Abstract
National guidelines recommend that HIV providers systematically monitor retention in care to identify and re-engage persons suboptimally in care. We described (1) U.S.-based outpatient HIV care facilities that systematically monitor retention in care, and (2) characteristics of patients attending facilities that monitored retention in care. We used data collected during 6/2014–5/2015 from the Medical Monitoring Project, an annual, cross-sectional survey that produces nationally representative estimates of characteristics of HIV-positive persons in medical care. We described systematic monitoring of retention in care among facilities and patients attending facilities providing this service using weighted percentages and 95% confidence intervals, and used Rao-Scott chi-square tests (p < .05) to assess differences by selected characteristics. Overall, 67% of facilities systematically monitored retention in care, and 81% of patients attended these facilities. Federally qualified health centers, community-based organizations, health departments, non-private practices, and Ryan White HIV/AIDS Program (RWHAP)-funded facilities were more likely to systematically monitor retention in care. Persons living in poverty, and those who were homeless or incarcerated, or injected drugs were more likely to attend facilities with this service. Although systematic monitoring of retention in care is accessible for many patients, improvements at other, non-RWHAP-funded facilities may help in reaching national prevention goals.
Keywords: HIV, care, systematic monitoring, retention
Background
Antiretroviral therapy (ART) has revolutionized HIV treatment and care, and when taken appropriately, results in viral suppression, which reduces morbidity and mortality and minimizes risk of transmitting HIV to others (Bavinton et al., 2017; Cohen et al., 2016; Palella et al., 1998; Rodger et al., 2016; The Lancet, 2017). However, engagement in HIV medical care is critical for ART prescription and adherence to occur, and thus, increasing the percentage of persons with HIV who are linked and retained in HIV care is a national priority (Bradley et al., 2014; HRSA, 2015). To ensure patients are engaged in HIV medical care, the International Association of Providers of AIDS Care strongly recommends that HIV care providers systematically monitor retention in care of their patients to identify persons out of care and re-engage them as needed (Thompson et al., 2012). Systematic monitoring of retention can be done through review of facility medical records and surveillance data, and can be used to identify gaps in HIV care, visit adherence, and time between visits. HIV outpatient care facilities can then use these data to follow up with patients needing additional care (Thompson et al., 2012).
Recently published findings reported that 53% of HIV care providers practiced in facilities that offered systematic monitoring of retention in care (Craw et al., 2017). However, the extent to which these guidelines are generally integrated into the outpatient HIV care facility setting is unknown. There is also limited information about the proportion of patients attending facilities that systematically monitor retention in care and characteristics of these patients. Thus, in this analysis, we described (1) the proportion of U.S.-based outpatient HIV care facilities in the United States that systematically monitor retention in care of patients, overall and by facility characteristics, and (2) characteristics of HIV patients who attended facilities that monitored retention in care.
Methods
Data and measures
The Medical Monitoring Project (MMP) is an annual cross-sectional survey designed to provide nationally representative estimates of behavioral and clinical characteristics of HIV-positive persons in medical care. MMP utilized a three-stage probability-proportional-to-size sampling design during 2014, in which states and territories were sampled first, then HIV outpatient care facilities within those areas were sampled with probability-proportional-to-size based on the number of persons receiving care for HIV, and finally, persons with diagnosed HIV aged 18 years and older who had at least 1 medical care visit in a sampled facility during January–April 2014 were sampled. MMP is conducted as a part of routine surveillance and thus is deemed to be non-research; participating states or territories as well as facilities obtained institutional review board approval for data collection as needed, and informed consent was obtained from all interviewed participants.
All data were collected during June 2014–May 2015. All sampled states and territories participated in MMP, and included California (including the separately funded areas, Los Angeles County and San Francisco), Delaware, Florida, Georgia, Illinois (including Chicago), Indiana, Michigan, Mississippi, New Jersey, New York (including New York City), North Carolina, Oregon, Pennsylvania (including Philadelphia), Puerto Rico, Texas (including Houston), Virginia, and Washington. The overall facility response rate was 86% and patient response rate was 56%. Data were weighted based on known probabilities of selection at state or territory, facility, and patient levels, and for patient and facility nonresponse.
