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》

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome.

Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN- and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL. Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

Winkler M ，Tappenden K 《-》

How good is quality-of-life for children receiving home parenteral nutrition? - A pilot study.

Children on home parenteral nutrition and their parents not only engage with complex nutritional issues but also have to manage difficult social and financial problems with social and clinical support that may not always meet their needs. Baxter's HPN-QOL questionnaire, assesses the QOL of adult patients treated with HPN, and has been developed rigorously using standard guidelines, measuring various dimensions of QOL. Our aim was to use this tool to explore how HPN influences the QOL of paediatric patients. The HPN-QOL questionnaire was modified to suit a paediatric HPN population. Data on demographics, aetiology of intestinal failure and duration of HPN were collected from a departmental database. Quality-of-Life grading of functional and symptom scales, HPN specific items and overall QOL Numerical Rating Scales were determined. Fourteen out of 17 families returned the completed questionnaires. QOL was significantly impaired by increased dependency regarding items of daily living such as eating, dressing, washing, and mobility, but was not affected in the domains of school attendance, general fatigue, pain and body image. There were no significant differences in QOL when patients with and without enterostomy were compared. Patients felt well supported by the hospital nutrition team in managing logistics related to HPN. QOL in HPN patients was not significantly affected by the medical aspects of care. This descriptive study highlights the need for further integration of medical and social care in order to support families of children receiving HPN as QOL was impaired in relation to activities of daily living and social functioning.

Tran LC ，Lazonby G ，Morello R ，Pham D ，Ellis D ，Goldthorpe J ，Iglesias N ，Steele J ，Zamvar V ，Puntis JWL ，Vora R ... -  《Clinical Nutrition ESPEN》

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 ... -  《-》