Quality of Life Assessment in Culturally Diverse Populations

Evaluation of QOL involves assessments of a wide spectrum of human functioning, including emotional response to cancer and treatment, physical activity, and the impact of the specific cancer on physical and psychological capacities. QOL now constitutes an important part of study for epidemiology, clinical trials, and health services research. From a cancer surveillance perspective, information about health-related QOL is important because it provides indicators for trends in cancer treatments and their impact on patients’ lives. From a clinical trialist’s perspective, QOL outcomes are increasingly included as endpoints in oncology clinical trials.[2] Finally, from the perspective of health services research, health-related QOL is considered a major part of medical outcomes research, since a cancer patient’s life is a highly dynamic experience.[4] Since many oncology treatments do not cure cancer but can extend life for long periods of time, it is wise to examine all aspects of disease burden to allow accurate assessment of therapeutic progress. Although many clinical trials, outcomes studies, and epidemiology studies now include health-related QOL assessments for persons with many different types of cancer, efforts that include large numbers of racial/ethnic minorities are rare. Most of the questionnaires used to assess QOL in clinical settings are written in English and are tailored for relatively highly educated, white populations. The content and format of the questionnaires can act as a barrier that immediately precludes numerous cancer patients from socioeconomically and ethnically diverse populations, or whose first language is not English. In recent years, this problematic situation has gained attention and motivated researchers to begin drafting instruments that allow for accurate evaluation of populations that speak languages other than English and who have different daily life circumstances. In addition, QOL measurement in cancer patients can present further challenges when the disease has markedly affected physical, role, social, and emotional functioning, making adherence to self-administered questionnaires difficult. In this article, we focus on the work of three researchers who presented papers at the 1999 Robert H. Lurie Comprehensive Cancer Center Health Policy Symposium: Frank Baker, MD, of the American Cancer Society; David Cella, PhD, of the Evanston/Northwestern Healthcare System and Northwestern University; and Sara J. Knight, PhD, of the VA Chicago Healthcare System/Lakeside Division and Northwestern University. All three have been actively involved in developing appropriate methods for evaluating the QOL of patients with cancer in culturally diverse populations. Cultural Equivalence Dr. Frank Baker’s research is based on the practical observation that QOL measurement in cancer patients from lower socioeconomic and minority backgrounds presents numerous chal-lenges.[5] His work has focused on delivering information regarding the cultural equivalence of QOL instruments so that they may be used across culturally diverse populations. In one study he described, only a minority of the different QOL measures demonstrated adequate reliability and validity for black and Hispanic populations. It was further shown that the family functioning dimension was particularly difficult to address across the different cultural backgrounds, because of widely variant attitudes toward this domain.