Quality of Life Research 9: 931±940, 2000. Ó 2001 Kluwer Academic Publishers. Printed in the Netherlands.
931
Measuring health related quality of life among women living with HIV K.A. McDonnell1,2, A.C. Gielen1,2, A.W. Wu1,2, P. O'Campo1,3 & R. Faden1,2 School of Hygiene and Public Health, Johns Hopkins University, Baltimore, MD, USA; Departments of 2 Health Policy and Management; 3Population and Family Health Sciences
1
Accepted in revised form 30 November 2000
Abstract Although women had been under recognized in the literature on HIV/AIDS, increasing numbers of studies have focused on the lives and experiences of women living with HIV/AIDS. Areas of research in which the study of women and HIV continues to be noticeably lacking include health related quality of life (HRQOL). This paper describes HRQOL in an inner city sample of 287 HIV positive non-pregnant women, interviewed as part of a larger multi-site CDC funded study of the reproductive health of women. The average age of the respondents was 33 years and women had known their HIV status an average of 41 months. HRQOL was assessed using a 17-item modi®ed version of the Medical Outcomes Study-HIV Health Survey and demonstrated acceptable internal consistency (0.64±0.89) and variability. Women in our study were similar to other HIV-positive female samples and reported lower levels of well-being and functioning than some HIV-positive male samples. Women's responses to individual items and areas of potential need for health care are discussed. Examination of HRQOL in women with HIV can aid in the comparison of how women and men are aected by HIV and can help health care professionals identify needed services and include possible interventions to promote quality of life. Key words: HIV/AIDS, Measurement, Quality of life, Women
Introduction Over the past decade the status of HIV and AIDS among women living in the United States (US) has risen from an anomaly to that of a major public health problem. While segments of the population have seen decreasing HIV/AIDS incidence rates, the number of women in the US living with HIV/ AIDS is increasing steadily. National surveillance ®gures indicate that women now account for 23% of all newly diagnosed AIDS cases in the US [1], furthermore, women living with HIV/AIDS are disproportionally low income and African-American or Hispanic [1, 2]. Although African-American and Hispanic women constitute less than one®fth of the US female population, they represent Portions of the paper were presented at the National Conference on Women and HIV, Los Angeles, May 1997.
four-®fths (80%) of all US women living with AIDS [1]. Among women living with HIV, the mode of transmission is primarily through shared blood products from intravenous drug use, or unprotected sex with a known intravenous drug user. The Center for Disease Control and Prevention estimates that among cumulative AIDS cases in African-American women, 47% were infected through heterosexual contact and 49% through injecting drug use [1]. Although no cure exists today, pharmacological measures have been developed that can prolong life for people living with HIV (e.g. AZT and protease inhibitors). Increasing life expectancy for people living with HIV makes quality of life issues critically important for patients and for providers of medical and social services. Many studies have evaluated treatment outcomes using quality of life measures and while researchers are examining the
932 quality of life among people living with HIV [3±33], relatively limited attention has been paid to the quality of life among women with HIV. Health related quality of life (HRQOL) is a multidimensional concept that includes performance of social roles, physiological status, emotional status, cognitive functioning, and a sense of well-being or general life satisfaction [34]. The concept of HRQOL can be dierentiated from the broader concept of `quality of life' in that the latter usually denotes a global measure that encompasses all aspects of human experience and a person's assessment of that experience [35], whereas, HRQOL has a narrower focus on those aspects that can be readily aected by health care. Within the domain of HIV investigation, HRQOL is a useful component of treatment assessment and can aid researchers, clinicians and those living with HIV to better understand the eects of disease and treatment [21]. There are a variety of methods used to measure HRQOL among those with HIV. The majority of the studies employ a standardized battery of measures that are either self-administered by the patient or by an interviewer. Wu and Rubin [30, 31] compiled an overview of the measurement instruments used in HIV disease. These measures have been well studied among homosexual/bisexual, Caucasian, educated males [4, 5, 13, 14, 26] although, recently an increasing number of studies have included a small proportion of women [7, 8, 10, 20, 27], or all female samples [9, 19, 22, 23], and/or AfricanAmerican samples [11, 12, 24]. Often the life circumstances of HIV positive women can be characterized as being a young single parent, caring for children, some of whom may also be infected and aected as well [36, 37], while also dealing with substance abuse of their own or their partner's [38]. Although HIV-positive women's life circumstances can be expected to dier substantially from males living with HIV and they represent an increasing proportion of the AIDS cases, a few of the studies have included women in their samples, and furthermore, only few gender speci®c analyses have been presented. We could ®nd only a handful that examined QOL in an exclusively non-pregnant female population [15, 19, 22, 23]; Smith et al. [22] administered a widely used standardized scale and proposed that women would tend to score lower than men on all
