�Combating Chronic Diseases in India using Community Health Workers�, Blog 1

�Combating Chronic Diseases in India using Community Health Workers�

Bangalore, Karnataka, India

St. John's Research Institute 

Tanvir Hussain, MD, MSc

Blog 1: Project Background

On May 3, I returned to St. John�s Research Institute in Bangalore to continue working on the SPREAD Project.  The SPREAD project (Secondary Prevention of coronary Events After Discharge from hospital) is a randomized controlled trial in secondary prevention of acute coronary syndrome developed to serve the urban slums and rural village populations.  The design is an open trial comparing post-discharge interventions delivered by community health workers to standard care in 10 secondary and tertiary care hospitals. The objectives at the outset were to assess feasibility, estimate rates of adherence to pharmacotherapy, assess adherence to lifestyle modification, and obtain an estimate of the event rates in an Indian setting. 

SPREAD is an example of the response to changing disease burden globally.  As developing countries undergo epidemiologic transition and disease burden shifts from communicable disease towards chronic illnesses, current health delivery systems are being recognized as inadequate to manage CAD, DM, COPD, and cancer in low and middle income countries.  In 2009, the NIH provided funding to medical institutions in developing countries to implement innovative strategies in chronic disease care.  In India, where CVD is the leading cause of mortality in the urban and rural population, St. John's Institute of Bangalore is pioneering a community health worker (CHW) based secondary prevention model for CAD, the "SPREAD" project.

My role in the SPREAD project began during my six week global health elective funded by BWH Internal Medicine department during October through November 2010.  During this time, I enjoyed participating in the conceptualization of the intervention.  My role included working with experienced CHWs in producing a first draft of the CHW educational training materials.  I also produced a first draft of the patient encounter protocol for CHWs�that is, I developed a step-by-step tool CHWs could use during patient encounters to document and counsel patients during home visits, accessible to CHWs with primary school training. 

After I had left the project in the Fall of 2010, the team had taken several significant steps: identification of 14 potential study sites across India and a CHW at each site; translation of patient and CHW education materials into seven different languages (see pictures with Blog 1); training of the CHWs; evaluation of the CHWs; training of study sites for a non-�clinical� trial.  Conducting this process in several languages across fourteens sites was incredibly challenging.  And I was impressed by the team�s perseverance and accomplishments.  

Now that I had returned approximately eight months later, I was anxious to hear about the creative solutions created for the challenges faced by the team, the anecdotes and experiences bourn from the CHW trainings, the anticipations for the future, and more.  Part of my role on the project on this second visit would be to provide an assessment of the CHW training process to ensure the CHWs were adequately prepared to undertake the challenges of counseling and caring for post-MI patients from discharge to one year after their event, both at home and in the hospital.

In my next blog, I reflect on the unique challenges of employing a CHW model in chronic disease management, learnt from our project.

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Mobile West Bank Neurologist

I had the wonderful opportunity to spend a few weeks working with Physicians for Human Rights (PHR) in Israel, and to participate in a "mobile clinic" that brought a group of physicians, nurses, medical students, and other volunteers to both cities and small towns in the West Bank. I want to use this blog post to take you through a typical day:

The group left from Taybeh, a small town northeast of Ramallah, and it was typically made up of volunteers from Tel Aviv and Jerusalem, and a handful from the West Bank itself. We met in the coffeeshop of a gas station outside the town, where Al Jazeera was typically playing on the television:

After the group assembled, we would stand outside in a large circle, and our leader (in the light blue shirt) would tell us about the town we were going to, and then we would go around the circle and introduce ourselves. I was typically the only American in the group, with mostly Israelis and Palestinians, and then various observers from European countries.

We would then load up the vans with boxes of medications, and then we were off. Most of the town we visited were in "Area B" of the Palestinian Authority, which is to say they are under Palestinian civilian authority and Israeli military authority, although we did go to Area A (Palestinian civilian and military authority) as well, such as Jenin. We passed through checkpoints at various places along the way, many of which were entirely empty, to my surprise:

I was kind of surprised at how rapidly something changed across the border--even the cell phone provider!

If we were in Area A, we were escorted by one or two Palestinian Authority security vans:

We would then arrive at our site, and we would typically use a small school, or less frequently an actual clinic. The visit from PHR would have been announced in the mosque for a few days prior to our coming, so we would arrive to a large group of people waiting outside, and there was always a warm welcome.