Local MMP staff collected information about all eligible, sampled outpatient HIV care facilities from facility staff and through other sources, such as facility web-pages. Data were obtained on whether facilities had programs in place for systematic monitoring of retention in care. Information about facility type, including whether or not the facility was a private practice, hospital-based setting, federally qualified health center (FQHC), community-based organization (CBO), or health department (HD) was collected. Facility ownership (public or private) and receipt of Ryan White HIV/AIDS Program (RWHAP) funding were also ascertained.
In addition to facility-level characteristics, self-reported demographic and behavioral characteristics were collected from patients receiving care at these facilities through telephone or face-to-face interviews. Clinical data were recorded by medical record abstraction. Patients were interviewed about demographic characteristics, such as age, gender, sexual orientation, race/ethnicity, educational attainment, health insurance coverage, household income with respect to the federal poverty line according to the Department of Health and Human Services poverty guidelines (2013 Poverty Guidelines), history of homelessness and incarceration in the past 12 months, as well as behavioral characteristics such as injection and non-injection drug use in the past 12 months and binge drinking, defined as four (among females) or five (among males) or more alcoholic drinks in one sitting during the previous 30 days. Race and ethnicity were categorized as: non-Hispanic white, non-Hispanic black/African American (henceforth known as black), Hispanic/Latino, and other. Health insurance coverage was summarized into a single variable categorized as any private insurance, only public insurance, and only Ryan White coverage/uninsured. All self-reported information was based on the 12 months prior to interview, except where otherwise specified.
Analysis
We examined the proportion of outpatient HIV care facilities (n = 560) with programs for systematic monitoring of retention in care. Of facilities that had information on systematic monitoring programs (n = 462), we examined the proportion that systematically monitored retention in care overall and by facility type, ownership, and receipt of RWHAP funding. We assessed differences in systematic monitoring by facility characteristics. We then examined the proportion of HIV patients (n = 4,605) who attended an HIV care facility with systematic monitoring of retention, overall and by demographic and behavioral characteristics, and assessed differences in attendance at a facility with systematic monitoring by patient characteristics. We reported facility and patient characteristics with weighted percentages and corresponding 95% confidence intervals (CIs). We used Rao-Scott chi-square tests to assess statistical differences between groups, where p < .05 signified statistical significance. All analyses accounted for complex sample design and unequal selection probabilities and were conducted using SAS survey procedures.
Results
Of all outpatient HIV care facilities, 67% had programs to systematically monitor retention in care of all patients in place (Table 1). Facilities more likely to have programs for systematic monitoring of retention in care included non-private practices, compared with private practices (82% vs. 55%; p < .0001); FQHCs, compared with non-FQHCs (96% vs. 59%; p < .0001); CBOs versus non-CBOs (95% vs. 62%; p < .0001); and clinics located in health departments versus those not located in health departments (91% vs. 66%; p = .0089). Facilities that received RWHAP funding were more likely to have systematic monitoring of retention in care in place, compared with facilities that did not receive RWHAP funding (92% vs. 51%; p < .0001).
Table 1.
