2. Defining In/Out-of-Care Status

Overall Estimates On Care Status  TOP

Over one million Americans are living with HIV/AIDS ( 1 ), and the proportion in care has been rising over the past decade. From 1996 to 2000, the estimated proportion in care increased from one-third to one-half of the total. ( 2 ) Yet, many are still not in care. Just how many is a complex question as no national data source clearly measures who is in ongoing HIV care. CDC studies use the measure of having received a CD4 test—within a year of HIV diagnosis—as a proxy for being in care. After all, receipt of CD4 and RNA tests at regular intervals is part of essential clinical monitoring that comprises good HIV care.

But this measurement framework is limited to those newly diagnosed and is recognized as having methodological limitations. Many PLWH delay getting a CD4 test within one year of diagnosis but may eventually get in care. . In fact, RWCA SPNS outreach grantees report that it may take up to 18 months to engage the hardest-to-reach clients into care. Alternatively, having gotten a CD4 test may also not be a good indicator for receipt of care as it may have been simply a part of having gone through HIV counseling and testing. Ongoing work by CDC will provide more detailed information on the in-care and out-of-care groups, such as the Morbidity Monitoring Project (MMP).

Complexities Of Defining Care Status  TOP

So what does in or out of care mean? This is not a straightforward question, although it seems like a matter of polar opposites. A clear definition of “in care” can help providers and policymakers determine which clients are not in care, where resources need to be directed, and what programs are most effective at engaging people in care. Following are complexities of defining care status. They bolster the value of using a fluid concept—an Engagement Continuum (see below)—when defining care status.

• Clinical Measures . Some definitions on care status are based upon the standard of HIV care, particularly receipt of CD4 and RNA tests at regular intervals. However, in some states, the frequency and time period over which receipt of a CD4 test result is considered acceptable clinical practice varies.
• What Qualifies as HIV Care ? HIV is a very complex disease, so being in care is not just a matter of being on ART. Guidelines only call for ART at specific CD4 and RNA levels. And clients need to be ready to be on ART so they can adhere to complex regimen requirements. Finally, those patients regularly receiving case management and ancillary services needed to prepare them for eventual ART start-up; they may be very much in care in terms of getting fully prepared for a lifetime of complex antiretroviral treatment.
• Client Needs/Client Choices . Some clients may do quite well with minimal services, and choose not to take antiretrovirals, even if medically indicated.
• Self Reports . Patient self reports on their care status are used in surveillance systems. But how valid is this as a measure if people do not accurately report their care status? The answer is not clear. CDC Antiretroviral Treatment and Access Studies (ARTAS) suggest that many clients accurately self-report their care status But a client being interviewed upon initial intake might self-report being in care, even if entering the system the day before, or might self-define a rare contact with an outreach program or a doctor as being in care.
• Data Disconnected . Clients may be getting services from multiple sources and different systems and databases are typically not linked, so a provider might not always know if a client was getting care elsewhere. Additionally, clients may fall in and out of care (e.g., periods of homelessness, substance abuse, cycling through the correctional system) and thus may or may not get reported accurately as being in care. Efforts are underway to better link HIV care data systems, such as those under the Ryan White CARE Act, but systems do not extend across funding streams.

Engagement in Care Continuum

In light of the complexities of defining in care, an engagement in care continuum provides a more flexible definition that can help service providers and policymakers design programs to meet variable needs.  At one end are those completely unaware of their HIV status and thus not in care.  At the other extreme are those fully engaged in continuous HIV care.  In between are degrees of engagement.  Ideally, clients would progress from not knowing they are infected to becoming fully engaged.  The reality is quite different.  Any given client may cycle through different stages at given time periods.