TY - JOUR
T1 - 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
AU - Jones, Debra
AU - Lal, Simon
AU - French, Chloe
AU - Sowerbutts, Anne Marie
AU - Gittins, Matthew
AU - Gabe, Simon
AU - Brundrett, Diane
AU - Culkin, Alison
AU - Calvert, Chris
AU - Thompson, Beth
AU - Cooper, Sheldon C
AU - Fletcher, Jane
AU - Donnellan, Clare
AU - Forbes, Alastair
AU - Lam, Ching
AU - Radford, Shellie
AU - Mountford, Christopher G
AU - Rogers, Daniel
AU - Muggridge, Rebecca
AU - Sharkey, Lisa
AU - Neild, Penny
AU - Wheatley, Carolyn
AU - Stevens, Philip
AU - Burden, Sorrel
PY - 2023/2/1
Y1 - 2023/2/1
N2 - 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.
AB - 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.
KW - Home parenteral nutrition
KW - Home parenteral support
KW - Quality of life
KW - pateints-reported outcomes
KW - longitudinal study
KW - parenteral nutrition impact questionnaire (PNIQ)
U2 - 10.3390/nu15030622
DO - 10.3390/nu15030622
M3 - Article
C2 - 36771328
VL - 15
JO - Nutrients
JF - Nutrients
SN - 2072-6643
IS - 3
M1 - 622
ER -