Beyond the high mortality burden: targeting quality of life in Brazil

Abstract

Until forty years ago, few physicians were aware of the relevance of studies addressing quality of life. However, by 2001, more than 40,000 papers about quality of life had been published. It is now clear, for many physicians and scientists around the world, that it is not enough for people just to be alive, but that they should be able to live with pleasure and comfort. It is not easy to define quality of life, and the methodology for studies regarding this have no clear concepts and operational definitions that can be used as standards. Marcia Testa, in a seminal review of the methodology used in quality of life studies, published in the New England Journal of Medicine, 1 very ably discussed all the pitfalls in studies addressing quality of life. The most important of these is that quality of life is not directly measurable in the way that blood glucose level is. Quality of life is measured indirectly using questionnaires such as the SF-36 (Short Form #36), the WHO-QOL World Health Organization Quality of Life instrument, SAS, 2-4 and others. These apply elementary questions about daily activities, limitations to physical activity, changes in family life, and alterations in mental health. By simply asking questions, they try to infer the patient’s quality of life in relation to some disease or in their usual life. There are also some questionnaires designed to measure quality of life for specific diseases, such as the St George Hospital questionnaire, which is commonly used for patients with chronic obstructive respiratory disease. Sometimes, investigators can use a general questionnaire together with a specific questionnaire for some disease, in an attempt to be more sensitive and specific. But we do not know whether such questionnaires are really measuring what they say they are. We now have a lot of papers about quality of life in chronic diseases like chronic obstructive respiratory disease, chronic heart failure, or various types of cancer in developed countries. Some of these questionnaires are available in Brazil, translated and validated with very good methodology. What would be our position regarding quality of life studies and quality of life data, here in Brazil?