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© 2004 American Public Health Association
RESEARCH AND PRACTICE |
Karolynn Siegel, Daniel G. Karus, and Laura Dean are with the Center for the Psychosocial Study of Health and Illness, Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, New York, NY.
Correspondence: Requests for reprints should be sent to Karolynn Siegel, PhD, Center for the Psychosocial Study of Health and Illness, Department of Sociomedical Sciences, Mailman School of Public Health, Columbia University, 100 Haven Ave, Tower 2, Suite 6A, New York, NY 10032 (e-mail: ks420{at}columbia.edu).
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ABSTRACT |
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 TOP ABSTRACT INTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Objectives. We compared level of psychosocial distress of HIV-infected women living in New York City before the advent of highly active antiretroviral therapy (HAART) with level of psychosocial distress reported by women living with the disease after the use of HAART became widespread.
Methods. Data were from HIV-positive New York City women aged 18 to 50 years, enrolled through outreach and self-referral. We compared scores on measures of psychological state and psychosocial adjustment to illness of 74 women interviewed in 1994–1996 with scores of a matched group of 74 women interviewed in 2000–2002.
Results. A significant difference between groups was found only with regard to adjustment to illness in their domestic environment, with poorer adjustment reported, on average, by women in the 2000–2002 sample.
Conclusions. Although new treatments have significantly improved the physical health of those living with HIV/AIDS, no evidence was found that these treatments significantly improved psychological health for women, regardless of history of protease inhibitor use.
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INTRODUCTION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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It is widely assumed that highly active antiretroviral therapy (HAART) has greatly altered the psychological experience of living with HIV/AIDS. HIV disease is now commonly viewed as being a chronic illness rather than acute and life-threatening as new antiviral agents dramatically reduce viral load and increase CD4 cell counts, thereby reducing the risk of opportunistic infections and extending survival.1,2 For others who do not yet need these medications, their existence nonetheless may offer psychological reassurance that effective therapies will be available when needed. As a result, it has been argued that recent treatment advances have "reinserted the word ‘hope’ into discussions about AIDS"3(p161) and afforded many infected individuals the opportunity for a "second life."4 The prospect of extended survival and reduced symptomatology has allowed many people to consider returning to work or school and to contemplate either entering into or leaving relationships.3,5 Although the effect of new treatments on pregnancy decision making remains relatively unexplored, in light of the demonstrated efficacy of the medications, HIV-positive women may now be more likely to choose to become pregnant.6
At the same time, opportunities created by new treatments have created new, potentially stressful uncertainties.4,7 For example, people benefiting from treatments may worry that returning to work will jeopardize their receipt of health insurance and their chances of regaining disability entitlements should their health again begin to deteriorate. In addition, contemplating having a baby might raise concerns that the demands of parenting could compromise one’s health.
Furthermore, a substantial proportion of infected individuals will not benefit from new antiviral medications, will do so for only a short period, or will have to terminate treatment because of intolerable side effects. People who do benefit may experience a kind of "survivor guilt" when other people do not benefit.5,7 Patients unable to tolerate the side effects may engage in self-blame.5 Furthermore, it has been argued that when treatment benefits are not realized or sustained, patients may experience hopelessness and anger or feel that they were misled about the medications’ potential efficacy and may experience even greater psychological distress than in the past.5,8
Despite much speculation about the potential effect of HAART availability on the psychosocial well-being of infected individuals, empirical investigations of this issue are recent and few. In one study, investigators interviewed a group of 173 gay/bisexual men with symptomatic HIV/AIDS before and after the availability of protease inhibitors.9 The sample as a whole showed a clinically modest but statistically significant decline on all measures of psychological distress over time after control for CD4 cell count, HIV symptoms, physical limitations, and social support. When the investigators further compared participants with improved medical markers (i.e., higher CD4 counts or lower viral load) with participants without improvement, they found no significant differences in hopelessness or quality of life. Furthermore, the improved group showed no change in depressive symptoms, whereas the unimproved group exhibited fewer depressive symptoms over time. The investigators offered several possible explanations for these counterintuitive findings: (1) individuals in the improved group were more immunosuppressed at baseline and thus despite showing improvement may have remained more cautious about their medical outlook; (2) the unanticipated opportunity for a "second life" may have created a greater sense of uncertainty; or (3) more of the individuals in the improved group were taking combination therapy, regimens of which are onerous and have distressing side effects.
