Adherence & Retention

Dear All,

From our experience in working in Sierra Leone running a home-based care HIV program, providing incentives (like food packages) promotes adherence greatly. Most of the complains we receive from patient not adhering to treat is lack of food.

Best regards

Bailor

Dear all,

in the psychology literature, there is a large body of research on the effects of using tangible rewards on behavioral motivation. I am only superficially aware of this domain, but may offer some relevant ideas and references.

In general, it does not seem to be a good idea to use such external rewards to motivate people, since there is a risk or moving motivation from intrinsic sources (good for my health; want to remain independent of others; want to prevent resistance; want to see my kids grow up; etc) to extrinsic ones (I do this for the money). Although behavior may change as a consequence of the external drives as long as the incentive is being offered AND remains relevant for the person, it is likely this will not maintain after the reward is being removed. Intrinsic motivation is more likely to be sustained.
For an excellent meta-analysis on this topic, please see first abstract below.

In the HIV adherence field, I thought of one study that used financial incentives. Although they did not measure internal/external motivations, the study showed that after the incentives were no longer provided, behavioral effects disappeared. See second abstract below.

Providing food ...

Dear all,

in the psychology literature, there is a large body of research on the effects of using tangible rewards on behavioral motivation. I am only superficially aware of this domain, but may offer some relevant ideas and references.

In general, it does not seem to be a good idea to use such external rewards to motivate people, since there is a risk or moving motivation from intrinsic sources (good for my health; want to remain independent of others; want to prevent resistance; want to see my kids grow up; etc) to extrinsic ones (I do this for the money). Although behavior may change as a consequence of the external drives as long as the incentive is being offered AND remains relevant for the person, it is likely this will not maintain after the reward is being removed. Intrinsic motivation is more likely to be sustained.
For an excellent meta-analysis on this topic, please see first abstract below.

In the HIV adherence field, I thought of one study that used financial incentives. Although they did not measure internal/external motivations, the study showed that after the incentives were no longer provided, behavioral effects disappeared. See second abstract below.

Providing food to patients in need could, I think, better be seen as removing an important barrier to adherence. Several studies have shown that not having food available poses a relevant barrier and providing it should thus lead to improved adherence. So, from that point of view, I would try to motivate people based on their internal motives (e.g. people's outcome expectations of adhering vs non-adhering) instead of relying on program components that may not be sustainable over time, and remove the food barrier regardless of people's motivation as long as the resources are available (or, perhaps even better, see if there are options for collective efforts by patients in the form of e.g. self-help groups to develop farming/economic activities to increase availability of food. This was succesfully done by some self-help groups of HIV-positive women a student of mine interviewed recently in Kenya).

Hope this is helpful.

Marijn

Abstract 1-
A meta-analytic review of experiments examining the effects of extrinsic rewards on intrinsic motivation.
E L Deci, R Koestner, R M Ryan
Psychological Bulletin (1999)
Volume: 125, Issue: 6, Publisher: APA AMERICAN PSYCHOLOGICAL ASSOCIATION, Pages: 627-668; discussion 692-700

Abstract
A meta-analysis of 128 studies examined the effects of extrinsic rewards on intrinsic motivation. As predicted, engagement-contingent, completion-contingent, and performance-contingent rewards significantly undermined free-choice intrinsic motivation (d = -0.40, -0.36, and -0.28, respectively), as did all rewards, all tangible rewards, and all expected rewards. Engagement-contingent and completion-contingent rewards also significantly undermined self-reported interest (d = -0.15, and -0.17), as did all tangible rewards and all expected rewards. Positive feedback enhanced both free-choice behavior (d = 0.33) and self-reported interest (d = 0.31). Tangible rewards tended to be more detrimental for children than college students, and verbal rewards tended to be less enhancing for children than college students. The authors review 4 previous meta-analyses of this literature and detail how this study's methods, analyses, and results differed from the previous ones.

Abstract 2-
J Gen Intern Med. 2000 Dec;15(12):841-7.

Cue-dose training with monetary reinforcement: pilot study of an antiretroviral adherence intervention.
Rigsby MO, Rosen MI, Beauvais JE, Cramer JA, Rainey PM, O'Malley SS, Dieckhaus KD, Rounsaville BJ.

Medical Service, Department of Veterans Affairs Connecticut Healthcare System, West Haven, Conn. 06516, USA.

