Male gender is associated with informal caregiver burden in patients with chronic intestinal failure treated with home parenteral nutrition.

Home parenteral nutrition (HPN) is the recommended treatment in patients with chronic intestinal failure (CIF). HPN is associated with a worsening of patients' quality of life and has a dramatic impact on personal and familial daily life. Little is known about the informal caregiver burden of patients receiving HPN. To assess informal caregiver burden and the factors associated with moderate-to-severe caregiver burden in patients treated with HPN. Informal caregivers of consecutive patients treated with HPN in a French nutrition referral center were invited to participate in a survey between January 2021 and June 2021. They had to fill out an anonymous standardized self-questionnaire evaluating burden by the Zarit Burden Interview (ZBI) and depression and anxiety symptoms by the Hospital Anxiety and Depression Scale (HADS) score since HPN introduction. Among the 87 HPN patients having informal caregivers, 53 (61%) completed the questionnaire. Thirty (57%) informal caregivers were women. The caregiver's median age was 62 years (IQR, 21.0). Twelve (22%) expressed moderate to severe burden (ZBI score, 41-88). In a multivariate analysis, the caregiver's male gender (odds ratio [OR], 16.45; 95% CI, 2.30-238.75; P = 0.014) and the number of simultaneous infusions per day >1 (OR, 9.92; 95% CI, 1.35-121.60; P = 0.0038) were associated with a moderate to severe burden. Twenty caregivers reported anxious and depressive symptoms with an elevated HADS score. In this prospective survey, a minority of informal caregivers of patients with CIF being treated with HPN expressed moderate to severe burden. The caregiver's male gender was associated with a higher burden in patients with CIF.

Castinel J ，Pellet G ，Laharie D ，Zerbib F ，Silvain C ，Wilsius E ，Kerlogot L ，Rivière P ，Poullenot F ... -  《-》

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

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. 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). 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. 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.

French C ，Lal S ，Jones D ，Sowerbutts AM ，Brundrett D ，Burch N ，Calvert C ，Cooper SC ，Donnellan C ，Forbes A ，Gabe S ，Lam C ，Major G ，Mountford CG ，Muggridge R ，Natarajan B ，Neild P ，Rogers D ，Sharkey L ，Thompson B ，Wheatley C ，Burden S ... -  《-》

The Anxiety Burden in Patients with Chronic Intestinal Failure on Long-Term Parenteral Nutrition and in Their Caregivers.

Santarpia L ，Orefice R ，Alfonsi L ，Marra M ，Contaldo F ，Pasanisi F ... -  《Nutrients》

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

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. 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. 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. 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.

Beurskens-Meijerink J ，Huisman-de Waal G ，Wanten G 《Clinical Nutrition ESPEN》

Poor Social Support and Unemployment Are Associated With Negative Affect in Home Parenteral Nutrition-Dependent Patients With Chronic Intestinal Failure.

Home parenteral nutrition (HPN) provides life-sustaining treatment for people with chronic intestinal failure (CIF). Poor quality of life is reported in association with the burden of HPN and the underlying condition leading to intestinal failure (IF). However, levels of negative affect (NA), incorporating anxiety and depression, have not been reported in CIF. This study examined the occurrence and risk factors for NA in a large CIF population using the validated Hospital Anxiety & Depression Scale (HADS) and Multidimensional Scale of Perceived Social Support (MSPSS) questionnaires. A survey pack including HADS and MSPSS were distributed to patients managed by a specialist IF center. Data from these measures were analyzed against factors including underlying disease, length of time receiving HPN, employment status, and demographics. Of 85 patients who completed this study, 56% had clinical levels of anxiety and/or depression. Linear regression analysis confirmed significant correlations between social support and HADS scores, with poorer perceived social support associated with higher levels of NA (-0.26 MSPSS + 33.24; R2 = 0.29; P < .0001). There were also significant associations between unemployment and higher anxiety (P = .004), depression (P = .008), and NA scores (P = .003). By contrast, there were no significant associations between patient age, duration of time receiving parenteral nutrition, pathophysiological mechanisms of CIF, and NA levels. Clinical anxiety and depression are common, affecting more than half of patients with CIF. Patients with poor social networks and those of working age who have ceased employment are particularly vulnerable and should be prioritized for psychological support because of their elevated risk.

Ablett J ，Vasant DH ，Taylor M ，Cawley C ，Lal S ... -  《-》