Burden of Care in Intestinal Failure and Intestinal Transplantation

Abstract

Introduction: Home Parenteral Nutrition (HPN) remains the first line treatment of Intestinal Failure (IF). The inherent risks associated with PN may mean that Intestinal Transplantation (ITx) is the only option available for these patients. The literature demonstrates that HPN is a significant burden of care for care givers (1). Experience within paediatric centres highlights that this remains following transplantation (ITx). There is a recognised gap between the level of need and the support provided within the community. Aim: To gain a greater understanding of the burden of care for care givers by identifying the long term demands in children with IF or following ITx. To understand the needs of both groups and effectively coordinate the care and support at home. Methods: Questionnaires were distributed to all of the familes of children within the HPN service of a tertiary centre and those under follow up of a paediatric ITx unit. Questions centred on factors such as sleep disturbance, devices and school attendance. Results: A total of 28/28 patients responded (18 HPN and 10 post ITx) with a median age of 7 years (1-15). Of the 18 HPN patients, 4 of those required additional intravenous fluids (IV) and 6 of those were having enteral feeds. Of the 10 post ITx patients, 1 required PN, 1 required IV fluids and 2 were receiving enteral feeds. There is a reduction in the need for devices following ITx however 40% still had an ileostomy. None of the HPN cohort slept through the night, waking a median of 4 times overight (1-10). Only three of the ITx patients slept through the night, waking a median of 2 times (0-7). There is a difference between the number of children toilet trained in the HPN cohort (11/18) compared to the post ITx patients (8/10). Conclusion: Burden of care improves post ITx, but there is a continued need for care. Both cohorts have overnight sleep distrubances. School attendance was higher than anticipated; however there are care needs required at school. Hospital attendance was frequent in both cohorts. These data can be used as a foundation to develop a burden of care tool specific to Intestinal Failure and Intestinal Transplantation. Reference: 1. Zamvar, V, Puntis, J, Gupte, G, Lazonby, G, Holden, C, Sexton, E, Bunford, C, Protheroe, S, & Beath, S 2014, 'Social circumstances and medical complications in children with intestinal failure', Archives Of Disease In Childhood, 99, 4, pp. 336–341.