Characteristics of facilities with systematic monitoring of retention in care – Medical Monitoring Project, 2014.a
| Overall | Has systematic monitoring | ||||
|---|---|---|---|---|---|
| n | Weighted Column % (95% CI) | n | Weighted Row % (95% CI) | p | |
| Overall | 462 | - | 334 | 67 (58–76) | |
| Facility type (not mutually exclusive categories) | |||||
| Private practice | <.0001 | ||||
| Yes | 187 | 56 (47–65) | 108 | 55 (42–68) | |
| No | 264 | 44 (36–53) | 218 | 82 (74–89) | |
| Hospital-based | 0.575 | ||||
| Yes | 152 | 30 (21–39) | 108 | 71 (56–86) | |
| No | 299 | 70 (61–79) | 217 | 66 (57–75) | |
| Federally qualified health center | <.0001 | ||||
| Yes | 101 | 24 (15–33) | 95 | 96 (92–100) | |
| No | 321 | 76 (67–85) | 210 | 59 (47–71) | |
| Community-based organization | <.0001 | ||||
| Yes | 72 | 16 (9–24) | 65 | 95 (91–99) | |
| No | 372 | 84 (76–91) | 255 | 62 (52–72) | |
| Health department | 0.0089 | ||||
| Yes | 54 | 8 (5–11) | 48 | 91 (82–100) | |
| No | 388 | 92 (89–95) | 271 | 66 (56–76) | |
| University-affiliated, teaching, academic facility | 0.2084 | ||||
| Yes | 113 | 17 (10–24) | 87 | 73 (59–86) | |
| No | 333 | 83 (76–90) | 235 | 64 (55–74) | |
| Tertiary care facility | 0.4536 | ||||
| Yes | 54 | 8 (6–10) | 40 | 72 (57–87) | |
| No | 383 | 92 (90–94) | 274 | 66 (56–75) | |
| Facility ownership | 0.0633 | ||||
| Publicly owned | 121 | 18 (11–25) | 99 | 79 (69–89) | |
| Privately owned | 312 | 82 (75–89) | 214 | 64 (54–75) | |
| Ryan White HIV/AIDS Program funding | <.0001 | ||||
| Yes | 269 | 46 (35–57) | 243 | 92 (87–97) | |
| No | 163 | 54 (43–65) | 75 | 51 (37–65) | |
Categories for some variables may not sum to total due to missing data.
Overall, 81% of persons attended an outpatient HIV care facility with a program for systematic monitoring of retention in care (Table 2). Persons more likely to attend such facilities included females, compared with males (83% vs. 80%; p = .0408), those with lower educational attainment (less than high school education, 86%; high school or equivalent, 82%; more than high school, 79%; p = .0024), persons at or below the poverty level, compared with persons above the poverty level (84% vs. 78%; p = .0053), and those who reported being homeless during the previous 12 months, compared with persons not being homeless (89% vs. 80%; p = .0009). Attendance at a facility with systematic monitoring varied by sexual orientation (homosexuals, 78%; heterosexuals, 83%; bisexuals, 84%; p = .0072), racial/ethnic categories (non-Hispanic whites, 76%; non-Hispanic blacks, 84%; Hispanic/Latinos, 83%; other racial/ethnic group, 81%; p = .0014), and health insurance coverage (private insurance, 74%; public insurance only, 83%; Ryan White coverage only or uninsured, 88%; p < .0001). In addition, persons who reported being incarcerated during the previous 12 months, compared with those who did not (91% vs. 81%; p < .0001), and those who reported injecting drugs during the last year, compared with those who did not (90% vs. 81%; p = .0218), were more likely to receive care at an HIV care facility with systematic monitoring programs.
Table 2.
Characteristics of patients attending facilities with systematic monitoring of retention in care – Medical Monitoring Project, 2014.a
| Overall | Attended a facility with systematic monitoring | ||||
|---|---|---|---|---|---|
| n | Weighted Column % (95% CI) | n | Weighted Row % (95% CI) | p | |
| Overall | 4605 | - | 3703 | 81 (77, 85) | |
| Age, in years | 0.0527 | ||||
| 18–29 | 401 | 9 (8–11) | 328 | 82 (76–88) | |
| 30–39 | 661 | 15 (13–16) | 555 | 84 (80–88) | |
| 40–49 | 1279 | 28 (26–29) | 1056 | 82 (78–87) | |
| ≥50 | 2264 | 48 (47–50) | 1804 | 79 (75–84) | |
| Gender | 0.0408 | ||||
| Male | 3304 | 75 (73–78) | 2664 | 80 (76–84) | |
| Female | 1226 | 25 (22–27) | 1023 | 83 (79–88) | |
| Sexual orientation | 0.0072 | ||||
| Homosexual | 1868 | 43 (39–46) | 1466 | 78 (74–83) | |
| Heterosexual | 2257 | 48 (44–52) | 1871 | 83 (78–87) | |
| Bisexual | 430 | 10 (9–11) | 363 | 84 (78–90) | |
| Race/ethnicityb | 0.0014 | ||||
| Non-Hispanic white | 1362 | 31 (25–37) | 1027 | 76 (71–81) | |