In another investigation10 of 456 HIVinfected individuals (433 of whom were men) receiving antivirals, among participants who had completed at least 2 annual surveys (1 before initiating treatment with a protease inhibitor and 1 after), the percentage of patients with a score indicative of probable clinical depression declined, from 52% to 46%. Although this change was not statistically significant, there were also significant declines in scores on the total Center for Epidemiological Studies–Depression Scale (CES-D), as well as improved scores on the Depressive Affect, Positive Affect, and Somatic/Vegetative State subscales.
In still another study,11 this time of 125 HIV-infected adults (mostly homosexual or bisexual men), depressive symptoms were assessed at 6-month intervals over a 2-year period. The investigators found a pattern of declining scores (denoting less depression) on the Beck Depression Inventory over time, especially after the third assessment (12 months after baseline), by which time 51% of study participants were receiving HAART. These findings, however, must be interpreted with caution because of study limitations (e.g., substantial dropout by the 6-month assessment) and because of the different number of cases included at each assessment point (although the investigators argue that the same pattern was seen among the 27 cases for which data were available at each assessment point).
The question of whether individuals currently living with HIV experience levels of psychosocial distress comparable to the levels experienced by individuals living with the disease before the advent of HAART is an important one because the widespread perception that such distress has significantly diminished among infected individuals may prompt a reduction in mental health resources targeted to this population. In the case of HIV-infected women, this situation could have particularly unfortunate consequences, given the recently demonstrated association between depressive symptomatology and survival.12 To investigate this issue, we compared 2 matched samples of women living with HIV/AIDS, the first interviewed between 1994 and 1996 and the second interviewed between 2000 and 2002.
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METHODS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Study Design
The data presented here are from 2 samples recruited to examine women’s adaptation to living with HIV infection as a chronic illness. The first sample (n = 146) was interviewed from October 1994 to November 1996.13,14 In March 2000, we began interviewing a second group of women to compare their experiences living with HIV/AIDS with the experiences of the sample interviewed earlier, before the availability of protease inhibitors. The same recruitment methods and sources were used to obtain both samples. To protect participant confidentiality, we relied on self-referral. Community-based organizations serving HIV-infected women were given flyers describing the study and the eligibility criteria and listing a telephone number for interested individuals to call. Organizations were asked to post the flyers or to distribute them to potentially eligible women. Advertisements were also placed in the newsletters of prominent HIV-related organizations and in community-based newspapers with a general (non–HIV specific) audience. Some participants referred other participants to the study. Cooperating organizations from the 1994–1996 study were approached to assist with recruitment, and new organizations serving the same population were added to those initially contacted so as to increase the pool of available cases. In both time periods, the study protocol was approved by the sponsoring institutional review board.
In 1994–1996, quota sampling was used to obtain approximately equal numbers of African American, White, and Puerto Rican women and to ensure that within each ethnic/racial group there were approximately equal numbers of women who were asymptomatic, symptomatic, and diagnosed with AIDS. In 2000–2002, quota sampling was again used to yield an aggregate frequency distribution of women comparable to that obtained in the earlier study with regard to race/ethnicity and disease stage. Efforts were also undertaken to achieve a similar distribution with regard to 3 other variables used to match the samples: age (within 5 years), length of time since diagnosis (< 2 years, 2–5 years, and > 5 years), and injection drug use since 1977. Both groups met the same eligibility criteria.
To investigate the psychosocial effect of the availability of protease inhibitors on living with HIV, we chose to use a matched sample design rather than to attempt to follow the original (1994–1996) sample longitudinally, for a number of reasons. First, had we followed the 2000–2002 sample of women longitudinally into the HAART era and observed change in the outcome variables over time, it would be unclear what accounted for this change. For example, improvements might be attributable to the prospect of longer survival made possible by HAART and the attendant psychological benefits, but these improvements might also be accounted for by the women’s accommodating themselves to the stress of HIV infection. Another disadvantage of a longitudinal design would have been significant attrition, both owing to death and to inability to contact women who were marginally housed or homeless. Because women lost to attrition may also have been the most depressed, the sample for the follow-up assessment might have been biased to overrepresent women with better psychological adjustment. The design choice of matching the 2 samples on several variables likely to be associated with psychological and psychosocial adjustment, including time since diagnosis, avoids these potential confounds. It does, however, have the drawback that one can hope to match women in the 2 samples on only a limited number of variables. This limitation leaves open the possibility that 1 or more variables associated with the outcomes of interest, but on which the samples were not matched, might account for any observed differences.
