key: cord-1017428-t05r41sf authors: PJ, Allan; Pironi, L; F, Joly; S, Lal title: An international survey of clinicians’ experience caring for patients on home parenteral nutrition for chronic intestinal failure during the COVID‐19 pandemic date: 2020-11-25 journal: JPEN J Parenter Enteral Nutr DOI: 10.1002/jpen.2050 sha: 4be90f6997c8c35c65f6ed36105b55588355e7f2 doc_id: 1017428 cord_uid: t05r41sf BACKGROUND AND AIMS: This survey of centres caring for patients on home parenteral nutrition (HPN) was conducted to assess the impact of the COVID‐19 crisis on the management of these patients in terms of provision of care, monitoring, regular follow‐up and any changes to service infrastructure. METHODS: A survey was devised and publically published on the REDCap database management system with individual centres responding to a public link. RESULTS: 78 adult and paediatric centres worldwide contributed to the survey, representing at least 3500 patients’ experience. Centres (n/78 unless otherwise specified, %) reported infrastructure maintenance for PN bag deliveries to patients (60, 76.92%) or delivery of ancillary items (dressing packs, gloves, bungs) (57, 73.08%) home delivery and HPN administration (65, 83.33%) but homecare nurse shortages (25, 32.05%). Follow up of routine HPN patients changed to either all telemed or mixed with emergency clinic review (70, 89.74%). In 26 centres (33.33%), new discharges on HPN for benign conditions were reduced or stopped. Based on clinical history the centres reported psychological distress for patients (52, 66.67%) with anxiety, worry, concern and apprehension reported most frequently (37/52, 71.15%) but also fear (10/52, 19.23%), depression (5/52, 9.62%) and issues related to isolation/confinement (12/52, 23.08%). CONCLUSIONS: The COVID‐19 pandemic was reported by clinicians to have had a far reaching adverse impact on patients on home parenteral nutrition, especially their safety in terms of provision of PPE, PN bags, available nursing staff and psychological well‐being. Healthcare systems responded to the challenge presented with new ways of working. This article is protected by copyright. All rights reserved Since December 2019 when the first cases of COVID-19, caused by severe acute respiratory syndrome Coronavirus-2 (SARS-CoV-2), were reported 1, 2 and subsequently developed into a pandemic, clinicians across the world have been struggling to effectively treat this infection. It has been characterised by asymptomatic carriage or low grade symptoms for the majority, and a minority developing low oxygen saturations, followed by a rapidity of deterioration into a severe acute respiratory syndrome 3 . The typical risk factors appear to be older age, multiple co-morbidities including diabetes, hypertension, respiratory disease and ethnicity 4, 5 . Intestinal failure (IF) is a relatively rare condition where the gut is unable to support life 6 . Treatment is by a central venous catheter (CVC) to provide the nutrients in the form of parenteral nutrition (PN). There are three main types of IF following abdominal surgery 6, 7 : Patients on HPN are at risk of complications associated with IF including catheter associated blood stream infections (CRBSI) and loss of central venous access from venous thrombo-embolic phenomena, 6, 8, 9 . Patients therefore require meticulous care of their CVC with ready access to gloves and disinfectants to prevent infections. Lowest CRBSI infection rates are observed in patients who are nursed in some series 10 . Prevention of infection with COVID-19 is thought to be reduced through mask usage 11 given the risk of airborne viral infections 12 , and should therefore be available for all carers, whether home care nurses or relatives. The ready availability of monitoring through biochemical assessments, clinic appointments, pertinent radiological investigations and access to fully staffed teams are important strategies to protect these vulnerable patients as recommended by ESPEN 6, 13, 14 . Patients with IF share similar key characteristics with patients who are at most risk from COVID-19. As a population, they are at risk of malnutrition, they have co-morbidities and as a population are getting older: 20-36% of patients on HPN were over the age of 65-69years 10 and up to 20% having multiple co-morbidities 10 . It is not unsurprising, therefore, that recommendations to prevent infection in patients with IF have suggested this can be achieved through isolating patients at risk 15, 16 . It was for these reasons that we wanted to survey clinicians who were caring for patients on HPN to determine how our caring for patients on HPN has changed, if patients/carers/nurses experienced deficiencies of care during the pandemic, whether in supply chain or in the way that we care for patients. Study data were collected and managed using REDCap (Research Electronic Data Capture) electronic data capture tools hosted at University of Oxford, Medical Sciences 17, 18 . The survey