Lal, Simon

Abstract Introduction Despite the widespread use of telemedicine to assess patients with intestinal failure (IF) receiving home parenteral nutrition (HPN), satisfaction with remote consultation methods has not been comprehensively assessed. Here, we assessed patient and clinician attitudes to telephone and video IF consultations. Methods Telemedicine questionnaires were designed and distributed in paper form to patients with IF receiving HPN under the care of a UK national IF reference center and electronically to IF clinicians in Europe, North America, Australia, and New Zealand. Results Seventy‐eight patients (53 women and 25 men) and 110 clinicians agreed to complete the questionnaires. Sixty seven percent of patients who had telephone consultations and 50% of patients who had video consultations were satisfied with their consultations. Forty nine percent and 83% of patients who had telephone and video consultations, respectively, felt they were of the same standard as their face‐to‐face consultations. Despite 60% of clinicians feeling telemedicine training would be useful, 55% of clinicians stated they mostly or always met all of the needs of their patients via telephone consultations, whereas 96% of clinicians felt similarly for video consultations ( P = 0.002). A total of 33% and 57% of clinicians felt telephone and video consultations, respectively, were of the same standard as face‐to‐face consultations ( P = 0.004). Conclusion This study comprehensively assesses attitudes to IF telemedicine consultations. Our data show that a large proportion of patients and clinicians are satisfied with IF telephone and video consultations. However, there is an unmet need amongst clinicians for telemedicine training.

AbstractThe role of long‐term parenteral support in patients with underlying benign conditions who do not have intestinal failure (IF) is contentious, not least since there are clear benefits in utilising the oral or enteral route for nutritional support. Furthermore, the risks of long‐term home parenteral nutrition (HPN) are significant, with significant impacts on morbidity and mortality. There has, however, been a recent upsurge of the use of HPN in patients with conditions such as gastro‐intestinal neuromuscular disorders, opioid bowel dysfunction, disorders of gut–brain interaction and possibly eating disorders, who do not have IF. As a result, the European Society of Clinical Nutrition and Metabolism (ESPEN), the European Society of Neuro‐gastroenterology and Motility (ESNM) and the Rome Foundation for Disorders of Gut Brain Interaction felt that a position statement is required to clarify – and hopefully reduce the potential for harm associated with – the use of long‐term parenteral support in patients without IF. Consensus opinion is that HPN should not be prescribed for patients without IF, where the oral and/or enteral route can be utilised. On the rare occasions that PN commencement is required to treat life‐threatening malnutrition in conditions such as those listed above, it should only be prescribed for a time‐limited period to achieve nutritional safety, while the wider multi‐disciplinary team focus on more appropriate biopsychosocial holistic and rehabilitative approaches to manage the patient's primary underlying condition.

Introduction Pregnancy in patients with chronic intestinal failure (CIF) is a relatively rare occurrence but is an important contemporary topic given both the increasing use of home parenteral nutrition (HPN) and the demographics of patients with CIF. Method An opinion-based survey was produced in a multidisciplinary manner, which was then distributed internationally, via the European Society for Clinical Nutrition and Metabolism network, using a web-based survey tool for healthcare professionals with a specialist interest in the management of CIF. Results Seventy specialists from 11 countries completed the survey. Fifty-four per cent of the respondents reported some experience of managing pregnancy in patients with CIF. However, 60% stated that they did not feel that it was their role to discuss the topic of pregnancy with their patients, with fewer than 10% stating that they routinely did so. Respondents felt that an individualised approach was required when considering alterations to parenteral support prior to conception, during pregnancy and in the postnatal period. Most respondents also felt there was no increased risk of catheter-related blood stream infections, while catheter-related thrombosis was deemed to be the most significant HPN-related complication for pregnant women. Conclusion This study reports a variable experience, knowledge and confidence of healthcare professionals when considering pregnancy in patients with CIF. The risk of HPN-related complication was felt to be greater during pregnancy, with an individualised approach being the preferred route for most aspects of care. The findings support the need for an international registry and subsequent consensus guidelines for the management of pregnancy in CIF.

AbstractBackgroundChronic intestinal pseudo‐obstruction (CIPO) and enteric dysmotility (ED) are small intestinal motility disorders defined by radiological and manometric criteria. In the absence of consensus guidelines, we surveyed opinions on the diagnosis and management of CIPO and ED among experts from different countries.MethodsA survey questionnaire was circulated electronically to members of the European society for Clinical Nutrition and Metabolism, European Society of Neurogastroenterology and Motility, and United European Gastroenterology. Only responses from participants completing all required components were included.Key ResultsOf 154 participants, 93% agreed that CIPO and ED should be classified separately. Overall, 73% reported an increasing incidence of CIPO and ED, with hypermobile Ehlers‐Danlos Syndrome the group with the largest increase in referrals (37%), particularly in the UK (P < .0001). The majority (95%) find diagnosing CIPO and ED difficult. Notably, antroduodenal manometry, a test mandated to diagnose ED, is infrequently used (only 21% respondents use in >50% cases) and full thickness biopsies were reported to seldom influence medical treatment, nutritional management, and prognosis. Respondents reported that very few treatments are useful for most patients, with bacterial overgrowth treatment, prucalopride, and psychological therapies felt to be the most useful. While only 23% of clinicians felt that parenteral nutrition (PN) improves gastrointestinal symptoms in >50% of cases, 68% reported PN dependency at 5 years in the majority of cases.Conclusions and InferencesThese data highlight the difficulties with diagnosing and managing CIPO and ED and underscore the urgent need for international, multidisciplinary, clinical practice guidelines.

AbstractFor patients receiving home parenteral nutrition (HPN), vascular access with a central venous catheter (CVC) is essential to safely administer parenteral nutrition (PN) to meet their nutrition and hydration needs. Unfortunately, despite rigorous training and prevention strategies, CVCs are susceptible to complications such as infection, occlusion, thrombosis, and mechanical failure. Much of the published research on CVC complications focuses on infections; however, catheter occlusions and mechanical failures also contribute significantly to catheter dysfunction and loss. Frequent CVC exchanges put HPN patients at risk of loss of vascular access, making it essential that any strategies that can salvage the CVC be implemented prior to removal. CVC repair is 1 technique that can be utilized to avoid CVC exchanges in certain situations. CVC repairs can be performed in the office or on the ward and are cost effective when compared with CVC replacement. When performed by trained clinical staff, the procedures are highly successful and associated with low risk.