydration as basic care or a treatment. The goals of nutrition support in palliative care patients differ from common ones, aiming to improve quality of life, survival or both. The decision should be based on a consideration of prognosis (length of survival), quality of life, and risks-benefits ratio. Regarding oral nutrition (with or without oral supplements) the idea prevails of "comfort feeding", based on providing oral feeding till discomfort or avoidance develop. There is no evidence on the benefit of specific nutrients, despite the fact that omega-3 FAs may have some positive effects in patients with cancer. Regarding nutritional support (enteral or parenteral), no scientific evidence is present, so the decision needs to be agreed according to the desires and beliefs of the patient and their family, and based on a consensus with the interdisciplinary team on the aims of this support.

Introducción: Los cuidados paliativos proporcionan una atención integral que tiene en cuenta los aspectos físicos, emocionales, sociales y espirituales del paciente con enfermedad terminal y su entorno familiar. El tratamiento nutricional debe formar parte activa de los equipos de cuidados paliativos. La necesidad de iniciar o no un tratamiento nutricional sigue siendo, desde hace décadas, uno de los principales problemas éticos a los que se enfrentan los profesionales dedicados a la nutrición clínica. El origen de tal controversia radica, fundamentalmente, en cómo se consideran la nutrición y la hidratación: cuidado/soporte o tratamiento médico. Los objetivos fundamentales del tratamiento nutricional en los pacientes en cuidados paliativos deben ser otros: la mejoría de la calidad de vida, de la supervivencia o de ambas. La decisión de indicar o no el tratamiento nutricional en cuidados paliativos debe tomarse tras considerar el pronóstico, la calidad de vida y la relación "riesgo/beneficio". En relación a la alimentación por vía oral (con o sin suplementos orales), prevalece la idea de la "alimentación de confort", que se basa en intentos de alimentación oral hasta que se produzcan la incomodidad y/o el rechazo del paciente. No existen evidencias que justifiquen el uso de nutrientes específicos, aunque desde hace años se señala la posibilidad de lograr beneficios cuando se utilizan ácidos grasos omega-3 en los pacientes con cáncer. En cuanto al tratamiento nutricional (enteral o parenteral), en ausencia de evidencia, las decisiones sobre si iniciar una nutrición artificial en un paciente paliativo deben tomarse teniendo en cuenta los deseos y creencias del paciente y sus familiares, y basarse en el consenso del equipo interdisciplinar sobre los objetivos que se persiguen al iniciarla.

Feeling of burden, psychological distress, and anxiety among primary caregivers of children with home enteral nutrition.

OBJECTIVE: To examine the relationship between several psychological factors and the feeling of burden experienced by caregivers of children with home enteral nutrition. METHODS: Fifty-six mothers of pediatric patients with chronic diseases requiring long-term home enteral nutrition were recruited. They were asked to respond to specific questionnaires about their anxiety symptoms (State-Trait Anxiety Inventory), psychological distress (SCL-90-R) and feeling of burden (Zarit-scale). RESULTS: Caregivers' feeling of burden was found to be statistically associated to psychological distress (r = .516, p < .001) and trait anxiety (r = .376, p = .005). No significant differences were found between the type of diagnosis and caregiver burden. Regression analysis indicated psychological distress has a partial mediational effect in the relationship between trait anxiety and caregivers' burden. CONCLUSIONS: Psychological distress and anxiety show a positive correlation with caregivers' feeling of burden, and may disrupt family well-being. Early identification of high-risk situations is essential in order to plan specific psychosocial aid efficiently.

An Ethical Pathway to Quality of Life in Critically Ill Newborns.

Advances in perinatology have permitted the survival of fragile neonates. Quality of life (QoL) has been considered a key element in medical decision-making. In this review we analyse the role of QoL regarding the decision of withholding or withdrawing of life-sustaining treatment (LST). The role of QoL is debated because of the conceptual difficulties it raises. The lack of consensus on its definition and the difficulties in measuring it objectively, mean that basing clinical decisions solely on QoL has some risks. To avoid a purely subjective assessment, the principle of totality, and the principle of therapeutic adequacy should be considered. In case of uncertain prognosis, some therapeutic persistence seems reasonable. If this does not benefit the clinical condition of the child, then it may be no longer appropriate to continue the LST in case of severe disabilities. QoL is essential in medical decision-making, but is insufficient as the only criterion.

School lunch menus in Spain. A review on recommendations and policy.

