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Article Excerpt
This article provides a review of the current status of the quality of life (QOL) construct and its application in the measurement of rehabilitation outcomes for people with disabilities. Demonstrating positive outcomes of rehabilitation services and interventions is a primary concern in rehabilitation in the current environment of accountability. In addition to rehabilitation counseling's historical federal mandate to demonstrate positive outcomes, an increased focus on consumer rights, increased competition for federal funds, and the emphasis of funding sources on effective and efficient services are driving this concern and the resulting search for appropriate outcome assessment measures and models.
Quality of life has long been recognized as a philosophically important rehabilitation outcome (e.g., Fabian, 1991; Livneh, 1988; Wright, 1980) and considerable effort has been expended in developing practical applications of QOL in rehabilitation practice and outcome measurement over the last 25 years. There remain, however, a number of conceptual limitations and pragmatic barriers to its widespread acceptance and use as a measure of outcome. Among these are the definitional ambiguity associated with the construct (Dijkers, 1997; Fabian, 1991), inconsistent approaches to its measurement, confusion over its distinction from other concepts, and the difficulty associated with the selection or creation of appropriate measurement instruments. In addition, questions remain as to whether QOL measurement is sufficiently valid, reliable, and sensitive to the changes that result from rehabilitation services or intervention.
The purpose of this article is to assist readers in understanding and effectively using QOL in rehabilitation outcome assessment and, ultimately, to increase its appropriate use in this context. To this end this article provides an in-depth exploration of the QOL construct, including both its promise and its limitations in the assessment of rehabilitation outcomes. We begin with an overview of rehabilitation outcome assessment and the application of QOL in this context. Following this we provide a brief review of the history of the QOL construct and its evolution in the social sciences generally and in rehabilitation counseling specifically. In order to enhance conceptual clarity we explore current definitions of QOL and distinguish QOL from constructs that are either (a) conceptually related to QOL e.g., life satisfaction, subjective-well-being, and health-related QOL, or (b) theoretically distinct from QOL but frequently used in rehabilitation outcome measurement (e.g. assessment of functional status, mental health, and psychosocial adaptation). Finally, we discuss the considerations in selecting a QOL instrument for use in rehabilitation outcome assessment.
Outcome Measurement in Rehabilitation
In the health and social service professions, outcome measurement may generally be defined as the measurement of change that results from participation in a program or service, or from receipt of a treatment or intervention. Outcome measurement has a number of important purposes and benefits. Monitoring the outcomes of clinical intervention provides a means of developing standard practices, informs clinical decisions regarding care, and provides a framework for assessing organizational performance (Heinemann, 2005). At the programmatic level, outcome assessment provides the ability to evaluate the effectiveness and efficiency of services and to make comparisons over time and across programs. Outcome assessment at this level also enables justification and the demonstration of accountability to program stakeholders and consumers.
Over the course of the past 30 years the ability to demonstrate accountability through evidence-based outcome assessment has been a steadily growing emphasis within the medical, mental health, and social service professions. Outcome assessment was made a focus in rehabilitation counseling in the Rehabilitation Act Amendments of 1973, in which rehabilitation programs were required to show that they could effectively and efficiently meet service outcome goals (Rubin & Roessler, 2001). In subsequent years this focus has grown and expanded. Performance-based indicators of service outcomes have been established for the state-federal vocational rehabilitation (VR) program in federal legislation including the Rehabilitation Act Amendments of 1992 and 1998 and the Workforce Investment Act (Lewis, Armstrong, & Karpf, 2005).
This legislative focus on accountability has extended beyond the confines of the state-federal VR program to other rehabilitation service providers and agencies. For example, the Ticket to Work and Work Incentive Improvement Act of 1999 made payments to service providers contingent on demonstrated employment outcomes (Lewis et al., 2005). In addition, the emphasis of funding sources on effective and efficient services has increased the necessity of rehabilitation agencies and service providers to be able to demonstrate their effectiveness. For example, the Commission on the Accreditation of Rehabilitation Facilities (CARF) recently increased their requirement for facilities to document their effectiveness through ongoing program evaluation (Lewis et al., 2005).
Changing Perspectives on Rehabilitation Outcomes
Outcome goals in rehabilitation counseling have traditionally been unidimensional and functionally-based (Fabian, 1991; Mermis, 2005). Historically, as a function of its history, the primary outcome goal has been employment. The state federal VR program was developed with the goal of increasing employment among persons with disabilities, and VR agencies have developed services and interventions designed to help meet that goal. Over time, however, the evolution of the profession, and shifts in philosophies, standards, expectations, and professional knowledge have created a need to reevaluate and modify outcome goals, and therefore, outcome measurement.
For example, although evaluation of the effectiveness of the VR program has historically focused on short-term employment outcomes (Chan, Miller, Lee, Pruett, & Chou, 2004), it has frequently been suggested that this narrow focus may provide an insufficient and misleading picture of the benefits of rehabilitation services to consumers (Chapin, Miller, Ferrin, Chan, & Rubin, 2004). As a result, several groups of rehabilitation researchers have suggested a need to broaden and improve the definition of successful rehabilitation beyond employment outcomes (e.g., Gilbride, Thomas, & Stensrud, 1998; Szymanski, Parker, & Butler, 1990). Many researchers have specifically identified QOL as an important component of alternative approaches (e.g., Bishop & Feist-Price, 2001; Rubin, Chan, Bishop, & Miller, 2003; Rubin, Chan, & Thomas, 2003).
Recently, for example, Chart and Rubin (1999; Chan, Rubin, Lee, & Pruett, 2003; Rubin, Chan, Bishop, & Miller, 2003) have advocated for the inclusion of QOL in the framework for assessing rehabilitation counseling outcomes. These researchers have developed a multidimensional rehabilitation planning and outcome assessment system for use in VR agencies in which well-being represents one important indicator of pre- to post-service change. Although this system has not yet been widely applied in VR practice, it is certainly evidence of a trend in the direction of adopting more comprehensive outcome measures, including those with a QOL component.
Another factor that has and will continue to drive the need to alter traditional perspectives on rehabilitation outcomes is the rapid evolution and expansion of the profession. Historically intimately linked to the state-federal VR programs (Jenkins, Patterson, & Szymanski, 1998), in the course of the past 85 years the profession has evolved such that rehabilitation counselors are working in an expanding array of additional service delivery settings, including community rehabilitation programs, supported employment programs, private practice and disability insurance settings, psychiatric rehabilitation programs, substance abuse treatment facilities, employee assistance programs, disability management, secondary and university education settings, hospitals and related medical settings, and prisons and other forensic settings. As the scope of rehabilitation counseling practice grows, so will the need to demonstrate and measure effectiveness in different ways and in different practice contexts, including through the measurement of programs' and interventions' impact on consumer QOL.
In rehabilitation counseling, as in all health and social service professions, the use of QOL as an outcome measurement provides a number of important benefits, but some potential limitations as well. In order to understand both it is important to have a comprehensive understanding of this broad construct, including its history and development, and its relationship to and divergence from other related constructs. The following discussion describes the history of the QOL construct in the social sciences.
Historical Development and Evolution of the Concept of Quality of Life in the Social Sciences
Although the search for the underpinnings of happiness and satisfaction with life has concerned philosophers for centuries (Diener & Suh, 1997), the application of the science of QOL and well-being in the social sciences has a relatively recent history. In the post-World War II era, a series of national and international surveys of population well-being were conducted, based on measures...
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