OBJECTIVE: To assess the feasibility and efficacy of two interventions for improving adherence to antiretroviral therapy regimens in HIV-infected subjects compared with a control intervention.
DESIGN: Randomized, controlled, pilot study.
SETTING: Department of Veterans Affairs HIV clinic and community-based HIV clinical trials site.
PARTICIPANTS: Fifty-five HIV-infected subjects on stable antiretroviral therapy regimens. Subjects were predominantly male (89%) and African American (69%), and had histories of heroin or cocaine use (80%).
INTERVENTIONS: Four weekly sessions of either nondirective inquiries about adherence (control group, C), cue-dose training, which consisted of the use of personalized cues for remembering particular dose times, and feedback about medication taking using Medication Event Monitoring System (MEMS) pill bottle caps, which record time of bottle opening (CD group), or cue-dose training combined with cash reinforcement for correctly timed bottle opening (CD+CR).
MEASUREMENTS: Opening of the pill bottle within 2 hours before or after a predetermined time was measured by MEMS.
RESULTS: Adherence to the medication as documented by MEMS was significantly enhanced during the 4-week training period in the CD+CR group, but not in the CD group, compared with the control group. Improvement was also seen in adherence to antiretroviral drugs that were not the object of training and reinforcement. Eight weeks after training and reinforcement were discontinued, adherence in the cash-reinforced group returned to near-baseline levels.
CONCLUSIONS: Cue-dose training with cash reinforcement led to transient improvement in adherence to antiretroviral therapy in a population including mostly African Americans and subjects with histories of drug abuse. However, we were not able to detect any sustained improvement beyond the active training period, and questions concerning the timing and duration of such an intervention require further study. Randomized, controlled clinical studies with objective measures of adherence can be conducted in HIV-infected subjects and should be employed for further evaluation of this and other adherence interventions.

Marijn provides a great summary here. See manuscript below for a compelling reason for why food packets may increase adherence--As Weiser et al note, food insecurity continues to pose a substantial barrier to HIV adherence - which likely extends to TB adherence. Given the previous exchanges on the listserve on adherence with this issue- I imagine you all have seen this already, but just in case, Weiser's work here is very important as we consider obstacles to persistent adherence for TB or HIV.

One aspect of the issue in using external motivators in response adherence is figuring out what you are rewarding. Is it rewarding reporting adherence or actual adherence? And how would one measure actual adherence? If it is linked to clinical outcomes, we know that there is some individual variability to one's response to treatment. So, another concern, in addition to those well-stated by Marijn, is that the environment one sets up when rewarding people for their self-care is one that can easily become quite differential in power, can create guardedness in reporting real difficulties for fear of not getting the reward, and can create strains on patient-staff relation for the staff having to make the decisions ...

Marijn provides a great summary here. See manuscript below for a compelling reason for why food packets may increase adherence--As Weiser et al note, food insecurity continues to pose a substantial barrier to HIV adherence - which likely extends to TB adherence. Given the previous exchanges on the listserve on adherence with this issue- I imagine you all have seen this already, but just in case, Weiser's work here is very important as we consider obstacles to persistent adherence for TB or HIV.

One aspect of the issue in using external motivators in response adherence is figuring out what you are rewarding. Is it rewarding reporting adherence or actual adherence? And how would one measure actual adherence? If it is linked to clinical outcomes, we know that there is some individual variability to one's response to treatment. So, another concern, in addition to those well-stated by Marijn, is that the environment one sets up when rewarding people for their self-care is one that can easily become quite differential in power, can create guardedness in reporting real difficulties for fear of not getting the reward, and can create strains on patient-staff relation for the staff having to make the decisions about who meets criteria and who does not. While rewards have a long and at times conflicting history of use, I don’t think there has been enough or sufficient attention to what that kind of set-up does to our relationships with patients. We need to be very careful about creating environments that produce relationships where patients feel judged or feel they can't be open about difficulties with adherence. Perhaps there is this kind of work out there that I am unaware of. I just wanted to call attention to these kinds of potential 'reverberating' effects.

As has been noted, providing food regardless of rates of actual adherence seems like the ideal approach. Providing rewards linked to adherence has a host of complications that would need careful consideration.


Great discussion!