questionnaire was sent as a public link provided on both the ESPEN website, ESPEN newsletter and sent to 122 centres on the ESPEN chronic intestinal failure database 6 . The survey was open from 1th May to 10th June 2020. The only identifier recorded was the name of the institution and the country location. REDCap is a secure, web-based software platform designed to support data capture for research studies, providing 1) an intuitive interface for validated data capture; 2) audit trails for tracking data manipulation and export procedures; 3) automated export procedures for seamless data downloads to common statistical packages; and 4) procedures for data integration and interoperability with external sources. The results were analysed using Excel (Microsoft, Washington, USA). Where respondents were unsure of whether they had any patients infected with COVID-19, all subsequent data surrounding rates of presentation symptoms, administration of PN and inpatient management were included in the not infected responses. The study was divided into 15 sections: 70 (89.74%) centres changed to either all telemed or a mixture of telemed and emergency clinic review, as can be seen in Error! Reference source not found.. In addition, the frequency of biochemistry testing was reduced or stopped in 50 (64.11%) centres and routine or non-urgent radiological tests reduced or stopped in 71.79%. Lastly, it was important to assess the impact the COVID-19 pandemic had on planned discharges and whether there was a difference for benign or malignant conditions. Indeed, both conditions fared similarly with a reduction or cessation of discharges on HPN for benign conditions occurring in 33.33% of centres and for malignant conditions in 29.48% of centres. Despite the risk that the COVID-19 pandemic could have had on the infrastructure of HPN delivery (production, delivery, administration), whilst there was a reduction observed, the majority of centres reported favourable outcomes in terms of sustainability within the system. The majority of centres (52, 66.67%) reported opinion about the psychological impact of the pandemic on HPN patients. Looking at the frequency of free-text responses, certain themes appeared, and are reported as a proportion of those who responded that the pandemic did have an impact on the psychology of their patients: 71.15% reported words or phrases that encompassed anxiety, worry, concern and apprehension; 19.23% reported fear; 9.62% depression; stress 7.69%; 23.08% reported negative thoughts or feelings surrounding isolation or confinement caused by the pandemic. This survey has shown that from centres across the world, the COVID-19 pandemic has affected the infrastructure surrounding care for patients on HPN. For the majority of centres, the provision or nursing care, PPE and administration of HPN has remained unaffected. In addition, routine follow up of patients on HPN has changed from being face to face, to using telemedicine, with an associated reduction in routine monitoring of biochemistry and radiological procedures. The ability to discharge new patients home on HPN was restricted for both benign and malignant conditions and to a similar degree. The opinion of the clinicians within each centre was that the pandemic was having a negative impact on their patient's psychology in terms of feelings of anxiety, fear, depression, and thoughts surrounding isolation or confinement. The dilemma for health authorities is the balance between general infection control measures that PPE affords versus protecting a valuable resource for healthcare professionals, and this has caused some to recommend not to wear masks 19 . However, the utility of mask protection suggests they are very helpful in protecting the wearer and community spread 20 with a marked reduction of approximately 90% in virus transmission 21 . It is worrying to note that in this survey, nursing teams caring for patients on HPN were not able to access appropriate masks in 30.77%. The lack of other PPE for appropriate central venous catheter care puts patients at risk of catheter related blood stream infections 8 . Unfortunately, this survey was not able to assess the impact of the loss of access to appropriate PPE or nursing support available on complications associated with IF such as CRBSI, but this information may become available in later studies. Small scale telemedicine was already being practiced for select patients to reduce distanced travelled to HPN centres 22, 23 . In a state of emergency, this has been rolled out widely, where 89.74% changed to all or a mixture of face to face work for emergencies and telemedicine, and using technological platforms with associated reduction in routine work in favour of keeping emergency work available. Whilst, 83% of healthcare professionals were inexperienced at using telemedicine in one study from Spain, 96% thought they were an adequate method of carrying out healthcare and useful for patients with chronic diseases