Use of an Outreach Coordinator to Reengage and Retain Patients with HIV in Care

Abstract

It is well established that retention in high-quality care and regular visits with an HIV/AIDS provider improve outcomes for people living with HIV/AIDS (PLWHA). However, nationally and regionally in South Carolina, retention rates remain low. We piloted an outreach program focused on characterizing out of care (OOC) patients to identify PLWHA who were lost to care and attempt reengagement through phone call, letter, and home visit interventions. Primary outcomes were reengagement, defined as attendance to a clinic appointment, and retention in care, defined by the Health Resources and Services Administration (HRSA) definition (two visits at least 90 days apart in 2015). There were 1242 adult clinic patients in 2014. A total of 233 patients were included in the OOC cohort, according to the inclusion criteria. Of these 233, the outreach coordinator found that a majority of patients, 119 (51%), were lost to care. Reengagement was seen in 52 (44%) patients lost to care, and among those who reengaged, 26 (50%) were retained in care in 2015. This report represents one of few interventions that target reengagement for patients who are lost to care. The use of an outreach coordinator was successful in reengaging and retaining patients in care. It represents an uncomplicated intervention, functional within the current clinic design and available funding structure of the Ryan White grant. Poor engagement and retention in care continue to be significant problems among PLWHA with resultant poor clinical outcomes. Continued focus on new interventions to improve retention in care is necessary to improve clinical outcomes.

Introduction

Earlier diagnosis of HIV leads to improved clinical outcomes for the individual and decreased transmission to others due to both behavior change and viral load suppression by antiretroviral therapy (ART).^1
–3 These outcomes require that diagnosed persons be linked to care, actively engaged in care, and retained in high-quality care that provides ART.¹ Retention in HIV care improves health outcomes for people living with HIV/AIDS (PLWHA).^4,5 However, multiple studies have shown that retention in care is a problem among PLWHA and reasons for poor retention are varied, including stigma, transportation, social factors, and lack of perceived health consequence among other reasons.^6
–8 There is a high burden of HIV infection in South Carolina, with Charleston ranking 19th of metropolitan areas for new HIV diagnoses in 2013, and yet only half of PLWHA were retained in care and only 64% received any care in 2012.^9
–11

The Medical University of South Carolina's (MUSC) Health Resources and Services Administration (HRSA) funded Ryan White (RW) HIV clinic provides care to more than 1200 PLWHA annually without regard to ability to pay and comprises a comprehensive care team that includes physicians, a pharmacist, social workers, and nurses. Evidence-based services, including medical case management, mental health services, access to substance abuse treatment, and food, housing, transportation, and prescription assistance programs, are established and available in the clinic. With regard to retention in care at the MUSC RW HIV clinic, the general population persistence is high with 89–90% of the population persisting from year to year (internal RW data). In 2014, 1336 patients were enrolled in clinic, with 157 new patients. However, the following year in 2015, 1324 patients were enrolled (with an additional 135 new patients), suggesting that 11% of the population fell out of care (OOC) from 1 year to the next and the overall clinic population remained the same as we were enrolling new patients into the clinic (internal RW data). As this stable 10% rate of attrition was similar from year to year, it suggested that the OOC patients were not returning to clinic on their own, as the overall total number of annual patients remained stable despite new patient enrollment each year. Other centers have reported higher rates of patients being OOC, reporting that 30–47% of patients have gaps in care or are OOC for 12 months.^12,13 It was our experience that some of our OOC patients had transferred care, were incarcerated, or had died, but we knew that an important portion of the population were patients who had been lost to care and needed HIV care. Surveillance systems have been implemented in a number of studies to improve identification of OOC patients who are actually lost to care, but unfortunately South Carolina has not yet developed these systems for monitoring OOC patients.¹⁴ Navigation and contact interventions have been shown to improve linkage and engagement both for newly diagnosed patients and for those at risk of falling OOC, with resulting improvement in visit constancy, visit attendance, retention in care, and improved clinical outcomes.^15

–19Additional interventions, including text-based interventions, have also been shown to improve retention in care for patients at risk of falling OOC.²⁰ Based on known data that contact interventions have improved outcomes for other stages of the continuum of care, we piloted an intensive outreach program both to categorize the OOC patients and to target interventions to reengage those patients who were lost to care. Our hypothesis was that a contact outreach intervention would improve reengagement and retention in care for patients who were lost to care.