The sampling strategy used in 2000–2002 did not ensure a precise match of participants in both groups with regard to all 5 characteristics guiding the sample selection (i.e., race/ethnicity, disease stage, age, time since diagnosis, and history of injection drug use). However, given the potential importance of all of these variables for women’s psychological and psychosocial adjustment, analyses presented here are restricted to women in 2000–2002 for whom such a precise match was found in the 1994–1996 group. Although protease inhibitors were not widely used at the time of the 1994–1996 study, 7 women in that study had received them while participating in clinical trials. Because the effect of the availability of such medications is the focus of this article, only the 139 women in 1994–1996 who had never taken protease inhibitors were used as potential matches. On the basis of these criteria, a precision match was found for a total of 74, or 61%, of the 121 women interviewed in the later era (2000–2002).
Measures
Participants in both samples completed the same battery of standardized measures to assess psychological symptomatology and psychosocial functioning and adjustment to their illness. Depressive symptomatology was assessed with the CES-D.15–20 The CES-D has a recommended cutoff point of 16 for identification of probable "caseness."18 In addition to a summary measure (Cronbach 
= .91 in 1994–96; = .94 in 2000–02), it provides subscale scores on Depressive Affect ( = .86; = .90), Positive Affect ( = .76; = .86), Somatic/Vegetative State ( = .73; = .75), and Interpersonal Distress ( = .78; = .77). Self-esteem was assessed with the 10-item Rosenberg Self-Esteem Scale (SES), a widely used measure of self-acceptance with demonstrated reliability and convergent, discriminate, and predictive validity.21,22 Acceptable reliability, as assessed with the Cronbach , was found in both the 1994–1996 ( = .86) and 2000–2002 ( = .89) samples.
The Mental Health Inventory (MHI),23 a reliable 38-item instrument, encompasses 8 hierarchically organized measures: the global Mental Health Index ( = .96; = .97); a Psychological Distress scale ( = .95; = .95) with subscales of Anxiety ( = .90; = .90), Depression ( = .86; = .84), and Loss of Behavioral/Emotional Control ( = .87; = .88); and a Psychological Well-Being scale ( = .92; = .95) with subscales of General Positive Affect ( = .91; = .94) and Emotional Ties ( = .76; = .87); and a single item assessing Life Satisfaction.
The Psychosocial Adjustment to Illness Scale (PAIS-SR) is a 46-item measure of social functioning and quality of adjustment in several clinically important domains applicable to a broad spectrum of chronic disorders.24,25 The PAIS-SR yields adjustment scores for 7 specific domains: Health Care Orientation ( = .64; = .47), Vocational Environment ( = .82; = .63), Domestic Environment ( = .64; = .69), Sexual Relationships ( = .75; = .76), Extended Family Relations ( = .66; = .72), Social Environment ( = .81; = .86), and Psychological Distress ( = .82; = .87).
Statistical Analysis
Paired t tests were used to compare scores before and after HAART on the CES-D, SES, MHI, and PAIS-SR. Comparisons of the groups’ distributions for categorical variables were made using Pearson 
2 tests or Fisher exact tests (for the association between pairs of dichotomous variables).
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RESULTS |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Subject Characteristics
Precision matching resulted in identical distributions in each sample with regard to race/ethnicity (40% African American, 28% Puerto Rican, and 31% White), disease stage (10% asymptomatic, 43% symptomatic, and 47% AIDS), any use of intravenous drugs since 1977 (46%), and length of time since the woman had first learned that she was HIV seropositive (8% < 2 years, 23% 2–5 years, and 69% > 5 years), and in virtually identical distributions with regard to age (mean ±SD for 1994–1996 = 36.4 ±5.3; mean ±SD for 2000–2002 = 36.9 ±5.1). As seen in Table 1
, although individual women in each group were not precision-matched on other sociodemographic and disease-related characteristics, both groups had similar distributions with regard to educational attainment, employment status, household income, household size, marital status, parental status, and proportion living with children. The mean number of illness-related symptoms reported by women in the 1994–1996 group was virtually identical to the number reported by women in the 2000–2002 group.
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Preliminary Analyses
Before conducting paired comparisons between groups, we used analysis of variance to compare the mean scores on each measure, of women in each time sample for whom a match was identified with the mean scores of the remaining women in that sample for whom no match was found. Analyses of women in each sample found no statistically significant differences (P < .05) between mean scores of matched and unmatched women on any scale or subscale of the CES-D, SES, MHI, or PAIS-SR. These findings indicate that in both 1994–1996 and 2000–2002, scores for women included in the paired comparisons were similar to scores for the remaining women in their respective sample who were not matched.
