COVID-19 infection in patients on long-term home parenteral nutrition for chronic intestinal failure.

BACKGROUND AND AIMS: To investigate the incidence and the severity of COVID-19 infection in patients enrolled in the database for home parenteral nutrition (HPN) for chronic intestinal failure (CIF) of the European Society for Clinical Nutrition and Metabolism (ESPEN). METHODS: Period of observation: March 1st, 2020 March 1st, 2021. INCLUSION CRITERIA: patients included in the database since 2015 and still receiving HPN on March 1st, 2020 as well as new patients included in the database during the period of observation. Data related to the previous 12 months and recorded on March 1st 2021: 1) occurrence of COVID-19 infection since the beginning of the pandemic (yes, no, unknown); 2) infection severity (asymptomatic; mild, no-hospitalization; moderate, hospitalization no-ICU; severe, hospitalization in ICU); 3) vaccinated against COVID-19 (yes, no, unknown); 4) patient outcome on March 1st 2021: still on HPN, weaned off HPN, deceased, lost to follow up. RESULTS: Sixty-eight centres from 23 countries included 4680 patients. Data on COVID-19 were available for 55.1% of patients. The cumulative incidence of infection was 9.6% in the total group and ranged from 0% to 21.9% in the cohorts of individual countries. Infection severity was reported as: asymptomatic 26.7%, mild 32.0%, moderate 36.0%, severe 5.3%. Vaccination status was unknown in 62.0% of patients, non-vaccinated 25.2%, vaccinated 12.8%. Patient outcome was reported as: still on HPN 78.6%, weaned off HPN 10.6%, deceased 9.7%, lost to follow up 1.1%. A higher incidence of infection (p = 0.04), greater severity of infection (p < 0.001) and a lower vaccination percentage (p = 0.01) were observed in deceased patients. In COVID-19 infected patients, deaths due to infection accounted for 42.8% of total deaths. CONCLUSIONS: In patients on HPN for CIF, the incidence of COVID-19 infection differed greatly among countries. Although the majority of cases were reported to be asymptomatic or have mild symptoms only, COVID-19 was reported to be fatal in a significant proportion of infected patients. Lack of vaccination was associated with a higher risk of death.

Impact of Remote Prescribing Consultations in Tertiary Care

Introduction COVID-19 has impacted the delivery of services provided throughout the National Health Service. Innovative ways of working remotely has been a challenge to provide safe and effective care to patients in a timely manner. The Gastroenterology and Nutrition Team at Birmingham Children's Hospital, treat one of the largest cohorts of paediatric patients in Europe with: Inflammatory Bowel Disease, intestinal failure receiving home parental nutrition and other gastrointestinal diseases. Many patients are on long-term medication and the pandemic increased the demand for remote prescription requests. The Advanced Nurse Practitioner recognised and developed a service improvement initiative to prescribe safely through remote consultations. Aim To provide a standardised approach to provide remote consultations in order to issue repeat prescriptions in a safe and effective manner. To adhere to current guidance, to promote best practice, work in partnership with GPs and to audit the findings following implementation. Method Searches were conducted for literature surrounding remote prescribing. Using current guidance, the ANP implemented a seven step approach in performing prescribing consultations (see figure 1). Results 232 patients requested repeat prescriptions, with a total of 435 medications. These figures are from booked clinics and any requests outside of these were not included in these findings. Figure 2 outlines the outcome from implementing stage 5 of the process (figure 1). Combining the number of GPs who agreed to prescribe, with the agreed Clinical Commissioning Groups (CCG's) funding, amounted to 54.74%. 17 CILT funding requests are pending, therefore 60.06% of requests are likely to be funded. 40 patients (17.24%) were removed from the medication requests for a variety of reasons and 48 requests (20.68%) are pending a response. In 18 consultations, recommendations were needed to promote patient safety, for example: . Unwell patient booked into a face to face clinic for review . Abnormal bloods - neutropenic (Azathioprine placed on hold) . Insufficient blood levels highlighted to consultant - increased medication dose/duration . Missed blood monitoring - arranged . Poor compliance - booked into Clinical Nurse Specialist clinic . Missed clinic appointments - booked in Summary By recognising and applying a new way of working has improved patient safety as it allows for a planned consultation to be completed in a timely assessment by an advanced practitioner. Auditing the process has reported that remote prescribing clinics have streamlined the process, provided accountability with clear documentation and facilitates working in collaboration with colleagues, all of which promote prescribing governance. This service improvement pathway has led to reducing drug costs within the department whilst generating income to the Trust, although figures are to be finalised. Conclusion It appears that from implementing a remote prescribing clinic, it has allowed a timely consultation to assess the patient, review investigations, identify evidence-based treatment options, present options and reach a shared decision. Working collaboratively with colleagues in primary care, by documenting and offering Effective Shared Care Agreements has developed patient care and reduced drug costs in the department. Many medications used in paediatrics are unlicensed. Where GPs have felt unable to prescribe in partnership with specialists, by offering paperwork to decline prescribing, has allowed the Gastroenterology Team work with the Commissioning Interface Liaison Team which has gained funding from the local CCG to cover the cost of supplying, dispensing and delivering the medication.

