Adherence & Retention

Hi Jason
It is a well worded wonderful concept .
And it will be useful if we can have an insight into the nature of the paper that has been published .
Because what we are speaking about in working on DOT for TB treatment - is treatment adherence .....treatment adherence .....and treatment adherence
And there comes the PERSISTENCE factor

Thanks


Dr. Shanta Ghatak

MDR TB Officer-India TB Project
PATH,2nd Floor,State Immunization complex,
Commissionerate of Family welfare,Sultanbazar,Koti,
Hyderabad 500095,Andhra Pradesh,India.
Mobile: +91 08008277383
Skype : shantaghatak

Thanks Dr. Ghatak.

I believe that adherence is a really wonderful concept; however, in assessing a patient's medication-taking behavior in chronic diseases such as HIV and TB, in which successful treatment of the disease requires months, years, or life-time of "adherence", the construct of "persistence" can add another dimension to help us better understand the medication-taking behavior.

Measurement of medication persistence, in both TB and HIV, would provide us with better understanding of why patients stop treatment or have gaps of treatment, and hopefully better strategies to address them in the long run.

Thank you for your thoughts.

Thank you for introducing this topic Jason. Using the the concept of persistence as a teaching tool with patients from their initial diagnosis with an illness could be very beneficial to long term treatment goals of TB, HIV and other chronic illnesses.

This concept could be introduced with patients in their very first interactions with health care providers to underscore the importance of recognizing "change" as potentially impacting success in the health continuum. These changes that potenially affect success could be social, economic, physical, emotional or behavioral and the concept of persistence reminds both health providers and patients that they can occur at unknown intervals along the way.

Barriers that we often see in our clinical practice have to do with our lack of foresight in the area of persistence and occur when short term goals are reached, "patients feel better" they gain weight, symptoms of illness resolve and they stop their medications, only to relapse into illness.

I think we could be much more effective using alternative means of education; media, materials printed in a patients first language, group work and other means that focus on the concept of persistence in addition to adherence and address the changes that ...

Thank you for introducing this topic Jason. Using the the concept of persistence as a teaching tool with patients from their initial diagnosis with an illness could be very beneficial to long term treatment goals of TB, HIV and other chronic illnesses.

This concept could be introduced with patients in their very first interactions with health care providers to underscore the importance of recognizing "change" as potentially impacting success in the health continuum. These changes that potenially affect success could be social, economic, physical, emotional or behavioral and the concept of persistence reminds both health providers and patients that they can occur at unknown intervals along the way.

Barriers that we often see in our clinical practice have to do with our lack of foresight in the area of persistence and occur when short term goals are reached, "patients feel better" they gain weight, symptoms of illness resolve and they stop their medications, only to relapse into illness.

I think we could be much more effective using alternative means of education; media, materials printed in a patients first language, group work and other means that focus on the concept of persistence in addition to adherence and address the changes that may occur whether they be perceived as positive or negative both of which can adversely affect treatment.

My one concern with the article is that it details different lengths of time that a patient may be non-persistent without sabotaging their treatment, based on pharmacokinetics of regimen, and this is a msg I don't think that patients should be given without intense education, as it could too easily be mis-communicated, (patients often share information with each other) and based on the many different regimens prescribed this seems too risky a concept to teach and not expect there be some confusion.

Dear Jason,

I agree with the usefulness of the concept of ‘persistence’ as a supplemental indicator to ‘adherence’. I think ‘persistence’ also needs to be defined against the context of ‘retention’ which is commonly used. Retention is often defined as remaining on a treatment (or at least being followed in a program) for at defined period of time. I think the nuance of the concept of persistence (taking the medication consistently for a measurable duration) is important in that it links the patient’s behavior and desired therapeutic action more directly than retention, in a distinct and useful way.

I agree with the others that the concept may have relevance at the patient education level: 'persistence counselling', which sets the long term tone up front.
Richard

SORRY FOR THE SLIPS OF THE KEYBOARD; i send it again!

