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 Sharkey; Penny Neild; Carolyn Wheatley; Philip Stevens; Sorrel Burden

doi:10.3390/nu15030622

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 journal › Article › peer-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 language	English
Article number	622
Journal	Nutrients
Volume	15
Issue number	3
Early online date	25 Jan 2023
DOIs	https://doi.org/10.3390/nu15030622
Publication status	Published - 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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10.3390/nu15030622Licence: CC BY

HARG: Healthy Ageing Research Group
Todd, C. (Researcher), Stanmore, E. (Researcher), Hall, A. (Researcher), Littlewood, A. (Researcher), Davies, A. (Researcher), Sowerbutts, A. M. (Researcher), Maharani, A. (Researcher), Dowding, D. (Researcher), Jones, D. (Researcher), Boulton, L. (Researcher), Cruickshank, F. (Researcher), Hawley-Hague, H. (Researcher), Brooks, J. (Researcher), Griffiths, J. (Researcher), Spencer, K. (Researcher), Fisher, K. (Researcher), Mcgarrigle, L. (Researcher), Cook, M. (Researcher), Pendleton, N. (Researcher), Stanford, P. (Researcher), Lasrado, R. (Researcher), Ahmed, S. (Researcher), Clinch, S. (Researcher), Burden, S. (Researcher), Gluchowski, A. (Researcher), Ford, C. (PGR student), Al Zadjali, F. (PGR student), Sremanakova, J. (PGR student), Fisher, K. (PGR student), Zougar, M. (PGR student), Almohaisen, N. (PGR student), Yang, Y. (PGR student), Mckenzie, Y. (PGR student), O'Connor, S. (Researcher), Aminu, A. (Researcher), Bosco, A. (Researcher), Parchment, A. (Researcher), Money, A. (Researcher), Mackenzie, A. (Researcher), Karki, B. (PGR student), Poku, B. (Researcher), Eost-Telling, C. (Researcher), French, C. (PGR student), Harris, D. (PGR student), Damisa, E. (Researcher), Vardy, E. (Researcher), Hakeem, F. (Researcher), Donald, G. (Researcher), Bilsborough, H. (PGR student), Gangannagaripalli, J. (Researcher), Astbury, J. (Researcher), Garsden, J. (Researcher), Ventre, J. (Researcher), Aguilera Munoz, J. (Researcher), Allsopp, K. (Researcher), Mcgarrigle, L. (Researcher), Mott, L. (PGR student), Huang, L. (Researcher), Tomkow, L. (Researcher), Ahmed, N. (Researcher), Fox, S. (Researcher), Mcdermott, J. (Researcher), Hoodless, S. (Researcher), Dlima, S. (PGR student), Shi, Y. (PGR student) & Tang, Y. (PGR student)
Project: Research

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Jones, D., Lal, S., French, C., Sowerbutts, A. M., Gittins, M., Gabe, S., Brundrett, D., Culkin, A., Calvert, C., Thompson, B., Cooper, S. C., Fletcher, J., Donnellan, C., Forbes, A., Lam, C., Radford, S., Mountford, C. G., Rogers, D., Muggridge, R., ... Burden, S. (2023). 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. Nutrients, 15(3), Article 622. https://doi.org/10.3390/nu15030622

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title = "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",

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.",

keywords = "Home parenteral nutrition, Home parenteral support, Quality of life, pateints-reported outcomes, longitudinal study, parenteral nutrition impact questionnaire (PNIQ)",

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

year = "2023",

month = feb,

day = "1",

doi = "10.3390/nu15030622",

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volume = "15",

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Jones, D , Lal, S , French, C , Sowerbutts, AM , Gittins, M, Gabe, S, Brundrett, D, Culkin, A, Calvert, C, Thompson, B, Cooper, SC, Fletcher, J, Donnellan, C, Forbes, A, Lam, C, Radford, S, Mountford, CG, Rogers, D, Muggridge, R, Sharkey, L, Neild, P, Wheatley, C, Stevens, P & Burden, S 2023, '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', Nutrients, vol. 15, no. 3, 622. https://doi.org/10.3390/nu15030622

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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

SN - 2072-6643

VL - 15

JO - Nutrients

JF - Nutrients

IS - 3

M1 - 622

ER -

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

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Keywords

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HARG: Healthy Ageing Research Group

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