INTRODUCTION: An appropriate diet in childhood is essential for suitable growth and development, but it is also essential for preventing the development of non-communicable diseases in later stages. The School stage is fundamental. A significant proportion of students in Spain make use of the school lunch. We review the current situation in Spain, as well as public policy on school lunch and a nationwide review of specific legislation on each Autonomous Community. MATERIAL AND METHODS: National public policy and specific considerations in every Autonomous Community were reviewed. Only considerations on the composition of the school menu were considered. RESULTS: There are relatively recent state regulations but on school lunch menus also specific to each Autonomous Community. In general, and within a certain heterogeneity, they refer to the distribution of the diet and foods to be restricted. They usually provide guidelines, examples of daily menus, and graphic representations. Regarding school menus, there is a trend towards improvement in nutritional adequacy, but there is still room to improve. There are certain aspects related to the best solutions yet to be elucidated: management model, type of supervision, sustainability and local consumption, as well as school lunch schedules. CONCLUSIONS: The nutritional contributions made in the school canteens are qualitatively and quantitatively important. In addition, it must fulfill educational and social equity functions. Although these concerns address specific recommendation in every Autonomous Community, there is huge heterogeneity on practical implementations.

[Nutritional Study in Spanish Pediatric Population (EsNuPI)]. / Estudio Nutricional en Población Infantil de España (EsNuPI).

INTRODUCTION: Introduction: promoting healthy lifestyles already from the pediatric age for prevention of diseases at a short, mid and long-term is compulsory worldwide. Objectives: to know eating patterns and dietary habits, physical activity and sedentary behaviours in urban Spanish children aged one to nine years old, no vegan, by evaluating the differences between standard milk consumers (RS) and milk formula (AMS). Methods: prospective, observational, cross-sectional study with 1,514 children. A food frequency questionnaire, a physical activity and sedentary behaviour questionnaire, and two 24-hour dietary recalls (one face-to-face and one by phone) were used. Results: the daily energy intake was significantly higher in the RS group (1,503 Kcal vs 1,404 Kcal). The contribution of protein and fat to the total caloric value of the diet is high, being for the first one significantly higher in RS (16.5 % vs 15.6 %). However, for carbohydrate is low and significantly higher in AMS (46.7 % vs 45.5 %). The contribution of the food groups to the energy intake present significant differences between the groups. Conclusions: Spanish children between 1-9 years old have an adequate, but slightly elevated energy intake than the recommendations. There is a high contribution of protein and fat, and low of carbohydrate to the total caloric value. AMS children have a higher adherence to dietary guidelines and nutritional recommendations and, therefore, a suggested higher diet quality.

INTRODUCCIÓN: Introducción: es necesaria la promoción de estilos de vida saludables desde la edad pediátrica para la prevención de enfermedades a corto, medio y largo plazo. Objetivos: conocer los patrones de alimentación y hábitos dietéticos, actividad física e inactividad en niños de uno a nueve años españoles urbanos, no veganos, así como sus diferencias entre los consumidores de leche estándar (RS) y de fórmulas adaptadas, enriquecidas o suplementadas (AMS). Métodos: estudio prospectivo, observacional, transversal en 1.514 niños. Se analizan mediante cuestionario la frecuencia de consumo de alimentos, la actividad física, la inactividad y la ingesta dietética mediante dos registros de 24 horas, el primero presencial y el segundo telefónico. Resultados: entre los resultados ya obtenidos, la ingesta energética diaria fue significativamente superior en el grupo RS (1.503 Kcal vs. 1.404 Kcal). El aporte de proteínas y grasas en relación al valor calórico total de la dieta es elevado, siendo en el caso de las primeras significativamente mayor en RS (16,5 % vs. 15,6 %). Sin embargo, el de hidratos de carbono es bajo y significativamente mayor en AMS (46,7 % vs. 45,5 %). La contribución de los grupos de alimentos al aporte energético presenta diferencias significativas entre los grupos. Conclusiones: los niños españoles de uno a nueve años tienen una ingesta energética adecuada, aunque ligeramente superior a las recomendaciones. Hay una alta contribución de las proteínas y las grasas y una baja contribución de los hidratos de carbono al valor calórico total. Los niños AMS tienen una mayor adherencia a las guías alimentarias y recomendaciones nutricionales y, por tanto, potencialmente una mejor calidad de la dieta.

[Validation of the anthropometric data reported by parents of participants in the SENDO project]. / Validación de los datos antropométricos declarados por padres de participantes en el proyecto SENDO.

