[ARCHIVED] Adherence & Retention

Hi Dan,

I think it¹s a great idea to explore the use of symbols. My concern,
however, would be that people might forget the meaning of the symbols, even
with good, initial training. At least with text, an illiterate person can
show the message to a literate person to read. Could you create a symbol
that wouldn¹t need interpretation? I¹m assuming you¹re using ³candy bar²
phones, so actual pictures probably wouldn¹t be possible. Voice (i.e.
interactive voice response or live calls) is another option for illiterate
populations, although less convenient and more expensive than texting.

Regards,
Jessica


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Hi Jessica,

Insightful points on recall period and cell phone sharing. We have access to the typical Nokia (candy bar) phone. While text messages can't display pictures, the menu options do, so I wonder if there is a technical way to transmit the picture of a pill. For example, when you receive an SMS, it triggers the picture of an envelope opening. So maybe the phones could be re-programmed such that when you send an SMS, it triggers that reminder picture of choice.

I agree that, over time, forgetfulness would likely become endemic. Perhaps re-training patients at clinic appointments (1-2 months) would suffice, assuming attendance, or at home with a peer- or family member. Cell phone sharing seems like it could go two ways. It may mediate forgetfulness when sharing occurs, but when it doesn't occur, patients may still miss the trigger to adhere. What's your experience with illiterate patients and the effect of cell phone sharing on non-cell phone sharing adherence periods? Also do you think that they share often enough that the benefit from retraining would be minimal?

Some symbols seem like they would be less likely to be forgotten than others. For example, a ...

Hi Jessica,

Insightful points on recall period and cell phone sharing. We have access to the typical Nokia (candy bar) phone. While text messages can't display pictures, the menu options do, so I wonder if there is a technical way to transmit the picture of a pill. For example, when you receive an SMS, it triggers the picture of an envelope opening. So maybe the phones could be re-programmed such that when you send an SMS, it triggers that reminder picture of choice.

I agree that, over time, forgetfulness would likely become endemic. Perhaps re-training patients at clinic appointments (1-2 months) would suffice, assuming attendance, or at home with a peer- or family member. Cell phone sharing seems like it could go two ways. It may mediate forgetfulness when sharing occurs, but when it doesn't occur, patients may still miss the trigger to adhere. What's your experience with illiterate patients and the effect of cell phone sharing on non-cell phone sharing adherence periods? Also do you think that they share often enough that the benefit from retraining would be minimal?

Some symbols seem like they would be less likely to be forgotten than others. For example, a fun way to connect this to real-time adherence monitoring might be to send messages with 1) question marks (?) or 2) explanation marks (!) when patients forget to adhere. Now that I'm thinking about it more, I would probably pick that over an 'x'. With a few ! and ?s at interruption periods over a couple months, they would hopefully adhere better such that they would forget what the symbols mean. Definitely more to explore for me, thanks!

Yours,
Dan

Dear Dan,
I think the idea of using symbols is worth pursuing. I don't think there is an issue with habituation or forgetting what they symbols mean. How could anyone forget what a regular SMS from their clinic means? The challenge may be more upfront in understanding what it means, once they understand, this would be rapidly reinforced over time. Understanding how to respond initially will depend on how complex the user requirements are and the level of training you provide. Habituation is more a problem of 'ignoring' a repetitive stimulus - not forgetting what it means. And yes, digital 'reminders' have generally been shown not to be effective adherence interventions. Adherence is much more complex than remembering.
I think the symbol idea is great, but I would keep some of these other aspects of understanding adherence in mind.
Best,
Rich

Hi Dan and Rich,

I think the issue with forgetting the meaning of a symbol would likely occur
between the training and the first reminder or set of reminders, especially
if it was more than a few days. I agree that people aren¹t likely to forget
once they get the hang of it. We found quite a bit of unexpected
forgetfulness in our studies of IVR and SMS queries on ART adherence, which
improved by using ³just in time² training techniques (i.e. providing the
training in the moment when attempts to respond to the IVR and SMS queries
failed).

Cell phone sharing definitely occurred in our studies, but we didn¹t try to
document how often or when it occurred. That would be interesting data for
these sorts of programs, although the data would be largely limited to
self-report.

