Spirituality/religion and quality of life in patients with HIV/AIDS

Some 1 million Americans have HIV infection.1 Advances in pharmacotherapy notwithstanding, HIV/AIDS continues to be a major cause of morbidity and mortality in the United States and even more so in other parts of the world. Quality-of-life issues remain paramount. An important—yet often neglected—facet of quality of life, particularly for those facing chronic or life-threatening illness, is spirituality/religion. Although numerous studies have examined quality of life, in particular, health-related quality of life, in patients with HIV,2,3 only a few have examined the role that spirituality plays in quality of life in HIV.4–10 In a small study conducted at the advent of the highly active antiretroviral therapy era, we found, surprisingly, that nearly half of the patients believed that their life was better then than it was before being diagnosed with HIV, and that spiritual well-being was associated with feeling that life had improved.4 To try to explain the role that spirituality/religion plays in the quality of life of patients with HIV, we developed a conceptual model in which spirituality/religion influences (1) the belief that life has improved, and (2) a phenomenon we have called “will to live” (a preference for longevity over better health, as manifested by high time tradeoff utilities), either directly or via 4 mediating mechanisms: healthy lifestyle, which we captured through medication adherence; social support; self-perception, or self-esteem; and, healthy beliefs, captured through optimism (Fig. 1). The conceptual model formed the basis of several papers in this supplement11–14 and was put to a direct test in a couple.13,14 FIGURE 1 Initial conceptual model. The hypothesized relationships among several spirituality/religion and quality-of-life variables are depicted; some of the relationships were confirmed and others were refuted in the paper by Szaflarski et al.13 Collectively, the 8 papers in this supplement present a state-of-the-art look at both quality of life and spirituality/religion from 2 longitudinal studies involving a total of 550 patients with HIV from Cincinnati, OH, Washington, DC, Pittsburgh, PA, and Miami, FL. The first of 2 papers by Cotton et al.,11 using 3 measures of spirituality/religion, reports that most patients with HIV/AIDS belong to an organized religion and use their religion to cope with their illness. A number of psychosocial characteristics, including optimism, self-esteem, life satisfaction, ethnicity, and alcohol use, are associated with spirituality/religion; spirituality levels remained stable over 12 to 18 months. The second paper by Cotton and colleagues tests 6 new items addressing personal and social domains of religiosity and spirituality and finds that many patients say they have become more spiritual or religious by virtue of having HIV/AIDS, and half of the patients believe that their spirituality/religion is helping them to live longer.15 Conversely, 1 in 4 patients have felt alienated by a religious group—1 in 10 to the point of changing their place of worship. Further, the effects of HIV/AIDS on religiosity and spirituality may differ for African Americans versus Caucasians. Yi et al.12 report that over half of patients with HIV have significant depressive symptoms, and that significant depressive symptoms are associated with having greater health worries, less comfort with how one contracted HIV; more HIV-related symptoms; less social support; and lower spiritual well-being. The authors suggest that helping to address the spiritual needs of patients in the medical or community setting may serve to decrease depressive symptoms in patients with HIV. The paper by Szaflarski et al.13 reports that one-third of patients with HIV/AIDS believe that their life is better now than it was before they were diagnosed with HIV; several factors, among them spirituality, are associated with believing that life has improved, and Szaflarski and colleagues use path analysis to examine the conceptual model of how spirituality/religion is related to quality of life. They show that spirituality/religion has both direct and indirect effects on patients’ perceptions of living with HIV/AIDS, second in influence only to healthy beliefs. Mrus and colleagues compare health status, health ratings, and health values of veterans versus nonveterans with HIV. The authors show that veterans have significantly poorer health-related quality of life than nonveterans, but when controlling for demographic, clinical, spiritual/religious, and psychosocial factors, veteran status is only a significant determinant of time tradeoff and standard gamble health values. Mrus et al.14 suggest that a number of correlates of health-related quality of life, such as symptom bother, spirituality/religiosity, and depressive symptoms, could be fruitful potential targets for interventions to improve health-related quality of life. Kudel et al.16 use a statistical technique called latent profile analysis, a method of classifying patients in which class membership is inferred from the data, to examine patterns of responses to various health status and health value measures; 6 such classes are identified. The authors’ findings reinforce that health-related quality of life varies not only across patients but also across measures and suggest that health status measures and health value measures are complementary. Sherman et al.17 use qualitative interviewing techniques to look at how patients with HIV conceptualize health states central to utility assessment, such as “perfect health” and “current health.” Interestingly, many patients believe that perfect health is a mythical health state, and some question whether it is even desirable. Current health is variably interpreted as the status quo, deteriorating over time, or potentially improving with the hope of a cure. Ironson et al.18 examine the relationship between changes in spirituality/religion post-HIV diagnosis versus disease progression, as measured by changes in CD4 count and viral load. Nearly half of the patients report increases in spirituality/religion following diagnosis and, in multivariable analysis, a change in the level of spirituality/religion over 4 years is favorably associated with disease progression. As such, their findings corroborate and expand upon those of Cotton and Szaflarski and their colleagues, confirming that patients become more spiritual/religious after diagnosis and introducing (although not proving) another potential salutary effect, this one biological. Where does all of this leave us? As clinicians, the findings leave us with a better awareness of the multifaceted picture of quality of life in patients with HIV, and more specifically, of the central role that spirituality/religion plays for patients with HIV. As researchers, they leave us with new methods and constructs, and with new questions to answer. And as human beings, they leave us with a humbling sense of appreciation for the extraordinary ability of many patients to overcome adversity and make the best of living with a seemingly devastating illness.