dimensions of HRQOL, even when the presence of symptoms is controlled. The purpose of the present study is to examine the reliability and validity of a brief HRQOL measure derived from the MOS-HIV and used in a large, inner city sample of HIV-positive, nonpregnant women. We hypothesize that women in our study would exhibit similar levels of HRQOL to other female HIV samples, and lower levels of functioning and well-being compared to samples of HIV positive males. We were also interested in examining item scores to identify potential areas of need that could form the basis for interventions. Methods Subjects and procedures The data described here are part of a multi-site study funded by the Centers for Disease Control and Prevention to develop and evaluate interventions to prevent HIV infection in women and to prevent HIV transmission to infants. A total of 322 HIV-infected women were enrolled between 7 April 1993 and 21 June 1995 from clinic and community sites in Baltimore City. The majority of the participants were recruited from two hospital based clinic settings ± one adult outpatient HIV clinic (n 213, 66%) and one pediatric outpatient clinic serving children of infected women (n 59, 18%). The remaining women were referred from a community based outpatient HIV-treatment clinic (n 11, 3%) or were referred informally by other project participants and by outreach workers employed by the project (n 39, 12%). The HIV status of all participants was con®rmed either by medical records or, if records were unavailable, an HIV test was conducted. Because the HRQOL measure was added to the interview instrument after recruitment began, the study sample consists of 287 (89%) of the participants in the entire study. No statistically signi®cant dierences with respect to sociodemographic variables (i.e. age, race, education level) were found between the two groups of women. Women were eligible for the study if they were 18±44 years of age, not currently pregnant, and physically and mentally able to participate. A
933 study interviewer described the study and obtained written consent in accord with the study protocol approved by the hospital's IRB. To protect patients' con®dentiality, names of women who declined to participate were not retained in study records. Because women could be approached more than once over the course of the two year recruitment period, it was not possible to calculate a refusal rate. To examine the extent to which our sample was similar to women receiving primary HIV care, we compared the demographic characteristics of our sample to all women enrolled for care at the adult HIV clinic during our recruitment period. There were no signi®cant dierences between the two groups when compared on such demographic variables as age, race, and time infected with HIV. All study participants were interviewed in a private oce near the hospital. The interview lasted from 40 to 90 min and women were paid $20. Child care was available for those who needed it. Measures Medical Outcomes Study-HIV HRQOL was measured with a modi®cation of the Medical Outcomes Study HIV Health Survey (MOS-HIV) [33]. The MOS-HIV is a brief comprehensive instrument that is used to assess aspects of functional status and well-being in persons with HIV [33]. In the present study, the MOS-HIV was interview administered and included scales and items to assess the women's ratings on ten dimensions of functioning and well-being. These included physical, cognitive, social, and role functioning; mental health; health distress; and overall quality of life. These scales have been demonstrated to be internally consistent, have convergent and discriminant validity, have the ability to detect clinically important dierences between patients who are asymptomatic compared to those who are symptomatic and to be related to a number of symptoms [18, 29, 32]. Due to time constraints, not every subscale is fully represented. Speci®c items were chosen for inclusion by the study team after conducting qualitative interviews with women and HIV primary care providers that helped us identify which QOL issues were likely to be most salient to women. All items referred to how women were doing in the past four weeks.
All six of the original MOS-HIV physical functioning scale items were included: (1) vigorous activities; (2) moderate activities; (3) climbing a ¯ight of stairs; (4) walking a few blocks; (5) bending; and (6) daily activities such as bathing or dressing. Respondents are asked to indicate if they had been limited in the extent to which they perform each of these activities in the past four weeks. The cognitive functioning scale included two items that asked women how often did they: (1) forget things that happened recently, and (2) have trouble keeping their attention on any activity for long. Role functioning was assessed by a single item that asked women how often their health had kept them from working at a job, doing work around the house, or taking care of children. Taking care of children was considered an important addition to the item and was included as a result of thematic analyses of 51 qualitative interviews with HIV positive women that preceded the larger intervention study. Social functioning was measured by a single item that asked women how often their health limited social activities such as visiting friends and relatives. Mental health well being was assessed using four items that asked women how often they felt: (1) downhearted and blue; (2) so down in the dumps nothing could cheer them up; (3) calm; and (4) happy. Health distress included two items: (1) feeling weighted down by health problems; and (2) feeling afraid because of their health. All of the above measures used a 6-level response format with anchors of the set 1= to all of the time and 6= none of the time. These measures were scored as follows. Item scores were inverted where necessary so that higher scores always re¯ect a better sense of health status. For each scale, responses to questions are summed and scores are converted to a 0 to 100 scale, with 100 indicating the best or highest level functioning or well-being. Internal consistency was assessed by the use Cronbach's a values computed for each scale. A single item was used to assess women's overall quality of life. Women were asked `How was your quality of life been during the past four weeks. That is, how have things been going for you?' Response options were on a ®ve-point scale that ranged from very bad, could hardly be worse to very well, could hardly be better and the score was converted to a 0 to 100 scale.
