Factors that impact on the quality of life of intestinal failure patients treated with home parenteral nutrition: protocol for a multicentre, longitudinal observational study.

BACKGROUND: Home parenteral nutrition (HPN) refers to the intravenous administration of macronutrients, micronutrients and fluid. The aims of treatment are to increase survival and improve quality of life (QoL). However, patients struggle with physiological symptoms, time-consuming invasive therapy and an increased occurrence of depression and social isolation. Our aim is to understand how HPN impacts the QoL of patients, and the contribution played by the complications of treatment, for example, liver disease. METHODS AND ANALYSIS: A multicentre, longitudinal, observational study will be conducted using routinely collected clinical data. Participants will also be asked to complete three QoL questionnaires (EuroQol-5 Dimensions, Short Form 36 and HPN-QoL) at baseline and 12 months. The primary outcome is mean change in QoL scores over 12 months. Secondary outcomes include how factors including liver function, gut microbiota, number of infusions of PN per week, nutritional composition of PN and nutritional status impact on QoL scores. ETHICS AND DISSEMINATION: Ethical approval was obtained from HRA and Health and Care Research Wales Research Ethics Committee (21/SC/0316). The study was eligible for portfolio adoption, Central Portfolio Management System ID 50506. Results will be disseminated through peer-reviewed scientific journals and presented at national and international meetings.

Quality of life and home parenteral nutrition: a survey of UK healthcare professionals' knowledge, practice and opinions.

BACKGROUND: There is increasing interest in the assessment of health-related quality of life (QoL) in the care of patients treated with home parenteral nutrition (HPN). However, it is not known whether healthcare professionals (HCPs) have embedded QoL assessment into routine clinical practice in line with current guidelines to favour a more holistic approach to HPN care. The aim of this study was to assess knowledge, current practice and the opinions of HCPs regarding QoL in care of patients on HPN. METHODS: An online survey was distributed via email to HCPs working with HPN patients throughout England, Scotland, Wales and Northern Ireland. Participants were identified using a mailing list for the British Intestinal Failure Alliance, a specialist group within the British Association for Parenteral and Enteral Nutrition. RESULTS: The survey was completed by 67 professionals comprising 24 dietitians, 17 nurses, 14 gastroenterologists, 6 pharmacists, 5 surgeons and 1 psychologist. Of these, 54 (80%) participants agreed that the measurement of QoL is useful. In contrast, 38 (57%) of all participants, including 27 (50%) of those participants who agreed that the measurement of QoL was useful, never measured QoL. Knowledge of QoL literature was rated as poor or very poor by 27 (40%) participants. CONCLUSIONS: Despite the perceived usefulness and importance of QoL assessment, very few HCPs embed it into clinical practice. Knowledge of QoL literature and QoL tools is variable, and there is significant variability in QoL practice. This is clear in terms of the frequency of QoL assessments and heterogeneity in methodology. In contrast, there was almost unanimous agreement that the complications associated with HPN contribute to poorer QoL. There is a need for specific, evidence-based, clinical practice guidelines detailing how to define and measure QoL in this patient population.

The effectiveness and acceptability of Mediterranean diet and calorie restriction in non-alcoholic fatty liver disease (NAFLD): A systematic review and meta-analysis.

