The development and translation of a treatment-specific quality of life questionnaire for adult patients on home parenteral nutrition

Janet P. Baxter, Peter M. Fayers, Alastair W. McKinlay

Research output: Contribution to journalArticle

8 Citations (Scopus)

Abstract

Background & aims: Quality of life (Qol) is an important measure in the current healthcare climate, and a potentially useful clinical indicator in the use of home parenteral nutrition (HPN). Although it is acknowledged as being of importance, there is little available data as there is currently no validated quality of life questionnaire specifically for HPN. The aim of this study was to develop a treatment-specific questionnaire and to produce translations to allow cross-cultural sampling to measure the quality of life of patients receiving HPN.
Methods: Using published guidelines, the development of the HPN–QOL© involved qualitative research methodology, literature reviews, semi-structured interviews with health professionals and patients, and pilot testing.
Results: Fifteen relevant Qol domains were generated from the literature and semi-structured interviews with health professionals and patients. From this, a 57-item questionnaire was conceptualised into eight multi-item and one single-item functional scales, eight multi-item and one single-item symptom scales, two HPN-specific items and three global Qol analogue scales. Using published translation procedures; the HPN–QOL© was translated into Danish, Dutch, French, German, Italian, Polish, and Spanish.
Conclusions: A treatment-specific questionnaire for the assessment of Qol of adult HPN patients has been prepared and formally translated into seven European languages. Pilot studies are underway to identify and solve any potential problems in translation so that the questionnaire can be expressed clearly in the language of translation. The purpose of the HPN–QOL© is to assess the Qol of the HPN population and to evaluate changes in individual patient Qol throughout treatment. The use of this questionnaire should become part of the routine clinical management of HPN patients.
Original languageEnglish
Pages (from-to)E22-E28
Number of pages7
Journale-SPEN, the European e-Journal of Clinical Nutrition and Metabolism
Volume3
Issue number1
Early online date28 Nov 2007
DOIs
Publication statusPublished - Feb 2008

Fingerprint

Home Parenteral Nutrition
Quality of Life
Therapeutics
Language
Interviews
Surveys and Questionnaires
Qualitative Research
Health
Climate
Research Design
Guidelines
Delivery of Health Care

Keywords

  • Parenteral nutrition
  • Home parenteral nutrition
  • Quality of life
  • Translation

Cite this

@article{0b6397457fce414896e0970cb98b6e4d,
title = "The development and translation of a treatment-specific quality of life questionnaire for adult patients on home parenteral nutrition",
abstract = "Background & aims: Quality of life (Qol) is an important measure in the current healthcare climate, and a potentially useful clinical indicator in the use of home parenteral nutrition (HPN). Although it is acknowledged as being of importance, there is little available data as there is currently no validated quality of life questionnaire specifically for HPN. The aim of this study was to develop a treatment-specific questionnaire and to produce translations to allow cross-cultural sampling to measure the quality of life of patients receiving HPN. Methods: Using published guidelines, the development of the HPN–QOL{\circledC} involved qualitative research methodology, literature reviews, semi-structured interviews with health professionals and patients, and pilot testing. Results: Fifteen relevant Qol domains were generated from the literature and semi-structured interviews with health professionals and patients. From this, a 57-item questionnaire was conceptualised into eight multi-item and one single-item functional scales, eight multi-item and one single-item symptom scales, two HPN-specific items and three global Qol analogue scales. Using published translation procedures; the HPN–QOL{\circledC} was translated into Danish, Dutch, French, German, Italian, Polish, and Spanish. Conclusions: A treatment-specific questionnaire for the assessment of Qol of adult HPN patients has been prepared and formally translated into seven European languages. Pilot studies are underway to identify and solve any potential problems in translation so that the questionnaire can be expressed clearly in the language of translation. The purpose of the HPN–QOL{\circledC} is to assess the Qol of the HPN population and to evaluate changes in individual patient Qol throughout treatment. The use of this questionnaire should become part of the routine clinical management of HPN patients.",
keywords = "Parenteral nutrition, Home parenteral nutrition, Quality of life, Translation",
author = "Baxter, {Janet P.} and Fayers, {Peter M.} and McKinlay, {Alastair W.}",
note = "Acknowledgements The authors acknowledge the members of the European Society for Parenteral and Enteral Nutrition Home Artificial Nutrition Working Party including F. Bozzetti, X. Hebuterne, F. Joly, C. Jonkers, S. Klek, M. Lyszkowska, J. M. Moreno Villares, L. Pironi, M. Staun, P. Thul, A. van Gossum as they carried out the translations. B. Braun Medical Limited and Fresenius Kabi Limited provided funding for some of the translation work to be carried out. Neither company had any role in any aspect of the study, in the writing of the manuscript or in the decision to submit it for publication.",
year = "2008",
month = "2",
doi = "doi:10.1016/j.eclnm.2007.10.001",
language = "English",
volume = "3",
pages = "E22--E28",
journal = "e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism",
issn = "1751-4991",
publisher = "Elsevier BV",
number = "1",

}

TY - JOUR

T1 - The development and translation of a treatment-specific quality of life questionnaire for adult patients on home parenteral nutrition

AU - Baxter, Janet P.

