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

SummaryBackground & aimsQuality 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.MethodsUsing 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.ResultsFifteen 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.ConclusionsA 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.