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Home parenteral nutrition (HPN) is a complex therapy, which requires dedicated facilities and expertise. However, the management and provision of HPN differs significantly between countries and between HPN centers within countries. These differences lead to heterogeneity in the quality of care received by patients, with variable impact on the appropriateness, safety, and effectiveness of HPN, and resultant variability in the quality of life that a patient may expect. The European Society for Clinical Nutrition and Metabolism (ESPEN) have published guidelines on the appropriate and safe provision of HPN, with an associated practical version describing a short and precise way to implement the guidelines' recommendations in clinical practice. This educational paper suggests means of implementation of evidence supported HPN guidelines, using "operational recommendations" applitngto healthcare professionals, administrators and stakeholders, with the ultimate aim of enhancing equity of patient access to an appropriate and safe HPN program of care., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Rationale: To investigate the association between malnutrition and patient outcome following hospitalisation for Corona Virus Disease 2019 (COVID-19)., Methods: In April 2020, 268 adult patients (235 included in the follow-up) hospitalised for COVID-19 infection were evaluated for malnutrition risk and diagnosis using modified Nutritional Risk Screening 2002 and modified Global Leadership Initiative on Malnutrition criteria (GLIM), respectively. An 18-month follow-up was carried out to assess the incidence and the associated risk factors for death and re-hospitalization., Results: The outcome was unknown for 33 patients. Death occurred in 39% of the 235 patients included in the follow-up. The risk of death was independently associated with malnutrition risk or diagnosis of malnutrition, whereas the male sex showed a protective association. The Kaplan-Meier survival curves showed that patients with diagnosis of malnutrition had lower survival rate. The re-hospitalization rate was 31% and was negatively associated with BMI≥25, and positively associated with length of hospitalisation for COVID-19 and with cancer comorbidity., Conclusions: In hospitalized patients for SARS-CoV-2 disease, both malnutrition risk (p = 0.050) and diagnosis of malnutrition (p = 0.047 with modified GLIM and C-reactive protein >0.5 mg/dL; p = 0.024 with modified GLIM and C-reactive protein >5 mg/dL) were predictive risk factors for mortality, whereas male sex was associated with lower risk of death. Overweight at time of hospitalization and the length of hospitalisation were respectively protective and risk factor for re-hospitalization after discharge., Competing Interests: Declaration of competing interest LP: Participation on Data Safety Monitoring Board and Advisory Board for Takeda; consulting fees for Takeda, Northsea Therapeutics, NAPO Therapeutics, Lionhealth, Nestlè; honoraria for lectures for Baxter. FR, LB, GA, MGA, CB, BB, LL, LL, LM, AN, FP, CR, FS, MS, ASS: none., (Copyright © 2024 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved.)

Background: Given the growing use of home enteral nutrition (HEN), assessing the experience of consumers and caregivers is crucial to understanding the real-world subjective and objective challenges of administering HEN., Methods: After obtaining institutional review board approval, a survey was distributed to HEN consumers and caregivers between January 16, 2020, and July 16, 2021. Data collected included information regarding demographics, primary diagnosis, tube and connectors, HEN regimen, and overall HEN experience., Results: A total of 884 individuals responded to the survey: 673 (76.1%) responses by caregivers and 211 (23.9%) responses by patients. The study cohort included 566 (64%) children and 318 (36%) adults. The leading primary diagnosis of participants was developmental delay and motility disorder for children and adults, respectively. Low-profile gastric tubes were the most used (75.7% of children and 30.3% of adults). Notably, legacy connectors were utilized for more patients (46.7% children, 52.6% adults) compared to ISO-80369-3 connectors (38.9% children, 29.7% adults). HEN complications were prevalent, including enteral tube site infections and other tube-related complications, including clogging and kinking., Conclusion: This real-world data reveals that HEN complications remain prevalent. Additionally, despite introducing ISO-80369-3 connectors many years ago, most patients continue to use legacy tubes with a significant lack of knowledge about ISO-80369-3 connectors. The survey results guide HEN providers to focus on several areas to reduce complications., Competing Interests: Conflicts of interest Authors declare no relevant conflict of interest., (Copyright © 2024 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved.)

