The impact of home parenteral nutrition on daily life—A review

Summary

Background

Total parenteral nutrition (TPN) is a lifesaving therapy in patients with severe intestinal failure that can be administered at home. However, patients have to face complex technological nutritional support issues at home, which will influence their personal life.

Objectives

This review aims to describe the implications of home parenteral nutrition (HPN) on the quality of life, as experienced by patients, as well as to describe the caregiver's reactions regarding these notions.

Search strategy

A systematic review of the literature published between 1965 and 2005 was conducted. Cinahl, Medline, and Psychlit databases were searched. Systematic data extraction and narrative data synthesis were performed.

Selection criteria

Papers were included if they described original research published in a peer reviewed journal, with a focus on adult patients on HPN and/or their family caregivers.

Data collection (and analysis)

A standardised record was used for data extraction.

Main results

A total of 26 studies were included. The quality of life reported by patients was moderate to good, but psychological problems, e.g. depression and anxiety, were common. Social life was disturbed due to the venous access device, the time schedule for HPN administration, the inability to have normal oral intake, gastrointestinal mobility problems, and physical complaints. Frequently mentioned somatic problems included fatigue, diarrhoea, pain, polyuria during infusion and sleep disruption.

Despite social restrictions, depression and fatigue, caregivers reported their overall QoL as similar to the norms for healthy populations.

Conclusion

Patients on HPN meet a broad range of problems. Apart from the well-known metabolic and infectious complications, many of these are psychological or social in nature.

Introduction

Parenteral nutrition is a lifesaving therapy in patients with severe intestinal failure. Most frequently, this failure results from extensive resections of small bowel due to inflammatory bowel disease or mesenteric thrombosis, or it is caused by loss of function because of severe motility disorders.

Total parenteral nutrition (TPN) implies that a complete aqueous food formulation is administered intravenously. Generally, TPN is administered overnight for a period of 12 h. Patients feed two to seven times a week, depending on their remaining gut function. Importantly, these patients do not choose TPN out of their own free will, but it is usually the ultimate remaining option to maintain or improve their nutritional status.

In patients with prolonged intestinal failure, parenteral nutrition may be administered in the home setting. Home parenteral nutrition (HPN) is nowadays a commonly used procedure in many developed countries.¹ The patient population receiving HPN is small, but growing steadily.

Moving parenteral nutrition support from the hospital to the domestic setting results in a significant gain in quality of life.² However, patients have to face complex technological nutritional support issues at home, which will inevitably influence their personal life. HPN administration is a time consuming and intrusive procedure that requires many adjustments. Besides, the underlying disease that led to intestinal failure may also cause a variety of physical complaints, due to the presence of a stoma, altered body image, etc. These factors frequently impose restrictions on daily life regarding social, physical and psychological function. Understanding the difficulties that these patients experience is crucial in order to offer the right modalities of support. Besides, these notions may help patients as well as health care workers to anticipate to problems in the future.

The aim of the present study was to identify the implications of HPN on the quality of life (QoL), including somatic, psychological, and social aspects of daily life, as experienced by patients, as well as to describe the caregiver's reactions regarding these notions.