Dozens of people from the town were there to greet us, including the leadership (often the mayor himself) and scores of volunteers. We would first gather in a large room and the mayor of the town would address the group.

 I would them be led to my "clinic room" where a sign in Arabic reading "Neurologist" was placed above the door. A neurologists' coming would also have been expressly announced in the mosque, and there were typically 20-30 people waiting to see me. Many of them were local, but many had actually traveled from other West Bank town, likely taking hours to get there. This was my clinic room (aka classroom) in Jenin:

The chaos then began. Typically a volunteer was tasked with maintaining the order of the patients, and he or she would take one in to see me one at a time.  I was provided excellent interpreters, typically Palestinian nurses or medical students, and they would speak to the patient in Arabic and then to me in either Hebrew or English, whichever was easier for them. I had at least one Israel medical student with me, and usually one of the European observers. Here is a picture taken by a Swiss observer of one of my patient encounters. I am talking to the patient, who is looking at the interpreter. The medical student in scrubs is keeping up with the documentation. Behind the patient is her brother, who was my next patient (families always came as a group--I would often see three or four people from the same family, one after the other), and then by the door was the list-keeper.

So I would see about 20 patients per day, and I was always the last one seeing patients, keeping the entire delegation from their late lunch. In terms of the cases that I saw, they spanned the entire spectrum of neurological complaints and diseases. There was plenty of migraine, neck pain and back pain with and without radiculopathy, carpal tunnel syndrome, and painful distal sensory neuropathy. Despite my insistence that I was an adult neurologist, I was asked to see children as well, typically developmentally delayed kids, just as an umpteenth opinion as to whether anything was possible to improve the child's neurological function. I was told that there is relatively more consanguinity in this population,  accounting for the large number of developmentally abnormal children, but I have no idea if that's true, and how prenatal and perinatal care have been taken into account. This child is nearly three. His twin died during labor, and his family was told that he had suffered a hypoxic injury. He is non-verbal, and cannot walk, and just in the photograph his hypotonia is obvious with his drooped posture and the fact that this mother is holding his head up.

I saw a few fascinating cases, including what I think was a first presentation of Wilson's disease, severe B12 deficiency (the lemon-yellow skin doesn't really show up on the photo, but it was profound, as was the exquisite dissociation between absence of dorsal column mediated sensation and intact spinothalamically mediated modalities.

I saw a young man (25 years old) with profound Parkinsonism, and from the history I could not begin to figure out what the underlying diagnosis was. The picture is shadowy, but his stooped posture (although no worse than mine) and masked facial expression can almost be appreciated. We went through the protracted process of getting him admitted to Israel for an inpatient workup.

 After all of the patients were seen, the PHR group and all of the volunteers had a meal together ("lunch" that not typically eaten until 4PM when the work was done), with some time for casual conversation, and then a short talk about the history of the town and the specific difficulties it is facing these days.

The mayor of Jayus, a town whose farmlands have been divided by the "wall" told us about the town, looking out over the wall itself.

We would them pack up and head back to Taybeh, and then I would get a ride back to Tel Aviv.

It was a phenomenal experience. Anyone who read this and would like to hear more about it, or be put in touch with the PHR people I worked with, email me anytime at elidiamond@post.harvard.edu.

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Beyond Biblical Days

Kuda Maloney, M.D/MPhil
Dermatology Resident
Trinidad and Tobago: A feasibility study on the utility of a standard set of Images as a screening tool for Hansen�s disease.

Two heavy barrels block the entrance to the street, communicating the wordless instruction to STAY OUT. But the man leaning against the fence recognizes the social worker, waves two youths over to move the barrels and we drive through. We are in a shanty town built along an old railway line in Southern Trinidad. The community is tight with low tolerance for outsiders, and the living space even tighter.
Despite this, the social worker has established a careful trust allowing the physical and social barriers into the community to be temporarily laid aside, as she visits our contacts. I marvel at her ability to impart vague detail, giving people the impression that they know what�s going on, enough so to allow us access, without imparting any information at all. � We are from the skin clinic� we smile.

