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.
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 language | English |
|---|---|
| Pages (from-to) | E22-E28 |
| Number of pages | 7 |
| Journal | e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism |
| Volume | 3 |
| Issue number | 1 |
| Early online date | 28 Nov 2007 |
| DOIs | |
| Publication status | Published - Feb 2008 |
Bibliographical note
AcknowledgementsThe 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.
Keywords
- Parenteral nutrition
- Home parenteral nutrition
- Quality of life
- Translation