Methods

Standard of care

Before the creation of the outreach coordinator position in our clinic, there was no standardized process for managing and reaching patients who were OOC and there was no standard monitoring system for OOC patients, including tracking of natural history of return to care in this population. Contact of OOC patients may have occurred by provider prompting, receipt of office notification of AIDS Drug Assistance Program (ADAP) closure or insurance change, or signal by other indicators that a patient had not returned to clinic, but none of these factors were monitored or proactively followed. Thus, to better understand the OOC population at the MUSC RW HIV clinic, a new service was created with a new part-time outreach coordinator position (coordinator) via HRSA RW funding. A professional with experience working with PLWHA and a Masters in Clinical Counseling was hired.

Measures

The primary outcomes of the outreach intervention were reengagement in care and retention in care. Reengagement was defined as having at least one visit in 2015. Retention in care was defined according to the HRSA definition, two visits at least 90 days apart. To be included in the analysis for this study, “out of care” patients were defined as those who had attended clinic at least once from 2009 to 2014 and were not retained in care in 2014. Using this 5-year range helped identify a large catchment of patients who were part of the clinic population at one time that had not returned to care, since we had no proactive monitoring system of who may have fallen OOC before 2014. With the additional inclusion criteria of not being retained in care in 2014, this limited outreach to patients who had not yet returned to care reducing the risk that they may have returned without the outreach intervention. Patients who were “lost to care” were those OOC patients who needed to return to HIV care. They represented the OOC patients who had not died, been incarcerated, or transferred care. A secondary outcome was to determine if any patient demographic features could help identify OOC patients who were lost to care. To this end, we compared demographic information for those lost to care patients to those OOC patients who transferred care to see if any factors could quickly identify OOC patients who were lost to care compared with patients who remained in care.

Intervention description

The coordinator initially identified patients meeting inclusion criteria and then used the electronic medical record, obituaries, and personal communications from her outreach to categorize patients into one of four categories: deceased, incarcerated, moved/transferred care, or, if not in these three categories, then lost to care. Once a patient was identified as lost to care, the coordinator performed a phone call intervention calling the last known number in an attempt to reengage the patient. Further steps taken by the coordinator were based on the response to the call. If the patient answered, the coordinator actively worked to reengage the patient. However, if unable to reach the patient and if possible, the coordinator left a message on voicemail or with anyone who answered requesting a return call and left contact information. For the protection of participant privacy, messages left by the coordinator were free of confidential information. The coordinator's telephone was a secure direct cell phone not linked to clinic. If the coordinator was unable to reach the patient via phone call, next was an intervention in which a personalized letter was written and mailed to the patient at the last known address. The letter broadly offered assistance with reengagement and included the contact information for the coordinator. Finally, if the patient did not respond to the letter, a home visit intervention was attempted if time was available. As the coordinator was a part-time position, home visits were allowed using any time remaining each week after other outreach activities were completed. Preference for home visits was for patients with addresses that were near the clinic site from which letters were not returned (predicting better likelihood that the address was correct), women of childbearing age (especially if previous pregnancies had been noted), and those patients with more advanced HIV disease markers (lower CD4 count) at the time they were lost to care. Similar to patient responses to the telephone and letter interventions, if the patient was available during a home visit, the coordinator actively attempted reengagement to care. If someone other than the patient was home or if no one was available, the coordinator left a card with a note to call her when possible. If time was available, repeat visits in the following weeks were attempted to make contact with the patient. Often the classification of the patient occurred after one or more interventions, as cumulative interventions provided additional information needed for correct classification.

Analyses

Data collection was initiated October 1, 2014, and was continued through the end of 2015. Chart review was also completed to collect demographic and HIV disease data. Statistical software (SPSS 23) was used for analysis, chi-square for dichotomous variables, and analysis of variance for continuous variables.

Results

Of the 1242 adult patients enrolled in the MUSC RW HIV clinic in 2014, 233 patients were OOC. Of those who were OOC, we found that a slight majority of patients, 119 (51%), were lost to care. The classification outcomes for the OOC patients are displayed in Fig. 1. Baseline characteristics of the overall adult clinic population, the OOC, and the lost to care groups were similar (Table 1). When compared with those OOC who had moved/transferred care, those lost to care were less likely to be men (72% vs. 84%, p = 0.04) and more likely to be African American (77% vs. 55%, p = 0.00) (Table 1).

