N30 Experience of living with intestinal failure: a systematic review of qualitative studies
W. Czuber-Dochan, Q. Liu, D. Roberts, P. Smith, C. Norton
King’s College London, Florence Nightingale Faculty of Nursing- Midwifery & Palliative Care, London, UK
Background
Intestinal failure (IF) affects about 2000 people with Crohn’s disease (CD) in the UK. It is a result of the most severe phenotype of CD where an individual can no longer obtain sufficient nutrients from their gut to sustain life without supplementation in the form of parenteral nutrition (PN) or fluids intravenously and most have a stoma. Many cannot tolerate any food and very little drink by mouth. Such individuals usually need a permanent central venous catheter and must have an infusion of PN overnight, all or most nights in the week, often for 10–12 h at the time. Complications such as infection or thrombosis of the central line are a constant risk. This treatment must often continue for life. This systematic review aimed to explore the experience of people living with IF and the impact of the condition on their daily lives.
Methods
The following databases were searched in July 2019: MEDLINE, PubMed, PsychINFO, Web of Science and Global Health Scopus. Search terms included ‘intestinal failure’, ‘short bowel syndrome’, ‘quality of life’ (QoL) and terms relating to psychosocial functioning. English language articles were retrieved and screened by one reviewer at title and abstract, ratified by a second reviewer. The resulting articles selected at abstract were screened at full text by 3 reviewers.
Results
Eight papers, based on 7 studies, were included with a total of 97 participants: 36 male, 61 female. The age range of adults was 28–83. One study was conducted in children, with age range of 7–17. In 5 studies, all participants were on HPN. In 2 studies, 4/6 and 7/10 participants were on HPN respectively. There was one overarching theme: ‘Complications and challenges of living with IF’, with three specific themes that reflect the patients’ experience: (1) ‘Eating for survival’ encompasses the perpetual need to eat in order to make up for the large quantities of nutrients lost due to malabsorption (2) ‘Life with HPN: nutritional safety net at a price’ describes relief from the pressure to eat for survival but with drawbacks such as restrictions on social activities and risk of catheter line infections. (3) ‘Benefits and pitfalls of having a stoma’ relates to benefits of having a stoma, such as reduced frequency of toilet visits, and the accompanying inconvenience of leaks, high output and negative body image.
Conclusion
Living with IF has many challenges. Patients struggle with retaining enough nutrients and the physical and technical difficulties with having HPN and/or a stoma. The psychosocial well-being in these patients is affected by these challenges, as a result. Overall, QoL is poor and currently very little is being done to improve this.