Quality of Life Measurement in the Field of Intellectual Disabilities: Eight Principles for Assessing Quality of Life-Related Personal Outcomes

Soc Indic Res (2010) 98:6172 DOI 10.1007/s11205-009-9517-7

Accepted: 6 September 2009 / Published online: 29 September 2009 Springer Science+Business Media B.V. 2009

Abstract As the concept of quality of life (QOL) has evolved from a theoretical concept to both a measurable construct and an action-oriented change agent in the eld of intellectual disabilities, there has emerged a corresponding need to develop, implement, and use a systematic approach to the assessment of domain-referenced quality of life outcomes. The purpose of this article is to suggest eight principles based on published literature and the authors experiences that should underlie the assessment of QOL-related personal outcomes in the eld of intellectual disabilities. Data from the development of the personal outcomes scale are used to exemplify each principle. The articles premise is that model development and test construction should work in tandem, and that a quality of life assessment instrument should be based on an empirically derived QOL conceptual and measurement framework/model.

Keywords Quality of life Assessment

1 Introduction

During the 1980s and 1990s, the concept of quality of life (QOL) was primarily used in the eld of intellectual disability (ID) as a sensitizing notion that grounded and guided the initial efforts to understand its components and potential application. Before, people with ID were excluded from the mainstream of society (Schalock et al. 2007). Up until the

C. Claes (&) S. Vandevelde

Ghent University/University College, Ghent, Belgium e-mail: [email protected]

G. Van Hove J. van Loon

Ghent University, Ghent, Belgium

J. van Loon

Arduin Foundation, Middelburg, The Netherlands

R. L. Schalock

Hastings College, Hastings, NE, USA

Quality of Life Measurement in the Field of Intellectual Disabilities: Eight Principles for Assessing Qualityof Life-Related Personal Outcomes

Claudia Claes Geert Van Hove Jos van Loon Stijn Vandevelde Robert L. Schalock

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62 C. Claes et al.

1970s and 1980s, quality of life was dened in terms of gains in adaptive behaviour skills or increases in scores on intelligence tests (Campo et al. 1997). The emergence of a broader concept of quality of life in the eld of intellectual disabilities had three primary sources: (a) a shift in focus away from the belief that scientic, medical, and technological advances alone would result in improved life towards an understanding that personal, family, community, and societal...