Quality of life measurement in mental health. Introduction and overview of workshop findings

Abstract

The Quality of Life Measurement Workshop was designed to address a number of specific questions relating to measurement and use of quality of life indicators among persons with chronic and severe mental illnesses. The issues surrounding measurement of quality of life among severely and persistently mentally ill people proved to be considerably more complex than originally imagined. Workshop discussions concentrated on the clear elaboration of the scope and nature of these complexities rather than on their complete resolution. Important themes that emerged were: the importance of quality of life for consumers/survivors and their family members, and as a basis for evaluating program effectiveness and the progress of mental health reform; the fact that persons with mental illness experience lower life satisfaction than the population as a whole; the importance for consumers/survivors of having a sense of control, companionship, feelings of optimism, and a purposeful and meaningful life; the subjective and personal nature of quality of life perspective and the need for flexible measurement instruments that permit differential weighting of factors to take account of these different views; the lack of attention to social stigma and family or caregiver burden in current conceptualizations and measurement approaches and the importance of these factors to consumers/survivors and family members; the overt focus on psychiatric symptomatology and the relative neglect of key quality of life considerations that are important to consumers/survivors and their families; the need for more operational measures, such as those in the health-related quality of life field, to be used as a basis for evaluating the worth of new and alternate models of service delivery; the potential for competing interests with respect to program accountability to consumers/survivors and their families, on the one hand, and funders on the other, and the importance of striking a balance; the importance of including quality of life measurements within the context of controlled clinical trials; the need for multiple measurement approaches, ensuring that scales are appropriately matched to study goals and objectives, recognizing that scales differ in their sensitivity to treatment change; commonly used measures such as rates of hospital recidivism or psychiatric symptomatology are ultimately too narrow and, when used alone, are un-satisfactory measures of quality of program outcomes; the importance of minimizing data collection burden by ensuring that routine data collection systems have clinical utility within the context of the consumer/provider encounter; the need for extreme caution when directly linking quality of life outcomes to program funding within the context of outcomes-management systems; the need to gain a greater understanding of determinants of quality of life such as gender, age, diagnosis, comorbidities, stage of illness, or cognitive and emotional impairments; the importance of normative data and the need to develop statistical benchmarks; the importance of distinguishing quality of life outcomes on which specific interventions can have an impact (proximal outcomes) from the broader socioeconomic determinants of quality of life over which programs and interventions have little direct control (distal outcomes); the added cost of collecting quality of life outcome data on a routine basis and the general lack of technical resources available to most intervention programs; the potential for quality of life outcomes to be misused within the context of accountability frameworks given their embryonic stage of development, a lack of understanding of what constitutes appropriate clinical or statistical benchmarks, and the risk of data degradation when outcomes are tied to program funding; and the need for client-based research which incorporates consumers/survivors and their family members into all facets of the research process from study design to interpretati