Concepts and methods in the development of the ADRQL: An instrument for assessing health-related quality of life in persons with Alzheimer's Disease

This paper describes the conceptual framework and development of the ADRQL (Alzheimer's Disease-Related Quality of Life), a new instrument for assessing Health-Related Quality of Life (HRQoL) in Alzheimer disease (AD). The ADRQL is compared to other well-established HRQoL instruments in terms of conceptual framework and domains. The methodology used in instrument development, which relied heavily on caregivers and AD experts to shape content rather than adopting existing classifications, is discussed, as are special challenges in developing an HRQoL instrument for AD. The ADRQL has domains in common with other HRQoL instruments, but as a disease-specific instrument has unique areas of content. Compared to other measures used in AD assessment, the ADRQL is the first instrument to evaluate multiple domains of HRQoL, as opposed to single components of experience. The ADRQL has been conceptualized and developed using current HRQoL theory and methodology. The objective was to develop an instrument for use in evaluations of treatment interventions in AD. Future stages of development will include psychometric analysis and the establishment of validity and responsiveness to change.