Development and validation of a specific questionnaire to assess health-related quality of life in patients with home enteral nutrition: NutriQoL® development

Introduction: Home enteral nutrition (HEN) is indicated in patients with a functional gastrointestinal tract but who are unable to meet their nutritional requirements with normally consumed foodstuffs. HEN allows patients to remain in their social and family environment, thus reducing complications and costs associated with hospital admission, while increasing health-related quality of life (HRQoL). HRQoL in patients with HEN is mainly evaluated by generic instruments, which are not sensitive enough to identify certain specific patient-related outcomes of HEN. Objective: To develop a specific instrument to measure HRQoL in patients receiving HEN whose results allow interpretation regardless of the underlying disease and nutritional support administration route: the NutriQoL (R) questionnaire. Materials and methods: The development of the NutriQoL entailed a literature review, focus groups with experts, semistructured interviews with patients, an assessment of face validity and feasibility, and Rasch analysis conducted on data from a sample of 141 patients and 24 caregivers. Results: Of the 52 items initially proposed on the basis of the literature review, expert focus group, and semi-structured interviews with patients and caregivers, 17 items were finally selected through the development process to make up the final version of the NutriQoL, as well as a visual analog scale for global HRQoL scoring. The selected items were evaluated as adequate for frequency, importance, and clarity. Furthermore, they have been shown to be independent of the underlying condition and HEN administration route. Conclusion: A new instrument for measuring the HRQoL of patients with HEN in Spain has been developed, whose results are independent of the underlying condition and administration route. The next step will be the validation of the questionnaire to ensure that the instrument is valid, reliable, and sensitive to health status changes in patients, to be used periodically in usual clinical practice

Nutrición parenteral domiciliaria en los pacientes oncológicos

Objective: to analyze the characteristics of oncology patients with home parenteral nutrition HPD collected from the NADYA registry.Method: cross-sectional study of the data collected from the NADYA’s group registry related to home and outpatient artificial nutrition. Patients with HPD and explicit oncological diagnosis were selected. Data were collected from January 1, 2010 to December 31, 2016.Results: Within the 7 years studied, 1463 patients were collected, of which 599 had a cancer diagnosis (40.94%) with an increase of 43% from the beginning. The mean age was 57 years IIQ [46-64], registering 5 children. The majority of the patients were oncologic palliative (51.3%). There were 3.18 septic catheter-related complications per 1000 days of nutrition, most frequently in the radiation enteritis group (ANOVA p <0.001). The main cause of end of treatment was death 61%, palliative patients in higher proportion than the other diagnoses (x2 = 53,819, p <0.001).Conclusions: palliative represent the majority of cancer patients with HPD. Intestinal obstruction and short bowel syndrome was the main reason for indicating it, almost 80% of cases. Patients with radiation enteritis were the ones with the least metabolic and septic complications not related to the catheter, being the ones with the most septic complications related to the catheter. Quality of life is a parameter that would provide a very valuable information of these patients. It is a limitation of this study not to have data based on this parameter.Objetivo: analizar las características de los pacientes oncológicos con nutrición parenteral domiciliaria (NPD) recogidos en el registro NADYA.Método: estudio transversal de los datos recogidos en el registro del grupo de nutrición artificial domiciliaria y ambulatoria NADYA de pacientes con NPD y diagnóstico oncológico explicito, desde el 1 de enero de 2010 al 31 de diciembre de 2016.Resultados: en los 7 años estudiados se han recogido 1463 pacientes, de los que 599 han tenido un diagnóstico de cáncer (40,94%) con un incremento del 43% desde el inicio. La edad media fue de 57 años IIQ [46 – 64] registrándose 5 niños. La mayoría de los pacientes eran oncológicos paliativos (51,3%). Se registraron 3,18 complicaciones sépticas relacionadas con el catéter por cada 1000 días de nutrición, con mayor frecuencia en el grupo de enteritis rádica (ANOVA p<0,001). La principal causa de finalización fue el fallecimiento 61%, los pacientes paliativos en mayor proporción que los demás diagnósticos (x2 = 53.819; p<0,001).Conclusiones: los paliativos representan la mayoría de los pacientes oncológicos con NPD, siendo la obstrucción intestinal y el síndrome de intestino corto los motivos de indicación de casi el 80% de los casos. Los pacientes con enteritis rádica han sido los que menos complicaciones metabólicas y sépticas no relacionadas con el catéter presentaron, siendo los que más complicaciones sépticas relacionadas con el catéter. La calidad de vida sería un parámetro que proporcionaría una información muy valiosa en estos pacientes, siendo una limitación de este estudio no disponer de datos al respecto