Dear all
I think it is a relief for the numerous 'persistent' patients to know that this issue starts getting an impetus;
the most important is to INVOLVE THEM in the development of persistence strategies, by assessing their needs at different times of their treatment and define strategies where they will be fully involved; this is something we do not do enough as health workers; we are not in their shoes......and we assume to know what their needs are....
I would be happy to review or participate to the development of such a resource
Keep me posted

Dr Francoise NYWAGI LOUIS, MBChB, HIVMan, DTM&H
Regional TBHIV Technical Advisor
University Research Co., LLC
Rigel Park
446, Rigel Avenue South
Erasmusrand 0181
Pretoria
Tel (switchboard): +27 (0) 12 484 9300
Tel (direct): +27 (0) 12 484 9309
Fax (direct): +27 (0)12 484 9369
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Cell: +27 78 027 8124

www.urc-chs.co

Thank you all for your comments!

Dr. Shaw:
I have not thought of persistence as a tool for patient education until today. I think it is a really excellent concept to educate patients about not only the important of taking meds everyday, but CONTINUING to take them everyday, addressing the consequences of non-persistence as well. Perhaps it would be great also to congratulate them on having persisted for "X" numbers of months or years, as I have found that positive feedback to be important behavior modulator, at least in my personal life.

As with educating about the GAPS, there really isn't enough evidence to support that the gap of 1, 2, or 3 days does not affect long-term outcomes. Since there is so much we don't know about what really is the "permissible gap," we need more studies on persistence before suggesting to our patients that it may be okay to skip a day or two, as it may not be.

Dr. Lester:
Unfortunately, I do not have much experience with the concept of retention, but I agree with you that it is an important distinction to make and they each serve a different role. I think about ...

Thank you all for your comments!

Dr. Shaw:
I have not thought of persistence as a tool for patient education until today. I think it is a really excellent concept to educate patients about not only the important of taking meds everyday, but CONTINUING to take them everyday, addressing the consequences of non-persistence as well. Perhaps it would be great also to congratulate them on having persisted for "X" numbers of months or years, as I have found that positive feedback to be important behavior modulator, at least in my personal life.

As with educating about the GAPS, there really isn't enough evidence to support that the gap of 1, 2, or 3 days does not affect long-term outcomes. Since there is so much we don't know about what really is the "permissible gap," we need more studies on persistence before suggesting to our patients that it may be okay to skip a day or two, as it may not be.

Dr. Lester:
Unfortunately, I do not have much experience with the concept of retention, but I agree with you that it is an important distinction to make and they each serve a different role. I think about retention as a patient remaining in a treatment program or a clinical trial, whereas persistence looks at how long a patient continues to take a medication.

Not being "retained" in a treatment program may suggest that the patient is non-persistent for many patients, but it would be also possible for the patient to be persistent as long as he/she finds another means to continue treatment.

Dr. Nywagi Louis:
Thanks for the comment. I wholeheartedly agree that for many patients, persisting on HAART comes with many challenges in medical, socioeconomic, societal, systems, healthcare, and personal realms. We tried to summarize some of the characteristics associated with increased or decreased persistence so that physicians and other involved parties can identify those who are less likely to persist and help them through the process. It will take many people to develop strategies to improve persistence, but I believe they are certainly possible!

I've been thinking about persistence and retention and what makes the two so distinct from each other. While I agree they are different words of English, the actual difference is probably minimal in practical terms as far as patient management is concerned. No condition has generated so many jargons in so few years as HIV and AIDS. Use of language has sometimes led to the confusion that people in the field who directly interface with patients experience. I think we should avoid introduce even more jargon unless it really results in real breakthroughs that can make substantive difference in care provision and outcomes. Else, it remains just in the domain of scientists with limited benefit to frontline providers or patients themselves.

