Background and aims: This study defines and quantifies longitudinal changes in quality of life (QoL) at the time of first discharge home on home parenteral nutrition (HPN) and over the first year.
Methods: Results were compared in patients in standard contact with a nutrition nurse specialist by telephone, with results of those in contact via telemedicine in a randomised controlled trial. Participants were recruited from nine UK HPN centres. Patients were randomised to receive telemedicine upon initial discharge or after 1 year. The SF36 was the principal instrument chosen to determine QoL throughout the year on three predetermined occasions. EQ5D and hospital anxiety and depression scores were also recorded.
Results: Thirty participants were recruited to the study from March 2001 to June 2003. In all domains, QoL scores were significantly lower than normative data at discharge. QoL scores significantly improved over the first 6 months in physical functioning, physical role (RP), vitality (VT), social functioning (SF), emotional-role (RE) domains, and mental component summary (MCS). At 6 months RE, mental health (MH) and MCS were no longer significantly lower than normative data. There was no significant change in bodily pain (BP), general health (GH), MH, and physical component summary (PCS). Opiate use significantly reduced SF36 domains RP, BP, VT, SF, MH, and MCS at 6 months and was associated with more subsequent inpatient episodes and central line reinsertions. Patients with an acute onset of intestinal failure had less pain and better GH scores at 6 months, and had less inpatient episodes after discharge than patients with a more chronic onset. Telemedicine had no impact on QoL or subsequent clinical outcome.
Conclusions: Aspects of QoL improve over the first 6 months of HPN. Opiate use and chronic diagnosis have a negative impact on some elements of QoL and clinical outcome variables.