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Dear all,

I write to share a brief correspondence our team in Rwanda published in Nature this week about the possibility of achieving excellent MDR-TB treatment outcomes in rural Africa with the provision of close follow-up and comprehensive adherence support (especially food and transportation assistance).

Most discussion of MDR-TB in medical journals and the press has focused on the important need for new drugs and a vaccine, but not much attention has focused on the possibilities of using currently available tools in smart systems to reduce morbidity and mortality in the interim.

What are your experiences with MDR-TB treatment adherence, and the most important barriers to or facilitators of retention in care?


Dr. Agnes Binagwaho
Minister of Health of Rwanda
Senior Lecturer, Harvard Medical School
Clinical Professor of Pediatrics, Geisel School of Medicine at Dartmouth

 
Christopher Hoffmann
Replied at 5:07 PM, 13 Feb 2013

This is a very important message. TB care delivery in many countries need re-imagining to develop systems to assist the patient in achieving the best outcome. This is important both with MDR-TB as well as standard drug susceptible TB. I think most people working in resource-limited-settings could describe a failure in TB care as a result of the lack of a real system. The latest from my experience is a woman diagnosed with XDR-TB who was sent from the referral TB hospital to the community where the small group of health motivators with whom I work were asked to help "look-after" this patient without any additional support or oversight from the national NTP. While this could read as a condemnation of the NTP in that country, I see this as more of a symptom of the broader problem of the failure to assist NTPs in implementing systems. I hope that the model used in Rwanda will be well received and adapted for use in other high-burden settings.

Kathleen England
Replied at 6:08 PM, 13 Feb 2013

Christopher,

I am in total agreement with you. In many countries the manpower is insufficient to manage and care for all the TB/DRTB population. Therefore, it is necessary to educate the family/community/friends to assist with care not only to improve outcome and limit the development of drug resistance, but to prevent further transmission of this disease within the population. Devising such a system will only support NTP efforts, improve in-country control, and hopefully change local stigmas associated with TB.

Annie Perez
Replied at 4:53 AM, 14 Feb 2013

Things, at present are very difficult and the more I get involved the more I see why in-country control needs to be revolutionised. The idea is that people's education and understanding changes over time. But with the mentality of some countries this 'change' is certainly going to take time.
At present the work I am involved in is with an NGO in India. This NGO has now expanded to Combodia and Vietnam. It is vital that the model which is used here is adopted by others or at least to be collaborative partners with us. The model is proving to be very successful (at a defult rate of below 5%) and has been developing since 2006.
The idea is that there is no 'new' medication instead an innovative model which is cost effective, simple and more importantly easy to educate the local people to be self efficient in understanding how it all works. In turn the trust and confidence of the patients proves to be excellent.
Please consider looking at this NGO and its eCompliance model, the work is changing millions of lives and will be spreading to help others worldwide.
Dr. Shelly Batra and Sandeep Ahuja are committed to the fight against TB worldwide.

Attached resources:

Asfawesen Gebreyohannes Woldegiorgis
Replied at 5:36 AM, 14 Feb 2013

Dears

Let us be cautious with the words we use when we exchange. There is no " one mentality of countries " , but there can be one mentality of a team in an organization/NGO which at times is more harmful than beneficial to countries.

Annie Perez
Replied at 5:53 AM, 14 Feb 2013

Point taken
There is a multitude of ways of thinking about certain situations and scenarios. That is what I meant by mentality.
However, I do believe that tackling stigma surrounding diseases such as TB is something that we all need to ensure that people understand more empathetically. Unfortunately, there is a nature where people are effected not only physically by a disease but also socially, psychology and emotionally due to people's interpretation/understanding.
I can assure you though that emphasis is placed on educating and ensuring that TB is destigmatized and time is taken to address this.
There is no intent here to be malice, my expression may have been offensive (in which case I apologize) but my intent was purely to point out that not everybody understands TB the same way. As organizations, NGO's and individuals we have to respect that.

