The impact of AIDS-associated wasting on quality of life: Qualitative issues of measurement and evaluation

Abstract

Four focus groups were conducted in men (n = 26) and women (n = 8) with a history of HIV wasting, two in San Francisco of men only, two in New York City, one of men only and one of women only. Participants reported that HIV wasting has a profound negative impact on quality of life. The negative effects on quality of life were mediated primarily by the impact of loss of energy, changes in appearance, and GI symptoms on the important domains of quality of life, including physical, psychological, social, sexual functioning, and health perceptions. Generic measures of quality of life, while covering the appropriate domains, fail to provide the sensitivity and depth required to evaluate the major issues raised by the focus group participants with respect to the specific impact' of H!V wasting on their lives. Most generic instruments provide coverage with respect to physical functioning such as ability to climb stairs and carry groceries. They also measure psychological components such as anxiety and depression. However, condition-specific items more salient to persons with AIDS-associated wasting should focus on those areas of psychological and emotional impact not typically covered by standard generic instruments. As reported in this study, negative feelings about physical appearance, shame, embarrassment, social isolation, loss of appetite, loss of sexual libido, grief, fear, loss of self worth and self-esteem, hopelessness, cognitive dysfunction and difficulty sleeping were all linked to the wasting condition. Seemingly small improvements in appearance could potentially lead to large gains in self worth and self-esteem which would likely decrease social isolation and feelings of embarrassment and shame. Similarly, relatively small gains m muscle strength might enable one to open a jar, lift a bag of groceries or take a subway. It was clear from these focus group that simply measuring increases in lean body mass or exercise endurance are inadequate metrics of improved health and quality of life for the evaluation of new therapeutic agents for AIDS-associated wasting. This lack of sensitivity in measurement makes it extremely difficult to detect new therapies that might benefit patients in profound ways. How does one define 'optimal patient outcomes' for purposes of the evaluation of new therapies for persons with AIDS-associated wasting or other diseases and conditions. The American Medical association defines optimal patient outcomes as. 'Optimal possible improvement in the patient's physiologic status, physical function, emotional and intellectual performance and comfort at the earliest time possible consistent with the best interests of the patient' (Outcomes Research Resource Guide 1996-97 ed.). Health outcomes should therefore focus not only on the biomedical parameters which signify therapeutic efficacy, but on the above-mentioned areas as well. In addition, the timing and purpose of treatment should be harmonized with the specific interests of the patient. While clinicians communicate with patients on a daily basis, it is disconcerting that the products of that communication seldom form the basis for biomedical research. Semi-structured focus groups m patients with specific conditions are a useful method for translating the best interests of the patient into therapeutic research and goals.