Retention is a public health issue, and retention challenges are service based (including patient and health care provider); persistence is a component of retention and is patient centered, dealing with how to adhere to treatment on the long run and how to approach it; long term adherence has definitely very different challenges when compared with short term one
My opinion is that this is not a scientists' search for new idioma but 2 very different concepts, one being PH centered and the other one patient centered, and both everyday realities for the running of a facility as well as the care for patients.

Dr. Bukenya,

Thanks for the comment. I definitely agree that there have been many terms re: HIV treatment and confusion as well.

On the other hand, I disagree with you that there is only a minimal distinction between retention and persistence. Retention is primarily used in a setting where there is an endpoint in treatment (e.g. TB) or in a trial setting with a set duration of intervention or observation. It is similar to adherence in that it measures FREQUENCY/PROPORTION of patients of completing or remaining in a therapy or program, but at a population/study cohort level.

On the other hand, persistence is a patient centered metric (i.e. it looks at pattern of medication-taking behavior of a single patient), and it is concerned not with the proportion/frequency, but duration of treatment.

HIV is a disease where there is no cure, and thus the goal of therapy includes taking meds indefinitely. In addition to looking at not only how often one takes medication, or what proportion patients drop out of a treatment program per year, it is essential for us to focus on how long he/she has been taking the meds, and how we will ...

Dr. Bukenya,

Thanks for the comment. I definitely agree that there have been many terms re: HIV treatment and confusion as well.

On the other hand, I disagree with you that there is only a minimal distinction between retention and persistence. Retention is primarily used in a setting where there is an endpoint in treatment (e.g. TB) or in a trial setting with a set duration of intervention or observation. It is similar to adherence in that it measures FREQUENCY/PROPORTION of patients of completing or remaining in a therapy or program, but at a population/study cohort level.

On the other hand, persistence is a patient centered metric (i.e. it looks at pattern of medication-taking behavior of a single patient), and it is concerned not with the proportion/frequency, but duration of treatment.

HIV is a disease where there is no cure, and thus the goal of therapy includes taking meds indefinitely. In addition to looking at not only how often one takes medication, or what proportion patients drop out of a treatment program per year, it is essential for us to focus on how long he/she has been taking the meds, and how we will encourage and ensure that patient remains persistent with treatment. In this sense, persistence aligns with the goal of HIV treatment nicely, and the focus on "continuous therapy" that persistence brings to HIV, I believe, will be beneficial to patients.

Dear All,

This is a very interesting discussion, thanks everyone. While there is plenty of jargon in HIV care, I do believe that persistence is a nice framework that is different from retention. I don't think the distinction between persistence and retention is based on a patient versus a population focus. A number of studies have shown that retention predicts survival with HIV at the individual level. They are fundamentally different in that persistence focuses on ART while retention focuses on attending appointments. In some situations, especially programs that only offer HIV treatment and medications are only dispensed at appointments, persistence and retention will be virtually the same. A person who defaults from the program will have zero adherence and no persistence. However, that will not always be the case, as persons could stay in care for other conditions while choosing to not continue ART. Certainly in the developed world, patients can continue to get ART for a time while not attending appointments regularly, and vice versa. A person who is in care also has a chance to be prescribed ART, a pre-requisite for adherence and persistence. The details of a program will determine the degree of correlation between ...

Dear All,

This is a very interesting discussion, thanks everyone. While there is plenty of jargon in HIV care, I do believe that persistence is a nice framework that is different from retention. I don't think the distinction between persistence and retention is based on a patient versus a population focus. A number of studies have shown that retention predicts survival with HIV at the individual level. They are fundamentally different in that persistence focuses on ART while retention focuses on attending appointments. In some situations, especially programs that only offer HIV treatment and medications are only dispensed at appointments, persistence and retention will be virtually the same. A person who defaults from the program will have zero adherence and no persistence. However, that will not always be the case, as persons could stay in care for other conditions while choosing to not continue ART. Certainly in the developed world, patients can continue to get ART for a time while not attending appointments regularly, and vice versa. A person who is in care also has a chance to be prescribed ART, a pre-requisite for adherence and persistence. The details of a program will determine the degree of correlation between persistence, adherence, and retention, but in my opinion they are unique constructs.

