An international study of the quality of life of adult patients treated with home parenteral nutrition

Janet P Baxter (Corresponding Author), Peter M Fayers, Federico Bozzetti, Darlene Kelly, Francisca Joly, Geert Wanten, Cora Jonkers, Cristina Cuerda, Andre Van Gossum, Stanislaw Klek, Marie-France Boudreault, Alain Gilbert, Manon Jobin, Michael Staun, Lyn Gillanders, Alastair Forbes, Margie O'Callaghan, Ceferino Martinez Faedo, Cinzia Brunelli, Luigi Mariani & 1 others Loris Pironi

Research output: Contribution to journalArticle

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Abstract

Background & aims: Home parenteral nutrition-quality of life (HPN-QOL©) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL© in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. Methods: Patients (n ¼ 699) from 14 countries completed the HPN-QOL©. The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. Results: The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL© in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. Conclusions: The HPN-QOL©, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research
Original languageEnglish
Pages (from-to)1788-1796
Number of pages9
JournalClinical Nutrition
Volume38
Issue number4
Early online date6 Aug 2018
DOIs
Publication statusPublished - Aug 2019

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Home Parenteral Nutrition
Quality of Life
Linear Models
Psychometrics
Crohn Disease
Language
Therapeutics
Research
Surveys and Questionnaires

Keywords

  • Home parenteral nutrition
  • Quality of life
  • Patient reported outcomes
  • Intestinal failure
  • SURVIVAL
  • IMPACT
  • FOLLOW-UP
  • CHRONIC INTESTINAL FAILURE

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An international study of the quality of life of adult patients treated with home parenteral nutrition. / Baxter, Janet P (Corresponding Author); Fayers, Peter M; Bozzetti, Federico; Kelly, Darlene; Joly, Francisca; Wanten, Geert; Jonkers, Cora; Cuerda, Cristina; Van Gossum, Andre; Klek, Stanislaw; Boudreault, Marie-France; Gilbert, Alain; Jobin, Manon; Staun, Michael; Gillanders, Lyn; Forbes, Alastair; O'Callaghan, Margie; Martinez Faedo, Ceferino; Brunelli, Cinzia; Mariani, Luigi; Pironi, Loris.

In: Clinical Nutrition, Vol. 38, No. 4, 08.2019, p. 1788-1796.

Research output: Contribution to journalArticle

Baxter, JP, Fayers, PM, Bozzetti, F, Kelly, D, Joly, F, Wanten, G, Jonkers, C, Cuerda, C, Van Gossum, A, Klek, S, Boudreault, M-F, Gilbert, A, Jobin, M, Staun, M, Gillanders, L, Forbes, A, O'Callaghan, M, Martinez Faedo, C, Brunelli, C, Mariani, L & Pironi, L 2019, 'An international study of the quality of life of adult patients treated with home parenteral nutrition', Clinical Nutrition, vol. 38, no. 4, pp. 1788-1796. https://doi.org/10.1016/j.clnu.2018.07.024
Baxter, Janet P ; Fayers, Peter M ; Bozzetti, Federico ; Kelly, Darlene ; Joly, Francisca ; Wanten, Geert ; Jonkers, Cora ; Cuerda, Cristina ; Van Gossum, Andre ; Klek, Stanislaw ; Boudreault, Marie-France ; Gilbert, Alain ; Jobin, Manon ; Staun, Michael ; Gillanders, Lyn ; Forbes, Alastair ; O'Callaghan, Margie ; Martinez Faedo, Ceferino ; Brunelli, Cinzia ; Mariani, Luigi ; Pironi, Loris. / An international study of the quality of life of adult patients treated with home parenteral nutrition. In: Clinical Nutrition. 2019 ; Vol. 38, No. 4. pp. 1788-1796.
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abstract = "Background & aims: Home parenteral nutrition-quality of life (HPN-QOL{\circledC}) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL{\circledC} in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. Methods: Patients (n ¼ 699) from 14 countries completed the HPN-QOL{\circledC}. The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. Results: The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL{\circledC} in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. Conclusions: The HPN-QOL{\circledC}, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research",
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T1 - An international study of the quality of life of adult patients treated with home parenteral nutrition

AU - Baxter, Janet P

AU - Fayers, Peter M

AU - Bozzetti, Federico

AU - Kelly, Darlene

AU - Joly, Francisca

AU - Wanten, Geert

AU - Jonkers, Cora

AU - Cuerda, Cristina

AU - Van Gossum, Andre

AU - Klek, Stanislaw

AU - Boudreault, Marie-France

AU - Gilbert, Alain

AU - Jobin, Manon

AU - Staun, Michael

AU - Gillanders, Lyn

AU - Forbes, Alastair

AU - O'Callaghan, Margie

AU - Martinez Faedo, Ceferino

AU - Brunelli, Cinzia

AU - Mariani, Luigi

AU - Pironi, Loris

N1 - This study was funded by an ESPEN Research Network Grant 2009.

PY - 2019/8

Y1 - 2019/8

N2 - Background & aims: Home parenteral nutrition-quality of life (HPN-QOL©) is a self-assessment tool for the measurement of QOL in patients on HPN. The aims of this study were: to re-assess the basic psychometric properties of the HPN-QOL© in a multinational sample of adult patients; to provide a description of QOL dimensions by short and long HPN treatment duration; to explore clinical factors potentially associated to QOL scores. Methods: Patients (n ¼ 699) from 14 countries completed the HPN-QOL©. The questionnaires were analysed to evaluate data completeness, convergent/discriminant validity and internal-consistency reliability. The association of overall QOL and HPN treatment duration as well as other clinical factors were investigated using multivariable linear regression models. Results: The analysis of the multitrait-scaling and internal consistency indicates a good fit with the questionnaire structure for most items. Item discriminant validity correlation was satisfactory and psychometric evaluation of the HPN-QOL© in the different English, French and Italian language patient sub-groups confirmed psychometric equivalence of the three questionnaire versions. The results of the multivariable linear regression showed that QOL scores were significantly associated with HPN duration (better in long-term), underlying disease (better in Crohn's disease and mesenteric ischaemia) and living status (worse in living alone) and, after adjusting for the other factors, with the number of days of HPN infusion per week. Conclusions: The HPN-QOL©, is a valid tool for measurement of QOL in patients on HPN, to be used in the clinical practice as well as in research

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KW - Quality of life

KW - Patient reported outcomes

KW - Intestinal failure

KW - SURVIVAL

KW - IMPACT

KW - FOLLOW-UP

KW - CHRONIC INTESTINAL FAILURE

UR - http://www.mendeley.com/research/international-study-quality-life-adult-patients-treated-home-parenteral-nutrition

U2 - 10.1016/j.clnu.2018.07.024

DO - 10.1016/j.clnu.2018.07.024

M3 - Article

VL - 38

SP - 1788

EP - 1796

JO - Clinical Nutrition

JF - Clinical Nutrition

SN - 0261-5614

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ER -