The need to accurately measure energy intake and expenditure in patients with systemic sclerosis.

Background: Malnutrition is common in systemic sclerosis and patients are frequently underweight. However, the balance between assessed dietary energy intake versus expenditure has been neglected to date. This study aimed to assess energy (dietary) intakes and expenditures and to compare discrepancies in systemic sclerosis. Methods: Thirty-six outpatients with systemic sclerosis completed the study. Demographics and clinical data were recorded. Functional questionnaires were completed. Predicted energy requirements were calculated. Over a consecutive 3-day period, patients completed an estimated food diary and wore a specialist energy expenditure monitor (SenseWear® Armband). Assessments of intake and expenditure were compared for individual patients, and the impact according to patient demographics, clinical manifestations and disease severity evaluated. Results: Energy intake did not correlate with predicted (s = 0.117; p = 0.511) or measured (s = -0.039; p = 0.825) expenditures. Predicted and measured energy expenditures correlated, but actual values differed for individuals (intraclass correlation = 0.62; 95% limits of agreement = -459 to 751 kcal). Respiratory involvement was negatively correlated with number of steps (s = -0.350; p = 0.04) and time spent lying (s = 0.333; p = 0.05). There was a significant correlation between body mass index and predicted versus measured energy discrepancy (s = 0.41; p = 0.02), and this discrepancy was greater with higher body mass indices. Conclusion: There was no correlation between intake and either predicted or measured energy expenditure. Predicted and measured energy expenditures were strongly correlated yet differed for the individual patient. In patients with systemic sclerosis, where energy expenditure must be accurately assessed, it should be directly measured.

Impact of home parenteral nutrition on family members: A national multi-centre cross-sectional study.

BACKGROUND & AIMS: Home parenteral nutrition (HPN) is a necessary treatment for patients with chronic, type 3, intestinal failure (IF). HPN often requires lifestyle adaptations, which are likely to affect quality of life (QoL) in both patients and family members. The aim of this study was to identify the level of burden on family members who are involved with HPN care and to understand specific factors that contribute to any burden. METHODS: Patients over the age of 18 and receiving HPN were identified in IF clinics from multiple centres across the U.K. Eligible patients were asked to complete the parenteral nutrition impact questionnaire (PNIQ) to assess their QoL, while family members were asked to complete the burden scale for family caregivers (BSFC). Logistical regression was undertaken giving adjusted odds ratios (aOR). RESULTS: 678 participants completed the survey representing 339 patients with their appointed family member. Mean PNIQ score was 11.53 (S.D. 5.5), representing a moderate impact of HPN on patients' QoL. On the BSFC scale, 23% of family members reported a moderate to very severe subjective burden indicating an increased risk of psychosomatic symptoms. After adjusting for age and gender, predictors of BSFC included: family members self-reported health status using the EuroQol visual analogue scale (aOR 19.91, 95% CI 1.69, 233.99, p = 0.017) and support received by health services (aOR = 5.83, 95% CI = 1.93, 17.56, p = 0.002). Employment status, disease type, number of nights on HPN and length of time on HPN were not associated with BSFC. CONCLUSIONS: Family members with a poor health status or lack of support by health service were more likely to have a moderate to very severe subjective burden. Tailored support from the multi-professional IF team may reduce the burden experienced by family members of people dependent on HPN.

Small bowel feeding: do you pay the price for bypassing the stomach?

PURPOSE OF REVIEW: Hydration and nutritional support is a vital part of medical care, thus a clear understanding of the optimal approach is vital for medical professionals. This is a particularly pertinent issue for patients admitted to a critical care setting. This article aims to define the advantages and disadvantages of gastric and postpyloric feeding in the critical care setting, thus aiding decision-making for clinicians. RECENT FINDINGS: Within the article, the main themes covered are those relating to enteral feeding tube placement, the impact of enteral feeding route on ventilator-associated pneumonia, optimization of enteral tube feeding in critical care and the impact that a chosen route may have upon gastrointestinal function. SUMMARY: The value of enteral feeding in critical illness is proven beyond doubt and the simplest approach has long been 'if the gut works, use it'. If gastric feeding is not able to be established or is not tolerated then jejunal feeding should be considered as a preferable alternative to parenteral nutrition. Improving access to service or techniques for postpyloric tube placement would assist in optimizing nutritional support in the critical care setting.

Assessment of Intestinal Failure Associated Liver Disease according to different diagnostic criteria.