Best,
Jessica

Dear Rich, Jessica,

Great feedback... why do you think there is upfront forgetfulness? Did you investigate strategies to prevent it like test pages (****?!****)? If so, why did you decide to use "just in time" techniques? Confusion about test pages vs real pages? or study bias? Some of these and prior questions may be for the peeps, too, but looking forward to hearing your thoughts.

Yours,
Dan

Hi Jessica,

I want to expand on why I like the "forgetfulness" issue that you raised, which somehow parallels the importance of cohorts loss to follow up.

First of all, I would like to reframe the issue of "forgetfulness" into a "linkage to care" issue, or in this case "linkage to SMS interventions." As investigators explore SMS interventions not just for adherence but also for diagnosis, establishment in care, and retention, barriers of "linkage to SMS interventions" may overlap and similarly impede the clinical care steps that patients navigate to successfully take ART.

Being able to predict who is likely to fail an SMS intervention for adherence may also help us understand predictors of failure for different clinical care steps. While this may be a roadmap to more successful interventions, I also think that caution needs to exercised when exploring the geography of failure. On one hand, I get excited about understanding how patients link to SMS interventions in adherence studies because this may be an easier environment to investigate the issue compared to linkage to care-type studies where patients are not engaged in care, may have given you a fake cell phone number and/or address, and are especially ...

Hi Jessica,

I want to expand on why I like the "forgetfulness" issue that you raised, which somehow parallels the importance of cohorts loss to follow up.

First of all, I would like to reframe the issue of "forgetfulness" into a "linkage to care" issue, or in this case "linkage to SMS interventions." As investigators explore SMS interventions not just for adherence but also for diagnosis, establishment in care, and retention, barriers of "linkage to SMS interventions" may overlap and similarly impede the clinical care steps that patients navigate to successfully take ART.

Being able to predict who is likely to fail an SMS intervention for adherence may also help us understand predictors of failure for different clinical care steps. While this may be a roadmap to more successful interventions, I also think that caution needs to exercised when exploring the geography of failure. On one hand, I get excited about understanding how patients link to SMS interventions in adherence studies because this may be an easier environment to investigate the issue compared to linkage to care-type studies where patients are not engaged in care, may have given you a fake cell phone number and/or address, and are especially difficult to track down to ask why they didn't come to their appointment. On the other hand, I do think the geography of failure changes as you work backwards through the clinical care steps. In my opinion, acceptance of their HIV status, attitudes about ART, or stigma about entering that well known door to HIV care, for example, may become overriding limitations to the effectiveness of these interventions. However, if you were to tell me that low-literacy was one barrier to linkage to SMS interventions, I would think that low-literacy would also be a pervasive barrier. That would be exciting to know.

Another potential advantage about studying this cohort in adherence studies is that I think you will have a different and clearer lens into who fails for what reasons. More to the point, if the intervention were IVR or SMS queries, making a distinction between the cohort that fails once and responds to "just in time" techniques and the cohort that fails again and again might describe two cohorts that fail for a different global set of reasons (knowledge/understanding vs attitudes/behavior). Because people in Sierra Leone receive ART at clinic appointments, patients are engaged in care in such a way that they could be tracked and surveyed over time, which may be harder to ascertain outside the system.

I would like to come back to the idea that maybe low-literacy is a predictor for knowledge-based failure to link to SMS interventions. If that were true and responsiveness were improved by symbols, then perhaps a complementary strategy could be employed to reduce forgetfulness where all-comers would be offered a message in symbols or words, and the patient could choose which message style they would like to receive. Perhaps this is a long road, but I wonder how outcomes might change.

Yours,
Dan

Somehow somewhere we need to develop a patient himself as a care giver for developing their thoughts into concrete needs. May be we need to have a deeper look into the patient. We are all talking about forgetfulness, occasionally and repeatedly : may be there is a chance that not all DOT providers are at the same level of motivation and understanding a patient of DR TB? A patient who loses his money, wages, family, near and dear ones and also certain amount of social respect may need more support not only in ways to meet his moral strength to keep the fight against DR TB ( and HIV?) going but we do need to look at the DOT provider mechanism which fails certainly over a period of two years when the patients are undergoing CAT IV treatment. With emerging thoughts on the infectiousness of the patient not every DOT provider is wholly willing to provide DOT and guide and counsel the patient everyday. We have been looking at literatures but PATIENT himself has not been addressed or asked about universally. We assume they are more or less equal in their outlooks, understanding and needs - which they are not and we assume ...