The NADYA-SENPE Home Enteral Nutrition registry in Spain: years 2018 and 2019

Objetivo: exponer los resultados del registro de nutrición enteral domiciliaria (NED) de los años 2018 y 2019 del Grupo NADYA-SENPE. Material y métodos: se recopilaron los pacientes introducidos en el registro desde el 1 de enero al 31 de diciembre de 2018 y en las mismas fechas para 2019, procediendo al análisis descriptivo y analítico de los datos. Resultados: en el año 2018 se registraron 4756 pacientes activos con una tasa de prevalencia de 101,79 pacientes/millón de habitantes; en 2019 fueron 4633 con una tasa de prevalencia de 98,51 pacientes/millón de habitantes. Procedían de 46 hospitales. Fueron el 51,3 % los varones registrados y la edad mediana fue de 71,0 años en ambos periodos. El diagnóstico más frecuente fue el de enfermedad neurológica que cursa con afagia o disfagia severa (58,7 % y 58,2 %), respectivamente. La causa principal de finalización de los episodios fue el fallecimiento. Los pacientes pediátricos registrados fueron 116 en 2018 y 115 en 2019. Las niñas representaron el 57,8 % y 59,1 %, respectivamente, en cada uno de los periodos. La edad mediana de inicio de la NED fue de 5 y 7 meses. El grupo diagnóstico más registrado (42,2 % y 42,6 %) se englobó dentro del grupo de otras patologías, seguido de la enfermedad neurológica que cursa con afagia o disfagia severa de los niños (41,4 % y 41,7 %). Se alimentaban a través de gastrostomía el 46,6 % y 46,1 %, respectivamente, en cada uno de los periodos. Conclusiones: el registro de NED del grupo NADYA-SENPE sigue operativo de forma ininterrumpida desde sus inicios. El número de pacientes registrados y el de hospitales participantes permanece estable en el último bienio analizado.Aim: to present the results of the Spanish home enteral nutrition (HEN) registry of the NADYA-SENPE group for the years 2018 and 2019. Material and methods: from January 1, 2018 to December 31, 2019 the home enteral nutrition registry was recorded, and afterwards a further descriptive and analytical analysis was done. Results: in 2018, 4756 active patients were registered and the prevalence was 101.79 patients per one million inhabitants; in 2019 there were 4633 patients with a prevalence of 98.51 patients per one million inhabitants. They originated in 46 hospitals: 51.3 % were male, and median age was 71.0 years in both periods. The most frequent diagnosis was a neurological disorder that presents with aphagia or severe dysphagia — 58.7 % and 58.2 %, respectively. The main cause of episode termination was death. A total of 116 pediatric patients were registered in 2018 and 115 in 2019. Females represented 57.8 % and 59.1 %, respectively, in each of the periods. Median age at the beginning of HEN was 5 and 7 months. The most commonly recordered diagnostic group (42.2 % and 42.6 %) was included within the other pathologies group, followed by neurological disorders that present with aphagia or severe dysphagia in 41.4 % and 41.7 % of children. The route of administration was gastrostomy in 46.6 % and 46.1 %, respectively, in each of the periods. Conclusions: the NED registry of the NADYA-SENPE group continues to operate uninterruptedly since its inception. The number of registered patients and the number of participating hospitals remained stable in the last biennium analyzed

A home and ambulatory artificial nutrition (NADYA) group report, home parenteral nutrition in Spain, 2013

Aim: to communicate the results of the Spanish Home Parenteral Nutrition (HPN) registry of the NADYA-SENPE group for the year 2013. Material and methods: data was recorded online by NADYA group collaborators that were responsible of the HPN follow-up from 1st January to 31st December 2013. Results: a total of 197 patients and 202 episodes of HPN were registered from 35 hospitals that represents a rate of 4,22 patients/million habitants/year 2013. The median age was 53 years (IQR 40 – 64) for 189 adult patients and 7 months (IQR 6 – 35,5) for children. The most frequent disease in adults was neoplasm (30,7%) followed by other diseases (20,1%) and mesenteric ischemia (12,7%). Short bowel syndrome and intestinal obstruction (25,9%) were in 35.7% cases the indications for HPN

Nutrición parenteral domiciliaria en España 2018. Informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

