Broader concepts of quality of life measurement, encompassing validation

Abstract

Developing and managing measures of quality of life (QoL) require attention to a range of broader concepts, in addition to meeting validation requirements. The aim of this review is to describe development and experience in Cardiff of these concepts and to inform users of Cardiff quality of life tools of aspects of their origin, for the benefit of developers of novel QoL measures or other patient reported outcome measures. Publications from the Cardiff team over the last three decades are used to illustrate descriptions of concepts involved in developing and managing QoL measures. The concepts are grouped into three main themes: (A) Design of tools: measurement ability turns ideas into science, QoL measurement based on patient experience, the need for tools to be clinically practical and useful with meaningful scores, different ages need tailored tools. (B) Practical management of tools: enabling ease of access, maintenance of single version, translation validity, enabling access to postpublication experience and further validation. (C) Promoting wider understanding of QoL: examples include educate thinking with disease severity definition; heighten awareness of broader burden, family impact, the time dimension and the new word quimp. The development and management of QoL and other outcome measures involves attention to a wide range of other issues, in addition to meeting validation requirements.