Somehow somewhere we need to develop a patient himself as a care giver for developing their thoughts into concrete needs. May be we need to have a deeper look into the patient. We are all talking about forgetfulness, occasionally and repeatedly : may be there is a chance that not all DOT providers are at the same level of motivation and understanding a patient of DR TB? A patient who loses his money, wages, family, near and dear ones and also certain amount of social respect may need more support not only in ways to meet his moral strength to keep the fight against DR TB ( and HIV?) going but we do need to look at the DOT provider mechanism which fails certainly over a period of two years when the patients are undergoing CAT IV treatment. With emerging thoughts on the infectiousness of the patient not every DOT provider is wholly willing to provide DOT and guide and counsel the patient everyday. We have been looking at literatures but PATIENT himself has not been addressed or asked about universally. We assume they are more or less equal in their outlooks, understanding and needs - which they are not and we assume our DOT provision network is working and would be working better with newer technologies, innovations and intervention. Isn't there a felt need for integration of counselling mechanisms of a patient and a DOT provider also. Because in all set ups we see a patient and the DOT provider being the most frequent interactive mechanisms that take place during the entire duration of treatment of CAT IV? There is justification behind introducing SMS technologies but how to develop kindness and a helpful attitude to address the patient who is really undergoing the treatment? That happens to be the biggest challenge of all - to behave and communicate with humility , to exude some responsiveness when they undergo the drug reactions , to give active social support with gentle reminders that this is a means to a better life and future activities . Reminders may be worked out as tools and make the mechanism efficient but with the growing number of MDR cases and not too many support systems in place we may need to address these needs from the patients' standpoint as well. Just to help the few we are able to provide the required treatment and support. The humbleness of caring for these frail, malnourished and futureless MDR TB patient community seems to be technically lacking at different levels of our existing network. We work on our objectives, goals, planning and reports which is all working fine but that touch of a kind word with these human lives needing our strongest commitment has somehow been evaporating . Too much focus on mechanisms and interventions, quantifications and deliverables have not been able to efficiently handle the patients of MDR TB . Lack of efficient planning for delivering to the patient himself , not taking into account the real field level data and grass root level activities have grown into a mechanism where too little can be done for the patient in reality. And they are dying. The word is out we would be having earlier access to diagnosis and treatment mechanisms and shorter treatment regimens and vaccines also. And the word is also out that these will happen soon . I keep my hopes alive and commit to the few who treat and support the MDR TB patients with respect and humility.


Dr. Shanta Ghatak

Hi Dan,

I think the upfront forgetfulness was due to inexperience with the
technology (i.e. cell phones generally as well as for this specific
purpose). The analogy that comes to mind is when I taught my dad how to use
a DVD player 10+ years ago. He was fine in the moment, but a week later
when he went to use it by himself for the first time, he had forgotten
everything. After some brief, ³just in time² training (i.e. a phone call to
me for a refresher), he got to watch his movie and now is a pro.

Best,
Jessica

Hi Jessica,

I bet your social support made him happy, too. I've been blending sms queries and reminders into this discussion, but for purposes of discussing user barriers, I think that we need to draw a distinction here not just because learning to respond to a PIN seemed to dominate the qualitative interviews in your challenges to mobile phones paper but also because inherently the challenges may be different. By the way, i noticed that of the 19 participants, none described literacy or understanding the text as an issue. For reminders without pins or responses needed, do you still see upfront forgetfulness as an issue and how do you think the discussion on barriers to link to SMS interventions changes?

Yours,
Dan

Hi Dan,

Sorry for dropping this thread for so long... too much work to do.

In any case, no I don't think forgetfulness is a problem with SMS reminders (I think this was the point Rich Lester was making). My main worry with one-way reminders is that the intended person may or may not actually receive the message (given the significant rates of shared cell phone use in developing countries). This will likely be a problem for interventions as well. Biometrics (e.g. iris or fingerprint scans) and/or voice pattern recognition could alleviate the memory problem with PINs, but would raise the technological sophistication and potentially the cost of the system. I hope we'll see more developments in this area in the near future.

Regards,
Jessica