CompletedNot Applicable

Longitudinal Evaluation of the Impact of Parenteral Nutrition

United Kingdom912 participantsStarted 2020-03-02

Plain-language summary

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.

Who can participate

Age range18 Years

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: Patients: * All people in receipt of HPN including new patients * Those 18 years and over. Carers: * A family member or person involved in the healthcare of the participating patient. (We will ask patients to nominate their closest family member who in their opinion is potentially most effected by the parenteral feeding.) * Those 18 years and over. Exclusion Criteria: Patients: * Cannot give informed consent * Cannot read or write in English. Carers: • Family members not directly involved with caring for participants

What they're measuring

Patient reported outcomes

Timeframe: Baseline, five, 10 and 15 months post entry

Trial details

NCT IDNCT04234490

SponsorUniversity of Manchester

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2022-03-23

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