Endodoc

What happens to children with chronic diseases who become adults with chronic diseases?

Over the past 2 weeks I had 2 rather disquieting experiences that demonstrate some of the flaws in the U.S. health-care system (I use the term “system” only for convenience since some would question whether we actually have a health-care system). Both situations involved patients with type 1 diabetes mellitus trying to make the transition between childhood and young adulthood. One patient is a young woman, we’ll call Kathy; the other a young man, Kevin. Both reside in Southwest Missouri and both have been patients of mine since they were diagnosed with diabetes as infants. Both have just finished high school. Kevin is college-bound and Kathy is interested in becoming a phlebotomist. Both have been on Missouri Medicaid long-term; their parents work but have rather low-paying jobs without health insurance.

Kevin

Kevin turned 19 last week and no longer has any health-care coverage. He could obtain high-deductible health insurance through the State of Missouri “High Risk Insurance Pool” at about $800 per month. At present, the patient and family cannot afford the insurance plan thus putting Kevin in the category of “self-pay patient.” Hospitals and clinics use this term for patients who do not have health insurance or have a plan that will not cover health-care costs for the patient at that health-care facility or will not cover a particular diagnosis or procedure. The hospitals and clinics often equate “self-pay” with “no pay,” which is not always true. Regardless, medical facilities generally require a large down payment on the estimated cost of the care before service is given (emergencies are exempt, but one had better be sure it’s really an emergency- you need a medical degree to assess whether it’s really enough of an emergency).

Back to Kevin- he and his parents now have to pay for the diabetes care and supplies out-of-pocket which comes to about $4000 per year (he is on an insulin pump and does very well with his diabetes care). He had planned to attend the University of Missouri and was set to come for freshman orientation a few weeks ago. Unfortunately, the family did the math and determined that even with loans and what scholarships Kevin could obtain, the college costs and the health-care costs were beyond them. Ironically, had he gone to “Mizzou,” he was eligible for a fairly decent health-care plan at about $200 per month provided by the University. So for now, Kevin will attend a local technical school with a goal of obtaining training as a radiology technician. To keep costs down, he will live at home and work part-time. The only good thing about all of this is that he was able to get an appointment with a diabetes specialist for routine care. It was especially good that Kevin was no longer on Medicaid as that physician, like may others in the region do not accept Medicaid patients!

Kathy

Miss Kathy is a nit more complicated than Kevin. She dropped out of high school a year ago and is working at a fast-food restaurant. She intends to get her GED this summer and is interested in becoming a phlebotomist. She is 17 and still on Missouri Medicaid. She has a great primary care physician in the Joplin area who is not afraid of Mediciaid patients. I saw Kathy in clinic the other day and recommended that she transfer to adult diabetes care since she is a young adult. I gave the family the names of several endocrinologists in the Springfield, Missouri area that I know and suggested the family set up a routine clinic visit with one of the physicians. I heard back from the family today that neither physician is accepting any Medicaid patients.

I could have called the physicians and begged them to take the patient but I was not in the mood for begging. I contacted a phycisian in the Joplin, Missouri area (closer for the family than Springfield, Missouri) who is an endocrinologist and she cheerfully agreed to see the patient. The Mediciaid coverage will run out in about 16 months. I hope that by then the patient will have a job with good health coverage.

What is my point?

I don’t mind spending the time to help sort things out for my patients but it’s getting irritating how difficult it is becoming. Medicaid patients are clearly “second class” citizens in the eyes of most health-care providers and medical institutions. Even at my academic medical center, it is a well-known “secret” that many attending physicians will not see Mediciad patients except in their resident physician teaching clinics. Not even professors are immune to class bias.

What is the problem?

There are lots of problems with the U.S. health-car system but one of the most serious is that physicians are not taking the “high road” in the care of patients with no insurance, or even worse, Medicaid. We as physicians have a reponsibility to care for patients whatever their health insurance status. For sure, Mediciad is a very bad system but that’s a different issue than providing patient care. We also need to consider the long-term costs of not providing high quality medical care to patients with chronic diseases, regardless of ability to pay; for example, as I discussed in an earlier entry, the costs of paying for the treatment of preventable diabetes complications, is much greater than just preventing them! What a mess we have.  In a future entry, I will attempt to offer some simple solutions to our health-care chaos.

Background

Last week I heard an interesting piece on NPR radio. A physician from the University of Rochester School of Medicine had just published a study entitled “The Value of Physician Self-disclosure.” I must confess that I am not certain that is the exact title and I have not read the scientific article which was published in ? The Archives of Internal Medicine (I wasn’t listening all that carefully and I was on vacation anyway). Apparently, the author and her colleagues recruited 100 physicians who were willing over a one-year period to see two actors posing as patients. The fake patient visits would be taped and reviewed by the investigators for the quality of the physician interview technique. The physicians would not know who the intruders were.

The results

Apparently, the investigators found that so-called “physician self-disclosure” or MDSD was rampant and took up valuable patient time and was often distracting- by MDSD the investigators meant physician talk about his own life that had nothing to do with the patient’s problems at hand. The NPR interviewer asked if the results suggested that many physicians were just lonely and starving for friendly conversation. The interviewee seemed to think that was a reasonable hypothesis.

What do I think?

