ABSTRACT
BACKGROUND AND AIMS: Home parenteral nutrition (HPN) is a therapy that changes life radically and often means lifelong dependence on parenteral feeding. The aim of this study was to gain insight into problems experienced by adult patients who were dependent on long-term HPN. METHODS: A survey was performed on all patients at the ambulatory care clinics of two university centres. We used two techniques: written questionnaires and interviews. The questionnaires addressed fatigue (CIS), quality of sleep, anxiety, depression (BDI), social impairment (subscale SIP68), and sexual functioning. Data were analysed descriptively. Structured interviews inquired about the negative influence of HPN dependence on daily life. These data were quantified by content analysis. RESULTS: The response rate was 76% (n = 48). Questionnaire results: all the respondents had multiple physical symptoms, which they attributed to the underlying 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 (P<0.02). Interview results: psychosocial problems were the main complaints in daily life due to HPN dependence, e.g. negative changes in moods and feelings (including anxiety), lack of freedom, limitations in social life and being dependent. CONCLUSIONS: Although many somatic symptoms were present, HPN-dependent patients reported primarily psychosocial problems in daily life. To improve QoL, HPN teams should assess somatic as well as psychosocial aspects standard. Given the large proportion of patients with depressive disorders, therapies such as anti-depressant medication, psychosocial support and cognitive training, should be offered.