Paired Comparisons of Matched Cases
Depressive symptomatology.
The mean score on the summary CES-D did not differ significantly between the 2 samples; mean scores for both samples were well above the cutoff of 16 for probable caseness (Table 2). More than half of the women in both samples had scores of 16 or higher: 62% in 1994–1996 and 61% in 2000–2002 (Fisher exact test [1 df] = 0.054; P = .806). The mean scores of women in both groups also did not differ statistically with regard to the Depressive Affect, Positive Affect, Somatic/Vegetative State, or Interpersonal Distress subscales.
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Self-esteem. Mean scores on the Rosenberg Self-Esteem Scale for women in the 1994–1996 and 2000–2002 groups are also presented in Table 2
. Mean scores were virtually identical for both groups.
Mental health.
No statistically or substantively significant difference was found in mean scores on the summary Mental Health Index between women in the 1994–1996 and the 2000–2002 groups (Table 2). Similarly, we observed no difference between group means for the Psychological Distress Scale or its subscales of Anxiety, Depression, and Loss of Behavioral/Emotional Control; the Psychological Well-Being Scale or its subscales of General Positive Affect and Emotional Ties; or the Life Satisfaction item.
Psychosocial adjustment/adaptation to illness.
As with the measures of psychological adjustment, the mean scores for 6 of the 7 domains of psychosocial adjustment measured by the PAIS-SR did not differ significantly between the 1994–1996 and the 2000–2002 groups: Health Care Orientation, Vocational Environment, Sexual Relationships, Extended Family Relationships, Social Environment, and Psychological Distress (Table 3). However, a significant difference was found between the groups on the Domestic Environment subscale (paired t test [72 df] = 2.299; P = .024). On average, scores for women in the 2000–2002 group were higher than scores for women in the 1994–96 group, indicating poorer adjustment in the post-HAART group.
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Protease Inhibitor Use and Psychosocial Adjustment to Illness
None of the matched women from the 1994–1996 group had ever used protease inhibitors. Among women in the 2000–2002 group, approximately equal proportions of women had never used protease inhibitors (37%), had previously used protease inhibitors but were not currently doing so (28%), or were currently using protease inhibitors (35%). Analysis of variance found no significant differences among these 3 subgroups on any scale or subscale of the SES, the MHI, or the PAIS-SR. Similarly, no significant differences were found among the 3 groups in mean scores for the summary CES-D or for 3 of its 4 subscales. However, a significant difference was found among the 3 groups with respect to scores for the Interpersonal Distress subscale (F2,67 = 3.652; P = .031); women who had previously used protease inhibitors reported higher scores (mean ±SD = 2.09 ±1.85) than women who had never used protease inhibitors (mean ±SD = 0.93 ±1.47) or women who were currently using them (mean ±SD = 1.05 ±1.50).
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DISCUSSION |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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Our findings do not support the notion that women currently living with HIV in New York City experience lower levels of psychosocial distress than similarly situated women who were living with HIV before the availability of HAART. The only statistically significant difference observed between women before and after HAART, which was on scores for the Domestic Environment subscale of the PAIS-SR, indicates greater difficulties in this domain for women in the current era. The Domestic Environment subscale measures several aspects of family living, including finances, relationship quality, communications, and physical disabilities. Our finding of few differences was somewhat surprising, given the improved survival afforded by HAART and the diminished stigmatization of AIDS26 in the later period (2000–2002). Our findings, however, do not preclude the possibility that HAART availability has improved quality of life and well-being for HIV-infected women in other ways that the study did not measure (e.g., enhanced women’s sense of control over the disease).
At least 2 possible explanations exist for the similarity in the scores of women from the 2 eras. One is that in addition to experiencing the stressors associated with living with HIV/AIDS, many of the women in both samples, most of whom were socioeconomically disadvantaged, faced numerous other life stressors independently associated with depression27–29 (e.g., drug or alcohol addiction, violence, poverty, being the sole caregiver of 1 or more dependent children), some of which posed a more imminent threat to their psychological and physical well-being than did HIV. Indeed, many women who are at risk of contracting HIV or who are already infected do not view the disease as the most challenging stressor they contront.29–31 For example, 1 study found that for many HIVinfected women, the problems associated with violence, separation from their children, and drug use were far more disruptive than their illness.30 These multiple chronic stressors may produce such profound psychosocial distress that the availability of more effective treatments for HIV is not sufficient to meaningfully improve these women’s psychosocial well-being.