934 Sociodemographic and HIV-related characteristics Data on age, education, current marital status, employment, race/ethnicity, and current living situation were obtained from women at the time of enrollment. HIV related factors included self-reported mode of infection (needles, heterosexual sexual contact, both needles and sex, blood transfusion, do not know, or other mode) and how long the woman had known she was HIV positive. For 260 (91%) of the women, CD4 counts within the last 3 months were available, either by self-report (n 232) or from medical chart review (n 28); among a random set of data, self-reported CD4 counts were found to be highly correlated (0.90) with those found in the medical charts. Analyses We examined the distribution of scores on the MOS-HIV, the internal consistency of the multiitem scales, the correlation between the scales in our entire sample and correlation between the sociodemographic and HIV related characteristics and HRQOL scales. Those comparisons that are signi®cant at the a priori p < 0.05 are presented in the text. We then compared the HRQOL scores of the women in our study with other published samples of HIV-infected patients. Lastly, we examined the distribution of responses on individual items comprising the MOS-HIV scales. The ®rst comparison to another demographically similar female sample used a study conducted by Smith et al. [22]. Smith et al.'s [22] study included 202 HIV-infected women without AIDS who were receiving care at the Kings County Hospital or SUNY Health Sciences Center in Brooklyn, New York and self-administered the 20 item version of the Medical Outcomes Study survey instrument. In this sample, the average age was 33.5 years, 71% were African-American, and 135 (67%) of the women were asymptomatic. A second sociodemographically similar female and male sample used for comparison purposes was Revicki et al.'s [18] study that examined the HRQOL among a total of 160 HIV-infected patients, 34% of which were female and 65% African-American. These subjects were recruited from three HIV clinics in the Baltimore±Washington, DC area. Data from the 53 women and 109 men in the sample using only those items of the
MOS-HIV that were employed in our study were used for separate analysis in this paper. The ®nal comparison sample, examines the HRQOL among another group of HIV infected individuals, namely MSM. This sample is from a 1991 study conducted by Wu et al. [33] that used the MOS-HIV with 117 (73 asymptomatic and 44 symptomatic) HIV-infected predominantly male (98%) educated sample (average education level 15.2 years). Post-hoc t-tests were conducted between the mean levels of HRQOL of our sample of HIV positive women and those with available measures of dispersion [18, 33]. Results Sociodemographic characteristics Almost all of the women in our sample were African-American (94%), received some form of government welfare payment in the past year (81%), and lived in non-temporary housing (94%). Mean age was 33.1 years (SD 6.27). Approximately a quarter of the women (24%) were employed at some time during the past year. A slight majority of the women (55%) did not graduate from high school with either a formal diploma or a GED, and a majority of the women had never been married (63%). The most prevalent self-reported mode of HIV transmission was heterosexual sexual contact (46%), followed by use of needles (25%) and a combination of sex and needles (22%). On average, women reported knowing that they were HIV infected for 41.3 months (SD 29.9). For those women who had available CD4 counts in the last 3 months (n 260), 64 (25%) had CD4 counts O200. MOS-HIV scores Table 1 presents the number of items we used for each scale (out of the total number in the original measure), mean value, standard deviation, percentage of respondents scoring the minimum (score of 0) and the maximum (score of 100). The internal consistency of the scale (Cronbach's a) is presented for each of the multi-item measures. Ceiling and ¯oor eects were not important except for social function and role function, where more
935 Table 1. Distribution of scores and internal consistency for HRQOL domains HRQOL domains
Number of items used
Mean (SD)
Min. (%)
Max. (%)
Internal consistency
Physical function Social function Cognitive function Role function Mental health Health distress Overall QOL
6/6* 1/1 2/4 1/2 4/5 2/4 1/1
63.8 78.2 59.8 76.1 56.2 63.5 60.4
11.5 4.9 12.6 5.3 1.1 4.6 5.3
41.6 56.8 29.4 54.9 3.5 21.5 15.4
0.89 ± 0.75 ± 0.64 0.70 ±
(37.7) (30.0) (34.7) (31.8) (22.0) (30.0) (25.4)
* The second number is the total number of items in the original MOS-HIV scale.