for medical followup, who may come from a geographically dispersed area, and who needed routine administration such as prescription provision 24 , which characterises patients on HPN. Reluctance to commence telemedicine is thought to be due to three main barriers: clinician willingness, reimbursement and healthcare organisation 25 . The reimbursement if often the area that is needed to reassure healthcare providers that it is cost-effective to change. The further changes observed in monitoring, with a reduction or cessation of biochemistry in 64.11% of centres and radiology in 30.77% of centres, coupled with the reduction in elective work remains to be seen the delayed impact this will have on patient outcomes, though the small scale pilot studies found better outcomes for those selected patients 22, 23 . Where patients do gain access to medical services, only 20% of COVID-19 infections are thought to require admission 26 . The presentation symptoms fit with commonly observed patterns of pyrexia as the main symptom 1, 2, 4 , however, some studies have suggested GI symptoms may account for 2-40% of cases 1, 2, 4 . We noted similar observations to those reported in early series where non-invasive ventilation rates of 13-24% and invasive mechanical ventilation of 4-5% 1, 2 were higher than observed here, where 8.11% had non-invasive ventilation and 2.70% were intubated. We observed 5.41% mortality rate for patients on HPN compared with 11-15% in early series 1, 2 . A follow-up survey will be performed within the next few months as the present survey was not really designed to detect complications potentially related to Covid-19 infection. This article is protected by copyright. All rights reserved. The rise of psychological morbidity for patients on HPN in the face of an ongoing pandemic is worrying. Although it was a subjective evaluation by the clinicians, it is of interest that here 71.15% of centres reported words or phrases that encompassed anxiety, worry, concern and apprehension; 19.23% reported fear; 9.62% depression; 7.69% stress and 23.08% reported negative thoughts or feelings surrounding isolation or confinement caused by the pandemic. This compares with a study of 1210 Chinese residents that found 53% suggested the pandemic caused moderate to severe psychological distress and they reported a number of different psychological symptoms: depression (17%), anxiety (29%), stress (8%) 27 . Interestingly, the authors also reported better outcomes for those with specific up-to-date information (such as local infection rates) and messages of precautionary measures (eg hand hygiene or mask wearing). Clinical features of patients infected with 2019 novel coronavirus in Wuhan Epidemiological and clinical characteristics of 99 cases of 2019 novel coronavirus pneumonia in Wuhan, China: a descriptive study Clinical course and risk factors for mortality of adult inpatients with COVID-19 in Wuhan, China: a retrospective cohort study Clinical characteristics of 140 patients infected with SARS-CoV-2 in Wuhan Is ethnicity linked to incidence or outcomes of covid-19? ESPEN guidelines on chronic intestinal failure in adults Review article: intestinal failure Intestinal failure: a review Metabolic bone diseases in intestinal failure Home parenteral nutrition and the older adult: Experience from a national intestinal failure unit Mass masking in the COVID-19 epidemic: people need guidance Effectiveness of N95 respirators versus surgical masks against influenza: A systematic review and meta-analysis 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 ESPEN guideline on home parenteral nutrition Prevention of COVID-19 in patients with inflammatory bowel disease in Wuhan, China British Society of Gastroenterology guidance for management of inflammatory bowel disease during the COVID-19 pandemic Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support The REDCap consortium: Building an international community of software platform partners Rational use of face masks in the COVID-19 pandemic COVID-19: Face masks and human-to-human transmission. Influenza Other Respir Viruses Potential utilities of mask-wearing and instant hand hygiene for fighting SARS-CoV-2 Telehealth videoconferencing: improving home parenteral nutrition patient care to rural areas of Ontario, Canada Successful implementation of remote video consultations for patients receiving home parenteral nutrition in a national UK Centre Increase in Video Consultations During the COVID-19 Pandemic: Healthcare Professionals' Perceptions about Their Implementation and Adequate Management Telehealth for global emergencies: Implications for coronavirus disease 2019 (COVID-19) WHO Indonesia website: World Health Organisation Immediate Psychological Responses and Associated Factors during the Initial Stage of the 2019 Coronavirus Disease (COVID-19) Epidemic among the General Population in China PA would like to thank Prof Paul Klenerman for assistance in setting up the REDCap database.