FIG. 1.

The classification outcomes for the 233 OOC patients. OOC, out of care.

Table 1.

Baseline Demographics

			OOC in 2014 (n = 233)
	Total HIV clinic (n = 1242)	OOC in 2014 (n = 233)	Lost to care (n = 119)	Moved/transferred (n = 80)	p^a
Age (years)	44	42	42	43	0.57
Male, n (%)	814 (66)	180 (77)	86 (72)	68 (85)	0.0 4
African American, n (%)	887 (71)	167 (72)	92 (77)	44 (55)	0.00
Hispanic, n (%)	51 (4)	11 (5)	9 (8)	2 (3)	0.13
Insurance, n (%)
Medicaid	231 (19)	40 (17)	24 (20)	10 (13)	0.29
RW	451 (36)	106 (46)	60 (50)	41 (51)
Medicare	285 (23)	38 (16)	19 (16)	10 (13)
Private	273 (22)	34 (15)	15 (13)	18 (23)
Other	2 (<1)	15 (6)	1 (1)	1 (1)
CD4 count (mean)^b	491	446	431	503	0.10

Chi-square test Lost to care versus Moved/Transferred care.

Denotes the last value on record for the patient before loss to follow-up.

RW, Ryan White.

Bold values denote statistical significance.

For the 119 patients lost to care, 118 received a phone intervention. Of those who did not respond to the call, 97 received a letter intervention and 14 received a home visit. The responses decreased with progression as all nonresponders to the phone call moved to the letter intervention category (86% response to phone call alone, 37% to phone and letter). Overall, reengagement was seen in 52 (44%) of patients lost to care with demographics for all patients noted in Table 2. Although those who reengaged in care appeared less likely male (67% vs. 76%) and more likely African American (83% vs. 73%) than those who did not, none of the demographics were significantly different (Table 2). Among the 52 who reengaged, 26 (22% of total lost to care) were retained in care in 2015 (Table 2). Although those who reengaged in care and were retained in care in 2015 appeared to be more likely male (77% vs. 58%, p = 0.13) and less likely African American (77% vs. 88%, p = 0.27) than those who were not retained, no statistical difference was found (Table 2). The number of missed visits among the reengaged patients appeared lower among those who were retained in comparison with those who were not but did not reach statistical significance (1.2 vs. 1.7 visits, p = 0.21).

Table 2.

Comparisons by Engagement and Retention Status

	Reengaged (n = 52)	Not reengaged (n = 67)	Reengaged and retained (n = 26)	Reengaged and not retained (n = 26)
Age (years)	43	41	46	40
Male, n (%)	35 (67)	51 (76)	20 (77)	15 (58)
African American, n (%)	43 (83)	49 (73)	20 (77)	23 (88)
Hispanic, n (%)	2 (4)	7 (10)	1 (4)	1 (4)
RW Payer, n (%)	24 (46)	36 (62)	12 (46)	12 (46)
Last CD4 count (mean)	435	427	427	443
Last viral load (median)	291	66	434	262
Last viral load (mean)	25,779	68,413	29,191	22,367

p Values between the reengaged and not reengaged in care were not significant. p Values between the retained and not retained in care were not significant.