| Non-Hispanic black | 1915 | 41 (33–49) | 1615 | 84 (80–89) | |
| Hispanic/Latino | 1137 | 24 (17–30) | 949 | 83 (78–88) | |
| Other | 191 | 4 (4–5) | 152 | 81 (72–89) | |
| Educational attainment | 0.0024 | ||||
| Less than high school | 938 | 20 (19–22) | 807 | 86 (81–91) | |
| High school or equivalent | 1336 | 29 (26–31) | 1100 | 82 (78–86) | |
| More than high school | 2331 | 51 (48–54) | 1836 | 79 (74–83) | |
| Health insurance/coverage | <.0001 | ||||
| Any private insurance | 1306 | 30 (27–32) | 979 | 74 (69–80) | |
| Public insurance only | 2588 | 56 (52–61) | 2157 | 83 (79–87) | |
| Ryan White only/uninsured | 619 | 14 (11–18) | 538 | 88 (83–93) | |
| Poverty status | 0.0053 | ||||
| Above poverty level | 2036 | 47 (44–50) | 1593 | 78 (73–83) | |
| At or below poverty level | 2388 | 53 (50–57) | 2005 | 84 (80–88) | |
| Homelessness, past 12 months | 0.0009 | ||||
| Yes | 384 | 9 (8–10) | 338 | 89 (84–94) | |
| No | 4221 | 91 (90–92) | 3405 | 80 (76–84) | |
| Jail/prison, past 12 months | <.0001 | ||||
| Yes | 196 | 5 (4–5) | 176 | 91 (87–96) | |
| No | 4408 | 96 (95–96) | 3566 | 81 (76–85) | |
| Non-injection/injection drug use, past 12 months | 0.1424 | ||||
| Yes | 1192 | 27 (25–28) | 983 | 83 (78–87) | |
| No | 3388 | 73 (72–75) | 2740 | 80 (76–85) | |
| Injection drug use, past 12 months | 0.0218 | ||||
| Yes | 116 | 2 (2–3) | 103 | 90 (85–95) | |
| No | 4463 | 98 (97–99) | 3619 | 81 (77–85) | |
| Non-injection drug use, past 12 months | 0.1449 | ||||
| Yes | 1173 | 26 (24–28) | 968 | 83 (78–87) | |
| No | 3407 | 74 (72–76) | 2755 | 80 (76–85) | |
| Binge drinking, past 30 days | 0.1540 | ||||
| Yes | 697 | 16 (14–17) | 547 | 78 (72–84) | |
| No | 3859 | 85 (83–86) | 3154 | 81 (77–86) | |
Categories for some variables may not sum to total due to missing data.
Racial/ethnic categories are mutually exclusive. Hispanics/Latinos can be of any race.
Discussion
This was the first analysis to examine availability of systematic monitoring of retention in care using a nationally representative sample of U.S.-based outpatient HIV care facilities. The findings demonstrated that one-third of facilities did not systematically monitor retention in care for all HIV patients, despite strong recommendations to do so (Thompson et al., 2012). Overall, 81% of patients attended facilities with systematic monitoring of retention in care. Facilities that served persons living in poverty and at high risk for poor HIV outcomes, particularly RWHAP-funded facilities, were more likely to systematically monitor retention in care.
Using facility and surveillance data to monitor appointment attendance and gaps in care is central to CDC’s Data to Care activities (CDC). Through the Data to Care program, CDC encourages local jurisdictions to support the HIV care continuum and national HIV prevention goals by identifying and re-engaging persons with diagnosed HIV who are in need of HIV care services, or may need support to improve ART adherence and viral suppression. HIV surveillance data can be used to identify such persons. Facility data on patients also offer unique information that surveillance data do not, such as documentation of missed HIV care visits, which has been highly associated with all-cause mortality (CDC; Mugavero et al., 2009; Thompson et al., 2012). Incorporating both of these data sources may provide a more complete picture of HIV care engagement among patients. Combining all available information at the level of the jurisdiction may be especially important for patients attending more than one facility for HIV care needs, as these patients may be documented as being out of care in any given facility, but actually are retained in care when looking at all attended facilities. However, using all available databases to systematically monitor retention in care may require coordination within facilities, and between local health departments and health facilities. Publicly-funded facilities, such as RWHAP-funded facilities, health departments, and FQHCs, may have stronger coordination within and between organizations, which may make them more likely to have successful programs for systematic monitoring of retention in care.