Rivet Amico





Weiser SD, Tuller DM, Frongillo EA, Senkungu J, Mukiibi N, et al. (2010) Food Insecurity as a Barrier to Sustained Antiretroviral Therapy Adherence in Uganda. PLoS ONE 5(4): e10340. doi:10.1371/journal.pone.0010340



Food Insecurity as a Barrier to Sustained Antiretroviral
Therapy Adherence in Uganda
Sheri D. Weiser1,2*., David M. Tuller3., Edward A. Frongillo4, Jude Senkungu5, Nozmu Mukiibi5, David R.
Bangsberg5,6,7,8
1 Division of HIV/AIDS, San Francisco General Hospital, San Francisco, California, United States of America, 2 Center for AIDS Prevention Studies, University of California San Francisco, San Francisco, California, United States of America, 3 School of Public Health, University of California, Berkeley, California, United States of America, 4 Department of Health Promotion, Education, and Behavior, Arnold School of Public Health, University of South Carolina, Columbia, South Carolina, United States of
America, 5 Mbarara University of Science and Technology, Mbarara, Uganda, 6 Ragon Institute of Massachusetts General Hospital, Massachusetts Institute of Technology and Harvard, Boston, Massachusetts, United States of America, 7 Massachusetts General Hospital Center for Global Health, Harvard Medical School, Cambridge, Massachusetts, United States of America, 8 Harvard Initiative for Global Health, Boston, Massachusetts, United States of America

Abstract
Background: Food insecurity is emerging as an important barrier to antiretroviral (ARV) adherence in sub-Saharan Africa and elsewhere, but little is known about the mechanisms through which food insecurity leads to ARV non-adherence and treatment interruptions.
Methodology: We conducted in-depth, open-ended interviews with 47 individuals (30 women, 17 men) living with HIV/AIDS recruited from AIDS treatment programs in Mbarara and Kampala, Uganda to understand how food insecurity interferes with ARV therapy regimens. Interviews were transcribed, coded for key themes, and analyzed using grounded theory.
Findings: Food insecurity was common and an important barrier to accessing medical care and ARV adherence. Five mechanisms emerged for how food insecurity can contribute to ARV non-adherence and treatment interruptions or to postponing ARV initiation: 1) ARVs increased appetite and led to intolerable hunger in the absence of food; 2) Side effects of ARVs were exacerbated in the absence of food; 3) Participants believed they should skip doses or not start on ARVs at all if they could not afford the added nutritional burden; 4) Competing demands between costs of food and medical expenses led people either to default from treatment, or to give up food and wages to get medications; 5) While working for food for long days in the fields, participants sometimes forgot medication doses. Despite these obstacles, many participants still reported high ARV adherence and exceptional motivation to continue therapy.
Conclusions: While reports from sub-Saharan Africa show excellent adherence to ARVs, concerns remain that these successes are not sustainable in the presence of widespread poverty and food insecurity. We provide further evidence on how food insecurity can compromise sustained ARV therapy in a resource-limited setting. Addressing food insecurity as part of emerging ARV treatment programs is critical for their long-term success.
Citation: Weiser SD, Tuller DM, Frongillo EA, Senkungu J, Mukiibi N, et al. (2010) Food Insecurity as a Barrier to Sustained Antiretroviral Therapy Adherence in Uganda. PLoS ONE 5(4): e10340. doi:10.1371/journal.pone.0010340

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

Hello Stobdan,

We widely use food packages as an incentive for MDR TB patients in Tomsk, Russia, so I would like to share our experience.
1) We provide food packages to patients as soon as they start treatment in ambulatory settings until the end of treatment. It is important that incentives are provided during the whole treatment.
2) Initially we were giving food sets once a month based on patients’ adherence. However, it was emotionally difficult to withhold a food set from a non-adherent patient, who was known to have no food at home. In many cases we were just giving food sets to these patients anyway. Later we moved to daily sets and it worked great. If a patient comes to the treatment point and takes his meds, he gets a food set. If he gets his medications twice a day, he gets his food set after the second dose. Daily food sets solved our dilemma between giving food despite of poor adherence or withholding it. Both food and adherence are important for treatment success and, eventually, patient’ survival. In our analyses patients’ adherence was the strongest predictor of culture conversion in MDR TB patients.
3) Food incentives are ...

