Randomized clinical trial: Long-term Staphylococcus aureus decolonization in patients on home parenteral nutrition.

BACKGROUND & AIMS: Staphylococcus aureus decolonization has proven successful in prevention of S. aureus infections and is a key strategy to maintain venous access and avoid hospitalization in patients receiving home parenteral nutrition (HPN). We aimed to determine the most effective and safe long-term S. aureus decolonization regimen. METHODS: A randomized, open-label, multicenter clinical trial was conducted. Adult intestinal failure patients with HPN support and carrying S. aureus were randomly assigned to a 'continuous suppression' (CS) strategy, a repeated chronic topical antibiotic treatment or a 'search and destroy' (SD) strategy, a short and systemic antibiotic treatment. Primary outcome was the proportion of patients in whom S. aureus was totally eradicated during a 1-year period. Secondary outcomes included risk factors for decolonization failure and S. aureus infections, antimicrobial resistance, adverse events, patient compliance and cost-effectivity. RESULTS: 63 participants were included (CS 31; SD 32). The mean 1-year S. aureus decolonization rate was 61% (95% CI 44, 75) for the CS group and 39% (95% CI 25, 56) for the SD group with an OR of 2.38 (95% CI 0.92, 6.11, P = 0.07). More adverse effects occurred in the SD group (P = 0.01). Predictors for eradication failure were a S. aureus positive caregiver and presence of a (gastro)enterostomy. CONCLUSION: We did not demonstrate an increased efficacy of a short and systemic S. aureus decolonization strategy over a continuous topical suppression treatment. The latter may be the best option for HPN patients as it achieved a higher long-term decolonization rate and was well-tolerated (NCT03173053).

Identifying patients with benign chronic intestinal failure on home parenteral nutrition in whom a psychological support intervention may improve quality of life.

RATIONALE: Home parenteral nutrition (HPN) is the ultimate treatment for patients who suffering from chronic intestinal failure (CIF). We tested the feasibility and effects of Mindfulness Based Cognitive Therapy (MBCT) in patients on HPN. Because of the high dropout rate, however, we were next urged to develop and test a web-based coaching program (web-based MBCT). The aim of the present study was to compare the effects of MBCT with this web-based MBCT. METHODS: A quasi-experimental pilot study was conducted in a tertiary referral center for CIF in the Netherlands to evaluate the feasibility of both a MBCT and the internet-based MBCT intervention. In 2016 we included 17 patients in the MBCT group. These patients followed MBCT training. End of 2016 an internet-based online MBCT program was constructed for which we invited 14 patients and their caregivers. RESULTS: In the MBCT 5 out of 17 patients (29%) completed their therapy. Patients attributed positive effects to their acquired mindfulness skills and reported a better QoL. In the internet-based mindfulness therapy group 2 out of 14 patients (14%) fulfilled the training sessions. Also, six caregivers started the training in this latter group and one caregiver fulfilled the training. CONCLUSION: The study suggests that both MBCT and the internet-based MBCT are no feasible strategies to decrease disease burden and improve QoL for CIF patients and their caregivers due to the intensity of these programs on one side and the experienced physical limitations on the other. The patients who fulfilled the program were positive and use MBCT in daily practice.

Evaluation of quality of life and caregiver burden in home parenteral nutrition patients: A cross sectional study.

BACKGROUND & AIMS: Home total parenteral nutrition (HPN) is indicated in long-term intestinal failure (IF) to maintain or improve the nutritional status, guarantee patient survival and improve quality of life (QoL). The patients "caregiver" is often an essential partner to help perform daily activities. The aim of this study was to compare QoL, experienced distress and (if present) caregiver burden for relatives in two distinct categories of IF patients, i.e. those with short bowel syndrome as compared to those suffering from intestinal dysmotility. METHODS: All HPN patients and their caregivers of our HPN population were invited for this study. Qol and distress were assessed using the validated HPN-Qol and the "Lastmeter" (distress thermometer) questionnaire (for HPN patients) or the Caregiver Strain Index (CSI) (for caregivers) for the short bowel and dysmotility groups as well as for the combination. RESULTS: During the year 2016 a total of 193 patients and their caregivers were invited. Fifty-six patients (37%) reported not to have a caregiver. Overall, 147 patients (76%) and 91 caregivers (63%) completed the questionnaires. The most common underlying conditions leading to IF were short bowel syndrome (SBS, 48%) and intestinal dysmotility disorders (42%). Both the SBS and the dysmotility group had a reasonable Qol (SBS 6 vs. dysmotility 5.8) but the experienced distress was significantly higher in the latter group (SBS 5 vs. dysmotility 7). The distress of the dysmotility group was mainly determined by fatigue, abdominal pain, immobility, inability to work/go to school, limited contact with friends, nausea and vomiting, bloating, abdominal pain, troubles with sleeping, dizziness, inability to eat, being cold, fatigue and decreased taste. The Qol of patients with SBS was not significantly affected by aspects associated with HPN. The caregiver of dysmotility patients experienced a higher burden when compared with the caregiver in the SBS group (strain 0-13, ≥7 reflect high burden), due to increased demands on time and perceived strain. CONCLUSIONS: Our results suggest that QoL of IF patients differ depending on the underlying disease, with the dysmotility group experiencing a higher burden when compared to short bowel patients. Also, in particular the burden that dysmotility patients experience with regard to eating, the presence of fatigue and abdominal pain significantly impacts their Qol. This study provides the first evaluation of perceived caregiver burden for relatives of patients with HPN. Here also the caregiver of dysmotility patients experienced a higher burden compared to caregivers of patients with SBS. These findings suggest that more focused care with attention to specific items within various groups (SBS, dysmotility) of the IF population is needed.