than one-half of the women reported the highest level of functioning. Selected sociodemographic characteristics were found to be associated with HRQOL subscales. Women's employment in the past year was associated with higher reported levels of physical functioning (F 9.07; p < 0.05), cognitive functioning (F 4.71; p < 0.05), quality of life (F 3.01; p < 0.05) and lowered health distress (F 3.40; p < 0.05). Women's age was found to be negatively correlated to the level of physical functioning (r )0.16). Having at least a high school education was associated with higher levels of cognitive functioning (F 4.32; p < 0.05), quality of life (F 11.00; p < 0.05) and lowered health distress (F 5.45; p < 0.05). Women with CD4 counts greater than 200 reported higher levels of physical functioning (F 10.15; p < 0.05) and increased quality of life (F 5.73; p < 0.05) than women with CD4 counts less than or equal to 200 (See Table 3). Time HIV positive, race, receiving monies from social services, and marital status were not signi®cantly related to HRQOL scales. As the measure used was a modi®ed version of an existing one, we examined the inter-correlation
among the scales to assess the convergent and discriminant validity of the scales used. Table 2 presents inter-correlation coecients among the scales. Convergent validity was shown as all scales were correlated at a statistically signi®cant level with one another. However, the scales used were found to discriminate between dierent constructs as shown by the moderate level of association between role function (r 0.19 and 0.21) mental health and overall QOL, respectively. The shortened version of the MOS-HIV scales that was used in this study also correlated in the moderate to exceptional range, using the standards of Robinson et al. [39] with the original MOS-HIV scale, in a comparison using data from the Revicki et al. [18] study (data not shown). Comparison with other samples Table 3 presents the mean scale scores from our sample and the three comparison samples. Compared to women in Smith's sample, women in our sample were comparable on all similar HRQOL scales except for physical function, where our
Table 2. Correlation coecients among MOS-HIV scales in HIV-infected women HRQOL area
Physical function (PF) Social function (SF) Cognitive function (CF) Role function (RF) Mental health (MH) Health distress (HD) Overall health (OH)
HRQOL area PF
SF
CF
RF
MH
HD
OH
± 0.49 0.41 0.51 0.28 0.47 0.32
± 0.32 0.60 0.30 0.37 0.26
± 0.41 0.37 0.47 0.30
± 0.21 0.42 0.19
± 0.45 0.45
± 0.43
±
936 Table 3. Comparison of HRQOL mean scores with other HIV-infected samples HRQOL area
Physical function Social function Role function Cognitive function Mental health Health distress Quality of life
Present study female sample
Smith et al. (1996) Female sample
Revicki et al.a (1995)
Wu et al. (1991) 98% Male
CD4 O 200 CD4 > 200 Total (n = 64) (n = 196) (n = 260)
Asym Sym (n = 135) (n = 53)
Female (n = 53)
Male (n = 109)
Asym
Sym
86.8 85.8 65.0 NA 59.6 NA NA
48.1 60.4 52.8 61.7 54.2 51.1 57.5
62.0c 68.1 60.0 71.0c 58.2 61.6c 61.5
95.6 98.6 98.6 91.0 73.0 81.3 76.0
85.6 90.5 84.1 82.7 71.1 76.3 67.0
50.26 74.38 69.06 62.86 55.16 58.28 53.97
67.18b 79.18 77.45 67.85 57.45 64.64 62.69b
63.00 78.00 75.38 66.63 56.88 63.08 60.56
72.2 72.2 55.8 NA 54.8 NA NA
NA: Not applicable Scores were recalculated using only the reduced set of items used in the present study. b Statistically signi®cant (p < 0.05) dierences between CD4 O 200 and CD4 > 200. c Statistically signi®cant (p < 0.05) dierences between the Revicki et al. (18) male (n = 109) and female (n = 53) samples. a
women with CD4 counts greater than 200 scored lower than the symptomatic women in Smith et al.'s [22] sample. Scores from women in our sample were similar to women in Revicki et al.'s [18] study for Cognitive Function, Mental Health and Quality of Life, although our sample scored signi®cantly higher for Physical (t 2.81; p < 0.05), Social (t 3.64; p < 0.05) and Role (t 3.13; p < 0.05) Functioning and Health Distress (t 2.73; p < 0.05). All three female samples were similar in their reported level of HRQOL and to those found in the male sample used in Revicki et al. [18]. Direct comparisons of our female sample with Revicki et al.'s male sample indicate that our sample was comparable with two exceptions; our women displayed higher levels of role (t 3.02; p < 0.05) and social (t 2.73; p < 0.05) functioning. Additional comparative analyses were conducted within the Revicki et al. [18], between the male (n 109) and female (n 53) samples to examine gender dierences in HRQOL. In all of the MOS-HIV components of HRQOL, the male sample consistently scored at a higher level than the female sample with statistically signi®cant (p < 0.05) dierences found within the physical functioning, cognitive functioning and health distress scales. All three of those studies assessed HRQOL among a predominantly African-American inner city group of HIV infected individuals. Regardless of gender, our sample and the male and female samples from the Revicki et al. [18] study scored substantially lower (p < 0.05) levels of HRQOL than the male sample