We finally identify the house and climb the tenuous steps. She is lying spread across a mattress on the floor, the attraction of numerous flies. A nappied toddler crawls over her, patting her hopefully for attention. My heart stops for a second, fearing that she is dead, but returns to its usual cadence as I see her thin ribs rise and fall. She sleeps while we talk to her husband. We�ll have to wake her we explain, to look at her skin, as they were both listed as contacts for Hansen�s Disease. We explain what it is. � Haw, the one from the Bible?� He asks in awe and we affirm. Eventually we wake her and chat to her. She is spent beyond her 30 years. I�m glad that neither of them have skin lesions or sensory symptoms, glad to not have to add to their list of problems. The next family we screen, deep in a rural village, is a riot. The mother is indeed that biblical picture of the leper, with nose collapsed, drooping eyes, contractured joints, multiple amputations. She has managed to draw people to her, her house is bubbling with the activity and laughter of her children and her neighbors. Only her household contacts, her family, are on the list of people to be screened. It is sobering though when we find classic lesions for Hansen�s Disease in one of her friends who fortuitously dropped by that day. We suspect Hansen�s in one of her sons too, and refer them both for evaluation at the Hansen�s Disease Clinic. Our suspicions are later confirmed. We are again met with warmth at the next home we visit as well as a mixture of fascination and pride that a doctor would visit them at home. We also find a new case of Hansen�s Disease there. The numbers are telling...there is still work to be done.

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Thank you means no? Gia Dinh Hospital, Ho Chi Minh City, Vietnam

It's hard to live between culture, and I've found myself floundering a few times. Americans are so earnest, so honest, so straightforward at times, and I've grown to love this way of being. But I forget.

When my grandmother suffered a series of devastating strokes in Romania, we very sadly had to admit her to a nursing home, I'm sure with plenty of guilt of soul searching on the part of my parents. In addition in this country of transition we had to negotiate the usual channels of official and unofficial understandings. 

When my parents brought the gift for the director of the nursing home, she declined the gift so persistently they almost backed down. Then they remembered where they were, insisted, and the gift was accepted in the end. 

Observing this shifts in customs is familiar to anyone who has traveled across national borders, or even from one part of the US to another. 

In Vietnam I had to recalibrate my social compass. 

I don't fully understand how this works, and will need more experience, but the importance of "saving face," on a having a good outward interaction will often lead the Vietnamese to make promises and plans that will likely not pan out. They may have no intention of lying, and assume you have the experience to understand the situation. 

Several junior physicians had been cajoled into "inviting" me to various activities by my more senior host. They were clearly aware that I was foreign, and needed some guidance to settle in to the country. 

I was hesitant to accept the invitations, afraid of becoming indebted in some way I would not understand.  Not meaning to be rude, I accepted any persistent invitations, and sought out appropriate gifts. Once I replied to a text message asking what I would like to do with "thank you for thinking of me," and I'm thinking of these things.... There was no reply. The next week, in the hospital, I learned that "in Vietnam thank you means "no."" Or just thank you, of course.

Oh. OK. So I explained my own confusion, and we made plans, and carried a few out.

Since then there were a number of promises, plans, and many of them where carried out. Generally repeated confirmation and planning steps were a good sign of future activity. No reminders meant I could make other plans. 

One good friend is working for the CDC in Vietnam. Like many other Americans she was frustrated that agreed upon projects and goals were simply not pursued by their Vietnamese counterparts despite many promises and smiles. She was frustrated. I tried to work on her expectations a bit, understanding that "thank you" without any promises is a pretty clear no, while "yes" is very often maybe, and she'll have to take it easy and see when yes becomes real. 

She was only mildly relieved, but decided to reconsider her position.

Initial expressions of confusion or disbelief will not be very helpful. Anger is never helpful, and mutually embarrassing. Smiling always helps. East Europeans are not great smilers, and this may have been a problem even in Boston, but I'm learning, and Vietnam has been a good teacher. 

Just keep smiling. 

Dan-Victor Giurgiutiu

Partners Neurology

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Please bring food, water, and a caregiver Gia Dinh Hospital, Ho Chi Minh City, Vietnamskss

Since the decades of war ended in Vietnam seems to have always fostered large families (four or five siblings is common), until the recent introduction of a two child limit. The culture and even the language is built around a complex web of pronouns and deferential or authoritative addresses based on relative status drawn from age and kinship, then continuing out into relative social status outside the family.

