As an appropriate extension of my 9/28/09 post, "#s in Health," I bring today an interesting perspective of our never-ending pursuit of prevalence measures.

Social network analysis of autism.

A talk given today by Dr. Peter Bearman, PhD, Director, Paul F. Lazarsfed Center for the Social Sciences, Columbia University, brought up fascinating research that being in social contact with autistic children increased the chances of one being diagnosed him/herself as an autistic child.


But this doesn't mean that autism is contagious.

What it gets at is that parents who have autistic children but don't know it, may see other families in similar situations and decide to take their own children for diagnosis.

The diffusion of health information increases autism prevalence (in at least this California population). But not increasing prevalence counts in a bad way, rather, increasing current counts to more accurate representations of the actual prevalence. The best part is, getting the child diagnosed will help families treat and improve the child's and their own well being :)

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Reference: [Liu, K., King, M., & Bearman, P. (2010). Social influence and the autism epidemic. The American Journal of Sociology, 115(5), 1387-1434.]

Last week I began my 8-week long pediatric externship, beginning first with pediatric infectious disease (PID) for 2 weeks. I've had the pleasure of working with Dr. H and his resident all of last week.

Today he left me with some parting words:

When a doctor or a student says, "The patient won't take his/her meds," change "won't" into "can't" in your mind. Think, "The patient can't take his/her meds."

Dr. H was of course referring to drug adherence or compliance. In general drug adherence is surprisingly low, though there is also a lot of variability. There have been studies looking at how often and how timely prescriptions are filled, and studies looking at the difference between drug adherence for "acute" illnesses (e.g. infections) and for "chronic" illnesses (e.g. hypertension, diabetes, HIV). And there have been studies looking at dosing. Unsurprisingly, taking few medications and taking them only once daily is associated with better adherence. Increase the number of medications and/or increase the dosing to twice daily or even thrice daily, and adherence drops like a rock.

We in the health field need to be cognizant of the struggles patients endure. No one is perfect, and no one should ever be expected to maintain near-perfect drug adherence. We in the health field should not assume an accusatory and antagonistic tone with patients. Let's not assume the all-too-easy tone of voice, "I see you didn't take your meds."

There are a plethora of reasons why patients are unable to adhere to drug regimens. It's not simply that they don't want to; as Dr. H states the obvious, "No one wants to die." So what gives? If you have to take 3 HIV meds twice a day approximately 12 hours apart, and you knew that if you didn't, you're risking your life, why wouldn't one adhere to that strictly? One's life certainly does depend on it.

Consider this: Mondays through Thursdays are pretty standard for most working people. Thus medications are easier to time to daily schedules. But Fridays through the weekend are a different story. If one were to go out somewhere and forgot his/her meds, one would have to return home to take the meds. It's very difficult to revolve one's life around one's medication schedule.

Furthermore, patients may simply not be ready to take their meds and/or don't know why they're taking them. Both are critical issues that must be addressed over a long period of time. At diagnosis, patients may be so overwhelmed by the disease and the implications on being on medication indefinitely that their minds are in a state of shock and disbelief. Imagine you were just diagnosed with HIV, and the person giving you the diagnosis then launches into this long talk about the different meds you have to take, when to take them, how many times a day, the importance of taking it, the disease progression, etc - all in the span of an hour or so. And then for it all to sink in that this will be for the rest of your life. Yeah . . .

There is a model of health behavior called the "transtheoretical model." It begins with "precontemplation" and progresses to "contemplation," to "preparation," to "action," and then finally to "maintenance." With precontemplation, the patient isn't even thinking of medication. Then in contemplation, the patient begins to consider the possibility of medication. With preparation, the patient readies him/herself to take medication. Action is where the patient is actively trying to remember and take the medication; and with maintenance, adherence becomes more or less routine.

It's a long process that requires a lot of counseling from the health provider. It may take months to years to progress from precontemplation to action. I believe I read somewhere that many patients don't even make it to maintenance, because it's so difficult.

So we should ask, "Why can't this patient take his/her meds?" instead of "Why won't this patient take his/her meds?" A patient may be in the precontemplation phase, a patient may be unable to afford his/her meds, a patient may not understand why he/she is taking the meds, a patient may react to an adverse side-effect, and there may be psychosocial factors at play. It is our job, our duty, to help patients work through such issues so "can't" changes to "can."

As with all things, easier said than done.

What's the difference between a patient and a healthcare professional?

Is it education? Experience? Intelligence? Sometimes it's any combination of these factors, and sometimes it isn't. Sometimes the patient is a healthcare professional. Doctors get sick sometimes, too.

So when a pharmacist counsels a patient, it's important that you understand who you're talking to and how much they want or need to know. Of course, this is something that's taught in every pharmacy school in the country, and it seems pretty intuitive. You don't want to explain pharmacology to the 7-year old child, or tell a critical care nurse that "this white pill will make you feel better."