INTRODUCTION: Objective: to analyze the validity of self-reported somatometry data through a self-reported online questionnaire. Method: the SENDO project (Follow-up of Children for Optimal Development) is a prospective, dynamic pediatric cohort. Participants are recruited when they are between 4 and 6 years old, and followed annually through an online questionnaire. In a subsample of 82 participants, we compared the anthropometric information reported in the baseline questionnaire with the direct measurements collected by the investigating staff. To do this, we calculated the intraclass correlation index (ICC) and the Bland-Altman coefficient. Results: the ICC was 0.96 (95 % confidence interval [CI]: 0.94-0.98 for weight; 0.95 (95 % CI: 0.92-0.96) for height; 0.75 (95 % CI: 0.64-0.86) for waist circumference; and 0.84 (95 % CI: 0.76-0.89) for hip circumference. In relation to the indices calculated from these measurements, we found an ICC of 0.84 (95 % CI: 0.77-0.90) for body mass index; 0.46 (95 % CI: 0.27-0.62) for waist-hip ratio; and 0.59 (95 % CI: 0.43-0.72) for waist-height index. The Bland-Altman index ranged from 3.7 % for weight to 8.5 % for body mass index. Conclusions: we found a high correlation and concordance between the data collected in the physical exam and those reported by the parents. Our results indicate that the anthropometric measures provided by parents, especially those with which they are most familiar, are valid and can be used in epidemiological research.

INTRODUCCIÓN: Objetivo: analizar la validez de las medidas antropométricas declaradas por los padres de los participantes en el proyecto SENDO. Método: el proyecto SENDO (Seguimiento del Niño para un Desarrollo Óptimo) es una cohorte pediátrica abierta y prospectiva. Los participantes se reclutan cuando tienen entre 4 y 6 años, y se siguen anualmente mediante un cuestionario "online". En una submuestra de 82 participantes, se comparó la información antropométrica declarada en el cuestionario basal con las mediciones directas recogidas por el personal investigador. Para ello, se calcularon el índice de correlación intraclase (ICC) y el coeficiente de mala clasificación de Bland-Altman. Resultados: el ICC fue de 0,96 (intervalo de confianza [IC] del 95 %: 0,94-0,98) para el peso; de 0,95 (IC 95 %: 0,92-0,96) para la altura; de 0,75 (IC 95 %: 0,64-0,86) para el perímetro de la cintura, y de 0,84 (IC 95 %: 0,76-0,89) para el perímetro de la cadera. En relación a los índices calculados a partir de esas mediciones, se encontró un ICC de 0,84 (IC 95 %: 0,77-0,90) para el índice de masa corporal; de 0,46 (IC 95 %: 0,27-0,62) para el cociente cintura-cadera, y de 0,59 (IC 95 %: 0,43-0,72) para el índice cintura-altura. El índice de mala clasificación de Bland-Altman osciló entre el 3,7 % para el peso y el 8,5 % para el índice de masa corporal. Conclusiones: se encontró una muy elevada concordancia para la información antropométrica declarada por los padres y la medida de forma directa. Los resultados indican que las medidas antropométricas referidas por los padres, especialmente aquellas con los que están más familiarizados, son válidas y pueden utilizarse en la investigación epidemiológica.

[Role of breakfast and its quality in the health of children and adolescents in Spain]. / Papel del desayuno y su calidad en la salud de los niños y adolescentes en España.

INTRODUCTION: Eating breakfast is a healthy habit that should be encouraged since childhood. When it provides nutritional quality, it is an important daily meal. The consumption of dairy products, cereals, and fruits at breakfast is associated with healthier dietary patterns, with a beneficial impact on the overall quality of the diet. In Spain, as in many other countries, the proportion of children who eat breakfast daily is very high, decreasing somewhat in adolescence. However, the quality of breakfast leaves room for improvement, with a low proportion of children/adolescents with high nutritional quality breakfasts. Children/adolescents who eat breakfast regularly have a higher intake of various nutrients (especially vitamins and minerals) than those who do not eat breakfast. Although the evidence is not entirely conclusive, numerous studies have shown various benefits when comparing the population that eats breakfast regularly versus those who do not, such as cardiometabolic risk parameters (obesity, diabetes, blood pressure and lipid profile) and cognitive functions. Breakfast should be included in healthy eating plans, since it allows incorporating foods that are difficult to consume in other meals and may contribute to reducing the risk of developing cardiometabolic diseases. In order to promote the intake of a healthy breakfast, it is essential to act on the sociodemographic and cultural factors that influence compliance and quality, such as age, nutritional education (mainly parents and children/adolescents, but also other family members, school mates, friends...), carrying it out as a family, adapting it to the tastes of each population and balancing quality and costs.

