[ARCHIVED] Adherence & Retention

Hi Peter,

what really worked in our clinic is screening the list of patients who had an appointment but didn't come and then just call them up to inquire if they want a new appointment. Most of our patients just forgot their appointment and were glad that we contacted them. Some "die hard" patients however fail many times to come to their appointment and need more intensive counselling.

Ann Deschamps

Dear all
I have seen a program in Zambia where a community radio has been used to invite patients. Of course the program is used for other things and even though names are mentioned, nobody would identify that the person is being invited for HIV related visits. This particular clinic had almost no loss to follow up. Has anybody used this in another setting?

Sorry in advance for the long post-



We have been conducting a similar exercise (searching for evaluated interventions in the literature). So far, we've found the ARTAS intervention evaluated and supported in the US but aside from that, we are not finding very much. HRSA in the US recently selected several sites as grantees for retention-in-care program development and evaluation- http://hab.hrsa.gov/special/woc_index.htm. But we are a bit away from results for these.



Suggestions for how to improve retention in care are also provided http://www.iasusa.org/pub/topics/2008/issue5/156.pdf





BUT, I think this is really (yet another?) a situation where practice is outpacing research. People are certainly developing and implementing programs to prevent gaps or discontinuation of care, but the literature right now has little to offer in terms of evaluated interventions. Based on the review we have been conducting on correlates and predictors of retention in care, it appears that structural barriers are often highlighted as critical but other more 'psychosocial' factors are gaining recognition as well.



My group's area of interest is in the psychological pieces to coming in and staying involved in HIV-care- what is it ...

Sorry in advance for the long post-



We have been conducting a similar exercise (searching for evaluated interventions in the literature). So far, we've found the ARTAS intervention evaluated and supported in the US but aside from that, we are not finding very much. HRSA in the US recently selected several sites as grantees for retention-in-care program development and evaluation- http://hab.hrsa.gov/special/woc_index.htm. But we are a bit away from results for these.



Suggestions for how to improve retention in care are also provided http://www.iasusa.org/pub/topics/2008/issue5/156.pdf





BUT, I think this is really (yet another?) a situation where practice is outpacing research. People are certainly developing and implementing programs to prevent gaps or discontinuation of care, but the literature right now has little to offer in terms of evaluated interventions. Based on the review we have been conducting on correlates and predictors of retention in care, it appears that structural barriers are often highlighted as critical but other more 'psychosocial' factors are gaining recognition as well.



My group's area of interest is in the psychological pieces to coming in and staying involved in HIV-care- what is it about the way people think and feel about HIV-care and about their use of it that distinguishes those who use it regularly and those who do not?-- so looking at how the individual within many larger interacting systems and in the context of the affordances and limitations of one's daily life (e.g., using, drinking, depressed, economically struggling, avoidance of things that remind one of HIV, internalized stigma, so on) engages in HIV-care. We've developed and are evaluated a model for this borrowing from an information, motivation, behavioral skills model-based approach, and there are a handful of other models of behavior that may apply.



In addition to the strategies that Peter requests- I was hoping people could also speak to whether or not the strategies in use or under development target individual-level psychosocial factors (such as supports for adjustment to living with HIV, positive attitudes towards care, prioritization of self-care) directly or via referral?



For defining linkage back to care, Michael Mugavero and colleagues just published on this

http://www.liebertonline.com/doi/pdf/10.1089/apc.2010.0086

and it could offer guidance on what will be considered a gap or a return to care. From my perspective, if someone fails to return to clinic for a scheduled appointment and does not reschedule at all, that may be a decent flag for potential problems with retention. I think we can say that being out of care in terms of cumulative days out of care and quarters without a care visit have been well associated with poorer outcomes, but much of that work is for patients initiating ARVs and that first year on ARVs. So I wonder about how it applies to someone who has been in care for 10 years. “Return to care” for me is literally coming back after a gap, period. Whether or not that lasts or leads to consistent use of care is more what Michael is calling 'visit constancy'.



I am really looking forward to learning more from the community on these critical issues!



Rivet





K Rivet Amico, PhD

Research Scientist

Center for Health, Intervention and Prevention

University of Connecticut

810 360 8716

800 518 0243 (fax)

Hi all,

My name is Clare McBee and I manage the Directly Observed Therapy (DOT) program
for PIH's Prevention and Access to Care and Treatment (PACT) Project in
Dorchester, MA. I wanted to offer my experience as someone who is working in an
intervention aimed at improving retention and adherence for HIV patients. (Sorry
for the length!)