One place it does sometimes get a little complicated is the situation my preceptors are currently in. I'm in a drug information rotation, working for a company that produces, among other things, drug interaction databases for pharmacies and patient education handouts (obviously, for patients). The problem is that these two databases don't always coincide. The department creating the database for pharmacies/pharmacists tends to be a little more selective about which drug interactions and which side effects are included. They only include things that are likely to cause problems and that are decently well documented in the literature. The patient education handouts, on the other hand, include anything and everything. Everything listed in the package insert, every theoretical interaction and side effect, are all listed with warnings in strong language.

The retail pharmacies my company sells these products to are not happy about that. They're concerned that a patient will see these warnings and be angry that no one warned him or her about it. They're worried that the patient might just stop taking the medication on their own. It's a valid concern, I think; it happens more than it should.

The issue hasn't been resolved, and I'm not sure how it will be. But it brings up an important question. How much do you tell patients about their medications? There's a fine line between keeping patients informed and scaring them away. There are a lot of drugs that have extremely rare, but potentially serious, side effects. You can die from an allergic reaction to an antibiotic. Tylenol, even in low doses, can give you liver failure, and ibuprofen can in some cases give you renal failure. It's important that patients be aware that you have to be careful when taking drugs. But it's also important for them to understand why the drug is necessary.

Does that mean we shouldn't use these drugs? In general, no. For drugs that are currently on the market, we've decided that the benefits outweigh the potential risks by a great enough margin. But it's still scary to think that you might be the one patient in a million who gets a blood clot from birth control.

I think the best way to explain it is through risks and benefits. Yes, there is a risk for every drug you might take, and that's why it's better to be on fewer drugs. But in the vast majority of cases, you are more likely to get sick from the disease than from the drug.

(Of course, this comes with the caveat that the risks and benefits need to be clarified in clinical trials. But that's what phase III drug trials are for.)

It's not as obvious as it sounds, when you're the patient reading that package insert. I had a friend call me recently, one who's in the medical field, because she wasn't sure if she should take the course of antibiotic she had been prescribed. She was concerned about the serious (and potentially real) side effects she might get from the drug. I think it put things in perspective a little more when I pointed out that the risk of getting endocarditis (and having to be on IV antibiotics for six weeks at least) was greater than the risk of getting this side effect. But if you aren't used to thinking about things in terms of risk, benefit, and likelihood, it's easy to get caught up in what could happen.

Example 1. Control of Tuberculosis (TB)

Pharmacy Student Friend: Did you hear about that multi-drug resistant type? It's so scary. We need new, better drugs, that's the problem.

Example 2. HIV Vaccine?

Given all of the structural and behavioral barriers to eradication of the HIV/AIDS epidemic, more than one of my professors who extensively research this topic voiced their hopes for an HIV vaccine entering the market some day.

.........

As much as I support biomedical research, I have come to understand that drugs and vaccines are definitely not the simple solutions that everyone thinks (wishes) they are.

For one thing, it is ABSURD to appropriate all of the government funding into drug innovations and ignore public health infrastructure, as a certain previous administration has done.

Bacteria are genetically capable of evolving at alarming rates. Every antibiotic ever introduced into the market has successfully selected for its corresponding resistant strains. The scary part is that the lag time between introduction of a new drug and the appearance of resistant strains has been getting shorter with time (1900s - present). Which means, new TB drugs alone can't save us from Multi-drug resistant strains. They will only create a period of peace until the next resistant strains show up, however soon that may be...

Viruses, on the other hand, are notorious for genetic variation. Some of the vaccines we currently use to prevent certain diseases will only protect against several, but not all, of the subtypes of pathogenic virus. Our struggles with Influenza illustrate the limits of human capability to battle viral mutation rates. HIV also has many subtypes, for which their distribution varies among geographical locations. How many vaccines would we need to develop, and how fast would those become available (long years of testing)? Would there be risks of developing disease from the vaccine itself?

What should we be doing instead?

At least for the above TB example, the answer lies in the need for better drug adherence. Chances of bacterial resistance developing to a certain drug is much lower if patients rigidly follow their drug regimens. The most effective method for this has been Direct Observed Therapy, where health workers physically watch patients as they take their drugs. There are challenges to implementing this practice widely, but it is an important investment to make if we are to keep multi-drug resistant TB out of our hair (and it may prove more rewarding than the costs involved in making new drugs).

And as for an HIV vaccine, there has been VERY limited success in that end of research. Treatment for AIDS has also hit the drug resistance obstacle many times.

Anyways, my point is that drugs and vaccines are great, but they should not be the only focus of intervention efforts.

For what purpose do we practice medicine? For ourselves (i.e. to improve ourselves or out of interest) or for others? Trick question: it's both. Keep this in mind throughout this post.

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On Monday, I went to the HIV/AIDS Awareness Night event organized by one of the student groups. I was pleasantly surprised to see the ID (infectious disease) physician I shadowed, Dr. P, at the event. I also recognized one of the HIV patients on the patient panel, who I saw while shadowing Dr. P.

While we got our dinner, the event began with a 20-minute clip of interviews of two young men living with HIV. Then Dr. P introduced himself as the panel moderator. Each of the 4 HIV patients introduced themselves as well as another ID physician. The remaining hour-and-a-half was devoted to the panel Q&A.

