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
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 use...
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| Format: | Article |
| Language: | English |
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MDPI AG
2023-01-01
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| Series: | Nutrients |
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| Online Access: | https://www.mdpi.com/2072-6643/15/3/622 |
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| author | 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 |
| author_facet | 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 |
| author_sort | Debra Jones |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-11T09:30:52Z |
| format | Article |
| id | doaj.art-dacf795b15ff45c9b1300640c917ddc8 |
| institution | Directory Open Access Journal |
| issn | 2072-6643 |
| language | English |
| last_indexed | 2024-03-11T09:30:52Z |
| publishDate | 2023-01-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Nutrients |
| spelling | doaj.art-dacf795b15ff45c9b1300640c917ddc82023-11-16T17:39:32ZengMDPI AGNutrients2072-66432023-01-0115362210.3390/nu15030622Investigating the Relationship between Home Parenteral Support and Needs-Based Quality of Life in Patients with Chronic Intestinal Failure: A National Multi-Centre Longitudinal Cohort StudyDebra Jones0Simon Lal1Chloe French2Anne Marie Sowerbutts3Matthew Gittins4Simon Gabe5Diane Brundrett6Alison Culkin7Chris Calvert8Beth Thompson9Sheldon C. Cooper10Jane Fletcher11Clare Donnellan12Alastair Forbes13Ching Lam14Shellie Radford15Christopher G. Mountford16Daniel Rogers17Rebecca Muggridge18Lisa Sharkey19Penny Neild20Carolyn Wheatley21Philip Stevens22Sorrel Burden23Division of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester M13 9PL, UKIntestinal Failure Unit, Salford Royal Foundation Trust, Salford M6 8HD, UKDivision of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester M13 9PL, UKDivision of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester M13 9PL, UKDivision of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester M13 9PL, UKSt Mark’s Hospital, London North West University Healthcare NHS Trust, London HA1 3UJ, UKSt Mark’s Hospital, London North West University Healthcare NHS Trust, London HA1 3UJ, UKSt Mark’s Hospital, London North West University Healthcare NHS Trust, London HA1 3UJ, UKIntestinal Failure and Nutrition Team, Royal Devon and Exeter NHS Foundation Trust, Exeter EX2 5DW, UKIntestinal Failure and Nutrition Team, Royal Devon and Exeter NHS Foundation Trust, Exeter EX2 5DW, UKGI Medicine, University Hospitals Birmingham NHS Foundation Trust, Birmingham B15 2TH, UKGI Medicine, University Hospitals Birmingham NHS Foundation Trust, Birmingham B15 2TH, UKLeeds Gastroenterology Institute, Leeds Teaching Hospitals NHS Trust, Leeds LS9 7JT, UKNorwich Medical School, University of East Anglia, Norwich NR4 7UQ, UKNorthern General Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield S5 7AU, UKNottingham University Hospitals NHS Trust, Queens Medical Centre Campus, Nottingham NG7 2UH, UKNewcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle NE1 4LP, UKLeicester Intestinal Failure Team, Leicester Royal Infirmary, University Hospitals Leicester NHS Trust, Leicester LE1 5WW, UKLeicester Intestinal Failure Team, Leicester Royal Infirmary, University Hospitals Leicester NHS Trust, Leicester LE1 5WW, UKGastroenterology, Cambridge University Hospitals NHS Foundation Trust, Cambridge CB2 0QQ, UKDepartment of Gastroenterology, St. Georges University Hospitals NHS Foundation Trust, London SW17 0QT, UKPatients on Intravenous and Naso-gastric Nutrition Treatment, Christchurch, Dorset BH23 2XS, UKGlasgow Royal Infirmary, Glasgow G4 0SF, UKDivision of Nursing, Midwifery and Social Work, School of Health Sciences, University of Manchester, Manchester M13 9PL, UKHome 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.https://www.mdpi.com/2072-6643/15/3/622home parenteral nutritionhome parenteral supportquality of lifepatient-reported outcomeslongitudinal studyparenteral nutrition impact questionnaire (PNIQ) |
| spellingShingle | 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 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 home parenteral nutrition home parenteral support quality of life patient-reported outcomes longitudinal study parenteral nutrition impact questionnaire (PNIQ) |
| 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 |
| topic | home parenteral nutrition home parenteral support quality of life patient-reported outcomes longitudinal study parenteral nutrition impact questionnaire (PNIQ) |
| url | https://www.mdpi.com/2072-6643/15/3/622 |
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