Partnership, collaboration, and communication are the core elements of the retention and re-engagement project, Accessing Care Together (ACT), developed by Primary Health Care, Inc. (PHC) and the AIDS Project of Central Iowa (APCI). As a Ryan White HIV/AIDS Program Part C grantee located in Des Moines, PHC has always worked closely with APCI, a Ryan White Part B grantee, sharing information and connecting clients with the State's ADAP Program. The ACT project, which is in the pilot phase, enables the two organizations to share information in a more systematic and formalized way than ever before. The project will also have a strong consumer involvement component, including the creation of a Consumer Advisory Board.

The ACT Re-Engagement Specialist is a shared position between both programs. This position involves finding clients that have no evidence of medical care for more than one year. The Re-Engagement Specialist helps to improve communication and navigate confidentiality barriers between PHC and APCI.

Identifying clients that are truly lost-to-care (no evidence of medical care in 12 or more months) is a joint effort and is accomplished through multiple steps. These include:

1. Both PHC and APCI review all clients in CAREWare and identify those clients no longer engaged in medical care. The last case note from CAREWare is added to the client's information.

2. The lists are sent to the Iowa Department of Public Health's Surveillance Office for further investigation to categorize each client's engagement status (deceased, moved, incarcerated, in care at a different medical provider, or lost-to-care).

3. The lists are sent back to the respective programs and referrals are made to the Re-Engagement Specialist for those clients identified as lost-to-care by the Surveillance Office.

As part of the ACT project's referral process, a case conference occurs between the Part B Case Manager, Part C Nurse Manager, and the Re-Engagement Specialist. Providers share information about the client including: last known address/phone number, emergency contact, and any additional information that might help the Re-Engagement Specialist find the lost-to-care client. The Re-Engagement Specialist then goes out into the field and attempts to contact the client via phone, letter, or face-to-face contact. All contacts, outreach services and case notes are tracked in CAREWare for clients referred by APCI and in PHC's electronic medical record for their clients. Once the client is located the Re-Engagement Specialist works with them for 3 to 6 months identifying reasons why the client dropped out of care, helping to remove these barriers, and supporting the client's return to medical care.

Currently, the initial lost-to-care list is being analyzed by the Surveillance Office. Until the list is returned to PHC and APCI, the Re-Engagement Specialist is working with internal referrals for clients that have missed multiple appointments or those that PHC is unable to contact due to returned mail or disconnected phones. While still in the early stages of the pilot, the first internal referral client came in for a medical appointment last week!

Mugavero MJ, Lin HY, Willig JH, et al. Missed Visits and Mortality among Patients Establishing Initial Outpatient HIV Treatment. Clin Infect Dis. 2009; 48:248-56.

In this article Mugavero et al. determine that retention in HIV care is an independent predictor of survival; and mortality rates are significantly lower among patients seen 3 or 4 times per year versus once or twice annually.  

The authors used a retrospective analysis nested within a prospective HIV clinical cohort study evaluating 543 patients initially starting HIV medical care between January 2000 and December 31, 2005 at the University of Alabama Birmingham. The authors sought to determine the relationship between missed visits in the first year of care and long-term survival. Patients were categorized into 2 groups - those that did not miss any visits and those that missed visits during their first year of HIV care. Sixty percent of study participants (n=325) missed a visit within the first year of HIV care, whereas 40% (n=218) attended all scheduled visits in the first year of care.

Factors statistically associated with missed visits within the first year of HIV care included:

• younger age
• black race
• patients with public health insurance.

Factors associated with long-term survival involved:

• missing at least one visit within the first year of HIV care
• older patients
• patients with public health insurance
• baseline CD4 <200 cells/mm3.

For those patients that missed > 2 visits, survival factors were similar to those above.

Mugavero et al. found that mortality rates were more than 2 times higher for those that missed appointments in the first year, as compared to those patients that did not miss any visits in their first year of HIV care (2.3 vs. 1.0 deaths per 100 patient-years of follow-up).

Results from this study can be applied to clinic settings in helping to identify a priority population in which to focus retention efforts. Missed visits during the first year of HIV care acts as a signal for patients at risk for worse health outcomes.