Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort Study

Debra Jones, Simon Lal, Chloe French, Anne Marie Sowerbutts, Matthew Gittins, Simon Gabe, Diane Brundrett, Alison Culkin, Chris Calvert, Beth Thompson, Sheldon C Cooper, Jane Fletcher, Clare Donnellan, Alastair Forbes, Ching Lam, Shellie Radford, Christopher G Mountford, Daniel Rogers, Rebecca Muggridge, Lisa SharkeyPenny Neild, Carolyn Wheatley, Philip Stevens, Sorrel Burden

Research output: Contribution to journalArticlepeer-review

Abstract

Home parenteral support (HPS) is an essential but potentially burdensome treatment that can affect quality of life (QoL). The aims of this longitudinal study were to understand whether any changes in HPS over time were associated with QoL. The Parenteral Nutrition Impact Questionnaire (PNIQ) was used, and data were collected on HPS prescribed at three time points. Data were analysed using multi-level mixed regression models presented as effect size and were adjusted for confounders. Study recruited 572 participants from 15 sites. Of these, 201 and 145 completed surveys at second and third time-points, respectively. PNIQ score was out of 20 with a higher score indicating poorer QoL. Any reduction in HPS infusions per week was associated with an improved PNIQ score of −1.10 (95% CI −2.17, −0.02) unadjusted and −1.34 (95% CI −2.45, −0.24) adjusted. Per day change to the number of infusions per week was associated with a change in the PNIQ score of 0.32 (95% CI −0.15, 0.80) unadjusted and 0.34 (95% CI −0.17, 0.85) adjusted. This is the largest national study to demonstrate improvements in QoL associated with HPS reduction over time using an HPS-specific and patient-centric tool, adding unique data for use of therapies in intestinal failure.
Original languageEnglish
Article number622
JournalNutrients
Volume15
Issue number3
Early online date25 Jan 2023
DOIs
Publication statusPublished - 1 Feb 2023

Keywords

  • Home parenteral nutrition
  • Home parenteral support
  • Quality of life
  • pateints-reported outcomes
  • longitudinal study
  • parenteral nutrition impact questionnaire (PNIQ)

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