Quality of life in intestinal failure

Abstract

Aims/objectives: The objectives of this research were to investigate and compare aspects of Quality of Life (QoL) in adult patients who require HPN, in adult patients who have pseudo-obstruction, and in carers of, and children on, HPN. Methods: Demographic data, clinical parameters and current symptoms were collected and analysed. Generic QoL questionnaires were applied to the above groups. Results: HPN patients have significantly lower QoL than the rest of the UK population, report increased levels of bodily pain, anxiety and depression, a reduction in physical functioning, social functioning, general health, vitality and satisfactory levels of mental health and emotional functioning. Aspects of QoL improve over the first 6 months on HPN. Pseudo-obstruction has a negative impact on all aspects of QoL when compared to a normal population. A previous intestinal resection and opiate use had a negative impact on aspects of QoL. Carers of a child on HPN seek more social support and use more positive reappraisal coping strategies, more planful problem solving and less distancing than the controls and a higher level of psychiatric disorder is also seen. Children on HPN have a poorer functional status than those not on HPN, and there is a correlation between level of child dysfunction and parental general health. Families caring for a child on HPN function within normal and healthy parameters. Conclusions: Our studies indicate that the loss of intestinal function does have a negative impact on aspects of QoL but patients make adjustments to meet everyday requirements, even if it produces limitations with which these persons have to live by.