Conclusions

Our study shows that an outreach coordinator can have an ongoing role in reengagement and retention of patients who are lost to care. It represents one of the first reports of an outreach contact intervention to improve reengagement into HIV care of patients who are lost to care, as most studies focus on newly diagnosed patients or those at risk of falling OOC. Among OOC patients, we found that not all patients were lost to care (only 51%), which was in accordance with what experience and reports from other centers had indicated.^12
–14 In our study, overall reengagement occurred in 44% of those who were lost to care, suggesting that contact with an outreach coordinator may be an effective intervention to reengage patients into care. In addition, we found that OOC patients who were lost to care were more likely to be women and also more likely to be African American than those who transferred care to another clinic, which may help as an early indicator for which OOC patients are actually lost to care. In many patients, the phone outreach intervention alone was successful in reengaging patients, representing a low-cost and relatively time-limited intervention that could be implemented in other clinic settings. However, poor overall reengagement was still seen despite contact with the coordinator, possibly indicating the inability to address the individual's specific barrier to care during outreach intervention alone. The outreach contact was unfortunately not able to assist with interventions for social support or economic issues unless the patient engaged in a clinic appointment for case management and social work interventions. The reengaged and not reengaged groups were similar to each other and also to the OOC population, indicating that group characteristics did not predict response to the intervention. Alternatively, this may also indicate overall acceptability as no patient subset was overrepresented among patients who did not reengage. Patients who were lost to care were more likely to be female and African American than patients who transferred care, allowing some insight to which OOC patients from our clinic were actually OOC. African American race was linked to increased missed visits in a Birmingham study by Mugavero and for a cohort of US veterans reported by Giordano, but these associations were not seen in another southern HIV clinic in New Orleans noted by Richey.^5,8,21 In contrast, however, these studies represent patients who are poorly engaged in care as opposed to our population of patients already lost to care.

A strength of this study is that it represented a large population from the South, comprising both urban and rural, minority, and female patients. The interventions are uncomplicated although sometimes time intensive, possible within the available funding structure of RW, and could be performed by a patient navigator. There were, however, a number of notable limitations to this study. The study was not randomized and was the first of this intervention type at our program. As such, the percentage of patient reengagement or change in retention in care before the intervention period was not known for comparison with our study result. Studies support that our inclusion criteria (using the 5-year time period but also excluding those retained in care in 2014) allowed enough time for patients to return to care naturally, and yet they had not returned to care by the beginning of the intervention period.^12,13 For example, Gill reported in their study of OOC patients, that 67% of OOC patients never reengaged at all once being lost to care.¹³ In a different study, Byrd reported on a group of patients having a 1-year gap in care and found that 70% of patients who reengaged did so within 6 months (median 3.2 months).¹² However, 21% of the patients who did reengage had persistent engagement issues and fell OOC completely within 60 months.¹² These studies would suggest that if OOC patients in our clinic were going to reengage without intervention, they would have done so before the time in which we offered an outreach intervention. Also, the addition of 10% newly enrolled patients each year, but an overall stable total clinic population, demonstrated that about ∼10% of patients were being lost annually and not returning to care. Another limitation to our study was that many of the patients who were initially identified as OOC were not lost to care and there was substantial time spent on classifying patients, indicating a need for a better data system. As mentioned above, state surveillance systems could help decrease the amount of time spent classifying patients to improve the amount of time spent providing outreach interventions. In addition, the time elapsed since the last appointment, up to 5 years, may have limited the intervention effectiveness as inaccuracy of contact information is assumed to increase with time, making outreach success less likely over time. Finally, the availability for home visits was limited by the need to balance available funding and the multiple outreach interventions among the targeted population.

Poor engagement and retention in care continue to be a large problem among PLWHA in the United States with resultant poor clinical outcomes. Diverse patient groups exist among PLWHA, including newly diagnosed, never linked to care, poorly engaged in care, and lost to care. Each of these groups may require different interventions to improve retention in care. Our current funding environment is tenuous and continued work is needed to determine effective interventions to engage and retain these diverse PLWHA in HIV care.

Footnotes

Acknowledgments

This work was supported through grant support by the Health Resources and Services Administration Ryan White grant awarded to the Medical University of South Carolina HIV clinic. The findings and conclusions herein are those of the authors and do not necessarily represent the official position of the Health Resources and Services Administration. We thank the staff and providers involved with the Medical University of South Carolina HIV clinic for their tireless efforts to improve the care of patients. We honor Dr. J. Michael Kilby for his achievements and dedication to improve the care of individuals living with HIV. This work was supported by the Health Resources and Services Administration under the Ryan White Part B grant (no. HV-6-459) and Ryan White Part D grant (no. H12HA24812).

Author Disclosure Statement

M.C.B., L.S., and L.E.R. report no grant funding outside the submitted work. J.M.K. reports grants outside the submitted work from ViiV/Glaxo Smith Kline (Single Study); GSK/ViiV (Long Acting Antiretroviral Enabling Study); Gilead Sciences, Inc. (GS-US-292-0104; GS-US-236-0128; GS-US-292-0112; GS-US-366-1160; GS-US-366-1216).

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