(a summary of what PACT does can be found on PIH's website:
http://www.pih.org/pages/usa/)

Eligibility for enrollment in PACT services is:
-CD4 of <500
-VL> 1,000 in the last 6 months
-history of non-adherence to treatment (HAART and provider
appointments...patient is often on salvage regimen)
-patient lives in our service area

We have relationships with several area hospitals that refer clients that fit
this criteria. Once an intake is done, the patient is assigned a PACT community
health worker (Health Promoter), who utilizes harm reduction, home-based
education (using a PACT Health Promotion curriculum) and accompaniment to
provider appointments to promote treatment adherence. PACT health promoters
typically see patients 1-2/week. If this level of support is not enough to
increase the patient's treatment retention and adherence, he/she is then offered
DOT. If the ...

Hi all,

My name is Clare McBee and I manage the Directly Observed Therapy (DOT) program
for PIH's Prevention and Access to Care and Treatment (PACT) Project in
Dorchester, MA. I wanted to offer my experience as someone who is working in an
intervention aimed at improving retention and adherence for HIV patients. (Sorry
for the length!)

(a summary of what PACT does can be found on PIH's website:
http://www.pih.org/pages/usa/)

Eligibility for enrollment in PACT services is:
-CD4 of <500
-VL> 1,000 in the last 6 months
-history of non-adherence to treatment (HAART and provider
appointments...patient is often on salvage regimen)
-patient lives in our service area

We have relationships with several area hospitals that refer clients that fit
this criteria. Once an intake is done, the patient is assigned a PACT community
health worker (Health Promoter), who utilizes harm reduction, home-based
education (using a PACT Health Promotion curriculum) and accompaniment to
provider appointments to promote treatment adherence. PACT health promoters
typically see patients 1-2/week. If this level of support is not enough to
increase the patient's treatment retention and adherence, he/she is then offered
DOT. If the patient consents to DOT services, PACT DOT specialists begin daily
home visits (either 5 or 7 days a week) at a client's dosage time. They conduct
pillbox checks and provide education/support around working through adherence
barriers. DOT services can last for as long as the client requires daily support
(it is a decision made between the patient and their PACT-provider team that
greatly factors in CD4/VL results), after which they are gradually tapered off.
Throughout a client's time in PACT services, his/her PACT Health Promoter and
DOT Specialist remain in close contact with the client's providers, reporting on
adherence progress. Additionally PACT community health workers are given a great
deal of clinical supervision and training to assist them in addressing the
various psychosocial challenges their patients face.

Our home-based community health worker approach has helped many individuals who
were previously loss to follow-up stay connected to treatment. But we still face
significant challenges. Many of our clients are active substance users, which
greatly impacts their engagement in services. Additionally, the majority of PACT
clients have been living with HIV and adherence issues for many years. Some, and
through past OI infections, have permanent cognitive impairment. For those with
cognitive challenges, the home-based aspect of our work has proven invaluable to
their retention. But we have also been forced to reduce or creatively augment
other parts of our intervention that focus on education and
empowerment/motivation.

My role at PACT is more programmatic supervision and monitoring/evaluation. But
I would be happy if there's interest to connect you to members of our research
team for more information.

Sincerely,

Clare McBee

clare mcbee DOT program manager
PACT project
partners in health/brigham & women's hospital
622 washington street, 3rd fl. dorchester, MA 02124

office 617.474.8520 | cell 617.529.8471 | fax 617.474.8535

http://www.brighamandwomens.org/socialmedicine/pact.aspx
http://www.pih.org/where/USA/USA.html

Thanks all for your rapid responses. I had a feeling that this issue would bring out some interested parties with great experiences to share.

I was hoping, however, to redirect the conversation towards interventions that would improve initial linkages to care.

As per my (now edited) note at the top of the discussion, we are trying to develop some systems to encourage people who test positive in a national campaign (and who may be fairly healthy) to attend clinic and enroll in pre-ART or ART care... once they do that, we will have worries about retention, but we are focused on the first step right now.

Any suggestions or comments on this topic are very welcome. (Once we solve this, I will be happy to redirect us again back to adherence and retention issues.)

Many thanks in advance,
Peter

Hi Peter et al.

I am glad my first post on this forum is in response to an old friend. How are you Peter?

I've enjoyed learning from this group. I echo Rivet's comment that practice is outpacing research. I am not aware of any high quality studies on this topic. However, there are some ongoing trials specifically addressing initial linkage into care.

Tom Coates has an interesting one in Kampala (http://projectreporter.nih.gov/project_info_description.cfm?aid=7893778&icde=...).

Ingrid Bassett has an important one in Sout Africa (http://projectreporter.nih.gov/project_info_description.cfm?aid=7838990&icde=...).

I am also currently designing a trial for rural Uganda involving the use of community-based peer health workers to link patients to care from immediately at their time of diagnosis.

Given the relative lack of evidence, I think programs will and should continue to move forward with interventions based upon what we modestly know from the literature and what makes sense to each program, backed, if possible, by good M&E/operations research. Modifications can then be made in the future as the evidence-base evolves.

Cheers,
Larry