Pathobiome Transformation and Features of Enteral Insufficiency in Patients with Peritonitis during the Covid-19 Pandemic

We studied the features of acute enteral failure in patients with peritonitis in the setting of COVID-19 by studying the properties of the enteral pathobiome, biochemical, functional, pro-inflammatory and anti-apoptotic markers in diffuse peritonitis. A retrospective randomized cohort controlled study was conducted;it included 84 patients divided into two groups. Stratified randomization was used. The species composition and properties of the enteral luminal pathobiome were studied. 699 inoculations were made, resulting in 3024 isolates. The enteral morphofunctional coefficient, the level of alkaline phosphatase and its intestinal isoform were dynamically studied. In immunohistochemical studies, we studied the expression of CD-3 and Bcl-2. Patients with COVID-19 in addition to a decrease in the level of saprophytic microflora, showed a significant increase in Klebsiella spp., Candida, Clostridium spp. and Citrobacter (p <= 0.05). The rate of antibiotic resistance in the comparison group was 8.3%, in the main group - 36.9%. MRSA pathogens were noted in 86.4% of cases, VRSA strains were found in 20.6% of cases. Patients with COVID-19 had a deficiency of intestinal alkaline phosphatase, which persisted even on the day 5 of treatment. Macro- and microscopic studies showed pronounced inflammatory and apoptotic changes in the intestinal wall of patients in the main group. A specific enteral pathobiome that is multiresistant to antibiotics, pronounced inflammatory and apoptotic changes in the intestinal wall, and a predisposition to perforation of the small intestine are characteristics of enteral failure in diffuse peritonitis in the setting of COVID-19.

Patients, family members and healthcare professionals' top ten research priorities for adults receiving home parenteral nutrition for malignant or benign disease.

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.

In their shoes: Health care professionals walking a day in the life of patients with short bowel syndrome & intestinal failure.

BACKGROUND & AIMS: Short bowel syndrome leading to intestinal failure (SBS-IF) is a condition characterised by the inability of the gut to absorb the amount of water, nutrients and micronutrients needed to survive and requires long term home parenteral nutrition (HPN) to sustain life. Health care professionals (HCPs) working with patients with SBS-IF are aware of the daily challenges patients face. However, few have experienced the condition first-hand and put themselves 'in the shoes' of their patients. In Their Shoes (ITS) is an immersive simulation delivered through a smartphone application (app), in which participants experience the typical real-life challenges that somebody with SBS-IF will experience over a 24-h period, including social and psychological challenges. This study evaluated the impact of ITS simulation on HCPs working with adults with SBS-IF. METHODS: A representative sample of 27 multi-disciplinary team (MDT) members working on an Intestinal Failure Unit completed the ITS simulation over a 24-h period. A mixed methods design was used, which included participants completing a survey pre- and post-ITS experience, followed by focus groups and in-depth qualitative interviews. Pre- and post-intervention questions were analysed quantitively via paired t-tests and qualitative data arising from the focus groups and interviews were analysed using inductive thematic analysis. RESULTS: 25 participants (93%) completed 80% of the ITS challenges whilst 27 (100%) completed more than 50% challenges. Participants reported a 16% increase in knowledge, 18% increase in being able to talk to others about SBS and a 2% increase in empathy between pre- and post-simulation. Nineteen team members participated in focus groups and 10 in-depth interviews; qualitative analysis of digital recordings comprised four overarching themes: empathy; admiration and respect; empathy fatigue; learning experience. Despite the small and insignificant increase in empathy scores quantitatively, analysis of open-ended questions and qualitative data found that 74% of participants reported an increase in empathy levels whereas 26% felt it stayed the same. CONCLUSIONS: As a simulation-based learning method, ITS can have a positive impact on HCPs working into the SBS-IF setting. Positive benefits in clinical practice include increased levels of empathy, admiration and respect for patients amongst HCPs. Immersing into the ITS experience also allows HCPs to recognise the function and benefits to MDT working, both in terms of ensuring holistic patient centred care and managing HCP empathy fatigue.

