Impact of long-term HPN on daily life in adults

Summary Background and Aims: Home parenteral nutrition (HPN) is a therapythat changes life radically and often means lifelong dependence on parenteralfeeding. The aim of this study was to gain insight into problems experienced by adultpatients who were dependent on long-term HPN.Methods: A survey was performed on all patients at the ambulatory care clinics oftwo university centres. We used two techniques: written questionnaires andinterviews. The questionnaires addressed fatigue (CIS), quality of sleep, anxiety,depression (BDI), social impairment (subscale SIP68), and sexual functioning. Datawere analysed descriptively. Structured interviews inquired about the negativeinfluence of HPN dependence on daily life. These data were quantified by contentanalysis.Results: The response rate was 76% (n ¼ 48). Questionnaire results: all therespondents had multiple physical symptoms, which they attributed to theunderlying disease. Furthermore, severe fatigue (63%), sleeping disorders, (severe)depression (65%), social impairment (55%), and sexual disorders (33%) were present.Quality of life (QoL) correlated with fatigue, sleeping disorders, anxiety, depression,and social impairment (Po0:02). Interview results: psychosocial problems were themain complaints in daily life due to HPN dependence, e.g. negative changes inmoods and feelings (including anxiety), lack of freedom, limitations in social life andbeing dependent.Conclusions: Although many somatic symptoms were present, HPN-dependentpatients reported primarily psychosocial problems in daily life. To improve QoL, HPNteams should assess somatic as well as psychosocial aspects standard. Given thelarge proportion of patients with depressive disorders, therapies such as antidepressantmedication, psychosocial support and cognitive training, should beoffered.