BACKGROUND & AIMS: Lifestyle interventions that focus on reduced energy intake and improved dietary pattern are the mainstay of non-alcoholic fatty liver disease (NAFLD) management. However, it remains unclear which dietary approaches are most beneficial and promote greatest adherence. We aimed to synthesise data from randomised and clinical controlled trials, describing the effects of Mediterranean Diet and Calorie Restriction interventions on NAFLD surrogate markers, in adults. METHODS: We searched MEDLINE, Embase, Scopus, Web of Science, and Cochrane Central Register of Controlled Trials (October 2021). Study quality was assessed using the Cochrane Collaboration's tools: risk of bias for randomised controlled trials, and risk of bias in non-randomised studies of interventions. Meta-analyses were performed using a random effects model, and the I2 statistic was used to assess heterogeneity. RESULTS: Of 4041 records identified, 26 articles with 3037 participants met the inclusion criteria, including studies on calorie-restricted interventions (CRI) (n 9), Mediterranean diet (MD) interventions (n 13) and MD component interventions (n 4). Studies were heterogeneous regarding intervention components, assessment of liver status and diet outcomes. 3 studies reported zero attrition and mean attrition rate for the remaining 23 studies was 14%. Post-intervention meta-analyses revealed that dietary interventions reduced alanine aminotransferase (ALT) (P < 0.001), aspartate aminotransferase (AST) (P = 0.004), Fatty Liver Index (FLI) (P < 0.001), hepatic steatosis (HS) (P = 0.02), and liver stiffness (P = 0.01). CRI had favourable effects on ALT (P < 0.001), HS (P < 0.001) and liver stiffness (P = 0.009). MD reduced ALT (P = 0.02), FLI (P < 0.001) and liver stiffness (P = 0.05). There was a dose-response relationship between degree of calorie restriction and beneficial effects on liver function and weight loss, suggesting that this approach should remain the cornerstone of NAFLD management. In addition, diet composition changes have potential for improving NAFLD and the limited data suggest that MD may be an effective diet therapy. CONCLUSION: These results support the current guidelines in NAFLD. However, further studies, which robustly evaluate the effects of interventions on dietary intake, acceptability and sustainability of the interventions, and quality of life and other patient-related outcomes are needed to support effective care delivery.

The effects of different parenteral nutrition lipid formulations on clinical and laboratory endpoints in patients receiving home parenteral nutrition: A systematic review.

BACKGROUND: Home parenteral nutrition (HPN) is a life-sustaining therapy for individuals with intestinal failure in a community setting. It refers to the intravenous infusion of macronutrients, micronutrients, fluids and electrolytes. Routinely used HPN solutions contain different quantities of these components. Consequently, each HPN solution may have different impacts on metabolism, inflammation and oxidative stress. Long-term use of HPN can lead to a number of adverse health outcomes including the development of metabolic bone disease, intestinal failure associated liver disease and poor quality of life but whether, and how, the composition of HPN solutions contributes to these health sequelae is poorly understood. The aim of this study is to systematically review and evaluate the evidence for the differential effects of HPN solutions and to understand what features are associated with differences in clinical endpoints. METHODS: A systematic literature search was conducted between September and December 2020, and updated in July 2021 using the MEDLINE (Ovid), EMBASE, Scopus, and Web of Science databases. Studies were selected according to the following criteria (a) adult participants (>18 years old) dependent on HPN; (b) randomised controlled trials, prospective cohort and cross-sectional study designs; (c) primary research comparing two or more HPN solutions and (d) published in English language. Data were extracted and study quality assessed using Cochrane Collaboration's tools: Risk of Bias for Randomised Controlled Trials (RCTs); Risk of Bias in Non-Randomised Studies of Interventions; and the Newcastle Ottawa Scale for cross-sectional studies. RESULTS: Of the 5148 articles identified, seven RCTs, two prospective cohort and one cross-sectional study were included with a total of 295 participants. Studies varied in terms of duration (one to 60 months) and sample size (n = 5 to 88). Ten studies compared lipid emulsions (LE) and one study also compared LE with lipid-free HPN. No studies were found that compared the amino acid, vitamin, trace element or electrolyte components of HPN. In general, LE were well tolerated with no significant adverse effects. LE containing olive +/or fish oil were associated with a lower ω-6:ω-3 fatty acid ratio, positive reductions in markers of liver function, and changes in blood and cell fatty acid profiles. CONCLUSIONS: Despite the increasing use of HPN, there is surprisingly little evidence available to guide the provision of macro and micronutrients in the adult population requiring this therapy. Although LE containing olive +/or fish oil show promise with regards to liver function and blood and cell fatty acid profiles, further studies are needed before drawing definitive conclusions on the clinical value of these emulsions. It is likely that one type of HPN solution alone cannot be uniformly applied to patient care, and each patient should be assessed on an individual basis.

British Intestinal Failure Alliance (BIFA) guidance - haematological and biochemical monitoring of adult patients receiving home parenteral nutrition.

