Abstract
Background
The most common cause of intestinal failure (IF) is Crohn’s disease (CD). The definition of IF is ‘the reduction of gut function below the minimum necessary for the absorption of macronutrients and/or water and electrolytes, such that intravenous supplementation is required to maintain health and/or growth’. It is a result of the most severe phenotype of CD, where an individual can no longer obtain sufficient nutrients and fluids from their gut to sustain life without supplementation in the form of parenteral nutrition (PN) or intravenous fluids. Home PN (HPN) allows people to receive infusion at home and increases survival rates (65% after 6 years). Whilst HPN improves length of life, studies have demonstrated this treatment can severely negatively affect an individuals’ quality of life (QoL) and employment. The aim of this systematic review was to identify factors affecting QoL in people with IF.
Methods
A search of databases MEDLINE, PubMed, PsycINFO, Web of Science, Global Health, and Scopus was conducted in July 2019. Search terms included ‘Crohn’s disease’, ‘short bowel syndrome’, ‘intestinal failure’, ‘quality of life’, and ‘health-related quality of life’. Titles and abstracts were screened by one reviewer. Any uncertainties about inclusion of the papers were discussed with two reviewers. Full texts were screened by 3 reviewers. Quantitative studies that measured QoL as an outcome in people with IF were included.
Results
Nineteen studies including a total of 924 participants met the inclusion criteria. Six key themes of factors affecting QoL were identified: (1) Practicalities of IF and HPN, e.g. sleep disturbances from the noise of the pump; managing a high output stoma. (2) Impact of medical interventions, e.g. blood tests. (3) Social impact/physical activity/personal relationships, e.g. restricted ability to travel, socialise and eat with friends. (4) Personal and sexual impact, e.g. lack of sexual desire. (5) Impact of symptoms, e.g. fatigue. (6) Patient characteristics, e.g. age. Some studies also reported positive effects on health (such as more energy), improved symptoms and QoL with HPN, especially for those who had been very unwell previously.
Conclusion
People with IF often have poor QoL that is affected by many factors, from their symptoms to practical aspects of HPN. However, themes related to the ‘social’ and ‘personal’ impact of IF dominated in the literature. While there is considerable evidence on what affects QoL in people with IF, there appears to very little research on attempting to improve QoL in this patient group.
Determinants of quality of life and psychosocial adjustment to pediatric inflammatory bowel disease: A systematic review focused on Crohn's disease