studied by Wu et al. [33]. After stratifying by women's CD4 count, our women with CD4 counts greater than 200 reported signi®cantly lower levels of HRQOL than the immuno-compromised Wu et al. [33] symptomatic sample on all scales except for role functioning (t )1.79; p > 0.05) and overall quality of life (t )1.23; p > 0.05). The women in the present study are demographically comparable to the women in both the Smith et al. [22] and Revicki et al. [18] samples. The sample used in the Wu et al. [33] study was predominantly male, well educated and the primary mode of HIV transmission was men who have sex with men (MSM), which is in contrast to the other studies which have included HIVinfected women and had lower educational attainment levels and HIV transmission was predominately due to male to female sexual contact or intravenous drug use. Also, the sample used by Wu et al. [33] was recruited from participants in two clinical trials in southern California. None of the studies of women used clinical trial enrollment as a sampling base, although 28% of the women in our sample reported being involved in HIV related studies. Individual item responses We examined the response distributions for speci®c items to help characterize the HRQOL of women living with HIV as well as to identify areas of potential need for health care intervention. The
937 physical functioning scale looked at women's selfreported limitations on various levels of physical activity. Forty-four percent of the women reported being limited in engaging in either vigorous or moderate forms of activity. A scant majority (51%) of the women reported that they were limited in their ability to walk a few blocks or climb a ¯ight of stairs and limitations were related to women's sociodemographic characteristics of increased age (r 0.16), being unemployed (r 0.16), and CD4 count O200 (r 0.13). When asked about their ability to complete daily activities such as bathing or dressing, 19% of the women reported that they were limited in performing these activities and this limitation was negatively related to women's CD4 count (r 0.17). Responses to the role and the social functioning items showed minimal limitations in these areas. A minority of the women (10%) reported limitations in performing social activities and in performing their usual roles (14%) all of most of the time in the past 4 weeks. Women reported having major limitations in the area of cognitive functioning. A majority of the women (60%), reported that they forgot things some or all of the time in the past 4 weeks and this ®nding was negatively related to women's level of education (r 0.14). Half of the respondents reported having negative emotions, being down hearted and blue, some or all of the time in the last 4 weeks. When asked how often they were so down in the dumps that they felt there was no way to get out, almost half of the women (45%) reported feeling this way some to all of the time. Conversely, when asked about positive emotions, approximately two-thirds of the women reported being calm (66%) or happy (73%) some to all of the time. A majority of the women (52%) reported being weighed down by health problems or being afraid because of their health (55%) some to all of the time in the past 4 weeks and increased fear was found to be related women lack of employment in the last year (r 0.19). When asked about their overall quality of life in the past 4 weeks, 13% of the women scored at the lowest end of the scale (very bad, could hardly be worse) and 45% scored at the highest end of the scale (very well, could hardly be better) and the remainder scored in the middle range of responses. Women's level of quality of life was found to be positively related to women's level of education (r 0.13) and women's CD4 count
(r 0.14). Women's race, time HIV positive, marital status, and receiving money from social services were not found to be signi®cantly related to individual item responses. Discussion The goals of this study were to extend our understanding of the HRQOL among women with HIV by examining the validity and reliability of a brief HRQOL measure used in a large, inner city sample of HIV-positive women, to compare our ®ndings with other HIV positive samples, and to investigate the potential areas of need for improving the HRQOL among women living with HIV. The results indicated that the abbreviated version of the MOS-HIV that was used in the study demonstrated adequate internal consistency. Although all of the scales were found to be associated with one another, the level of the associations were only little to moderate and therefore do discriminate between the various components of HRQOL measured. This brief measure of HRQOL was also found to be adequately associated with the full MOS-HIV as evidenced by the signi®cant correlation coecients that were calculated from the Revicki et al. [18] study. The shorter version of the scales used in our study were found to have acceptable levels of association with the full scales that have been used in other studies allowing comparisons to those previously conducted. Examination