Aim: to communicate home parenteral nutrition (HPN) data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe. com) for the year 2018. Material and methods: descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2018 to December 31st, 2018. Results: there were 278 patients from 45 Spanish hospitals (54.7 % women), 23 children and 255 adults, which represent a prevalence rate of 5.95 patients/million inhabitants/year 2018. The most frequent diagnosis in adults was " palliative cancer" (22.0 %), followed by "others". In children it was Hirschsprung's disease together with necrotizing enterocolitis, with four cases (17.4 %). The first indication was short bowel syndrome in both children (60.9 %) and adults (35.7 %). The most frequently used type of catheter was tunneled in both children (81.0 %) and adults (41.1 %). Ending 75 episodes, the most frequent cause was death (52.0 %) and change to oral feeding (33.3 %). Conclusions: the number of centers and collaborating professionals in the registry of patients receiving HPN remains stable, as well as the main indications and reasons for termination of HPN

Nutrición parenteral domiciliaria en España 2018. Informe del Grupo de Nutrición Artificial Domiciliaria y Ambulatoria NADYA

Aim: To communicate home parenteral nutrition (HPN) data obtained from the HPN registry of the NADYA-SENPE group (www.nadya-senpe.  com) for the year 2018. Material and methods: Descriptive analysis of the data collected from adult and pediatric patients with HPN in the NADYA-SENPE group registry from January 1st, 2018 to December 31st, 2018.  Results: There were 278 patients from 45 Spanish hospitals (54.7% women), 23 children and 255 adults, which represent a prevalence rate of 5.95 patients/million inhabitants/year 2018. The most frequent diagnosis in adults was “palliative cancer” (22.0%), followed by “others”. In children it was Hirschsprung’s disease together with necrotizing enterocolitis, with four cases (17.4%). The first indication was short bowel syndrome in both children (60.9%) and adults (35.7%). The most frequently used type of catheter was tunneled in both children (81.0%) and adults (41.1%). Ending 75 episodes, the most frequent cause was death (52.0%) and change to oral feeding (33.3%). Conclusions: The number of centers and collaborating professionals in the registry of patients receiving HPN remains stable, as well as the main indications and reasons for termination of HPN.Objetivo: comunicar los datos de nutrición parenteral domiciliaria (NPD) obtenidos del registro del grupo NADYA-SENPE (www.nadyasenpe. com) del año 2018. Material y métodos: análisis descriptivo de los datos recogidos de pacientes adultos y pediátricos con NPD en el registro NADYA-SENPE del 1 de enero al 31 de diciembre de 2018. Resultados: se registraron 278 pacientes (54,7% mujeres), 23 niños y 255 adultos, procedentes de 45 hospitales españoles, lo que representa una tasa de prevalencia de 5,95 pacientes/millón de habitantes/año 2018. El diagnóstico más frecuente en adultos fue “oncológico paliativo” (22,0%), seguido de “otros”. En niños fue la enfermedad de Hirschsprung junto con la enterocolitis necrotizante, con cuatro casos (17,4%). El primer motivo de indicación fue síndrome de intestino corto tanto en niños (60,9%) como en adultos (35,7%). El tipo de catéter más utilizado fue el tunelizado tanto en niños (81,0%) como en adultos (41,1%). Finalizaron 75 episodios, la causa más frecuente fue el fallecimiento (52,0%) y el paso a vía oral (33,3%). Conclusiones: el número de centros y profesionales colaboradores en el registro de pacientes que reciben NPD se mantiene estable, así como las principales indicaciones y los motivos de finalización de la NPD

European guideline on obesity care in patients with gastrointestinal and liver diseases – Joint ESPEN/UEG guideline