Hello Stobdan,

We widely use food packages as an incentive for MDR TB patients in Tomsk, Russia, so I would like to share our experience.
1) We provide food packages to patients as soon as they start treatment in ambulatory settings until the end of treatment. It is important that incentives are provided during the whole treatment.
2) Initially we were giving food sets once a month based on patients’ adherence. However, it was emotionally difficult to withhold a food set from a non-adherent patient, who was known to have no food at home. In many cases we were just giving food sets to these patients anyway. Later we moved to daily sets and it worked great. If a patient comes to the treatment point and takes his meds, he gets a food set. If he gets his medications twice a day, he gets his food set after the second dose. Daily food sets solved our dilemma between giving food despite of poor adherence or withholding it. Both food and adherence are important for treatment success and, eventually, patient’ survival. In our analyses patients’ adherence was the strongest predictor of culture conversion in MDR TB patients.
3) Food incentives are working in poor population. The more disadvantaged population you have, the better food incentives are working.
4) We do not believe in MDR TB self-treatment. Direct observed therapy (DOT) is a basis for MDR TB treatment in Tomsk oblast. I agree with other people that self-reported adherence is not reliable and can be faked. To ensure that DOT is really in place TB services are making regular inspector visits to rural places (It is very important!). Wherever possible we are trying to remove other barriers to treatment. Thus, in Tomsk city and some large regional centers we organize home treatment for patients. The nurse is provided with a car to drive to the patients. We found that patients are more likely to wait for the nurse if the medications are accompanied by food, so we provide daily food sets to patients, who get treatment at home as well.
5) I agree that incentives can deteriorate provider-patient relationship but it is more dependent on provider attitude/initial provider-patient relationship rather than incentives itself. In our model Sputnik program nurses are trained to be nice with patients and food sets actually help them to build their relationship with the patients.
6) About 50% of MDR TB patients in Tomsk have alcohol or drug dependence diagnosis. It is a tough group to work with “intrinsic” motivation. Even food is exchanged for alcohol. We had a psychologist and addiction specialist in Tomsk but their influence on some of the patients was limited. Sputnik program, which brings medications to patients’ homes, provides them with daily food sets and helps to solve some social problems showed to be the most successful with non-adherent patients.

Irina Gelmanova
Partners in Heath

I recently found this interesting study of cash and non-cash incentives used to improve adherence to latent TB treatment in homeless patients in San Francisco.

The success rate in such a challenging population makes the potential for application to other populations seem very promising. I would love to know any thoughts on the applicability to treatment of MDR-TB in low-income settings, for example. I can see why the approach might be problematic for other treatments that involve self-treatment instead of DOT.

Here's a link to the full article:
http://bit.ly/eGZCTs

Summary:

SETTING: Community-based population of homeless adults living in San Francisco, California.

OBJECTIVE: To compare the effect of cash and non-cash incentives on 1) adherence to treatment for latent tuberculosis infection, and 2) length of time needed to look for participants who missed their dose of medications.

DESIGN: Prospective, randomized clinical trial comparing a $5 cash or a $5 non-cash incentive. All participants received directly observed preventive therapy and standardized follow-up per a predetermined protocol. Completion rates and amount of time needed to follow up participants was measured.

RESULTS: Of the 119 participants, 102 (86%) completed therapy. There was no difference between the cash and non-cash arms ...

I recently found this interesting study of cash and non-cash incentives used to improve adherence to latent TB treatment in homeless patients in San Francisco.

The success rate in such a challenging population makes the potential for application to other populations seem very promising. I would love to know any thoughts on the applicability to treatment of MDR-TB in low-income settings, for example. I can see why the approach might be problematic for other treatments that involve self-treatment instead of DOT.

Here's a link to the full article:
http://bit.ly/eGZCTs

Summary:

SETTING: Community-based population of homeless adults living in San Francisco, California.

OBJECTIVE: To compare the effect of cash and non-cash incentives on 1) adherence to treatment for latent tuberculosis infection, and 2) length of time needed to look for participants who missed their dose of medications.

DESIGN: Prospective, randomized clinical trial comparing a $5 cash or a $5 non-cash incentive. All participants received directly observed preventive therapy and standardized follow-up per a predetermined protocol. Completion rates and amount of time needed to follow up participants was measured.

RESULTS: Of the 119 participants, 102 (86%) completed therapy. There was no difference between the cash and non-cash arms. Completion was significantly higher among males (OR 5.65, 95%CI 1.36–23.40, P = 0.02) and persons in stable housing at study entry (OR 4.86, 95%CI 1.32–17.94, P = 0.02). No substance use or mental health measures were associated with completion. Participants in the cash arm needed significantly less follow-up to complete therapy compared to the non-cash arm (P = 0.03). In multivariate analysis, non-cash incentive, use of crack cocaine, and no prior preventive therapy were associated with more follow-up time.

CONCLUSION: Simple, low cost incentives can be used to improve adherence to TB preventive therapy in indigent adults.


Ned Jaszi
Volunteer, Partners in Health