Care of patients on home parenteral nutrition during the first year of the COVID-19 pandemic: Management of central line-associated bloodstream infections.

BACKGROUND AND AIM: The aim of this study was to analyze central line-associated bloodstream infections (CLABSI) in home parenteral nutrition (HPN) patients assisted by an interdisciplinary team during the first year of the COVID-19 pandemic in Argentina. METHODS: Longitudinal, retrospective and analytical study of patients on HPN for ≥90 days during 2020. Data collection included age (adults >18 years, pediatric ≤18 years), gender, diagnosis, type of catheter, number of lumens, venous access, days on HPN, infusion modality and number of CLABSI-associated events. In COVID-19 cases, number of patients, disease progression, mortality rate and microorganisms involved were analyzed. RESULTS: A total of 380 patients were included, 120 (31.6%) pediatric and 260 (68.4%) adult patients. Median age was 44.50 years (10; 62.25). Twelve patients (3.15% of the total) had COVID-19; of these, two pediatric and seven adult patients had no complications, and three adults died of COVID-19 pneumonia. The diagnoses observed were benign chronic intestinal failure (CIF, n = 311), grouped into short bowel (n = 214, 56.3%), intestinal dysmotility (n = 56, 14.7%), intestinal fistula (n = 20, 5.3%), and extensive small bowel mucosal disease (n = 21, 5.5%); malignant tumors (n = 52, 13.7%); other (n = 17, 4.4%). Total catheter days were 103,702. Median days of PN duration per patient were 366 (176.2, 366). The types of catheters used were tunneled (317 patients, 83.4%); peripherally inserted central (PICC) line (55 patients, 14.5%) and ports (8 patients; 2.1%). A total of 111 CLABSI was registered, with a prevalence of 1.09/1000 catheter days (adult, 0.86/1000 days; pediatric, 1.51/1000 days). The microorganisms identified in infectious events were Gram + bacteria (38, 34.5%); Gram-bacteria (36, 32%); mycotic (10, 9%); polymicrobial (4, 3.6%); negative culture and signs/symptoms of CLABSI (23, 20.3%). The odds ratio between pediatric and adult patients was 2.29 (1.35, 3.90). CONCLUSION: The rate of CLABSI during the COVID-19 pandemic was within the ranges reported by international scientific societies. The risk of CLABSI was higher in pediatric patients, and mortality rate in COVID-19 infected patients was higher than in the general population.

The Effect of COVID-19 Pandemic in Intestinal Rehabilitation and Transplant Patients - International Multicenter Survey

Purpose: It has been proposed that patients with intestinal failure (IF) and intestine transplant (IT) are at higher risk of severe complications of COVID-19 due to weakened immunity and comorbidities. Multidisciplinary teams had to adapt their clinical approaches in order to keep these patients as safe as possible during the pandemic. Data is lacking. Method(s): Retrospective, observational, multicenter study performed with 3 surveys to assess COVID-19 practice changes in IF and IT patients. Result(s): 17 centers were included in the analysis;six had a 3 (+/- 4) months moratorium on performing transplant. Nine delayed their routine follow up including "protocol" biopsies. Nine reported decrease in new referrals. Sixteen incorporated telemedicine. Two reported rehabilitation services (home health, PN deliveries) being affected. In the first survey, 10 centers (59%) reported having IF and IT patients with COVID-19. In the other 2 surveys, a total of 25 IF and IT patients were reported positive for COVID-19. Of the 11 IF patients, 8 were male;7 were adults, with a mean age of 60 (+/- 8) years. Nine of them were symptomatic at presentation, with the most prevalent symptoms being fever/chills, cough and sore throat;hospitalization was required in 45.5%, all patients survived. A total of 14 IT patients were positive;8 were female;all of them were adults, mean age: 47 (+/- 16) years. All of them were symptomatic at presentation, with the most prevalent symptoms being fever/chills, dyspnea and cough. Hospitalization was required in 50%. Immunosuppression was discontinued in 1 patient, decreased in 5 (all on tacrolimus), and left unchanged in 8 cases;3 patients (21%) died. Conclusion(s): Many aspects of healthcare have been impacted by the COVID-19 pandemic. Centers adapted to new paradigms in patient care. Despite the availability of telemedicine, hospitals that treat IF and IT patients have found difficulties to sustain an appropriate home care regimen and referrals. IF patients did not have increased mortality, but IT recipients did, with similar results to those reported for other solid organs.