La European Society of Clinical Nutrition and Metabolism (ESPEN) es una importante sociedad científica global, con 70 Sociedades Científicas nacionales federadas, de todos los continentes. Sus Guías de Práctica Clínica son una referencia a nivel mundial para la atención de los pacientes. Formar parte del equipo que elabora las Guías es un reconocimiento como experto. Los autores se repartieron las preguntas PICO para la localización y revisión de la evidencia publicada, elaborar el texto y definir las recomendaciones relacionadas con estas preguntas PICO. Hubo dos reuniones plenarias en las que se revisaban todas las recomendaciones y textos acompañantes, y se votaban. Finalmente, se escribía la versión final. Desde la publicación de esta Guía ha recibido 26 citaciones.Background: Patients with chronic gastrointestinal (GI) disease such as inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), celiac disease, gastroesophageal reflux disease (GERD), pancreatitis, and chronic liver disease (CLD) often suffer from obesity because of coincidence (IBD, IBS, celiac disease) or related pathophysiology (GERD, pancreatitis and CLD). It is unclear if such patients need a particular diagnostic and treatment that differs from the needs of lean GI patients. The present guideline addresses this question according to current knowledge and evidence. Objective: The objective of the guideline is to give advice to all professionals working in the field of gastroenterology care including physicians, surgeons, dietitians and others how to handle patients with GI disease and obesity. Methods: The present guideline was developed according to the standard operating procedure for ESPEN guidelines, following the Scottish Intercollegiate Guidelines Network (SIGN) grading system (A, B, 0, and good practice point (GPP)). The procedure included an online voting (Delphi) and a final consensus conference. Results: In 100 recommendations (3x A, 33x B, 24x 0, 40x GPP, all with a consensus grade of 90% or more) care of GI patients with obesity - including sarcopenic obesity - is addressed in a multidisciplinary way. A particular emphasis is on CLD, especially fatty liver disease, since such diseases are closely related to obesity, whereas liver cirrhosis is rather associated with sarcopenic obesity. A special chapter is dedicated to obesity care in patients undergoing bariatric surgery. The guideline focuses on adults, not on children, for whom data are scarce. Whether some of the recommendations apply to children must be left to the judgment of the experienced pediatrician. Conclusion: The present guideline offers for the first time evidence-based advice how to care for patients with chronic GI diseases and concomitant obesity, an increasingly frequent constellation in clinical practice.European Society for Clinical NutritionMetabolismUnited European GastroenterologyDepto. de MedicinaFac. de MedicinaTRUEpu

ESPEN guideline on clinical nutrition in hospitalized patients with acute or chronic kidney disease

Depto. de MedicinaFac. de MedicinaTRUEpu

Long-term prevalence of oropharyngeal dysphagia in head and neck cancer patients: Impact on quality of life

Background & aims: To determine the prevalence of dysphagia in head and neck cancer patients treated with surgery and radiotherapy or chemoradiotherapy. To study the impact of dysphagia on food habits, nutritional status, and quality of life. Methods: Retrospective cross-sectional study of 87 head and neck cancer patients treated with surgery and radiotherapy or chemoradiotherapy from January 2000 through May 2005. Time since surgery was 28.5+/-17.8 months. A clinical test was used to detect dysphagia. A nutritional assessment was performed in all patients. A questionnaire was used to evaluate quality of life. Results: Oropharyngeal dysphagia was present in 50.6% of patients, mostly to solid foods (72.4%). Patients with total glossectomy and chemoradiotherapy had the highest rate of dysphagia. Nutritional support was necessary in 57.1% of patients. Malnutrition was present in 20.3% of patients, mainly marasmus (81%). Fifty-one percent of patients reported a decrease in their quality of life due to dysphagia. Conclusions: We found a high prevalence of dysphagia in head and neck cancer patients treated with surgery and coadjuvant treatment. This problem negatively affects their quality of life. It is important that nutritional surveillance be provided to detect it and to prevent malnutrition.Novartis Medical NutritionDepto. de CirugíaFac. de MedicinaTRUEpu

Teduglutide: a review of its use in short bowel syndrome

Introduction: Long-term Parenteral Support (PS) can be associated with serious complications, with a significant deterioration in the quality of life of patients with short bowel syndrome (SBS). Teduglutide is a recombinant analogue of glucagon-like peptide-2; it belongs to a novel therapeutic family and represents the first non-symptomatic approach against SBS.Objectives: To review the non-clinical and clinical data on efficacy and safety of teduglutide.Results: Teduglutide approval was based on results from a pivotal Phase III, 24-week, double-blind, placebo-controlled study (STEPS). SBS patients dependent on PS >= 3 times/week for >= 12 months received 0.05 mg/kg teduglutide (n = 43) or placebo (n = 43) 1 time/day. At week 24 there were significantly more responders in the teduglutide group vs. placebo (63 vs. 30%; p = 0.002). The overall mean reduction vs. PS baseline volume at week 24 was significantly higher with teduglutide vs. placebo (4.4 vs. 2.3 l/ week, p = 3 times/week for >= 12 months received 0.05 mg/kg teduglutide (n = 43) or placebo (n = 43) 1 time/day. At week 24 there were significantly more responders in the teduglutide group vs. placebo (63 vs. 30%; p = 0.002). The overall mean reduction vs. PS baseline volume at week 24 was significantly higher with teduglutide vs. placebo (4.4 vs. 2.3 l/ week, p = 12 months received 0.05 mg/kg teduglutide (n = 43) or placebo (n = 43) 1 time/day. At week 24 there were significantly more responders in the teduglutide group vs. placebo (63 vs. 30%; p = 0.002). The overall mean reduction vs. PS baseline volume at week 24 was significantly higher with teduglutide vs. placebo (4.4 vs. 2.3 l/ week,