While I can't cover how this shapes society, I'm particularly struck by the care provided in the hospital. The services that are offered in Boston, from orderlies taking care of bodily needs, to web of care from home visits to nursing homes takes in those who are no longer independent. In Vietnam this is rare, exceedingly rare, and often reserved for the well to do. Nursing homes are reserved for those abandoned by society, who have no one else to turn to.

Instead family steps in, with a rotation of caregivers across multiple generations allowing ailing family members to remain at home. When a hospitalization is required a family member is present throughout the day, and at times at night. Dutiful family members, often but not always a woman, sleep on reed mattresses below the fifty year old beds.

On hospitalization a large container of water, a supply of snacks and several forms of entertainment are arranged on the bedside table, and the patient is bathed and changed into the hospital's pajamas. From that point on feeding, bathing, changing is performed mainly by family. When there is money I understand that helpers can be hired. RNs administer medications, obtain tests, and orderlies help shuffle patients from crowded rooms and hallways to tests.

I wonder how this will change as the post war baby boom ages and the tasks of care shifts to the two children per couple. How will they be able to leave their jobs, or children to care for ailing parents or aunts or uncles? How could they possibly neglect their elder relatives to whom they owe so much? I wonder how the US system of care agencies and locations will be adapted in this country which places so much reverence on family support.

Dan-Victor Giurgiutiu

Partners Neurology

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Privacy and Personal Space, Gia Dinh Hospital, Ho Chi Minh City, Vietnam

Even in Boston I'm taken aback considering the experience of the sick, sharing rooms and experiences that are only making illness harder. The actively dying share rooms with the nearly well, and young, and I wonder if the thin curtain in the middle helps or hurts, if it would be better to just draw it back and share the spectacle of the illness.

In Vietnam this question has been in part answered for me.

When I'm told to see the patient in bed 42, I forget to ask a simple question: �Which one?�

Gia Dinh Hospital was build in the early 1950s, and has not been expanded since that time. A bed shortage forces patients to share beds, head to toe. This has been unfamiliar in the US since people stopped sleeping in the same bed in the 19th Century. However, I'm understanding more about the medical exam format note.

Most notes involved a general section, usually noted as NAD (no apparent distress), starting off the physical exam. 

However, the reason for this section dates back to when everyone worked in large open plan hospitals, where telling apart �a redheaded mustachioed man with a bandaged R arm� from the �redheaded mustachioed gentleman with glasses and a scar on the cheek,� would be your best bet to find the patient of interest among 30 other patients in a crowded ward with bed lined up against the wall.

So I've learned to ask for the bed and at least a few identifying features. At times this will include descriptions of a few family members who will volunteer extra information, and often spare the patient, no matter how well, the burden of telling the story, and will speak for them. 

We are surrounded by a gallery of spectators from the moment we walk in the ward, and they don't seem to want to disperse when we start the interview. Initially I asked if they were related to the patient. No, just passing the time. A family member may be down in the canteen, or having a smoke outside, but they'll be right back to help out.

So, two to a bed, every other patient and family member poking in, we start the interview. 

I'm surprised how much the bedmate, other patients, and other family members chime in when the patient has been interviewed many times before. They will describe if the patient was different yesterday, or what the last group of doctors has said. 

For a woman with likely bulbar ALS, her bedmate starts to share how the patient's husband has left her several months back, due to the illness. 

Once it comes time for the exam, and everyone crowds in to see as I push, pull, tap, prick, and walk with the patient, and much like the US, wonder what else I'll pull out my neurology bag.

Then, when we must speak with the family, and give the bad news, I'm left dancing, explaining that the damage is most likely in the brain and spinal cord, but shying away from the difficult discussion of prognosis. As you can see the subject of palliative care and end of life care is slowly being approached in Vietnam, and I am completely ignorant as to how to tell this woman that she will pass away soon. I promise to speak with the attending physician, to come back and check in. I take some small comfort in knowing she is not alone, that her children, and strangers sharing her bed and the hospital room will listen to her, and provide some of the comfort that we alway struggle to give as physicians.

Dan-Victor Giurgiutiu

Partners Neurology

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