INTRODUCCIÓN: Desayunar es un hábito saludable que debe fomentarse desde la infancia. Cuando aporta calidad nutricional, supone una comida diaria importante. El consumo de lácteos, cereales y frutas en el desayuno se asocia a patrones dietéticos más saludables, con un impacto beneficioso en la calidad global de la dieta. En España, como en muchos otros países, la proporción de niños que desayunan a diario es muy alta, descendiendo algo en la adolescencia. Sin embargo, la calidad del desayuno tiene margen de mejora, con una baja proporción de niños/adolescentes con desayunos de alta calidad nutricional. Los niños/adolescentes que desayunan habitualmente presentan una mayor ingesta de varios nutrientes (especialmente vitaminas y minerales) que los que no desayunan. Aunque las evidencias no son totalmente concluyentes, numerosos estudios han mostrado varios beneficios cuando se compara la población que desayuna habitualmente frente a la que no lo hace, tanto en los parámetros de riesgo cardiometabólico (obesidad, diabetes, tensión arterial y perfil lipídico) como en las funciones cognitivas. El desayuno debe incluirse en los planes de alimentación saludable pues permite incorporar alimentos que son difíciles de consumir en otras comidas y puede contribuir a reducir el riesgo de desarrollar enfermedades cardiometabólicas. Para promover la ingesta de desayunos saludables es imprescindible actuar sobre los factores sociodemográficos y culturales que influyen en su cumplimiento y en su calidad, como son la edad, la educación nutricional (principalmente padres y niños/adolescentes, pero también otros familiares, la escuela, las amistades...), realizarlo en familia, adaptarlo a los gustos de cada población y equilibrar calidad y costes.

[Controversy about the critical role of long-chain polyunsaturated fatty acids, arachidonic acid (ARA) and docosahexaenoic acid (DHA), during infancy]. / Controversia actual sobre el papel crítico de los ácidos grasos poliinsaturados de cadena larga, araquidónico (ARA) y docosahexaenoico (DHA), en el lactante.

INTRODUCTION: Long-chain polyunsaturated fatty acids (LC-PUFAs) are critical for infant growth and development, particularly arachidonic acid (ARA, C20:4n-6) and docosahexaenoic acid (DHA, C22:6n-3). ARA and DHA are components of cell membrane phospholipids and play an important role in cell division, differentiation, and signaling; and DHA is the n-3 fatty acid predominant in the developing brain and retina. During the third trimester of pregnancy, LC-PUFAs increase substantially in fetal circulation, and a "biomagnification" process in the fetal brain is observed. Moreover, LC-PUFAs are precursors of eicosanoids and metabolites, which modulate the intensity and duration of the immune response. LC-PUFA synthesis implies complex desaturation and elongation processes on their principal precursors, linoleic acid (LA) (18:3 n-6) (series n-6) and α-linolenic acid (LNA) (20:3 n-3) (series n-3), where fatty acid desaturases (FADS) and elongases (ELOVL) are competing. It is important to notice that during the first months of life, as a consequence of low enzymatic activity, LC-PUFA synthesis from LA and LNA is reduced, especially in those infants carrying variations in the FADS and ELOVL genes, which are involved in LC-PUFA synthesis, and so they are unable to supply their own DHA and ARA needs. Homozygote infants for FADS haplotype A (97 % of the Latinoamerican population) show low levels of ARA (only 43 %) and DHA (only 24 %) when compared to those carrying haplotype D (more prevalent in Europe, Africa and Asia). Human milk is the only source of LA, LNA, ARA, and DHA for the neonate and infant till complementary feeding (CF) is introduced. Infants fed with infant formulas must receive enough amounts of LA, LNA, ARA, and DHA to cover their nutritional requirements. The new guidelines by the European Food Safety Authority (EFSA) (2016) recommend that infant formulas and follow-on formulas must contain 20-50 mg of DHA/100 kcal (0.5-1 % of total fatty acids, which is higher than in human milk and the majority of infant formulas in the market), and it is not necessary to add ARA. This new regulation, which is already applicable since February 2020, has resulted in profound controversy because there is no scientific evidence about its appropriateness and safety for healthy children. Then, different international expert groups have revised the research already published about the effects of ARA and DHA addition to infant formulas, and discussed different emerging questions from this European directive. The expert group led from the University of Granada (Spain) recommends the addition of ARA in similar or higher concentrations than those of DHA, at least equal to those present in human milk (0.3 % of total fatty acids), although preferably 0.5 % and up to around 0.64 % of total fatty acids, since new studies confirm the optimal intake of ARA and DHA during the different developmental stages. This recommendation could be of particular importance for infants carrying the haplotype A of FADS.

