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 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.