Matias Iberico
Replied at 7:28 AM, 14 Feb 2013

OpAsha's eCompliance project is an interesting application of relatively inexpensive technology. A quick estimate puts one system at around 210USD (net book 150; fingerprint 30; modem 30) plus monthly modem fees (5-10usd? Depending on use and country system). In all honesty, I dislike the name, but I think it could be a valuable tool and ultimately part of a more comprehensive EHR system.

But, none of that matters unless you have the presence of a committed government that values community health workers and deploys them as the core of a functioning DOTS program with an understanding of the social determinants of adherence. Dr. Agnès Binagwaho mentioned "currently available tools in smart systems." From my experience the most important thing is to listen to the patient, involve them in their care and provide them with what they need to be adherent ("adherence support"). The technology should be part of the smart system, but it is not the solution.

Matias

Ignatius Magombe
Replied at 9:15 AM, 14 Feb 2013

My experience with providing the basics like especially transport 'refund' and food is that it just became a business with the patients being punctual for appointments and some even coming earlier than the appointment day just so they could get the 'refund' and food which they would sell at the exit gate !!!! Most importantly,it did not improve our cure rates. As to whether it was due to adherence problems or drug efficacy is up for discussion

Vivian Huang, MD, MPH
Replied at 6:07 AM, 17 Apr 2013

I have to agree with Ignatius regarding his comment.

I am currently seeing MDR TB patients in Swaziland in a busy industrial area. As a way to incentivize our patients, my NGO gives food vouchers, bus fares to our patients. In addition, we also pay 400 Rands/month to the treatment supporters of our patients. This is not a small sum of money for some of our patients. Anecdotally, we have heard that our patients will split this money with the treatment supporters. The treatment supporters are required to sign-off in a book everytime a patient takes their medicines, but we have been hearing that they will meet right before our clinic to sign off in the book. In addition, we have also heard that the patients use the food vochers we give them to buy everything else other food, including soap and other household needs.

And although I do believe that at times incentivizing patients is necessary, I am not sure this model we currently have in place actually works so well with adherence and compliance. The patients are clever and have found a way out of this long treatment course and make a businesss out of it.

Amanda Hill
Replied at 6:56 AM, 17 Apr 2013

Hi Vivian
I think incentivizing impoverished people with food or cash is to invite a huge number of number of unintended consequences which will make monitoring and trying to actually understand what is going on very difficult.

Lucy Chesire
Replied at 8:29 AM, 17 Apr 2013

Hey All
Clearly this model does not seem to work. This cycle gets repeated in all countries.
Isn't there anyone out there who figure out how we can incentivise MDRTB patients effectively,yet at the same time have best treatment outcomes.
Lucy

Gini Williams
Replied at 6:42 AM, 18 Apr 2013

There IS a way and as with everything in this world it is not straightforward. The best way to incentivise all people affected by TB and Dr-TB is to work in partnership with them from diagnosis to the end of treatment. This requires developing a rapport with each patient by taking their concerns and questions seriously and working with them in the context of the different aspects of their environment and lifestyle in order to enable them to access the tests and treatment they need.
As health care professionals we focus so much on the technical aspects of diagnosis and treatment that we forget the context of people's lives. This may sound a bit wishy washy but holistic assessment and care planning is good nursing practice and has been for decades.
The problem in TB is that we focus so much on the tools that we forget the human aspects of those having to use them (front-line health professionals) and the very people who are supposed to benefit from them (the patients, their families and communities). This focus needs to be changed so that more attention is paid to implementing people-centred care - this requires investment in training nurses and others involved in case management and ensuring that there is more time given to counselling and assessing patients. This may sound expensive but if you spend more time and effort getting it right first time then you avoid the costs of trying to find 'lost' patients and dealing with the consequences of incomplete treatment - i.e. ongoing transmission and DR-TB. When we (ICN together with National Nurses Associations) train nurse trainers in how to effectively deliver patient-centred care they find that spending more time counselling and understanding their patients early on in treatment saves time later on. Financial incentives have only ever been a very small and risky part of the solution. More nurses and case managers need to be involved in developing National programmes and strategic plans which take account of the requirements for implementing effective patient-centred care. We already have the tools and experience to do this and we are ready and willing to make this happen.