INTRODUCCIÓN: Los ácidos grasos poliinsaturados de cadena larga (AGPI-CL) son críticos para el crecimiento y desarrollo infantil, en particular los ácidos araquidónico (ARA, C20:4n-6) y docosahexaenoico (DHA, C22:6n-3). El ARA y el DHA son componentes de los fosfolípidos de las membranas celulares y desempeñan importantes funciones en la división, diferenciación y señalización celular, siendo el DHA el ácido graso de la serie n-3 predominante en el cerebro y la retina en desarrollo. Durante el tercer trimestre de la gestación, los AGPI-CL aumentan de forma sustancial en la circulación fetal, observándose un proceso de "biomagnificación" en el cerebro fetal. Además, los AGPI-CL son precursores de los eicosanoides y metabolitos implicados en la modulación de la intensidad y duración de la respuesta inmunitaria. La síntesis de AGPI-CL implica un complejo proceso de desaturación y elongación desde los precursores principales, el ácido linoleico (18:3 n-6) (LA) (serie n-6) y el ácido α-linolénico (20:3 n-3) (LNA) (serie n-3), por los cuales compiten las enzimas desaturasas (FADS) y elongasas (ELOVL). Es importante indicar que en los primeros meses de vida, como consecuencia de la baja actividad enzimática, la síntesis de AGPI-CL a partir de LA y LNA es reducida, especialmente en los niños con variaciones en los genes que codifican las FADS y ELOVL involucradas en la síntesis de AGPI-CL y que, por tanto, son incapaces de cubrir por sí mismos sus necesidades de ARA y DHA. Los homocigotos para el haplotipo A de las FADS (97 % de la población latinoamericana) muestran niveles de ARA y DHA de tan solo un 43 % y un 24 %, respectivamente, inferiores a los de los individuos con haplotipo D (más frecuente en Europa, África y Asia). La leche humana constituye la única fuente de LA, LNA, ARA y DHA para el recién nacido y el lactante hasta la introducción de la alimentación complementaria (AC). Los niños alimentados con fórmulas infantiles deben recibir las cantidades de LA, LNA, ARA y DHA suficientes para cubrir los requerimientos nutricionales. La nueva normativa de la Autoridad Europea de Seguridad Alimentaria (EFSA) (2016) indica que las fórmulas infantiles de inicio y continuación deben contener entre 20 y 50 mg de DHA/100 kcal (0,5-1 % del total de ácidos grasos: más elevado que en la leche humana y en la mayoría de fórmulas infantiles comercializadas) sin la necesidad de incluir también ARA. Esta nueva regulación, que está vigente desde febrero de 2020, ha despertado una gran controversia, al no existir evidencia científica acerca de su pertinencia y seguridad para los niños sanos. Por ello, diferentes grupos de expertos internacionales han revisado la investigación publicada acerca del ARA y el DHA, y discutido diferentes cuestiones emergentes a partir de esta nueva directiva Europea. El grupo de expertos, liderado desde la Universidad de Granada (España), recomienda la adición de ARA en concentraciones iguales o mayores que las de DHA, alcanzando al menos el contenido presente en la leche humana (0,3 % del total de ácidos grasos), aunque preferiblemente un 0,5 % y hasta alrededor del 0,64 % del total de AG, hasta que nuevos estudios confirmen la ingesta óptima de ARA y DHA durante las distintas etapas del desarrollo. Esta recomendación podría ser de especial importancia para los niños portadores del haplotipo A de las FADS.

[Position paper on vegetarian diets in infants and children. Committee on Nutrition and Breastfeeding of the Spanish Paediatric Association]. / Recomendaciones del Comité de Nutrición y Lactancia Materna de la Asociación Española de Pediatría sobre las dietas vegetarianas.

In the last few years, there are an increased number of families following a vegetarian diet, including their children. In order to guarantee child heath, paediatricians need to know the characteristics of this diet and the main foods that are used. There are few data on the medium and long-term health outcomes when removing all animal foods from the child's diet, especially at younger ages. Nevertheless, new tools have recently become available to facilitate following a vegetarian diet and decreasing the risk of deficiencies. In this document, the group of foods commonly used in vegetarian diets are reviewed, as well as recommendations for each age group. It also mentions the need to use B12 supplements at all ages, as well as other nutrients (iodine, iron, vitaminD3, poly-unsaturated fatty acid n-3), when required. A vegetarian or a vegan diet, as in any other kind of diet, needs to be carefully designed. After reviewing current evidence, even though following a vegetarian diet at any age does not necessarily mean it is unsafe, it is advisable for infant and young children to follow an omnivorous diet or, at least, an ovo-lacto-vegetarian diet.