Home parenteral nutrition (HPN) is necessary for patients with prolonged intestinal failure which can be secondary to a variety of pathophysiological mechanisms or surgical resection. HPN is needed to supply micronutrients, macronutrients and water to reduce morbidity and mortality and to maximise the patient's quality of life. HPN requires close monitoring by a dedicated multidisciplinary team and is vital to minimise complications; both catheter related and metabolic. A regular comprehensive review is required including history, examination including anthropometry and blood testing. The focus of this review is on the monitoring of haematological and biochemical parameters. There is a paucity of evidence-based literature on the biochemical monitoring of HPN and existing guidance is sourced mostly on expert opinion and lower grade studies. Sources offering guidance on the frequency of biochemical monitoring for the stable adult HPN patient are the British Association for Parenteral and Enteral Nutrition, the European Society for Parenteral and Enteral Nutrition, the National Institute for Health and Care Excellence and the Australasian Society of Parenteral and Enteral Nutrition (AuSPEN). The aim of this work is to review and collate this existing guidance into one clear and concise review. It is recommended that biochemical parameters are checked at baseline, thereafter more frequently if concerns arise and less frequently when the patient's condition is stable, as assessed by the multidisciplinary team with expertise in HPN.

The effectiveness of buccal Vitamin D replacement in patients requiring home parenteral nutrition.

BACKGROUND AND AIMS: Patients with intestinal failure requiring home parenteral nutrition are at risk of vitamin D and other micronutrient deficiencies. Conventional enteral replacement of Vitamin D may not be sufficient for this patient group. This study examines whether buccal Vitamin D provides an alternative, effective route for supplementing Vitamin D in patients with intestinal failure. METHODS: A retrospective review of patients who received buccal Vitamin D replacement between 1st January 2013 and 1st January 2020 at our hospital in Northern England was carried out. Demographics were recorded as were patients' daily intravenous fluid requirements using standard ESPEN definitions. Serum Vitamin D levels were recorded prior to buccal replacement and then at a minimum interval of 3 months after commencement. A cost comparison of a 6 month course of this preparation was also made with an equivalent duration of replacement using oral cholecalciferol capsules. RESULTS: 17 patients were identified. The mean level of Vitamin D prior to replacement was 28.4 nmol/l with 65% of patients classed as Vitamin D deficient (<25 nmol/l) prior to replacement. The average duration of buccal replacement prior to a repeat level was 5 months. Following buccal Vitamin D replacement no patients were classed as Vitamin D deficient with all levels ≥25 nmol/l and a mean of 62.3 nmol/l. There was a statistically significant increase in post buccal replacement serum Vitamin D concentrations (p = 0.001). Using costings from our hospital pharmacy a 6 month course of this buccal Vitamin D preparation was 38% less expensive than 6 months of replacement with oral cholecalciferol capsules. CONCLUSIONS: This study shows that in patients with intestinal failure on home parenteral nutrition, buccal Vitamin D is both a use and cost-effective method of replacement.

Elevated Whole-Blood Manganese Levels in Adult Patients Prescribed "Manganese-Free" Home Parenteral Nutrition.

BACKGROUND: Manganese toxicity can occur as a complication of home parenteral nutrition (HPN). Patients can present with Parkinson disease-like symptoms. Preparations of trace elements (TEs) in parenteral nutrition (PN) generally provide amounts in excess of requirements. Our previous review observed 60% of adult HPN patients had high whole-blood manganese levels. Multi-TE (MTE) solutions were subsequently removed from all HPN formulations in January 2015. The aim of this evaluation was to determine whole-blood concentrations of manganese in adult patients receiving HPN to establish whether levels are now maintained within the normal reference range. METHODS: A retrospective review of whole-blood manganese levels in all patients receiving HPN between January 2018 and January 2019 from 1 hospital site was carried out. RESULTS: 100 patients were included in the review (59 female and 41 male). Normal whole-blood manganese levels (73-219 nmol/L) were observed in 70% of patients and elevated levels (>219 nmol/L) in 30% of patients. In the patients with elevated levels, 57% had not received manganese supplementation for at least 1 year prior to manganese being measured. Markers of cholestasis were similar between the 2 groups. CONCLUSIONS: Incidence of elevated whole-blood manganese concentrations in patients receiving HPN decreased from 60% to 30% upon discontinued use of an MTE solution. Elevated levels remain a concern despite patients being prescribed "manganese-free" PN. Patients receive this TE in amounts adequate to meet requirements through contamination and dietary intake alone, suggesting additional parenteral supplementation of manganese is not required.