Tom Giordano

Dear All,
Thank you for a very interesting discussion. The vagaries of the Enlish
language are well known. No doubt there is a subtle difference between
retention and persistance,but from the patient point of view, what matters
is *completion or continuation* of treatment.( for example, completion
where there is a time frame, as for TB , and continuation where life long
adherance is needed as for HIV). Ultimately patient education is the key to
sucess in both the scenarios, and physicians have a vital role to play in
starting education and nurturing patients with the help of CHWs. Community
empowerment works wonders in this, and the message initiated by physicians
needs to be reinforced by CHWs in a non-judgmental and patient friendly
manner to enable them to make the choice of adhering to the regimen.

Yours, in His work,

Shelly batra, MD

--
*Shelly Batra, MD
*
President*
<http://www.opasha.org/>
*

Dear everyone,

It's been a great discussion indeed and thank you for all your insightful comments.

Just wanted to clarify that persistence, as we define it on the paper focuses on continuity, and therefore a continuous variable/term measured in days, months, or years (although it COULD be possible to make it into a binary variable: i.e. was the patient persistent with meds in the last year, or had a period of non-persistence?).

Again, I do not know much about retention, but I would imagine that a patient would be either in the program or not in the program. So when a patient drops out of treatment, the patient would not have "no persistence" but rather, he would have persisted for X number of years or months until the day the patient drops out of the program (this is assuming that this program is the only option of treatment).

I think that persistence, along with adherence and retention, is an important concept that can ultimately help patients "complete or continue" with treatment as Dr. Batra stated eloquently.

Thanks again for all your helpful insights!

Great discussion. We have adherence, retention, and persistence all with their overlap and unique contributions. I wonder in using these ideas for patient education if there is a temporal relationship we could use-- retention in care is critical to timely initiation of ART and continued access to ARVs (in many cases), where adherence is critical once/when actively prescribed ARVs, and non-adherence would presumably contribute to non-persistence (although there are obviously other factors that influence discontinuation of a regimen as well), and the goal is to stay on one's current (first for initiators) regimen for as long as possible which obviously requires consistent adherence. Does that kind of logic fit with people's understanding of these concepts?

I am looking forward to how these different constructs play out in research in terms of unique contributions to clinical outcomes and whether or not there is some kind of temporal precedence amongst these.

Rivet



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

Thank you Jason
--
*Shelly Batra, MD
*
President*
<http://www.opasha.org/>
*

Interesting how our whole focus on TB control has been shifting towards PERSISTENCE. I am speaking from a different point of view now. For a long time TB treatment , diagnosis, advocacy needed prioritization at all levels. We persisted. The program managers persisted. The policy makers, the administration, the health systems, the opinion makers persisted. For a better control. PERSISTENCE has been a key challenging motivator.....it has been delivering its results over the decades. Saving many lives. And we probably need npw even more because of the growing numbers of resistant cases

Dr. Shanta Ghatak

Dear Friends and Colleagues, in continuation to my previous post I would like to share that Very similar situations have been dealt with in similar situations in HIV AIDS control program for retaining the patients . Only Difference between TB control and HIV-AIDS control programs being decentralized DOT and centralized ART which with gradual responsible and focused PERSISTENCE is taking a much awaited positive turn!!

Thanks!

Thank you everyone for the comments.

Dr. Amico: Thank you for the insightful comment. I agree that each construct can be helpful in different ways.

Dr. Ghatak: thanks! we surely do need to persist with our efforts on HIV, TB, and other diseases that disproportionately affect the poor and those in resource-limited settings as we encourage our patients with persist with treatment and medication!

Also, we have started to look at persistence in patients participating in our directly administered antiretroviral therpay (DAART) studies, especially details of patients' persistence patterns and clinical and patient factors associated with persistence. The results should be available hopefully soon!

Best,

Jason Bae