Keeping some patients with HIV in care can be a challenge.
To better guide clinical activities to improve engagement and retention in care, the International Advisory Panel on HIV Care Continuum Optimization published guidelines for optimizing the HIV care continuum in adults1 .
In these guidelines, “systematic monitoring of retention in HIV care” was recommended with “proactive engagement and reengagement of patients who miss clinic appointments…”1. Case management and intensive outreach were mentioned as possible interventions.
In the area of outreach and contact interventions, several have been found to be successful, but there is no consensus as to which should be implemented. Due to the busy schedule of clinic staff and interventions that often are time intensive, the amount of time dedicated to these programs may be restricted within our current funding limitations.
Given the diversity of the HIV clinics across the country, some of the evidenced-based interventions may be more effective in some settings than others. Thus a succinct, universally applicable, and highly successful intervention is ideal.
Globally, there has been a focus on targeted interventions and strategies to improve each step in the HIV treatment cascade, knowing that improvements in testing, linkage, and retention will improve clinical outcomes for individuals with HIV as well as decrease HIV transmission2.
A recent study using mathematical modeling predicted that 61% of all new infections with HIV were transmitted from HIV patients who were not retained in care3. There are evidence-based services known to improve engagement and retention in care, including case management, mental health services, substance abuse treatment, drug assistance programs, and food, housing, and transportation assistance4.
On the Ground
At the Medical University of South Carolina Ryan White HIV clinic, we have HRSA funding to provide care to more than 1,200 patients annually without regard to pay, primarily in the greater Charleston area, with extension into the three surrounding counties.
The Ryan White clinic offers the above mentioned evidence-based services along with access to dedicated board-certified infectious disease providers, women’s healthcare, and nephrology as well as multidisciplinary care with social workers, pharmacist, nurses, and support staff.
Despite these evidence-based strategies to improve retention in care having already been implemented, there are still poorly retained patients in need of intervention and reengagement. In South Carolina, in 2012, only 53% of patients in the state were retained in care6. Studies focusing on retention in care have indicated there are a multitude of reasons for loss to follow-up and poor retention5, many of which could be addressed by available services if we could bring the patient back into care.
To that end, we piloted an intervention using an outreach coordinator who was a licensed professional counselor with experience working with people living with HIV7. Initially, we piloted a phone, letter, and home visit intervention to patients lost to care in the previous five years, but found low response rates, possibly due to out-of-date contact information and longer times since last appointment7.
We suspected that outreach interventions may be more successful with patients at risk of falling out of care, with timely intervention close to the last visit to ensure we could find the patient. To target these patients, we defined “at risk of falling out of care,” as missing a clinic visit in 2015 and having intervention from the outreach coordinator. She used phone call and letter interventions to contact patients for outreach, visit reminders, and missed visits to engage and reengage patients. She recorded the amount of time used for interventions in 15-minute intervals.
The main outcomes were reengagement (having a visit in 2015) as well as retention in care (HRSA definition of two visits divided by 90 days in 2015). Of more than 1,200 patients cared for at our clinic in 2015, 61(5%) met the definition of at risk of falling out of care. The mean intervention time was an hour, the median 45 minutes. Fifty patients (82%)of the patients were reengaged and 22 (36%) were retained in 20157. As phone calls and letters are simple interventions and the mean intervention per patient was only an hour, this intervention was both succinct and successful.
Several studies have looked at interventions in patients with a recent history of missed clinic visits or those without evidence of retention in care, a population similar to our study on those at risk of falling out of care.
For example, Gardner and colleagues presented a randomized trial that included both newly diagnosed patients and “at risk” patients, with either missed clinic visits or gaps in care, to receive standard-of-care appointment reminders, enhanced contact (EC) with a dedicated person, or EC plus a one-hour skills session9.
They demonstrated improvements in visit constancy, another measure of retention in care, for those patients with EC (56% vs 46%) but not with the additional skills session (Gardner 2014). These authors also published evidence of cost-effectiveness as the average cost per patient retained over the standard of care was $3,83410.
Additionally, Bradford and colleagues presented analysis of four programs enrolling patients at risk of falling out of care to receive navigation interventions from peers or paraprofessionals (Bradford 2007). They demonstrated improvements in undetectable HIV viral load (35% to 53%) as well as increased attendance of two or more visits in six months (64% to 79%)11.
