Patients with type 3 intestinal failure are completely reliant on artificial feeding and often manage this at home; home parenteral nutrition (HPN). HPN therapy is life saving for these patients. The Parenteral Nutrition Impact Questionnaire (PNIQ) is a proven tool for measuring quality of life when receiving HPN. This study will recruit HPN patients across the United Kingdom (UK) and ask them to complete the PNIQ survey at several different time points. This will assess the impact of HPN over time. Family members involved in the participants HPN care will also be asked to complete a carer burden survey (at one time point) to assess the impact of HPN on carers.
Providing a person with food through a vein is known as parenteral nutrition (PN) or artificial tube feeding. This process is used when nutrients from food can't be taken in by the intestine (intestinal failure). Patients with type 3 intestinal failure are completely reliant on artificial feeding and often manage this at home; home parenteral nutrition (HPN). HPN therapy is life saving for these patients. It is important to assess patients quality of life and their own reported effects of the HPN. The Parenteral Nutrition Impact Questionnaire (PNIQ) is a proven tool for measuring quality of life when receiving HPN. A recent study involving the use of the PNIQ in multiple hospitals in the UK, showed that those on fewer nights of HPN had better quality of life than those on more nights of HPN. Whilst this was useful for looking at quality of life at one time point, it is now important to assess change in quality life over time and any impact on family members quality of life. This study will recruit HPN patients across the UK and ask them to complete the PNIQ survey at several different time points. This will assess the impact of HPN over time. Family members involved in the participants HPN care will also be asked to complete a carer burden survey (at one time point) to assess the impact of HPN on carers. The study is being funded by Shire Pharmaceuticals Ltd.
Study Type
OBSERVATIONAL
Enrollment
912
Impact of parenteral nutrition on patient quality of life over time and impact on carer burden
University of Manchester
Manchester, United Kingdom
Patient reported outcomes
Change in Patient reported outcomes (PNIQ score) in people receiving HPN. Score from 0-20, with 0 being high Quality of life and 20 being low quality of life.
Time frame: Baseline, five, 10 and 15 months post entry
Carer burden
Caregiver burden (carer burden survey) in family members/close friends providing HPN healthcare to a patient receiving HPN. Score from 0-84, with 0 being no symptoms and 84 being very severe symptoms
Time frame: Baseline
Length of time receiving HPN
Amount of time the patient has been receiving HPN (months/years)
Time frame: Baseline, five, 10 and 15 months post entry
Change in number of weekly HPN infusions
How often the patient is connected to an infusion each week (numerical)
Time frame: Baseline, five, 10 and 15 months post entry
Change in number of hours connected to HPN infusions each night
How many hours the patient is connected to an infusion each night (hours)
Time frame: Baseline, five, 10 and 15 months post entry
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