Background and Aims: Catheter-related bloodstream infection (CRBSI) is the most common complication of home parenteral nutrition (HPN) in patients with chronic intestinal failure (CIF). The aim of this study was to assess the broad range of practices of international multi-disciplinary teams involved in the care of this complication occurring in CIF patients., Design: An online questionnaire was designed and distributed to members of the European Society for Clinical Nutrition and Metabolism (ESPEN) and distributed to colleagues involved in managing patients with CIF., Results: A total of 47 responses were included from centers across 21 countries. The centers had been delivering HPN for a median 21 years (IQR 11-35) and were actively following a median 58 patients (27-120) per center for benign CIF in 80% of cases (67-95). Tunneled catheters were the most common type of central venous catheters (CVC), representing 70% (47-86) of all CVC in use. For the management of CRBSI, written procedures were provided in 87% of centers. First measures included simultaneous central and peripheral blood cultures (90%), stopping HPN infusion (74%), and administrating an antibiotic lock and systemic antibiotics (44%). Immediate removal of the CVC was more likely in case of fungal infection (78%), Staphylococcus aureus (53%), or in case of PICC catheter (52%) (all p < 0.01). After the first CRBSI, 80% of centers used preventive CVC locks (taurolidine in 84% of cases, p < 0.001). We observed a large heterogeneity in practices regarding preparation, duration, reaspiration, and volume of CVC locks, and monitoring of CRBSI (timing of blood cultures, radiological work-up)., Conclusion: In this international survey of HPN expert centers, we observed a significant consensus regarding the initial management of CRBSI and the use of secondary preventive CVC locks, while areas of variation exist. Management of CRBSI may be improved with clearer recommendations based on the micro-organism and the type of CVC, including PICC lines which are increasingly used yet insufficiently studied in HPN patients., Competing Interests: Conflicts of interest KS declares honoraria from BBraun, Fresenius Kabi, and being member of the board of the Polish Society of Enteral, Parenteral Nutrition and Metabolism. All other authors declare no conflict of interest., (Copyright © 2023. Published by Elsevier Ltd.)

Background and Aim: Chronic intestinal failure (IF) is a rare but life-altering condition, care delivery of which is complex. The ATLAS Programme was initiated in 2016 to increase disease awareness and address inconsistencies in delivery of care across Europe. We describe the results of a non-interventional study that aimed to explore how adult patients with chronic IF are managed across Europe., Materials and Methods: This mixed-methods, non-interventional, cross-sectional study comprised a desk-based landscape assessment (Phase 1), qualitative interviews (Phase 2), and an online quantitative survey (Phase 3) completed by healthcare professionals (HCPs) involved in the management of adult patients with chronic IF during the period November 2020 to January 2021. Data were collected from 12 European countries. Survey data were anonymised and pooled for analysis at European and country level. Responses were summarised as frequencies, ranks and percentage., Results: The quantitative survey was carried out on 119 HCPs across an estimated 58 centres. Gastroenterology was the most frequent specialty of respondents (45%). Three-quarters of HCPs (N = 119) reported that their department/unit had a multidisciplinary team for the management of patients with chronic IF. HCPs reported improving quality of life (QoL) to be the most important goal of treatment (39%), followed by reducing mortality (25%), intestinal rehabilitation (20%) and reducing morbidity (9%). Similarly, 63% of HCPs responded that improved QoL was the most important treatment goal from the perspective of their patients. Overall, 87% of HCPs reported that patients with chronic IF routinely receive home parenteral nutrition (HPN) in their country, which was more common in Western versus Eastern Europe. Meeting treatment goals (53%) and achieving better levels of support with HPN (44%) were reported as the main challenges faced by HCPs in the management of patients with chronic IF. A general lack of disease awareness of chronic IF among HCPs (46%), and insufficient accredited patient referral centres (41%) were considered the most important areas for improvement., Conclusions: HCPs specialising in treating chronic IF considered that improvement in QoL is needed for their patients. They reported a low level of awareness of chronic IF among non-specialist HCPs., Competing Interests: Declaration of Competing Interest PG was an employee of Takeda at the time of the study, with share and stock options in Takeda. SL has received consulting fees from NorthSea Therapeutics, Takeda and VectivBio; payment or honoraria for lectures, presentations, speakers' bureaus, manuscript writing or educational events from Baxter, Fresenius Kabi and Takeda; has participated in data safety monitoring boards or advisory boards for Takeda and VectivBio. PBJ has received honoraria for speaking events and has participated in data safety monitoring boards or advisory boards for Takeda. LP has received consulting fees from Baxter, NorthSea Therapeutics and Takeda. ER declares no competing interest. SS has been awarded institutional grants from B. Braun, Nestlé Health Science, Takeda, VectivBio and Zealand; received consulting fees from Axium MTech, Nestlé Health Science, Nutrisens, Takeda and VectivBio; received payment for honoraria for