How to assess engagement in HIV care

By Moses Bateganya | 11 Mar, 2014

I followed with interest CROI presentations and posters especially those on linkage, engagement and retention in HIV care. I am still struggling with the difference between retention and engagement in care especially as it related to measurement of both. I know engagement has been used in the US setting but wonder how the concept relates to resource limited settings. Is there any standard definition for engagement and how can HIV programs in resource limited settings go about estimating it.




K. Rivet Amico, PhD Moderator Emeritus Replied at 10:27 AM, 20 Mar 2014

As far as I know, there is not a single definition for engagement that is widely accepted. What I like, however, about the term is that it is larger in scope than looking at the discrete behaviors that come together to help someone living with HIV to be active in his/her care. Different chronic disease models call this different things (eg., patient activation), but most have a concept that capture someone overall investment and ownership in caring for their disease, For HIV, we often have separate studies and interventions that target linking to care, ART uptake, sustained ART adherence, and being retained in care (pre-ART, post-ART). We have a tendency to reflect the silos depicted in the cascade of care. There is an increasingly visible movement to try to understand and support engagement across the continuum- so matter where you are in terms of treatment, you can be engaged. Operationally, it can boil down to observable acts/events- show up to care, follow current recommendations (fill/take ART, wait on ART but come back in 3 months)- but the point is that these are plural- not a single act but a set of them. From a psychological perspective, this also deals with adjustment to living with HIV and feeling a sense of input, commitment towards and investment in one's care plan.

That is at least my perspective on this- which certainly comes with bias as I think this is a way to work with individuals living with HIV that is more sensitive to the many of factors and behaviors that influence benefiting from HIV-care. As far as a single measure for engagement that digs deeper than observable metrics (link+come back in recommended intervals+adherence=durable suppression), I am not familiar with one but would certainly be a worthwhile investment to try to create one!