No previous study has compared adherence by women to HIV primary care and gynecological visits simultaneously using actual clinic records data. Although there is a relatively low rate of scheduled primary care clinic visit adherence in our population of HIV-infected women, the rate of gynecological clinic visit adherence is significantly lower than the rate of primary care visit adherence in the same population of women. It is important to note that this study was done in a facility where the gynecological specialty services are located in the same clinic facility, which is intended to facilitate comprehensive care. However, these results demonstrate that there remain what would appear to be substantial barriers to gynecological care in HIV-infected women. The high rate of missed gynecology appointments indicates a potentially serious healthcare diagnosis and management problem, especially given the high rates of gynecology-associated illness known to occur in this population.
Gynecological healthcare is an important component of ongoing HIV care in women. A study of 262 HIV-infected women found that 46.9% had at least one incident gynecological condition with serial assessment, including such conditions as vulvovaginal candidiasis, oncogenic human papillomavirus (HPV), abnormal Pap smears, genital warts, and amenorrhea.11
In a study of 65 women admitted to an inpatient AIDS service, 83% had coexisting gynecological disease, although only 9% were admitted with a primary gynecological problem.3
The prevalence of cervical dysplasia in HIV-infected women varies from 11% to 60%,12–14
rates approximately 10-fold higher than that observed among HIV-uninfected women.15
Studies have shown that Pap smear sensitivity and specificity are comparable in HIV-infected and uninfected women,12
although mild cytological atypia, such as atypical cells of undetermined significance (ASCUS) and inflammation, are more likely to be associated with dysplasia in HIV-infected women than in HIV-uninfected women and should prompt follow-up, generally including colposcopic examination.4,16
There is a clearly increased prevalence of squamous intraepithelial lesions (SIL) among HIV-infected women, and diagnosis of SIL in the HIV-infected woman always warrants colposcopic examination.4,5,12
Confirmation of a high-grade cervical lesion mandates excisional treatment to prevent progression to invasive cervical cancer, an AIDS-defining illness. Furthermore, unlike other AIDS-associated infections, effective combination antiretroviral therapy and immune reconstitution are not clearly associated with reduction or regression of HPV-related lesions, including lower genital tract dysplasia, although study findings are mixed.17,18
Few studies have examined adherence with gynecological visits among HIV-positive women. The prospective Swiss HIV Cohort Study (SHCS) examined factors associated with frequency of gynecological follow-up, including cervical cancer screening, in a cohort of 2,186 HIV-positive women using self-reported data; they found that only 45% of those women reported seeing a gynecologist within the previous 6 months, although 82% of the women reported having a Pap smear. Predictors for fewer gynecological examinations and Pap smears were older age, nonwhite ethnicity, current IVDU, lower education, lower CD4 counts, underweight, obesity, and current smoking.19
Another study showed that 70% of a sample of U.S. urban HIV-positive women reported having had a gynecological examination in the previous year.20
These results, which are based on self-reported data, suggest that adherence with recommended gynecological care among HIV-positive women is inadequate.
Most studies of gynecological healthcare utilization in the HIV-seropositive population have focused on compliance with recommended cervical cancer screening, Pap smear evaluation, and follow-up of abnormal Pap smear results. One large study of 43,000 HIV-positive women found that a significant percentage of women who had abnormal Pap smears did not receive a repeat Pap test or colposcopy.13
A study of adherence to colposcopy among 462 women with or at risk for HIV infection found that adherence rates were 65% and comparable to the national average but “nevertheless unacceptably low for a group at such high risk for SIL.”21
A 2006 Quality Improvement Program Review of HIV primary care services conducted by the Baltimore City Health Department Ryan White Title I Office showed that only 50% of HIV-positive women in Baltimore City had received a Pap smear in the previous year.22
Our finding of an association between a CD4 count <200 cells/mm3
and greater nonadherence to scheduled clinic visits is particularly troubling, as the incidence and the severity of gynecological pathology may be greater in women with advanced immunosuppression.
Our study found that African American race increased the risk of missed gynecological visits but not missed HIV primary care visits. Our study population is 84% African American, which may differ from other study populations. One study showed that urban HIV-positive African American women were less likely to have had an outpatient visit in the previous 6 months or to have been on OI prophylaxis.20
Several studies have also identified race/ethnicity as a factor associated with cervical cancer screening disparities in the HIV-uninfected population. In 1996, the National Institutes of Health (NIH) issued a consensus statement on cervical cancer, which stated that in the United States, ethnic and racial minority women, elderly women, medically uninsured women, and low-income women were not screened or were not screened at regular intervals for cervical cancer.23
In a 2005 study conducted by the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) on recommended follow-up for ASCUS or low-grade SIL (LSIL) of over 10,000 women, only 44% of women received appropriate follow-up, and African American women were least likely to receive appropriate follow-up.24
Studies focusing on minority racial/ethnic populations indicate that lack of health insurance, lower level of education, lack of continuity of care, and lower use of public services were associated with lack of adherence to annual Pap smears.25–27
Unfortunately, we did not have data to assess income, employment, or education. All of our patients were either insured or were eligible to receive primary and gynecological care paid by the Ryan White CARE Act support, which does not require an enrollment wait time or other special procedure in our region, so insurance was not likely a barrier in this study.