BACKGROUND & AIMS: Intestinal failure associated liver disease (IFALD) has been defined using numerous criteria; however the clinical relevance of these criteria has never been compared. We therefore aimed to evaluate the prevalence, incidence, evolution of IFALD diagnosed by different criteria and to assess any clinical features that may be associated with its occurrence. METHODS: A cross sectional (CS) and retrospective study were carried out on adults on home parenteral nutrition (HPN) for chronic intestinal failure (CIF) managed at a single center. Inclusion criteria at CS: age ≥18 years, benign disease. Collected data included: patient demographics, CIF and HPN characteristics, episodes of central venous catheter related bloodstream infection (CRBSI). IFALD was diagnosed by 9 criteria based on liver function tests and liver ultrasound (US) imaging. IFALD diagnoses were categorized as steatosis (2 criteria), cholestasis (3 criteria) or fibrosis (2 criteria) and unclassified (2 criteria). Prevalence was assessed at CS and at starting HPN (baseline, BS). Evolution was assessed as change of IFALD between BS and CS. Incidence was calculated as patients who developed IFALD from BS to CS. RESULTS: A total of 113 patients were included. At CS, IFALD prevalence range in each diagnostic categories was: cholestasis 5-15%; steatosis 17-43%; fibrosis 10-20%; unclassified 7-38%. A 28.5% of patients did not have IFALD according to any criteria. Two cholestasis criteria and one fibrosis criterion were significantly (P < 0.05) associated with a short bowel syndrome as the pathophysiological mechanism of CIF, HPN requirement and the number of CRBSI episodes. At BS, IFALD prevalence range was: cholestasis 13-40%; steatosis 27-90%; fibrosis 2-5%; unclassified 8-75%. The incidence range of IFALD was: cholestasis 0-7%; steatosis 0-39%; fibrosis 7-18%; unclassified 4-9%. IFALD steatosis diagnosed by US was the most frequent diagnosis at both CS prevalence and incidence assessments. Notably, IFALD criteria normalized in various percentages (2-70%), depending on the diagnostic categories, between BS and CS. CONCLUSIONS: This is the first study to systematically demonstrate that the frequency of IFALD varies greatly depending on diagnostic criteria used, confirming the need for a consensus definition to be used between different national and international IF units. IFALD can be present at HPN initiation but may resolve thereafter; further work is required to evaluate the factors associated with improvement.

The impact of home parenteral nutrition on the burden of disease including morbidity, mortality and rate of hospitalisations.

INTRODUCTION: Home parenteral nutrition (HPN) provides fluid and nutrition essential for the survival of patients with type 3 intestinal failure (IF). However, it is associated with complications and re-admission to hospital. This study aims to investigate the effect of HPN on mortality, morbidity and hospital re-admissions. METHOD: This is a retrospective cohort study. All patients newly dependent on HPN discharged over a 4-year period between 2011 and 2015 were included. Patients' characteristics, nutritional status and diagnosis were recorded, along with frequency and duration of HPN administration. Outcomes collected included hospital re-admissions, morbidity, catheter related blood stream infections (CRBSIs) and mortality. Regression analyses were performed to estimate the rate of different outcomes adjusted for prognostic factors. RESULTS: There were 210 patients included, 561 separate HPN prescriptions equating to 110,537 catheter days. Total number of deaths was 44 (0.398 deaths per 1000 catheter days). There were 196 re-admissions to hospital recorded for a total of 5594 days, 69 (33%) of these re-admissions were unplanned (2484 days in hospital). Principle reasons for unplanned re-admissions included: CRBSIs (n = 31, 45%); other sepsis (n = 10, 14.5%) and abdominal symptoms (n = 9, 13%). CRBSIs were recorded in 22 (10%) patients, equating to a rate of 0.199 per 1000 catheter days. Days per week on HPN increased the relative rate (RR) of time in hospital due to any reason or for unplanned readmissions, RR 1.50 (95% CI: 1.26, 1,78 p < 0.001) and RR 1.39 (95% CI: 1.10, 1.75 p = 0.006) respectively. However, there was no association between days per week on HPN and CRBSI occurrence. CONCLUSION: Unplanned re-admissions for patients with IF accounted for a third of all hospitalisations in those on HPN and the majority were due to CRBSI. The number of HPN dependent days per week was related to all-cause unplanned re-admissions, although not to CRBSI rate.

Home parenteral nutrition for people with inoperable malignant bowel obstruction.

