Needs-based quality of life in adults dependent on home parenteral nutrition.


Journal

Clinical nutrition (Edinburgh, Scotland)
ISSN: 1532-1983
Titre abrégé: Clin Nutr
Pays: England
ID NLM: 8309603

Informations de publication

Date de publication:
06 2019
Historique:
received: 28 03 2018
revised: 24 05 2018
accepted: 13 06 2018
entrez: 8 5 2019
pubmed: 8 5 2019
medline: 2 6 2020
Statut: ppublish

Résumé

Home parenteral nutrition (HPN) provides life sustaining treatment for people with chronic intestinal failure. Individuals may require HPN for months or years and are dependent on regular intravenous infusions, usually 12-14 h overnight between 1 and 7 days each week. This regime can have adverse impact on the life of people dependent on the treatment. The aim of this study was to establish mean values for the Parenteral Nutrition Impact Questionnaire (PNIQ) and to determine the effect of disease, frequency of infusions per week and patient characteristics on quality of life of patients fed HPN. The PNIQ was distributed to patients across nine UK HPN clinics. Data were analysed using linear regression, with PNIQ score as the dependent variable and potential confounders as independent variables. Unadjusted and adjusted models are presented. Higher PNIQ scores reflect poorer quality of life. Completed questionnaires were received from 466 people dependent on HPN. Mean PNIQ score was 11.04 (SD 5.79). A higher PNIQ score (effect size 0.52, CI 0.184 to 0.853) was recorded in those dependent on a higher frequency of HPN infusions per week. Respondents with cancer had a similar mean PNIQ score to those with inflammatory bowel disease (mean 10.82, SD 6.00 versus 11.04, SD 5.91). Those with surgical complications reported a poorer QoL (effect size 3.03, CI 0.642 to 5.418) and those with severe gastro-intestinal dysmotility reported a better QoL (effect size -3.03, CI -5.593 to -0.468), compared to other disease states. This large cohort study of quality of life in chronic intestinal failure demonstrates that HPN impacts individuals differently depending on their underlying disease. Furthermore, since the number of HPN infusions required per week is inversely related to an individual's needs-based quality of life, therapies that reduce PN burden should lead to an improvement in QoL.

Sections du résumé

BACKGROUND & AIMS
Home parenteral nutrition (HPN) provides life sustaining treatment for people with chronic intestinal failure. Individuals may require HPN for months or years and are dependent on regular intravenous infusions, usually 12-14 h overnight between 1 and 7 days each week. This regime can have adverse impact on the life of people dependent on the treatment. The aim of this study was to establish mean values for the Parenteral Nutrition Impact Questionnaire (PNIQ) and to determine the effect of disease, frequency of infusions per week and patient characteristics on quality of life of patients fed HPN.
METHOD
The PNIQ was distributed to patients across nine UK HPN clinics. Data were analysed using linear regression, with PNIQ score as the dependent variable and potential confounders as independent variables. Unadjusted and adjusted models are presented. Higher PNIQ scores reflect poorer quality of life.
RESULTS
Completed questionnaires were received from 466 people dependent on HPN. Mean PNIQ score was 11.04 (SD 5.79). A higher PNIQ score (effect size 0.52, CI 0.184 to 0.853) was recorded in those dependent on a higher frequency of HPN infusions per week. Respondents with cancer had a similar mean PNIQ score to those with inflammatory bowel disease (mean 10.82, SD 6.00 versus 11.04, SD 5.91). Those with surgical complications reported a poorer QoL (effect size 3.03, CI 0.642 to 5.418) and those with severe gastro-intestinal dysmotility reported a better QoL (effect size -3.03, CI -5.593 to -0.468), compared to other disease states.
CONCLUSIONS
This large cohort study of quality of life in chronic intestinal failure demonstrates that HPN impacts individuals differently depending on their underlying disease. Furthermore, since the number of HPN infusions required per week is inversely related to an individual's needs-based quality of life, therapies that reduce PN burden should lead to an improvement in QoL.

Identifiants

pubmed: 31060719
pii: S0261-5614(18)31183-X
doi: 10.1016/j.clnu.2018.06.964
pii:
doi:

Types de publication

Journal Article Multicenter Study Observational Study Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1433-1438

Informations de copyright

Copyright © 2018 Elsevier Ltd and European Society for Clinical Nutrition and Metabolism. All rights reserved.

Auteurs

Sorrel T Burden (ST)

School of Health Sciences, University of Manchester, M13 9PL, UK.

Debra J Jones (DJ)

School of Health Sciences, University of Manchester, M13 9PL, UK. Electronic address: Debra.jones@manchester.ac.uk.

Matthew Gittins (M)

School of Health Sciences, University of Manchester, M13 9PL, UK.

Joanne Ablett (J)

Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK.

Michael Taylor (M)

Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK.

Christopher Mountford (C)

Newcastle Upon Tyne Hospitals NHS Foundation Trust, UK.

Jonathan Tyrrell-Price (J)

University Hospitals Bristol NHS Foundation Trust, UK.

Clare Donnellan (C)

St James University Hospital, Leeds, UK.

Fiona Leslie (F)

University Hospitals North Midlands NHS Trust, UK.

Tim Bowling (T)

Nottingham University Hospitals NHS Foundation Trust, UK.

Simon Gabe (S)

St Marks Hospital, London Northwest Healthcare Trust, UK.

Farooq Rahman (F)

University College London Hospital NHS Foundation Trust, UK.

Stephen P McKenna (SP)

School of Health Sciences, University of Manchester, M13 9PL, UK; Galen Research Ltd, Manchester, UK.

Jeanette Wilburn (J)

Galen Research Ltd, Manchester, UK.

Alice Heaney (A)

Galen Research Ltd, Manchester, UK.

Philip Allan (P)

Oxford University Hospitals NHS Foundation Trust, UK.

Simon Lal (S)

School of Health Sciences, University of Manchester, M13 9PL, UK; Salford Royal NHS Foundation Trust, Salford, M6 8HD, UK.

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