AU - Fayers, Peter M.

AU - McKinlay, Alastair W.

N1 - Acknowledgements The authors acknowledge the members of the European Society for Parenteral and Enteral Nutrition Home Artificial Nutrition Working Party including F. Bozzetti, X. Hebuterne, F. Joly, C. Jonkers, S. Klek, M. Lyszkowska, J. M. Moreno Villares, L. Pironi, M. Staun, P. Thul, A. van Gossum as they carried out the translations. B. Braun Medical Limited and Fresenius Kabi Limited provided funding for some of the translation work to be carried out. Neither company had any role in any aspect of the study, in the writing of the manuscript or in the decision to submit it for publication.

PY - 2008/2

Y1 - 2008/2

N2 - Background & aims: Quality of life (Qol) is an important measure in the current healthcare climate, and a potentially useful clinical indicator in the use of home parenteral nutrition (HPN). Although it is acknowledged as being of importance, there is little available data as there is currently no validated quality of life questionnaire specifically for HPN. The aim of this study was to develop a treatment-specific questionnaire and to produce translations to allow cross-cultural sampling to measure the quality of life of patients receiving HPN. Methods: Using published guidelines, the development of the HPN–QOL© involved qualitative research methodology, literature reviews, semi-structured interviews with health professionals and patients, and pilot testing. Results: Fifteen relevant Qol domains were generated from the literature and semi-structured interviews with health professionals and patients. From this, a 57-item questionnaire was conceptualised into eight multi-item and one single-item functional scales, eight multi-item and one single-item symptom scales, two HPN-specific items and three global Qol analogue scales. Using published translation procedures; the HPN–QOL© was translated into Danish, Dutch, French, German, Italian, Polish, and Spanish. Conclusions: A treatment-specific questionnaire for the assessment of Qol of adult HPN patients has been prepared and formally translated into seven European languages. Pilot studies are underway to identify and solve any potential problems in translation so that the questionnaire can be expressed clearly in the language of translation. The purpose of the HPN–QOL© is to assess the Qol of the HPN population and to evaluate changes in individual patient Qol throughout treatment. The use of this questionnaire should become part of the routine clinical management of HPN patients.

AB - Background & aims: Quality of life (Qol) is an important measure in the current healthcare climate, and a potentially useful clinical indicator in the use of home parenteral nutrition (HPN). Although it is acknowledged as being of importance, there is little available data as there is currently no validated quality of life questionnaire specifically for HPN. The aim of this study was to develop a treatment-specific questionnaire and to produce translations to allow cross-cultural sampling to measure the quality of life of patients receiving HPN. Methods: Using published guidelines, the development of the HPN–QOL© involved qualitative research methodology, literature reviews, semi-structured interviews with health professionals and patients, and pilot testing. Results: Fifteen relevant Qol domains were generated from the literature and semi-structured interviews with health professionals and patients. From this, a 57-item questionnaire was conceptualised into eight multi-item and one single-item functional scales, eight multi-item and one single-item symptom scales, two HPN-specific items and three global Qol analogue scales. Using published translation procedures; the HPN–QOL© was translated into Danish, Dutch, French, German, Italian, Polish, and Spanish. Conclusions: A treatment-specific questionnaire for the assessment of Qol of adult HPN patients has been prepared and formally translated into seven European languages. Pilot studies are underway to identify and solve any potential problems in translation so that the questionnaire can be expressed clearly in the language of translation. The purpose of the HPN–QOL© is to assess the Qol of the HPN population and to evaluate changes in individual patient Qol throughout treatment. The use of this questionnaire should become part of the routine clinical management of HPN patients.

KW - Parenteral nutrition

KW - Home parenteral nutrition

KW - Quality of life

KW - Translation

U2 - doi:10.1016/j.eclnm.2007.10.001

DO - doi:10.1016/j.eclnm.2007.10.001

M3 - Article

VL - 3

SP - E22-E28

JO - e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism

JF - e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism

SN - 1751-4991

IS - 1

ER -