To hear what these patients went through - and still go through - was strangely motivating. It was incredible to hear their stories, their ups and downs, their will to keep moving forward. Two of the patients were diagnosed with HIV in the 1980s and the other two were diagnosed recently (within the last 10 years), so we heard about how things were different then compared to now . . . and how some things regrettably haven't changed.

Each patient recounted how they found out about their diagnosis, and I can't forget the last patient's (an African-American male) experience. He had divorced his wife in the 1980s and was raising their kids as a single parent. His doctor, a white male, thinking himself a savior (the patient's words, not mine) came to the patient's door and gave him the diagnosis. In front of the patient's kids. ::facepalms:: It simply shocked us in the room that a doctor would have the lack of common sense and the audacity to do such a thing.

Throughout the panel discussion, I'm sure a singular thought echoed in the minds of all the med students in the room: "How can we be better? How can we do better? How can we make things better for patients like you?" I learned a lot from this 2-hour event. I admire the patients' courage for coming in and speaking to us, and I admire how Dr. P is there for his patients (I think the 4 patients were all his) and the relationship he developed with each of them. There were a few instances where I felt almost moved to tears.

Dr. P said something I don't think I'll soon forget: "Even today, even though things are better, there's perhaps no other disease that still carries with it the kind of stigma that HIV does." It's true. Even health professionals - health professionals - sometimes react abhorrently (and unjustifiably so) when hearing that a patient in front of them has HIV.

After the event ended, I went down and talked to Dr. P to tell him how much I appreciated him being there and how highly I thought of the event and the patients. I also spoke with the other ID physician. We got talking on public health and the research being done on developing a vaccine or cure against HIV. Talking about the vaccine trial and the "test and treat" model being proposed to "treat away the HIV epidemic" was refreshing. It was invigorating to speak almost on par with an ID physician on such things. He called ID as being "primary care on steroids." I'd agree with that. :-P

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On Wednesday, I went to a lunch talk organized by another student group. A speaker with Tourette's syndrome and Hirschsprung's disease came to give the talk. He told us about his life experiences with these two diseases as he tic'd away (verbal and physical tics). He was a very charismatic speaker and he had aspirations to become a pediatric surgeon (in the footsteps of his pediatric surgeon who saved his life), until he took a year off after undergrad and realized he could probably help more people by doing what he currently does - that is, giving inspirational/motivational talks.

He also said some things that I won't soon forget. There are things that doctors probably should do that med school doesn't prepare for. Med school doesn't adequately prepare students to care for people as whole people. Almost every class we have in the M1 and M2 years are "basic science" classes - anatomy, biochem, physiology, neuroscience, pathology, microbiology, pharmacology, etc - but few classes prepare us for all the other "non-medical" things that definitely impact a patient's health. Med school doesn't prepare us on how to break the bad news of a HIV diagnosis or on how to counsel a HIV patient through stages of depression. It doesn't prepare us on how to help a middle-schooler with Tourette's make friends or on how to talk to other people about having Tourette's. Too often we're taught - either implicitly or explicitly - how to break patients down into symptoms and pathologies, even while being told the whole time that patients are not "HIV' or "Tourette's." Easier said than done.

The speaker left us with an acronym he invented: HAATS. Humor. Acceptance. Advocacy. Tolerance. Support. Humor helps one cope in a healthy way - to laugh at oneself and at others. Acceptance of oneself with a condition or some difference. Advocacy for oneself and for others; many times patients don't have an advocate for themselves, and so the doctor must fulfill this role. Tolerance of others, that not everyone can or will understand - and that's okay. Support from family, friends, medical staff, etc are critically important.

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After reading the 2 accounts above, I ask again: for what purpose do we practice medicine - for oneself or for others? The answer's still true now as it was at the beginning. But I think it's worth remembering the latter purpose. And that's not just for health professionals, but for all of us.

If you want to read more about the Tourette's speaker, you can go to his website at: www.whatmakesyoutic.com.

So . . . I'm a M2/M3 student. That means I'm in limbo between by my 2nd and 3rd years. To all you med folks out there, this spells a six letter word that haunts all medical students alike: BOARDS. As I go through the various websites desperately looking for schedules and advice, I manage to scramble together a semi made up plan, spend countless $$$ buying review books, and set myself mentally to begin my 6 weeks of hell.

Now, as I'm nearing the completion of my first week, I've realized the utter insanity of medicine. As you're in a library nearing the 12th hour of studying, only to sleep and wake up and repeat, your sanity level is nearing the brink of collapse. You go on Facebook, AIM, gchat, MSN, Twitter, news - anything for a distraction. Is all this really worth it?

Yes, we're studying because we're passionate about medicine. I'm passionate, I LOVE MEDICINE. This is why i chose this field. But all this stress, which according to pathology texts, releases countless kinds of cytokines that wreak havoc on our young bodies, can it be healthy? Why can't medicine be more laid back, humanized, and not some field people see as full of jargon and money-seeking doctors and insurance companies? Reforms are needed in health care, yes, but, perhaps people should start with reforming the medical education. So that future generations won't have to "waste" their 20s, 30s, and 40s in a myriad of information; memorizing merely to pass, memorizing merely to match.

me: I heard I had chicken pox as a baby, even before I left the hospital.