lectures, presentations, speakers' bureaus, manuscript writing or educational events from Axium MTech, Biocodex, Cardinal Health, Fresenius Kabi, Grand Fontaine, Homeperf, Merck, Nestlé Health Science, Nutricia, Takeda and Theradial; has received support for attending meetings/travel from Danone and Takeda, as well as participating in data safety monitoring boards or advisory boards for Baxter and Takeda., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background & Aims: Home parenteral nutrition (HPN) is the primary treatment for chronic intestinal failure (CIF) due to non-malignant disease and is increasingly used in patients with a diagnosis of cancer. This project engaged with patients, family members and healthcare professionals to ascertain what questions they want researched., Methods: This study followed the five-stage process of the James Lind Alliance that involved (1) setting up a steering group, (2) carrying out an initial survey to gather participants' questions, (3) data processing, (4) an interim priority setting survey and (5) final priority setting workshop. Surveys were translated and back translated into Italian, Danish and French., Results: The project was delivered by an international steering committee with representation from Denmark, Italy, the United Kingdom and United States consisting of three patients, six healthcare professionals and facilitated by University researchers. For the first survey, 633 questions were submitted by 292 respondents from 12 countries. There were 79 questions removed as out of scope or already in the published literature. Responses were collated into two interim surveys of 41 questions for benign CIF and 13 questions for HPN and cancer. In the second survey, 216 respondents prioritised their top ten questions. The ordering from the cancer and HPN survey was taken as definitive; top priorities were quality of life, survival, when to commence HPN, using HPN with anti-cancer treatments, access barriers, measuring benefit and ethical implications. For CIF with benign disease, 18 questions were discussed in two workshops attended by 13 patients and 7 healthcare professionals. The questions were ranked using a modified nominal group technique; the top research priorities were prevention and treatment of liver disease, improving central infusion lines, oral absorption, avoiding long-term negative consequences, vascular access, side effects, line infections, decreasing stoma output, quality of life and sleep., Conclusions: Priorities identified will assist researchers to focus on research questions important to patients, family members and healthcare professionals., Competing Interests: Declaration of competing interest AMS, SB, DJ, CF, LW and SL report an investigator initiated grant from Takeda into their departments during the conduct of the study. JM reports a Health Education England (HEE)/National Institute for Health Research (NIHR) ICA Predoctoral Clinical Academic Fellowship and a Royal Marsden Partners Research Fellowship. Unrelated to this study: SL reports grants into his department from Takeda and Baxter and consulting fees from Takeda, Baxter, Zealand, and VectivBio, LP reports consulting fees from Takeda, Baxter and Northsea Therapeutics, CW reports consulting fees from VectioBio, payments for presentations from Fresenius Kabi and Inspiration Healthcare and conference registration fees from Fresenius Kabi, payment for being on a clinical governance board from B Braun, and BJ reports an honoraria for speaking from Snow Companies., (Copyright © 2022 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Background and Aims: The case-mix of patients with intestinal failure due to short bowel syndrome (SBS-IF) can differ among centres and may also be affected by the timeframe of data collection. Therefore, the ESPEN international multicenter cross-sectional survey was analyzed to compare the characteristics of SBS-IF cohorts collected within the same timeframe in different countries., Methods: The study included 1880 adult SBS-IF patients collected in 2015 by 65 centres from 22 countries. The demographic, nutritional, SBS type (end jejunostomy, SBS-J; jejuno-colic anastomosis, SBS-JC; jejunoileal anastomosis with an intact colon and ileocecal valve, SBS-JIC), underlying disease and intravenous supplementation (IVS) characteristics were analyzed. IVS was classified as fluid and electrolyte alone (FE) or parenteral nutrition admixture (PN). The mean daily IVS volume, calculated on a weekly basis, was categorized as <1, 1-2, 2-3 and >3 L/day., Results: In the entire group: 60.7% were females and SBS-J comprised 60% of cases, while mesenteric ischaemia (MI) and Crohn' disease (CD) were the main underlying diseases. IVS dependency was longer than 3 years in around 50% of cases; IVS was infused ≥5 days/week in 75% and FE in 10% of cases. Within the SBS-IF cohort: CD was twice and thrice more frequent in SBS-J than SBS-JC and SBS-JIC, respectively, while MI was more frequent in SBS-JC and SBS-JIC. Within countries: SBS-J represented 75% or more of patients in UK and Denmark and 50-60% in the other countries, except Poland where SBS-JC prevailed. CD was the main underlying disease in UK, USA, Denmark and The Netherlands, while MI prevailed in France, Italy and Poland., Conclusions: SBS-IF type is primarily determined by the underlying disease, with significant variation between countries. These novel data will be useful for planning and managing both clinical activity and research studies on SBS., Competing Interests: Declaration of competing interest None declared., (Copyright © 2021 European Society for Clinical Nutrition and Metabolism. Published by Elsevier Ltd. All rights reserved.)