of individual scale items revealed that women were severely compromised in various components of HRQOL. For example, a majority of the women were found to be limited in their level of physical functioning; in addition, 19% of the women reported being limited in the performance of simple everyday activities such as bathing and dressing. Clinicians who work with women with HIV need to be aware of these potential limitations and assess their patients' needs for supplemental services such as physical and occupational therapy. This study found that a slight majority of the women were afraid because of their health or were bothered by their health problems. The role that depression plays in the lives of women living with HIV is an area in need of increased study [20]. We found that a large proportion of women felt negative emotions some or all
938 of the time. This study did not ascertain the stimulus for the present experience of negative emotions, and therefore cannot make any conclusive statements regarding a causal role of HIV on depression and compromised HRQOL. On the other hand, it would also be bene®cial to examine the role that the experience of positive emotions plays in the lives of women living with HIV as it appears that women's experience of negative emotions could be buered by the experience of positive emotions, such as being happy or calm. However, similar to ®ndings from a previous study [25], our results indicate that sociodemographic characteristics were not found to be consistently related to women's HRQOL. Our sample of women's level of CD4 count was found to be signi®cantly related to the reported levels of two HRQOL scales (physical functioning and quality of life) and therefore provides modest support for the construct validity of these HRQOL scales. However, women's CD4 counts were not signi®cantly related to the other HRQOL scales. These non-signi®cant associations between CD4 count and HRQOL have been shown to exist in a variety of HIV and HRQOL studies [6, 10, 17]. Overall, it appears that each component of HRQOL, be it functioning or well-being, represents an area in need of improvement. Further research is needed to examine the associations of the components of HRQOL with other aspects of the lives of HIVpositive women. Our study and others conducted previously that examined HRQOL among a group of predominantly African-American women living with HIV indicate that these women report similar levels of HRQOL relative to a sociodemographically similar group of men living with HIV. In all of these samples the primary mode of transmission was IDU, unprotected sex with an IDU or heterosexual transmission. Taken as a whole, our sample, the Smith et al. [22], and the Revicki et al. [18] samples scored substantially lower than a predominantly male sample in which the primary mode of HIV transmission was MSM, even when symptomatic status was taken into account. As a ®rst step these results indicate that the role of HIV may dier depending on the context of people's lives and that women with HIV should be studied separately or over sampled in future studies to gain a better understanding of the dierences in
HRQOL that may exist between males and females living with HIV. One of the bene®ts of the study was the use of the brief HRQOL measure that was modi®ed from the MOS-HIV scale that has been used with HIV patient samples. The MOS-HIV was created to be a comprehensive measure of HRQOL to assess aspects of functional status and well-being in persons with HIV disease, speci®cally for the use in multicenter AIDS clinical trials [33]. The full MOS-HIV survey instrument has been extensively validated, found to be robust to self and interview modes of administration [28], and to be not only a reliable measure of HRQOL, but useful due to the ease of interpretation of scores [29]. Within our sample, the use of a single item measure to assess the role and social functioning area of HRQOL, did lead to the ®nding of substantial ceiling eects. Ceiling eects using a HRQOL measure have been found previously [8] when examining the HRQOL among 215 sero-positive individuals. The use of single item measures is also not preferable to multi-item scale constructs as the level of internal consistency and reliability cannot be adequately assessed across studies. The role functioning item was modi®ed from the original MOS-HIV wording to include the role of `taking care of children.' The rami®cations of this modi®cation are unknown, however the role of a woman as a mother surfaced as an important and integral aspect of women's lives that became apparent during qualitative interviews conducted prior to the larger intervention study. Therefore, the wording of the item was modi®ed to address a role of women that they had discussed and had been missing in the original version of the MOS-HIV. Lastly, with regard to the speci®c measurement scales, the mental health scale achieved a level of internal consistency at 0.64, while not optimal, it is represents a `modest reliability' especially in the `early stages of research' [40]. Our study and those chosen for inclusion for comparison purposes were conducted prior to the inception of the powerful pharmacological regimen encompassing HAART and therefore can provide a basis from which to compare future studies. A potential limitation to the comparison study ®ndings is the use of dierent versions of MOS scales. Although the measures that were utilized in the comparison studies were not