Does Frequency of in-Person Clinic Evaluation Impact Central Line-Associated Bloodstream Infections in Pediatric Home Parenteral Nutrition Patients

Background: Home parenteral nutrition (HPN) is the primary treatment for patients with pediatric intestinal failure. It is a complex, life-sustaining therapy requiring a central venous catheter (CVC), and carries high morbidity. Central line-associated bloodstream infection (CLABSI) is a common and potentially fatal complication of HPN. Patients on HPN require a skilled multi-disciplinary team- including physicians, nurses, dietitians and pharmacists-to prevent HPN related complications, provide safe and individualized nutrition support that is evaluated on a regular basis in the ambulatory setting. In-person visits in the clinic setting allow for HPN patients to be evaluated by all disciplines, and full assessment of weight and general condition, fluid status and laboratory values. Importantly, clinic evaluations also allow for close examination of central venous catheter (CVC), discussion with caregivers to identify potential infection risks, and opportunities for education to prevent infections and other complications. Program standard of care is bimonthly clinic and laboratory evaluation, more frequently if clinically indicated. The COVID-19 crisis required transition of many of these evaluations from in-person to telemedicine, which has created new challenges in caring for high-risk pediatric HPN patients and prevention of CLABSI. Multi-disciplinary telemedicine visits including nursing, dietitians and physicians were substituted for in-person evaluations at first exclusively at onset of pandemic, then to every other visit as COVID rates improved and vaccinations became more available. Method(s): HPN clinic encounters from 2019-present were reviewed in a large pediatric HPN program and compared to CLABSI rates. Attention was paid to in-person versus telemedicine evaluations in the setting of COVID-19 pandemic. CLABSI rate was defined as # of ambulatory infections/1000 catheter days, as defined by National Healthcare Safety Network (NHSN) guidelines. Result(s): Despite decreased frequency of in-person clinic evaluation, ambulatory CLABSI rates did not increase during this time. In fact, median CLABSI rate from 2020 to present decreased from 0.81/1000 catheter days to 0.5/1000 catheter days. In 2020, there was a mild trend toward increased CLABSI rate in patients who had higher percentage of telemedicine versus in-person encounters;however, this was not statistically significant. This trend was not observed in 2021. Conclusion(s): Pediatric patients receiving HPN are high-risk and require evaluation by a multidisciplinary team at regular intervals to maintain safety. COVID-19 pandemic interrupted ability to see these complex patients for in-person evaluation with regular frequency;therefore multidisciplinary telemedicine visits were substituted. While in-person evaluation remains the gold standard for management of patients on HPN, intermittent use of multi-disciplinary telemedicine encounters can be utilized to safely care for pediatric HPN patients, without resultant (Figure Presented).

Comfort in Telemedicine Based on Diagnosis and Reason for Referral in Pediatric Gastroenterology

Background: Telemedicine can provide increased patient access to care, cost savings and high patient satisfaction. Payors have extended reimbursement for telemedicine and although few pediatric gastroenterologists had experience with telemedicine before the COVID-19 pandemic, many practices continue to offer this as a care modality model. Comfort in practicing telemedicine for specific conditions amongst NASPGHAN members is not known. This study evaluates comfort in practicing telemedicine for common indications for outpatient GI consultation referral and follow up visit diagnoses. Method(s): In June-August 2020, we surveyed members of NASPGHAN with an instrument that included two multi-select questions: 1) Which of the following reasons for referral would you feel comfortable completing with telemedicine? 2) Which of the following conditions would you feel comfortable using telemedicine for a routine follow up? Results: 136 participants answered the two survey items. Constipation (n=121, 89%), heartburn (n=109, 80%), and infant reflux (n=109, 80%) were the reasons for referral most frequently selected. Referral of jaundice (n=26, 19%), second opinion (n=45, 33%), and poor weight gain (n=51, 38%) received the least mentions. For follow up appointments, diagnoses of celiac disease (n=126, 93%), functional gastrointestinal disorders (n=126, 93%), eosinophilic esophagitis (n=120, 88%) were the three most frequent, while liver transplantation (n=24, 18%), intestinal failure (n=26, 19%), and short bowel syndrome without intestinal failure (n=34, 25%) were the diagnoses selected the least. 14 respondents selected comfort with all new patient reasons for referral and follow up visits. Conclusion(s): There is variability in provider comfort to utilize telemedicine for providing consultation or follow up care based on reason for referral or patient diagnosis. Provider comfort in providing care should be considered when offering telemedicine as a practice model moving forward. Reasons underlying provider dis/comfort should be explored using qualitative methods. (Figure Presented).