Gurumdi Silas
Replied at 10:52 AM, 18 Apr 2013

I agree with your position on the ongoing discussion and strongly believe too that investment in counseling will give us a better outcome. Patient centered care is quite a critical component that various programs miss. Moreso that funding orgs. are most of all interested more in the number of patients put on treatment. What tools are using for training your nurses can this be accessed on in

Malcolm Brewster
Replied at 10:53 AM, 18 Apr 2013

Gini, you are right that achieving adherence is not straightforward. It is interesting that you propose 'people-centred care' as a means of promoting adherence. Very often we know less about the networks of people exerting influence on the adherence patterns of patient than we imagine. For instance, Ware et al (2009) interpreted ART adherence in part of Africa as a means of maintaining social capital. People often depended on others for help - food, money, labour etc. In order for an ART patient to be considered safe to lend to those in their network of contacts had to judge them as likely to be able to return the favour if called upon to do so in the future. Recipients' adherence to ART was expected by the lenders as this therapy was believed likely to keep the recipients' in good enough health to fulfil their social obligations. Perhaps, following appropriate investigation, it could be possible to cultivate this type of effect to enhance TB treatment adherence.

An issue, again with ART adharence in Africa, analysed by Merten et al (2010) is incompatibility between biomedical and indigenous health systems. ART services are construced to deliver care in certain ways, as indeed are indigenous systems. Unless the service users share fundamental beliefs about health and treatment with the health service they are using, and understand how the services expect them to behave, adherence rates are likely to be poor. If patients have African concepts of personhood in which social integrity is balanced with physical health, whilst the health service they are engaged with is based on different sets of beliefs then the interaction between the two may be discordant. If a similar effect occurs with TB services adherence may be enhance by designing these services in such a way that discordance with indigenous systems is minimised.

Merten S., Kenter E., McKenzie O., Musheke M., Martin-Hilber A. (2010) 'Patient-reported barriers and drivers of adherence to antiretrovirals in sub-Saharan Africa: a meta-ethnography.' Tropical Medicine and International Health. 15(supplement 1); pp16-33. [online] DOI: 10.1111/j.1365-3156.2010.02510.x (accessed 14 April 2012)

Ware N., Idoko J., Kaaya S., Biraro I.A., Wyatt M.A., Agbaji O., Chalamilla G., Bangsberg D.R. (2009) 'Explaining adherence success in sub-Saharan Africa: An ethnographic study.' PloS Medicine. 6(1); e1000011. [online] DOI: 10.1371/journal.pmed.1000011 (accessed 14 April 2012)

Gini Williams
Replied at 5:30 AM, 19 Apr 2013

The ICN TB Project has a full set of training materials based on the transformational training and education methodology which we have developed over the last 8 years. I am willing to share these if people contact me directly. The way we train is very participatory and always uses local nurse trainers, so it allows for the cultural, social and environmental differences mentioned by Malcolm Brewster.
People-centred care by definition has to take personal belief systems and attitudes into account as it requires individual holistic assessment of each patient. One of the main publications we refer to is "Best Practice for the Care of Patients with Tuberculosis". This is a Union guide developed by nurses which outlines best practice standards with detailed practical information on the resources and level of professional practice in order to achieve them. The 12 standards described start from the moment someone presents with symptoms to the moment they complete treatment and focus on the points in care where the risk of losing the patient is greatest. We have also developed an on-line learning tool based on these standards which can be accessed at http://www.cetl.org.uk/learning/tb/index.html.

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