An alternative explanation for the lack of group differences in adjustment is that because of HAART, women in the 2000–2002 group may have had their expectations raised regarding the various roles that they would be able to assume or resume (i.e., regaining custody of children, going back to school or work, becoming pregnant) as a result of improved health or delayed deterioration. However, realization of these goals and dreams may remain elusive, resulting in demoralization. Furthermore, the prospect of performing these roles is also likely to raise new fears and concerns among HIV-infected adults, such as about how the stresses of these roles may compromise their health and whether they will encounter discrimination in the workplace or be unemployable after a long hiatus.32
Subgroup analyses among women in the 2000–2002 group revealed similar scores for all but 1 CES-D subscale when women were grouped on the basis of their history of protease inhibitor use (currently using, had used in the past, or never used). Had we enough cases to divide the groups into subgroups, more differences may have emerged. For example, women who had previously used protease inhibitors included those who failed to realize treatment benefits, developed drug resistance, suffered unacceptable side effects, or had insufficient social support or residential stability to sustain adherence to the treatment regimen. These subgroups might differ from each other in important ways that might be related to psychological and psychosocial adjustment; we were not able to investigate such differences because of the relatively small sample size. Similarly, women currently taking protease inhibitors might include those seeing significant benefits; those realizing only modest gains, those experiencing very distressing side effects; and those tolerating the medications well, but for whom the drug’s efficacy is low or unknown. Women who have not yet used these medications might include women who do not yet need them as well as women who may need them but reject the use of HAART because of its toxicity. Women who have not yet used protease inhibitors but who would be willing to do so in the future might also be experiencing distress as a result of not knowing whether they will benefit from these medications when they need them or whether they will be able to tolerate the side effects. The possibility of subgroup differences among these categories of infected adults should be explored in future studies with large samples.
Other limitations of the study may also account for the findings. The method used to classify women as having AIDS was based on having ever received a medical diagnosis of AIDS from a health practitioner or having a CD4 count less than 200. Some of the women with AIDS in the 2000–2002 group who are currently using or who had previously used protease inhibitor therapy may have experienced improvements in their immune systems that made them healthier at the time of the interview than the women with AIDS in the earlier period to whom they were matched. However, if this was the case, our finding of only 1 difference between the groups is even more surprising.
Despite the consistent similarity of mean scores in both groups on a wide array of measures, we cannot rule out the possibility that statistically significant differences do exist but could not be detected because of the small sample size. Still, the absence of group differences across such a wide array of measures does lend support to the conclusion that little change has occurred. Therefore, we regard these findings as suggestive and stress that they should be interpreted with caution. In any case, even if statistically significant differences were found, scores of women in both samples would still be indicative of very poor psychosocial adjustment.
Finally, the generalizability of the study findings may be limited by the fact that all of the women lived in the New York City metropolitan area, which has a relatively wide array of social services agencies and treatment facilities for HIV-infected adults. The psychological adjustment of women in more "resource-poor" regions of the country might be significantly worse. Furthermore, to the extent that New York City is more ethnically diverse and that HIV-infected women living in New York are disproportionately poorer and are more likely to be women of color than HIV-infected women elsewhere, our results might not be reproducible in other geographical locations.
Despite improved treatments for HIV/AIDS, our findings indicate that there is still a very substantial proportion of HIV-infected women who are psychologically distressed and having difficulty adjusting to illness. Yet because of a widely held, unexamined assumption that living with HIV/AIDS in the era of HAART may be significantly less distressing than before the advent of protease inhibitors, there may emerge a growing tendency to overlook the psychological needs of infected individuals or to reduce mental health resources. The data presented here indicate that a substantial proportion of HIV-infected women continue to be at risk for poor psychosocial adjustment to illness and that we must continue to develop, evaluate, and disseminate interventions aimed at improving these women’s mental health and quality of life.
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Acknowledgments |
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The study was supported in part by National Institutes of Mental Health (grants MH50414 and MH61148 to K. Siegel).
Human Participant Protection
The study protocol was approved by the Columbia Presbyterian institutional review board.
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Footnotes |
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Contributors
K. Siegel conceived the study and oversaw its implementation. L. Dean directed the study and was responsible for the fieldwork operation. D. Karus completed the data analyses. All authors helped to conceptualize ideas, interpret findings, write sections of the article, and review drafts.
Accepted for publication June 22, 2003.
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References |
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TOPABSTRACTINTRODUCTIONMETHODSRESULTSDISCUSSIONReferences |
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