Background: Home parenteral nutrition (HPN) is life-sustaining therapy in some disease states. Patients, however, report alterations in physical, psychologic, and social function that negatively affect perceived quality of life (QOL). Many generic tools have been used to evaluate QOL during HPN, but there is no gold standard measurement. QOL improvement can only result from identifying and addressing patient-specific problems. The purpose of this study was to identify the tools used by others to measure QOL in adults receiving long-term HPN and to identify factors that affect QOL in this population.
Methods: An electronic search of CINAHL, MEDLINE, and Health and Psychosocial Instruments databases was conducted to identify studies of HPN and QOL in adults.
Results: Thirty-four publications on HPN and QOL were identified. Twenty-four studies of HPN and QOL were included in this review; 10 papers were review articles or editorials. QOL was worse in HPN patients compared with healthy populations. Impaired QOL was associated with decreased physical, psychologic, and social function. Depression, drug dependency, sleep disturbance, frequent urination, fear of therapy-related complications, and inability to eat negatively affected QOL.
Conclusions: Use of different QOL instruments, scales, and lifestyle domains limited comparison among studies. QOL is poor in patients receiving HPN and worse in the presence of depression and narcotic dependency. The technical aspects of HPN administration interfere with routine activities. It is difficult to determine whether HPN itself or the impact of the disease affected QOL. Development of an HPN-specific QOL tool may help in this differentiation.