[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.

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.

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

Introducción: los pacientes con cáncer constituyen uno de los principales grupos de pacientes dentro de los programas de nutrición parenteraldomiciliaria (NPD). Existe un grupo de pacientes con obstrucción intestinal maligna (OIM) en quienes el uso de la NPD es controvertido. Desdeel 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 unapropuesta 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 igualque 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 escasostrabajos publicados en los que se valoran las ventajas sobre la calidad de vida, se concluye que la NPD permite a los pacientes disponer de untiempo 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 familiaresen la que se aborden los beneficios potenciales, las implicaciones prácticas y los riesgos. En esa conversación inicial debe también plantearse enqué momento considerar la retirada de la NPD. El responsable de la NPD es el equipo de soporte domiciliario en colaboración con el de nutriciónclínica.(AU)

Background: patients with cancer are one of the main group of patients on home parenteral nutrition (HPN). Patients with malignant bowelobstruction (MBO) represent a challenging group when considering HPN. At the Ethics Working Group of SENPE ethical considerations on thissubject 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 shouldthe training program be? When withdrawal of HPN should be considered? Other questions should be also taken into consideration. May anyOncologist 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 > 2-3months, and low inflammatory markers. Very few data have been reported on quality of life, but HPN allows a valuable time at home albeit witha 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, whenHNP should be stopped needs to be included. The palliative care team with the help of the nutrition support team should follow the patient, whoseclinical 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 spendtheir last days at home.(AU)

[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.

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.

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.

[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.

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

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 (AU)

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 (AU)