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》

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》

An international study of the quality of life of adult patients treated with home parenteral nutrition.

Home parenteral nutrition-quality of life (HPN-QOL©) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL© in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. Patients (n = 699) from 14 countries completed the HPN-QOL©. The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL© in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. The HPN-QOL©, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research.

Baxter JP ，Fayers PM ，Bozzetti F ，Kelly D ，Joly F ，Wanten G ，Jonkers C ，Cuerda C ，van Gossum A ，Klek S ，Boudreault MF ，Gilbert A ，Jobin M ，Staun M ，Gillanders L ，Forbes A ，O'Callaghan M ，Faedo CM ，Brunelli C ，Mariani L ，Pironi L ，Home Artificial Nutrition and Chronic Intestinal Failure Special Interest Group of the European Society for Clinical Nutrition and Metabolism (ESPEN) ... -  《-》

Health-related quality of life, anxiety, depression and distress of mothers and fathers of children on Home parenteral nutrition.

Parents of children with intestinal failure, dependent on Home Parenteral Nutrition (HPN), may experience psychosocial problems due to the illness and intensive treatment of their child. Literature concerning psychosocial problems is scarce. Therefore, we aimed to investigate Health-Related Quality of Life (HRQOL), levels of anxiety, depression, distress and everyday problems of these mothers and fathers. A multicenter study was conducted among 37 mothers and 25 fathers of 37 children on HPN (response-rate 37/49 = 76%, mean age children = 5.1 years, SD = 4.6). Parents completed three questionnaires to measure different outcomes on the KLIK website (www.hetklikt.nu): the TNO-AZL QOL Questionnaire (TAAQOL) to measure HRQOL, the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression, and the Distress Thermometer for Parents (DT-P) to measure distress. Scores were compared to Dutch reference mothers and fathers using Mann-Whitney U-tests. No differences were found in HRQOL, measured by the TAAQOL, between HPN parents compared to the reference groups, except for the subscale 'depressive emotions' for mothers (p = .01) and 'daily activities' for fathers (p = .04). HPN mothers reported higher levels of depression compared to reference mothers (p = .001). In addition, HPN mothers and fathers reported higher levels of distress than reference mothers (p = .001) and fathers (p = .03). HPN mothers reported significantly more problems in the practical, emotional, cognitive and parenting domains, fathers in the social, emotional and parenting domains. On HRQOL, anxiety and depression, HPN parents generally did not show much differences compared to reference parents. However, when asked about parental distress and everyday problems, HPN treatment of their child seems highly stressful for some parents and influences daily functioning. Therefore, structural screening for parental psychosocial problems in clinical practice, e.g. using the DT-P, is necessary in order to improve the well-being of both these parents and their children dependent on HPN.

van Oers HA ，Haverman L ，Olieman JF ，Neelis EG ，Jonkers-Schuitema CF ，Grootenhuis MA ，Tabbers MM ... -  《-》

Quality of life in adult home parenteral nutrition patients.

Winkler MF 《JOURNAL OF PARENTERAL AND ENTERAL NUTRITION》