BACKGROUND: People with advanced ovarian or gastrointestinal cancer may develop malignant bowel obstruction (MBO). They are able to tolerate limited, if any, oral or enteral (via a tube directly into the gut) nutrition. Parenteral nutrition (PN) is the provision of macronutrients, micronutrients, electrolytes and fluid infused as an intravenous solution and provides a method for these people to receive nutrients. There are clinical and ethical arguments for and against the administration of PN to people receiving palliative care. OBJECTIVES: To assess the effectiveness of home parenteral nutrition (HPN) in improving survival and quality of life in people with inoperable MBO. SEARCH METHODS: We searched the following electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 1), MEDLINE (Ovid), Embase (Ovid), BNI, CINAHL, Web of Science and NHS Economic Evaluation and Health Technology Assessment up to January 2018, ClinicalTrials.gov (http://clinicaltrials.gov/) and in the World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP) search portal (http://apps.who.int/trialsearch/). In addition, we handsearched included studies and used the 'Similar articles' feature on PubMed for included articles. SELECTION CRITERIA: We included any studies with more than five participants investigating HPN in people over 16 years of age with inoperable MBO. DATA COLLECTION AND ANALYSIS: We extracted the data and assessed risk of bias for each study. We entered data into Review Manager 5 and used GRADEpro to assess the quality of the evidence. MAIN RESULTS: We included 13 studies with a total of 721 participants in the review. The studies were observational, 12 studies had only one relevant treatment arm and no control and for the one study with a control arm, very few details were given. The risk of bias was high and the certainty of evidence was graded as very low for all outcomes. Due to heterogeneity of data, meta-analysis was not performed and therefore the data were synthesised via a narrative summary.The evidence for benefit derived from PN was very low for survival and quality of life. All the studies measured overall survival and 636 (88%) of participants were deceased at the end of the study. However there were varying definitions of overall survival that yielded median survival intervals between 15 to 155 days (range three to 1278 days). Three studies used validated measures of quality of life. The results from assessment of quality of life were equivocal; one study reported improvements up until three months and two studies reported approximately similar numbers of participants with improvements and deterioration. Different quality of life scales were used in each of the studies and quality of life was measured at different time points. Due to the very low certainty of the evidence, we are very uncertain about the adverse events related to PN use. Adverse events were measured by nine studies and data for individual participants could be extracted from eight studies. This revealed that 32 of 260 (12%) patients developed a central venous catheter infection or were hospitalised because of complications related to PN. AUTHORS' CONCLUSIONS: We are very uncertain whether HPN improves survival or quality of life in people with MBO as the certainty of evidence was very low for both outcomes. As the evidence base is limited and at high risk of bias, further higher-quality prospective studies are required.

The active problem solving of patients dependent on home parenteral nutrition: A qualitative analysis.

BACKGROUND & AIMS: People with chronic, type 3, intestinal failure often require long-term home parenteral nutrition (HPN). People receiving HPN have frequent interactions with their healthcare, due to the need for close monitoring and due to recurrent hospital admissions. Individuals' responses to, and interactions with, their health care service provides are poorly described. We conducted a service evaluation to explore people's experiences of HPN-related healthcare interactions in order to identify how service providers can best meet the individualised needs of patients. METHODS: We interviewed ten people receiving HPN. The participants were asked about their healthcare interactions related to HPN. The data were analysed using a qualitative research method known as interpretive phenomenological analysis. This analytical approach is concerned with the meaning that people ascribe to particular events, in this case their HPN-related healthcare interactions. RESULTS: The participants in this study described a range of psychosocial problems related to their HPN healthcare interactions, including reliance, risk and restrictions. Participants' solutions to these problems included adaptation of their routine, self-guardianship and passivity. Sometimes, these solutions generated secondary problems of their own, including concerns with resource use, negative healthcare interactions and conflicts of responsibility. A range of contextual factors influenced how participants interpreted their healthcare interactions and the solutions available to them. These contextual factors included continuity of healthcare professionals, the attitude of staff, and information and knowledge about HPN. CONCLUSIONS: By attending to the individual meaning ascribed to healthcare events, and the contextual factors that surround these events, we have been able to better understand the decisions made by patients dependent on HPN. This suggests that healthcare professionals may also better understand their patients' decision making by attending to the individual meaning that patients ascribe to healthcare events and to contextual factors. We propose a model to describe the process of problem -> resolution -> problem in which participants are actively engaged.