The use of technology to aid the formation of home parenteral nutrition contingency prescriptions

The COVID-19 pandemic represented a substantial risk to the continued supply of compounded home parenteral nutrition (HPN) to patients with intestinal failure. NHS England requested that all patients receiving HPN have a contingency prescription that could be supplied if their homecare provider weren’t able to supply their compounded prescription. The formation of contingency prescriptions and subsequent communication of the plan to both the patients and those involved in their care, was a significant undertaking. Could technology aid in the formation of the contingency prescriptions, improve communication between members of the multidisciplinary team (MDT) and standardise the accompanying written administration plan? An existing spreadsheet developed in-house was used which contained all the commercially available multi-chamber bags (MCBs) and terminally sterilised fluids (TSFs) on the market. A deficits tab was added to the workbook that calculated the weekly differences between the patient’s usual compounded prescription and a proposed contingency prescription. Drop down menus auto populated the contents of the MCBs and TSFs into the spreadsheet. This tab was printed, reviewed by other members of the MDT and was risk-assessed. A tab was created which transferred the selected MCBs and TSFs onto a contingency template to send to homecare providers. This included custom instructions e.g. drug name, dose/volume, form, directions/frequency and total supply per week. Patient information was copied from the compounded formulation request and pasted into the contingency template. The template could then be exported to a separate document, allowing additions of line locks / other medication usually on the prescription. A further tab facilitated the production of a written administration plan for the contingency regimen. Patient information was auto populated from the order template, while drop down menus restricted the bags used to only those that had been selected on the deficits tab. Custom administration instructions were auto populated into the plan. A table showed how many of each bag per week are required, and this counted down as the written plan was populated. Once the written plan was populated, the spreadsheet calculated the number of each type of ancillaries required each week. A breakdown of daily calories and electrolytes supported the user in spreading the prescription as equally as possible across the week. Further alterations were made using an export function prior to sending to the patient and the homecare provider. The development of this spreadsheet has significantly improved the efficiency of the process for creating contingency prescriptions for patients on compounded HPN and produced a robust method for communicating the proposed regimen between members of the MDT. It has successfully standardised our wording on the contingency order templates and written administration plans whilst eliminating transcription errors.

Monitoring bone mineral density in patients with chronic intestinal failure on home parenteral nutrition – a national centre experience