939 identical, only those scales that contained similarly constructed items were utilized for comparison purposes. However, the continued use of a widely used measurement tool such as the MOS-HIV will be bene®cial in the determination of the eect current and future pharmacological advances will have on the lives of those living with HIV. Although predictors of women's level of HRQOL cannot be addressed within the con®nes of the present study, the cross-sectional design provides an adequate starting point from which the ®eld of HRQOL among women living with HIV can grow and expand. The information available that looks exclusively at the HRQOL of women with HIV is limited. This study sought to provide baseline, cross-sectional HRQOL scores using an instrument that has been used with a variety of patient populations. The use of widely utilized and evaluated measurement tools can be viewed as an asset to the ®eld of HRQOL, enabling the use of posthoc statistical analyses to discern the relative impact of HIV on a cross section of those aected by the HIV epidemic. There is now growing evidence that HRQOL constitutes an important area of research among women living with HIV and in need of further investigation. The examination into the domain of HRQOL among women with HIV can not only aid in the comparison of how women and men are aected by HIV, but more importantly, knowing the eects of disease on women's quality of life can help health care professionals identify services that patients need, and to consider a wider range of interventions that are tailored to women's needs. Acknowledgements This work was supported by Cooperative Agreement #U65/CCU306934 from the Centers for Disease Control and Prevention. The authors gratefully acknowledge the assistance of the women, health care providers and project sta who participated in this study.
2. 3.
4. 5.
6. 7. 8. 9.
10. 11.
12.
13. 14.
15. 16.
17.
References 1. Center for Disease Control and Prevention. HIV/AIDS Surveillance Report: US HIV and AIDS cases reported
18.
through December 1999. Year End Edition 2000; 11: 1±45. Quinn SC. AIDS and the African-American woman: The triple burden of race, class, and gender. Health Education Quarterly 1993; 20: 305±320. Carretero MD, Burgess AD, Soler P, Soler M, Catalan J. Reliability and validity of an HIV-speci®c health related quality of life measure for use with injecting drug users. AIDS; 10: 1699±1705. Cleary PD, Fowler FJ, Weissman J, et al. Health related quality of life among persons with AIDS. Med Care 1993; 31: 569±580. Copfer AE, Ampel NM, Hughes TE, et al. The use of two measures of health-related quality of life in HIV-infected individuals: A cross-sectional comparison. Qual Life Res 1996; 5: 281±286. Franchi D, Wenzel RP. Measuring health related quality of life among patients infected with human immunode®ciency virus. Clin Infect Dis 1998; 26: 20±26. Friedland J, Renwick R, McColl M. Coping and social support as determinants of quality of life in HIV/AIDS. AIDS Care 1996; 8: 15±31. Holmes WC, Shea JA. Two approaches to measuring quality of life in the HIV/AIDS population: HAT-Qol and MOS-HIV. Qual Life Res 1999; 8: 515±527. Larrabee KD, Monga M, Eriksen N, Helfgott A. Quality of life assessment in pregnant women with the human immunode®ciency virus. Obstetrics & Gynecology 1996; 88: 1016±1020. Lenderking WR, Testa MA, Katzenstein D, Hammer S. Measuring quality of life in early HIV disease: The modular approach. Qual Life Res 1997; 6: 515±530. Linn JG, Anema MG, Hodess S, Sharpe C, Cain VA. Perceived health, HIV illness, and mental distress in African American clients of AIDS counseling centers. JANAC 1996; 7: 43±51. Linn JG, Poku KA, Cain VA, Holzapfel KM, Crawford DF. Psychosocial outcomes of HIV illness in male and female African American clients. Social Work in Health Care 1995; 21: 43±60. Lubeck DP, Fries JF. Changes in quality of life among persons with HIV infection. Qual Life Res 1992; 1: 359±366. Lutendorf S, Antoni MH, Schneiderman N, Fletcher MA. Psychosocial counseling to improve quality of life in HIV infection. Patient Education and Counseling 1994; 24: 217±235. Novotna L, Wilson TE, Minko HL, et al. Predictors and risk taking consequences of drug use among HIV-infected women. J AIDS Human Retrovirol 1999; 20: 502±507. Nunes JA, Raymond SJ, Nicholas PK, Leuner JD, Webster A. Social support, quality of life, immune function, and health in persons living with HIV. J Holistic Nursing 1995; 13: 174±198. Piette J, Wachtel TJ, Mor V, Mayer K. The impact of age on the quality of life in persons with HIV infection. J Aging and Health 1995; 7: 163±178. Revicki DA, Wu AW, Brown R. Change in clinical status, health status, and health utility outcomes in HIV-infected patients. Med Care 1995; 33: AS173±AS182.
