How good is quality-of-life for children receiving home parenteral nutrition? – A pilot study. (February 2019)

• Record Type: Journal Article
• Authors: Tran, Léa Chantal; Lazonby, Gill; Morello, Remy; Pham, Dominique; Ellis, Donna; Goldthorpe, Jenny; Iglesias, Natalia; Steele, Julie; Zamvar, Veena; Puntis, John William Lambert; Vora, Rakesh
• Is Part Of: Clinical nutrition ESPEN. Volume 29(2019)
• Page Start: 119
• Page End: 124
• Publication Date: 2019-02
• Subjects: Home parenteral nutrition -- Quality-of-Life -- Intestinal failure -- Short bowel syndrome -- Nutrition team; CVC Central venous catheter -- HPN Home parenteral nutrition -- IF Intestinal failure -- PN Parenteral nutrition -- QOL Quality-of-life; Nutritionally induced diseases -- Periodicals; Metabolism -- Disorders -- Periodicals; 616.39005
• DOI: 10.1016/j.clnesp.2018.11.009
• Languages: English
• ISSNs: 2405-4577

Abstract

Summary: Background & aims: 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. Methods: 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. Results: 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. Conclusions: 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. Graphical abstract: Highlights: Baxter's HPN-QOL tool has been adapted for paediatric patients and used to assess QOL. Overall, children on home parenteral nutrition have a good quality-of-life. Improved social care may be of particular value for these families.