We also found that substance use was associated with a decreased rate of both gynecological appointment and primary care visit adherence. One study showed that U.S. urban HIV-positive intravenous drug users were less likely to report having a regular doctor or any outpatient visit in the previous 6 months.20
Although there is scant literature on the association of substance abuse with primary care or gynecological appointment adherence, several studies examining the HIV-infected population in general have linked such factors as substance abuse to HIV medication nonadherence.28–31
One study of 150 HIV-infected people found that drug use was associated with a 4-fold greater risk of medication adherence failure.32
Unfortunately substance use and abuse in women is closely linked to HIV: the CDC reported that 1 in 5 new HIV diagnoses in women were related to injection drug use in 2005.1
Women who sell or trade sex for drugs are at risk for HIV infection through sexual transmission. A study of HIV-positive African American women with histories of childhood sexual abuse found that substance use was a significant health problem, as well as a barrier to healthcare.33
Crack cocaine use has been negatively associated with colposcopy adherence among women with or at risk for HIV infection.21
Our results indicating a generally low rate of appointment adherence are consistent with results of other studies of barriers to healthcare utilization in HIV-infected women. For example, HIV-infected women are less likely to be on combination antiretroviral therapy and are more likely than men to have hospitalizations and emergency room visits.34
Other studies have suggested that healthcare systems are not structured to meet women's healthcare needs: clinics tend to have inconvenient and inflexible hours, long waits, and a lack of staff from the same ethnic or racial groups as most patients.35
Authors have suggested that cultural values and beliefs, as well as such competing needs as for food, clothing, and shelter, may adversely affect Pap smear screening among women from racial and ethnic minority groups.27
Subsistence issues, such as lack of transportation and fear of the consequences of missing work, also have been identified as barriers to HIV-infected women receiving healthcare.36
One study of HIV-positive African American women found that barriers to healthcare included confidentiality issues, difficulty getting an appointment, long clinic wait times, and obligation to care for others. These authors call for HIV care interventions that link the cultural beliefs and values of the population with the health skills and attitudes being promoted in the clinic.33
Child care issues have been postulated to be a potential barrier to keeping medical appointments. Some physicians caring for HIV-infected women have advocated “a multidisciplinary approach to treatment and prevention that would address women's life circumstances along with their medical needs.”35, pg 652
Many of these factors may explain the generally low rate of appointment adherence we found but do not necessarily explain the discordantly low rate of gynecological appointment adherence, as many of these issues should have affected both HIV primary care and gynecological care, which are located in the same clinic facility. Both clinics use the same clinic operating hours, waiting room, and clinical space (although different sets of rooms), registrars, and medical assistants for vital signs. Wait times for appointment after referral, as well as wait times to be seen on the day of appointment, are similar. However, HIV primary care and HIV gynecological care appointments are rarely scheduled on the same day for each patient. In a national study of self-reported factors associated with cervical cancer screening among HIV-positive women, women who reported having a gynecologist and a primary care provider at the same clinical site were almost twice as likely to report having had a Pap smear in the previous 12 months.13
The authors concluded that providing gynecological care at the same site as primary HIV care might improve delivery of gynecological care. We did not find this to be the case at our clinic site.
This was an analysis of data from our prospective, observational clinical cohort. Therefore, we did not have additional variables of interest, such as income, employment, housing status, education, or psychosocial and behavioral factors. One study of HIV-infected U.S. adults found that 26% of patients perceived discrimination by healthcare providers and that this could discourage medication adherence and follow-up.37
Psychosocial measures, including depression, HIV stigma, low coping self-efficacy, low adherence self-efficacy, poor-perceived patient-provider relationship, low-perceived respect, and low-perceived utility of treatment also have been cited as contributing to medication nonadherence among HIV-infected clinic patients.38,39
As mentioned, belief factors, such as embarrassment, fear of discomfort during the gynecological examination, and fear of pathology, may be barriers to gynecological care, as may logistical concerns, such as child care issues. Several studies focusing on the Hispanic population have identified fatalistic attitude toward cancer, as well as embarrassment, fear, and pain during the pelvic examination, as potential barriers to having a Pap smear.40,41
Another study focusing on female college students also identified embarrassment and pain as potential barriers to undergoing a pelvic examination or a Pap smear, although the majority of women in the study had undergone Pap smears in the past year.42
We did not have access to these variables in our study.
We recognize the limitations of an analysis of data as a means to explore these behavioral and emotional issues, so we have developed subsequent quantitative and qualitative phases for study of this problem. In order to further examine and determine the barriers to HIV gynecological clinic visit adherence, we have developed and will be administering a targeted questionnaire to women who receive both HIV primary care and HIV gynecological care at our clinic. We will also conduct a qualitative study using focus groups comprising women who receive both HIV primary care and gynecological care at our clinic, which will attempt to further elucidate the major barriers to gynecological care for these women.
Our study of an urban HIV-positive population database shows a low rate of HIV primary care clinic visit compliance and a dramatically low rate of HIV gynecological clinic visit compliance. More information is needed to examine the barriers to HIV gynecological clinic visit adherence in this population, and we have quantitative and qualitative studies in place to clarify potential logistical, behavioral, and emotional variables that may ultimately help to improve care. Given the incidence and prevalence of gynecological pathology in HIV-infected women and the importance of early screening for detection of pathology, it will be critical to create appropriate interventions that target barriers to receiving gynecological healthcare among women enrolled in urban HIV clinics.