Type 3 intestinal failure (IF) is known to negatively impact bone metabolism contributing to increased prevalence of osteoporosis and associated increases in morbidity and mortality. It has been challenging to appropriately monitor for these pathologies under the restrictions imposed by the ongoing COVID-19 pandemic. We performed a retrospective audit assessing compliance with current guidelines1. All type 3 IF patients receiving home parenteral nutrition (HPN) prescribed at a national centre prior to 1st May 2021 were included. Data was collected from hospital electronic recorded, de-identified and collated on an excel spreadsheet that was securely stored on a departmental computer. 270 patients fulfilled inclusion criteria (35.5% male, mean age 54.0 ± 17.5 years). The mean age at HPN initiation was 45.8 ± 18.5 years and the mean number of years on HPN was 8.2 ± 7.2 years. The maximum duration of HPN administration in this cohort was 37 years. DEXA scan results performed within the preceding 5 years were available for 23.0% of patients. Of these scans 96.8% of patients had evidence of reduced bone density (45.2% osteopenic, 51.6% osteoporotic). Comparing DEXA results at diagnosis and in the last 5 years, a majority (54.2%) of patients progressed or remained osteoporotic, with 8.3% showing improvement in bone density and 4.2% of patients having a return to normal bone density. 59.6% of patients had blood tests performed within the preceding 12 months. 54.4% of patients had undergone plasma vitamin D levels measurement. Vitamin D levels were found to be low (<50nmol/L) in 32.7%. 44.4% of patients were receiving vitamin D supplementation of which 86.7% were prescribed oral supplements and 13.3% intramuscular supplements. 31.3% of patients with osteoporosis were on bisphosphonate therapy. These results demonstrate high prevalence of metabolic bone disease amongst type 3 IF patients on HPN. This highlights a potentially modifiable risk of low-trauma fracture which has a very high morbidity and mortality index. Our findings regarding the prevalence and longitudinal changes in bone density are in agreement with the published ESPEN surveys2,3. The results also demonstrate poor compliance with current guidelines. We believe this reflects the challenges of obtaining non-emergent scans and blood test due to COVID-related restrictions as well as our patients’ very understandable fear of exposure should they attend hospital for a face-to-face review. It is also possible that some of these tests were performed locally, due to many patients living far away from our national referral centre, and thus not visible to the audit team. These findings have highlighted the need for greater education and prompted our group to increase our focus on metabolic bone disease during clinic interactions and to create a subsection of our database for tracking DEXA intervals for this patient cohort. References 1. Pironi L, Arends J, Bozzetti F, et al. ESPEN guidelines on chronic intestinal failure in adults. Clin Nutr 2016;35: 247-307. 2. Pironi L, Labate AM, Pertkiewicz M, et al. Prevalence of bone disease in patients on home parenteral nutrition. Clin Nutr 2002;4: 289-296 3. Pironi L, Tjellesen L, De Francesco A, et al. Bone mineral density in patients on home parenteral nutrition: a follow-up study. Clin Nutr. 2004 Dec;23(6):1288-302

Personalized exercise intervention in HPN patients - A feasibility study.

BACKGROUND: Physical health status may be predictive of readmissions, psychological health and mortality in patients with short bowel syndrome. AIMS: This study aimed to investigate the feasibility and effect of an individualized exercise intervention and secondary, oral nutrition intake counseling on Timed-Up-and-Go (TUG) and 30 s Chair Stand Test (CST) as well as body-composition and EuroQol (EQ)-5D-5L, in patients with chronic intestinal failure (IF) type III receiving HPN and/or fluid therapy. METHODS: A 12-week individualized exercise intervention consisting on three weekly home based sessions, and nutrition counselling focusing on protein intake and reducing high stoma output, was performed. Weekly follow-up by phone was done on motivation to exercise. RESULTS: The study invited 71 patients, 44 accepted the invitation (62%), 37(52%) were included, and 31 (84%) completed the intervention. The exercise intervention was well tolerated. TUG improved from 8.9(SD 5.5) to 7.7(SD 3.8) (p = 0.033). CST improved by four repetitions (<0.001∗). A statistical, however not clinically relevant improvement was seen in muscle mass. No improvement was seen in (EQ)-5D-5L total, but insignificantly (p = 0.055) for physical function only. Protein intake improved by 10.6 g/day (p = 0.008). CONCLUSIONS: A 12 weeks individualized exercise intervention showed very feasible and beneficial in HPN patients. Physical function improved statistically and clinically, and oral protein intake improved. QoL overall did not improve, however COVID-19 was an uninvited partner throughout the study period, which may have influenced general QoL. As only 62% accepted the invitation to participate, home based exercise intervention may not apply to all patients.

COVID-19 infection in patients with intestinal failure: UK experience.

BACKGROUND: The direct effect of the coronavirus disease 2019 (COVID-19) pandemic on patients with intestinal failure (IF) has not been described. METHODS: We conducted a nationwide study of UK IF centers to evaluate the infection rates, presentations, and outcomes in patients with types 2 and 3 IF. RESULTS: A total of 45 patients with IF contracted COVID-19 between March and August 2020; this included 26 of 2191 (1.2%) home parenteral nutrition (HPN)-dependent adults and 19 of 298 (6.4%) adults hospitalized with type 2 IF. The proportion of patients receiving nursing care for HPN administration was higher in those with community-acquired COVID-19 (66.7%) than the proportion in the entire HPN cohort (26.1%; P < .01). Two HPN-dependent and 1 hospitalized patient with type 2 IF died as a direct consequence of the virus (6.7% of 45 patients with types 2 or 3 infected). CONCLUSION: This is the first study to describe the outcomes of COVID-19 in a large cohort of patients requiring long-term PN. Methods to reduce hospital and community nosocomial spread would likely be beneficial.

