If you had an opportunity to participate in the Kick-Off Webinar, we learned that roughly 1 in 8 people living with HIV who were seen in the first half of 2010 at participating sites were lost to follow-up and unreachable by the beginning of 2011. These data are based on close to 50 submissions of the Retention Follow-up Tool by fellow Campaign participants, representing close to 31,000 patients. Luckily, we also learned about strategies that have been successfully employed by a range of sites. You can read about the Retention Pool Follow-up and Lessons Learned at www.incarecampaign.org under Resources.

We have received the first round of Campaign performance data submissions, and we are looking forward to contacting sites that submitted data and improvement updates in the coming weeks.  Additionally, the HRSA HIV/AIDS Bureau and NQC are looking forward to beginning local conversations with Campaign participants by convening local groups. Many peer providers across the country have stepped forward to volunteer as Quality Champions to convene these local Campaign meetings. We are still seeking Quality Champions, specifically in the Central Plains and West Coast regions. Take a leadership role in this important national initiative today by signing up to become a Quality Champion! Learn more at www.incarecampaign.org or email incare@nationalqualitycenter.org.

Horstmann, E., J. Brown, F. Islam, J. Buck, & B. Agins. "Retaining HIV-Infected Patients in Care: Where Are We? Where Do We Go from Here?" Clinical Infectious Diseases (2010); 50: 752-761.

This article published in 2010 reviews current literature and research regarding retention and engagement in HIV medical care. The authors provide a framework for defining retention and discuss the issues that need further research to fully understand its role.

Horstmann et al. reflect on the many ways retention is measured in the literature, identifying three distinct areas: missed appointments; medical visits at regularly defined intervals; and a combination of these methods. However, the authors cite inconsistency in what kinds of visits (e.g., primary care, specialty care, phlebotomy) are included or excluded in determining retention.

Further, an alternative approach to retention explores categorical classification of people living with HIV into 3 user groups. These include:

1. Regular Users - complete medical appointments at least every 6 months; are not "no shows" for any scheduled primary care appointments.
2. Sporadic Users - complete at least 1 appointment per year; are "no shows" for at least 2 primary care appointments and use an HIV urgent care clinic at least once a year.
3. Nonengagers - complete initial visits but do not return.

Horstmann et al. point to the usefulness of such classification because it allows a targeted approach based on client engagement and helps to identify the best measures to determine retention in care.

Using these classifications in a September 2003 presentation on AIDS in New Orleans, Dekker et al. reported on the distribution of a clinic population and found that 25% were regular users, 32% were sporadic users, and 43% were nonenagers. Multiple sources have found that missed appointments and, thus, nonengagement in care include common demographic and clinical characteristics in these patients:
 

Although the clinical characteristics seem contrasting, the authors point to the fact that patients generally do not seek medical care when feeling well and patients who are very ill do not attend medical appointments because they feel too sick. Horstmann et al. also reference studies indicating the most common reasons for missing appointments were forgetting, conflicting appointments, or feeling too sick to attend. In a qualitative study, Mallinson et al. also found that becoming a Regular User required decreasing structural and practical barriers to care (i.e., stigma, transportation, food, housing, health literacy).

The review highlights models within the HIV field and other diseases to retain persons in medical care. Successful strategies are those that have a multipronged approach such as reminder calls before an appointment, updating patients' contact information, phone calls by peer educators after 3 consecutive missed appointments, patient navigation team, case management, social support, and connection to mental health services. Improving the retention of persons living with HIV will reduce costs, impact the health of the individual, and improve public health outcomes.