Reaching Out to Missing Patients

Summary and Comment |
September 27, 2013

Reaching Out to Missing Patients

  1. Abigail Zuger, MD

Case workers convinced about 75% of patients who had stopped receiving care to reengage.

  1. Abigail Zuger, MD

Even though most people understand that untreated HIV infection can be life threatening, studies consistently show that many individuals who know they are HIV infected disengage from medical care. This statistic has become more concerning now that treatment-as-prevention efforts are under way.

Using CD4-cell counts and viral load reports in a New York City HIV surveillance registry as a proxy for medical care, researchers identified 797 patients who had initiated care following diagnosis but had apparently been lost to follow-up (defined as having no laboratory results for ≥9 months) between July 2008 and December 2010. Of the 684 patients who could be located, 229 (33%) were actually enrolled in care, but 409 (60%) were confirmed to have disengaged. These individuals were predominantly male, black or Hispanic, U.S. born, and aged 30 to 49; 40% had been out of care for 18 months or longer. A subset was interviewed about why they had left care; the most commonly reported reason was they “felt good” about their health.

Case workers offered all 409 disengaged individuals help with reengagement in care: 23% refused, and 77% accepted. Fifty-nine percent actually reengaged in care, and about half had at least two clinic visits during the ensuing year.


These data suggest that about 25% of people declining medical care for HIV cannot easily be reengaged, but the rest may benefit from outreach and coordinated case management. The authors cite the success of tuberculosis management, which relies on providers to keep the health department current on all clinical interactions so that recalcitrant patients can be identified and quickly located and reengaged in care.

Editor Disclosures at Time of Publication

  • Disclosures for Abigail Zuger, MD at time of publication Editorial boards Journal Watch AIDS Clinical Care; Clinical Infectious Diseases Other New York Times medical writer


Reader Comments (1)

Camp, Rob Other, Infectious Disease, EUPATI

Abigail, my back of the envelope calculations say to me that of the 797 originally lost to follow-up, some 200 were in care of some sort one year after being re-found (again, I don't know if it's about half of the 409 or about half of the 59%). To that, I say great, 200 back in! But that is not 75% of the 797, or of the 684, of the 409, OK it's closer, but then the headline is very misleading!

So, of the 568 who we might say needed to be found (797 - 229), 200 or so were in continuous care again. My questions are the big questions. WHY do people fall out of care (ask them!) and why do they not stay in care (ask them!). It's the only way we can make policies and interventions that don't allow them to fall through the cracks in the future.

Sure, there are always those who very rationally decide "now is not the time", but that can be captured. What does not help us is simply to turn ourselves into modern day "bounty hunters" w/o looking into the quite possibly difficult reasons behind all the new work we are doing.

I mean, treaters should be providers, not bounty hunters, right? : - ) And the only way to achieve that is to find out why they "escaped" in the first place.

(If all this stuff is in the paper, sorry, I don't have full access.)

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