Quality of Life as an Outcome Measure

Quality of life measurement has increasingly become a useful method of assessing the impact of services and supports to individuals and families with intellectual, mental health, and neurodevelopmental disabilities. It is also useful for person-centered and family-centered planning. Quality of life is a social construct and, as such, is measured through valid indicators. Measures of quality of life indicators are useful ways to assess quality of life outcomes - the ongoing and lasting changes in people’s lives. In the broad field of health, two main approaches to quality of life measurement have emerged: that based on the whole-person approach and that based on health-related quality of life. Each has strengths and limitations. Quality of life measures that have been developed to date typically focus on aspects of life that are common to the human condition - aspects of life that all people share. These quality of life measures are a good basis for assessing quality of life outcomes. In addition, though, individuals and families have interests, abilities, and characteristics that make particular aspects of their lives uniquely important and valued for them. These need to be accounted for in quality of life assessment, especially when supporting the individual person and the individual family. A further contention of this chapter is that all quality of life assessment needs to be interpreted through the lens of the lived experience of people with disabilities or families that include disability. This is essential, as human beings characteristically find and express somewhat positive levels of satisfaction, happiness, and quality even in conditions that others might judge to lack quality.