Quality of life on home parenteral nutrition
Research type
Research Study
Full title
An observational study of patients on home parenteral support to determine its effect on quality of life and sleep and the impact of psychological comorbidities, eating patterns, gastrointestinal symptom burden and resilience.
IRAS ID
349116
Contact name
Alex Ford
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
9 years, 11 months, 31 days
Research summary
Intestinal failure is a rare condition characterized by the inability of the gut to absorb sufficient nutrients and/or fluids and electrolytes to maintain health and such these patients require intravenous (parenteral) supplementation. When this is required long term patients are established on home parenteral support/nutrition (HPN).
HPN is a life-saving but invasive and time-intensive treatment with and as such places significant limitations on patients’ lives, with major psychosocial and financial consequences for them and their families. HPN entails regular nursing visits and lengthy parenteral nutrition infusions in which patients can be given infusions for usually up 12–14 hours overnight, often disturbing sleep and limiting independence. There are numerous validated specific tools used to assess quality of life.
HPN-dependent patients have higher rates of depression and anxiety than the general population, and many have fatigue and persisting symptoms from their underlying condition. Poorer quality of life is associated with a very short bowel length (<50 cm) and the requirement for an increased frequency of parenteral nutrition. Quality of life improves after the first 3–6 months on HPN and with a reduction in HPN requirements,
This study aims to look at a number of factors affecting patient’s daily life on HPN including sleep, psychological comorbidities, resilience, gastrointestinal symptoms, disordered eating and quality of life. We will do this by administering questionnaires to all current and new patients and then following up new patients at 12-month intervals to see if/how these factors change over time.
Our study seeks to evaluating these factors' influence on HPN patients and monitor how these change over time.REC name
London - Surrey Research Ethics Committee
REC reference
25/PR/1240
Date of REC Opinion
10 Oct 2025
REC opinion
Further Information Favourable Opinion