An International Survey of Clinicians' Experience Caring for Patients Receiving Home Parenteral Nutrition for Chronic Intestinal Failure During the COVID-19 Pandemic.

BACKGROUND: This survey of centers caring for patients receiving home parenteral nutrition (HPN) was conducted to assess the impact of the coronavirus disease 2019 (COVID-19) crisis on the management of these patients regarding provision of care, monitoring, regular follow-up, and any changes to service infrastructure. METHODS: A survey was devised and publically published on the Research Electronic Data Capture database management system, with individual centers responding to a public link. RESULTS: A total of 78 adult and pediatric centers worldwide contributed to the survey, representing ≥3500 patients' experiences. Centers reported infrastructure maintenance for Parenteral Nutrition (PN) bag deliveries to patients (60, 76.92%) or delivery of ancillary items (57, 73.08%), home delivery and HPN administration (65, 83.33%), and home care nurse shortages (25, 32.05%). Routine follow-up of HPN patients changed to either all telemed or mixed with emergency clinic review (70, 89.74%). In 26 centers (33.33%), HPN for newly discharged patients with benign conditions was reduced or stopped. Based on clinical history, the centers reported psychological distress for patients (52, 66.67%), with anxiety, worry, concern, and apprehension reported most frequently (37 of 52, 71.15%) but also fear (10 of 52, 19.23%), depression (5 of 52, 9.62%), and issues related to isolation/confinement (12 of 52, 23.08%). CONCLUSIONS: The COVID-19 pandemic was reported by clinicians to have had a far-reaching adverse impact on patients receiving HPN, especially their safety in terms of provision of personal protective equipment, PN bags, available nursing staff, and psychological well-being. Healthcare systems responded to the challenge and presented new ways of working.

Effect of the COVID-19 Pandemic on Pediatric Intestinal Failure Healthcare Delivery.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has influenced how healthcare is being provided, particularly in patients whose diagnoses require multidisciplinary care, such as pediatric intestinal failure (IF). We sought to ascertain the effects of the COVID-19 pandemic on healthcare delivery for pediatric patients with IF. METHODS: A 20-question survey was administered to members of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition Intestinal Rehabilitation (IR) Special Interest Group. Input values were "yes" and "no," along with a free-text response. Following a 10-day open survey period, data were divided into cohorts based on patient population size and disease burden by state. Analysis was then performed using the χ2 test application. RESULTS: Responses from 29 centers were included in analysis. Centers that followed >50 patients on parenteral nutrition (PN) were more likely to have social workers present in telemedicine visits and observed more central line difficulties among families. Centers located in states with <40,000 reported cases of COVID-19 saw patients less frequently and were more likely to withhold changes to PN prescriptions. Additionally, the survey revealed a significant degree of financial hardship and food insecurity among families. CONCLUSION: Many aspects of pediatric IF healthcare delivery have been impacted by the COVID-19 pandemic, both for care providers and caregivers. Despite the availability of telemedicine, IR centers should remain attentive to the global needs of the pediatric IF patient, as well as their families.

Considerations for the management of home parenteral nutrition during the SARS-CoV-2 pandemic: A position paper from the Home Artificial Nutrition and Chronic Intestinal Failure Special Interest Group of ESPEN.

The management of patients with chronic intestinal failure requiring home parenteral nutrition has been and will continue to be impaired during the SARS-CoV-2 pandemic. Multidisciplinary intestinal failure teams may have to adapt their clinical approaches to home care, outpatient care as well as hospital admission and discharge in order to keep this vulnerable group of patients as safe and well as possible during the unprecedented challenges that countries are facing during the pandemic. Equally, it is important that expert advice from intestinal failure teams is available when home parenteral nutrition (HPN)-dependent patients require admission with SARS-CoV-2 infection. The Home Artificial Nutrition & Chronic Intestinal Failure Special Interest Group of the European Society for Clinical Nutrition and Metabolism (ESPEN) has developed a position paper to outline areas for intestinal failure teams to consider when managing patients with chronic intestinal failure during the SARS-CoV-2 pandemic.