There may be several challenges with systematic monitoring of retention. For instance, some facility systems may have limitations in recording and accessing clinic-based information through electronic health records because of lack of information technology (IT) capacity and having multiple data systems to track information without means for integration. With continued public health funding cuts, there also may be limitations in facility staffing needed to lead efforts to monitor retention in care in publicly-funded facilities. There may also be limited personnel for reaching out to patients identified as being suboptimally in care, which, although potentially quite resource-intensive, is crucial to the success of systematic monitoring of retention efforts. Non-RWHAP-funded facilities without co-located services may have more challenges with systematic monitoring of retention in care because of any of these reasons. Facilities which experience these challenges could consider leveraging external connections with health departments, data to care systems, and local disease intervention specialists to help support systematic monitoring programs. Successful coordination between multiple service providers and the health department also requires adequate personnel and support at both levels, and integration in potentially multiple database systems. Utilizing already existing resources and connections with external organizations may be extremely helpful in finding difficult to reach persons who are out of care (Dombrowski et al., 2018). Identifying and addressing reasons for not implementing a systematic monitoring program may be helpful in expanding the use of data to improve retention in care.
These findings demonstrated that compared with other outpatient HIV care facilities, RWHAP-funded facilities, which serve underinsured or uninsured HIV-positive persons who might otherwise not be able to receive care (HRSA), are more likely to systematically monitor retention in care. Systematic monitoring of retention in care is a vital part of identifying and re-engaging HIV-positive persons who are out of care or suboptimally in care and can be used to provide support to retain patients, which may be critical for achieving viral suppression among patients attending these facilities (Doshi et al., 2015; Thompson et al., 2012). Monitoring retention may be particularly important for persons who have previously been found to be less engaged in HIV care, such as persons identifying as non-white, and those reporting being homeless, being in jail/prison, and injecting drugs during the previous 12 months (Aidala, Lee, Abramson, Messeri, & Siegler, 2007; “Announcement: Monitoring Selected National HIV Prevention and Care Objectives,” 2017; Dasgupta, Oster, Li, & Hall, 2016; Iroh, Mayo, & Nijhawan, 2015). RWHAP-funded facilities also provide a wide range of medical and ancillary services that additionally support retention in care and ART adherence by addressing immediate needs, such as shelter or housing assistance; offering comprehensive health services, such as for mental health and substance use; and providing other support services, such as adherence counseling, transportation assistance, and case management (Holtzman, Brady, & Yehia, 2015; HRSA; Thompson et al., 2012; Weiser et al., 2015). Ultimately, using evidence-based strategies, such as systematic monitoring and co-location of medical services, to improve HIV care engagement should be considered to ensure patients become and remain virally suppressed (Holtzman et al., 2015; Thompson et al., 2012).
There are some limitations to this analysis. First, information on systematic monitoring of retention in care was not available for 17% of outpatient HIV care facilities. Also, not all sampled facilities or HIV patients participated in MMP, although results were adjusted for nonresponse using standard methodology (Iachan et al., 2016). Even with suboptimal response rates, however, there is still value in results obtained from unbiased sampling methods (Groves, 2006). All patient characteristics were based on self-report and may be subject to misclassification, although we do not suspect any measurement error to be differential with respect to attendance at a facility with systematic monitoring of retention.
Conclusions
Systematic monitoring of retention in care for all persons with HIV is nationally recommended (Thompson et al., 2012), yet a third of U.S. outpatient HIV care facilities had no program for such monitoring. However, 81% of HIV patients attended a facility with a monitoring program. Nearly all RWHAP-funded facilities systematically monitored retention in care. Persons who reported being poor or who may be at high risk for unfavorable HIV outcomes were more likely to attend a facility with systematic monitoring of retention in care. Although many patients who might need additional support for HIV care engagement attend facilities that provide this assistance, reaching national goals to retain at least 90% of persons with diagnosed HIV in medical care may require improvements at other, non-RWHAP-funded facilities. Better coordination and integration of resources between facilities and health department data to care programs may help in establishing and maintaining systematic monitoring of retention in care programs.
Funding
This work was supported by Centers for Disease Control and Prevention.
Footnotes
Disclosure statement
No potential conflict of interest was reported by the authors.
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