940 19. Sarna L, van Servellen G, Padilla G, Brecht ML. Quality of life in women with symptomatic HIV/AIDS. J Advanced Nursing 1999; 30: 597±605. 20. Semple SJ, Patterson TL, Straits-Troster K, Atkinson JH, McCutchan JA, Grant I. Social and psychological characteristics of HIV infected women and gay men. HIV Neurobehavioral Research Center (HNRC Group). Women Health 1996; 24: 17±41. 21. Shumaker SA, Ellis S, Naughton M. Assessing health related quality of life in HIV disease: Key measurement issues. Qual Life Res 1997; 6: 475±480. 22. Smith MY, Feldman J, Kelly P, DeHovitz JA, Chirgwin K, Minko H. Health-related quality of life of HIV-infected women: Evidence for the reliability, validity and responsiveness of the Medical Outcomes Study Short Form 20. Qual Life Res 1996; 5: 47±55. 23. Sowell RL, Seals BF, Moneyham L, Demi A, Cohen L, Brake S. Quality of life in HIV-infected women in the South-Eastern United States. AIDS Care 1997; 9: 501±512. 24. Spalding AD. Racial minorities and other high-risk groups with HIV and AIDS at increased risk for psychosocial adjustment problems in association with health locus of control orientation. Social Work in Health Care 1995; 21: 81±114. 25. Swindells S, Mohr J, Justis JC, et al. Quality of life in patients with human immunode®ciency virus infection: Impact of social support, coping style and hopelessness. Int J STD and AIDS 1999; 10: 383±391. 26. Tsevat J, Solzan JG, Kuntz KM, et al. Health values of patients infected with the human immunode®ciency virus. Med Care 1996; 34: 44±57. 27. Wachtel T, Piette J, Mor V, Stein M, Fleishman J, Carpenter C. Quality of life in persons with human immunode®ciency virus infection: Measurement by the medical outcomes study instrument. Ann Internal Med 1992; 116: 129±137. 28. Wu AW, Jacobson DL, Berzon RA, et al. The eect of mode of administration on Medical Outcomes Study health ratings and EuroQol scores in AIDS. Qual Life Res 1997; 6: 3±10. 29. Wu AW, Revicki DA, Malitz FE. Evidence for the reliability, validity and usefulness of the Medical Outcomes
30. 31. 32.
33.
34. 35. 36. 37.
38. 39.
40.
Study HIV Health Survey (MOS-HIV). Qual Life Res 1997; 6: 481±493. Wu AW, Rubin WC. Approaches to health status assessment in HIV disease: Overview of the conference. Psychol Health 1994; 9: 1±18. Wu AW, Rubin WC. Measuring health status and quality of life in HIV and AIDS. Psychol Health 1992; 6: 251±264. Wu AW, Rubin WC, Mathews WC, et al. Functional status and well-being in a placebo-controlled trial of Zidovudine in early symptomatic HIV infection. J AIDS 1993; 6: 452±458. Wu AW, Rubin HR, Mathews WC, et al. A health status questionnaire using 30 items from the Medical Outcomes Study: Preliminary validation in persons with early HIV infection. Med Care 1991; 29: 786±798. Farquhar M. De®nitions of quality of life: A taxonomy. J Advanced Nursing 1995; 22: 502±508. Andrews FM, Withey SB. Social Indicators of Well-being. New York: Plenum Press, 1976. Chu S, Buehler J, Berkelman R. Impact of the human immunode®ciency virus epidemic on mortality in women of reproductive age, United States. JAMA 1990; 264: 225±229. American Psychological Association. Research Agenda for Psychosocial and Behavioral Factors in Women's Health. Washington, DC: American Psychological Association, 1995. Fowler MG, Melnick SL, Mathieson BJ. Women and HIV: Epidemiology and global perspective. Obstet Gynecol Clinics of North America 1997; 24: 705±729. Robinson JP, Shaver PR, Wrightman LS. Measures of Personality and Social Psychological Attitudes, Vol. 1, In: Measures of Social Psychological Attitudes Series. New York: Academic Press, Inc., 1991. Nunnally JC. Psychometric Theory. New York: McGrawHill, 1967.
Address for correspondence: Karen A. McDonnell, School of Hygiene and Public Health, Johns Hopkins University, 624 N Broadway, Room 753, Baltimore, MD 21205, USA Phone: +1-410-955-1924; Fax: +1-410-955-7241 E-mail:
[email protected]
