Some considerations about the use and applicability of preference-based health-related quality of life measures to survivors of cancer in childhood and adolescence in developing countries

Abstract

Measures of health-related quality of life (HRQoL) have become widely available in developed countries such as the United States, Canada and the United Kingdom. Such measures, instruments or questionnaires need to undergo translation processes, validation and cultural adaptation in order to be used in other countries and in other languages. The utilization of measures developed in settings other than the originating ones poses several challenges, including the appropriateness of the translation and of the cross-cultural adaptation and adequate validation process. Preference-based or preference-weighted utilities for health states have an important role in measurement and in economic evaluation regarding a wide range of conditions, such as childhood cancer and survivorship. Some attempts have been made to create and apply preference-based HRQoL indexes to young populations, such as children, adolescents and young adults. Use of proxy respondents is an issue for studying HRQoL in these groups, especially children. This review aims at providing a critical evaluation of the use of preferencebased HRQoL measures in developing countries, focusing on the Health Utilities Index, Mark 2 and Mark 3, commonly called HUI2 and HUI3, and their application to survivors of childhood cancer in Latin America. The process researchers undertake, especially in regards to the use of already translated instruments is discussed. The appropriateness of the instruments is also assessed and focus is on the attributes of the instrument and the population, the cultural aspects and the use of proxy respondents. Finally, the adequateness of other commonly used preference-based instruments for childhood cancer is discussed. This critical assessment could benefit future work in the area of health-related quality of life, especially guiding those interested in the trans-cultural use of existing generic preference-based HRQoL instruments.