Adherence & Retention

Dear Clare

Not too many patients will have similar conditions at a single point of time, so we may have few volunteers that may have been trained with additional skills. They can manouvre these patients through certain periods of their exacerbations. And the care , compassion, need and support will definitely vary from case to case. If you can get out a few case studies with relevant findings - maybe you will receive a better response from the global community which can lead to a focussed and deliverable care pattern.

In my experience one such recalcitrant patient would be attracted to some "MURI"( puffed rice - very common and cheap ) offered by the health worker when she used to visit. And then gradually she inducted him into the local primary school as a doorkeeper where this patient began to get into the habit of timeliness once again in his life.

Thanks and regards
Shanta

Many of the interventions found effective to date actually exclude those with high levels of cognitive impairment. Estimates are at about 15-50% for proportion of people living with (aging with) HIV with diagnosable cognitive impairment [Schouten et al 2010-- http://www.ncbi.nlm.nih.gov/pubmed/21160410] -- so what you are discussing here is not all that uncommon but at the same time, not presently well represented in the available adherence intervention literature. Problems in short term memory, or planning/execution abilities, would suggest to me that interventions targeting motivation primarily may, as you note, need to be retooled--and maybe interventions that primarily target skills could offer some guidance or a direction to explore. There is Andrade and colleagues work (2005) that found that a pill reminder device was effective in improving adherence among mild cognitive impairment patients, and the idea of supporting memory with tools (cards, notebook, pillcase, alarms) [like described in http://www.medscape.com/viewarticle/513278_sidebar1] sounds most promising- but it does assume there is enough cognitive functioning to negotiate the use of these tools. You mention in your email that you have tried several of these strategies and they don't seem to help these patients ...

Many of the interventions found effective to date actually exclude those with high levels of cognitive impairment. Estimates are at about 15-50% for proportion of people living with (aging with) HIV with diagnosable cognitive impairment [Schouten et al 2010-- http://www.ncbi.nlm.nih.gov/pubmed/21160410] -- so what you are discussing here is not all that uncommon but at the same time, not presently well represented in the available adherence intervention literature. Problems in short term memory, or planning/execution abilities, would suggest to me that interventions targeting motivation primarily may, as you note, need to be retooled--and maybe interventions that primarily target skills could offer some guidance or a direction to explore. There is Andrade and colleagues work (2005) that found that a pill reminder device was effective in improving adherence among mild cognitive impairment patients, and the idea of supporting memory with tools (cards, notebook, pillcase, alarms) [like described in http://www.medscape.com/viewarticle/513278_sidebar1] sounds most promising- but it does assume there is enough cognitive functioning to negotiate the use of these tools. You mention in your email that you have tried several of these strategies and they don't seem to help these patients.

Note as well that pharmacokinetic interventions are going on as well [minocycline is being used in an RCT in Uganda by Sacktor et al -- http://clinicaltrials.gov/ct2/show/NCT00855062] that may end up identifying an effective medication-based strategy, but would certainly would still require some degree of adherence to these meds as well.

For the individual in your program with full blown dementia or brain damage from seizures, are they able to execute self-directed self-care behaviors at all (cooking, dressing, life-skills tasks)? For those who are impaired but not disabled, I was wondering if you could provide some details in terms of cases where the pillcase or reminder is not working for them-- do you have a sense of why? Where the device fails to meet the person's needs? Or the degree to which you feel this is skills related (e.g., we need to find tools that work in recall and planning) and affect/emotion-related (e.g., is it an associated impairment in emotion regulation or coping that might be contributing to not "feeling like" taking meds even if you were to remember)?

Hope something helpful in all of this. Thank you for sharing. You have called attention to a critically important, and under-studied, area. I look forward to learning more from you and the community about how to best support those with moderate to severe cognitive impairment.

Warm regards,

Rivet



K Rivet Amico, PhD
Research Scientist
Center for Health, Intervention and Prevention
University of Connecticut
810 360 8716
800 518 0243 (fax)

Hi Clare,
I was wondering who are your community providers, and how frequent is their interaction with patients?
My experience is in DOTS delivery for urban slum-dwellers. In my community based DOTS program, I have found that biometrics have led to 100% adherance. Our biometrics were designed by Microsoft Research, and consist of a fingerprint reader,a 10" laptop, and a cellphone. Every patient is identified by his/her fingerprint at the DOTS centre; and then medication is given under direct observation. This strategy has worked wonders, we have achieved zero default at 13 DOTs centres serving 720 patients in delhi. The biometrics can be modified for other chronic diseases, such as HIV/AIDS. If you need more info, or a live demonstartion of the biometrics, please let me know. My CTO is based in Atlanta, US, and will be happy to meet you and discuss.

Shelly Batra, MD
President
Operation ASHA
www.opasha.org
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