In addition to these studies focusing specifically on those at risk for falling out of care, there is also literature that supports intervention beyond the initial at-risk period.
For example, Udeagu and colleagues reported results of a loss to follow-up intervention utilizing case management to reengage patients who had fallen out of care (Udeagu 2013). They describe a city-wide effort from the public health department with a similar outreach intervention to that reported in our study. They used case-workers in a step-wise process with a phone call, letter, and home visit intervention and were able to reengage 57% of those lost to follow-up over an almost three-year period12.
The inclusion criteria for this study was absence of care over the previous nine months using a lab surrogate for care, a CD4 count or HIV viral load12. As a result of this definition 33% of the patients initially identified were currently in care and they excluded patients they were unable to contact12.
Our study had comparatively good results using an LPC with a total reengagement of 82%, with 36% retention in care in 2015 -- although the patients were not necessarily out of care for the same duration as that presented by Udeagu and colleagues.
Another study, reported by Giordano and colleagues, tested an intervention for peer mentoring to out-of-care patients with HIV during hospitalization which did not show an effect on retention in care and viral load outcomes14.
Finally, a report from Wohl and colleagues focused on 1,100 out-of-care patients and found 78 were lost to care. They demonstrated interventions by trained navigators resulted in 82% retention in care following the series of extensive reengagement services and interventions13.
While there is clearly evidence for contact based interventions to reengage out-of-care patients and maintain engagement for at risk patients, retention in care remains a large problem nationally.
One of the key findings in the published data is that contact interventions using trained staff or peers can effectively engage or reengage patients. Moreover, early intervention and high intensity intervention may result in improvement of the ultimate outcome.
As each clinic may have a different approach to contact interventions for engagement in care, it is important that the information is shared with other HIV providers so we can provide the most cost-effective and universally acceptable interventions to our patients in this era of funding limitations and uncertainty.
4. Horstmann E, Brown J, Islam F, et al. Retaining HIV-infected patients in care: Where are we? Where do we go from here? Clin Infect Dis. 2010;50:752-61.
6. Edun B, Iyer M, Albrecht H, Weissman S. The South Carolina HIV cascade of Care. South Medical Journal 2015;108:670—674.
7. Bean M, Scott L, Richey LE. Use of an Outreach Coordinator to Reengage and Retain Patients at Risk of Falling Out of HIV Care, Does the Amount of Time Matter? Poster Presentation at the Infectious Diseases Society of America Annual Meeting in New Orleans. October 2016.
8. Bean M, Scott L, Richey LE. Use of an Outreach Coordinator to Reengage and Retain Patients with HIV in Care. International Physicians in AIDS Care (IAPAC) 11th International Conference on HIV Treatment and Prevention Adherence in Fort Lauderdale, FL. May 2016.
9. Gardner LI, Giordano TP, Marks G et al. Enhanced personal contact with HIV patients improves retention in primary care: a randomized trial in 6 US HIV clinics. Clin Infect Dis 2014;59:725—734.
10. Shrestha RK, Gardner L, Marks G, et al. Estimating the cost of increasing retention in care for HIV-infected patients: results of the CDC/HRSA retention in care trial. J Acquir Immune Defic Syndr 2015;68:345—350
11. Bradford JB, Coleman S, Cunningham W. HIV system navigation: an emerging model to improve HIV care access. AIDS Patient Care STDS 2007;21:S49—S58
12. Udeagu CC, Webster TR, Bocour A, Michael P, Shepard CW. Lost or just not following up: public health effort to re-engage HIV-infected persons lost to follow-up into HIV medical care. AIDS 2013;27:2271—2279
13. Wohl AR, Dierst-Davies R, Victoroff A, et al. The navigation program: an intervention to reengage lost patients at 7 HIV clinics in Los Angeles county, 2012-2014. J Acquir Immune Defic Syndr 2016;71:e44—e55
14. Giordano TP, Cully J, Amico KR, et al. A randomized trial to test a peer mentor intervention to improve outcomes in persons hospitalized with HIV infection. Clin Infect Dis 2016;63(5):678-86.