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.