I had a number of concerns with the study design and the conclusions but I wanted to wait until I was back in my office and seeing patients again before I took to the website. I am now ready to offer some comments on the study. First, I believe the study design made it almost impossible to assess in any meaningful way if the MDSD was in fact a distraction or a useful part of the interview. Without video, there was no way to tell if the chitchat was during part of the physical examination as a way of allaying possible patient anxiety, or as a way of responding to some patient body language during the interviewing process. Deciding that a physician comment was not relevant to the interview process in some way would have to be highly subjective and I suspect there was an initial biais even before the data were analyzed that physicians waste a lot of patient time. In summary, I would caution people to consider the serious flaws in this University of Rochester study when they think about physician-patient interactions. I do believe that physicians waste quite a bit of patient time but that is mostly while the patient sits in the waiting room for what seems like an eternity before they actually get to see the doctor who often is in such a rush that the patient would have liked more time and maybe even some idle chitchat.

Patient interviews

In my experience, the interview process is a very complicated one and there is a real art trying to get the patient to have confidence in the physician’s skills while trying to get as much necessary information as possible, while trying to allay patient anxiety, and while trying to get the patient to follow the treatment plan (if any) with enthusiasm. That last sentence was quite a mouthful but it’s really what the physician-patient interaction is all about. I don’t think that audio tapes from fake patient visits can assess that complicated process very well. I would hate for some researcher to listen in on my patient visits, particularly those with patients I have been seeing for many years. There is rarely much discussion about anything medical and I surely display a great deal of MDSD (usually because the patient has asked me about my grandchildren or something else of no medical relevance). These patients see me because I am a friend and confidante, and maybe because I am also a medical expert. They rarely need me to give them any specific medical advice; most know just what to do and need mainly encouragement to “keep at it.” Like I said, the physician-patient interaction is very complex. I’d limit those tape recordings to good music.

I can’t believe it’s been so long since my last entry- about two weeks. It’s not really been “writer’s block,” more like “writer’s ennui.” I just couldn’t get inspired to write about anything and now I have a long list, just since this morning. I want to start with an article published in the New York Times today written by Alex Kuczynski entitled “A Sense of Anxiety A Shirt Won’t Cover.” The article appeared in the Thursday Styles section, page E1. The gist of the article is that many boys and young men are having surgery to reduce their enlarged breasts. The procedure is called a reduction mammoplasty and is generally performed by a plastic surgeon.

What is this all about?

Almost all males develop some breast enlargement early in puberty. Typically, a 12 or 13 year old male notes breast enlargement and some tenderness. The breast tissue is generally not more than 1-2 cm (less than an inch) in diameter, and disappears over the next 1-2 years. Occasionally, we see much more striking breast enlargement which requires careful medical evaluation. As an endocrinologist, I have seen many boys and young men for evaluation of gynecomastia. The minor degrees of breast enlargement are easy; generally reasurance is all that is needed. It is the patients with exraordinary breast enlargement that present a dilemma.

First, a detailed medical history and physical examination need to be performed, then perhaps some laboratory studies. The article listed some of the medical conditions that can cause gynecomastia, which include liver disease, certain medications (e.g, psychotropic drugs), hormonal disorders (e.g., congenital adrenal hyperplasia, estrogen-secreting tumors, any condition with low testosterone levels), and illicit drug use (e.g., marijuana). The condition is common in a condition called Klinefelter syndrome- males with a chromosomal disorder, XXY. Not surprisingly, overweight males often have prominent breasts, but in many instances it is simple fat deposition rather than true glandular breast tissue (fat does secrete estrone, a form of estrogen which does stimulate breast tissue formation). Often gynecomastia is hereditary; what do they say-”like father like son?” Rarely does one ever find a specific medical cause for the breast enlargement. The question then becomes what to do about the condition. If there is considerable breast enlargement, it is not surprising that the patient might be quite distraught and even have significant psycholological problems (imagine a 14 year old male with breasts as big as Anna Nicole Smith’s!).

What to do?

In the “old days” we tended to tell patients that their massive gynecomastia would go away if they just gave it time. We now know that that is not true- breast enlargement greater than 4-5 cm. in diameter is not likely to regress much. So, why wait? Why not have an experienced plastic surgeon remove the tissue IF it is a major concern to the patient (some patients are not bothered much by anything)? The argument in favor of waiting is that over time the breast enlargement will go away and that a better surgical result can be obtained by waiting several years. In typical adolescent gynecomastia, I would agree with those arguments, but not when there is a great deal of breast tissue. I do not consider this a simple “cosmetic” issue given the psychological problems that are so common in these patients.

I believe the New York Times article may have done a disservice to these patients- the article focused mainly on the transient nature of the problem and the desire for some males to have surgery to look more “buff.” I am not talking about those types of situations, but rather, males with a large amount of breast tissue who are having psychological problems. Tincture of time and watchful waiting will not improve the situation for these unfortunate patients. Over the years we have been quite succesful in getting insurers to cover the procedure once they understand the situation- a photo often does the trick..

Just to keep you up on the latest news; there was a long article in the New York Times today written by Stephanie Saul and Gatrdiner Harris, entitled “Years Ago, Agency Was Warned of a Drug’s Risks,” (Section C, page 1). The gist of the article was that several years ago the FDA was warned by at least one physician, Dr. John Buse, that rosiglitazone (Avandia) might pose cardiovascular risks for patients with diabetes. Dr. Buse is soon to be the president of the American Diabetes Association. It is interesting that he has done studies for Eli Lilly on a competing drug, Actos. I like Dr. Buse but deep down might there be some bias or conflict of interest in his current criticisms? Maybe not?
Enter the cool-headed British

Most interesting to me was an editorial published yesterday on-line in the distinguished British medical journal, The Lancet. The editorial (I couldn’t find out who wrote the piece), which appeared in my e-mail today courtesy of the Lawson Wilkins Pediatric Endocrine Society, summarized the Avandia “press” over the past 2 days. The author, like me, was surprised at the incredible uproar over the Nissen paper in the New England Journal of Medicine (see my last entry for the details) and the FDA warnings.
The Lancet editorial pleaded for calm and reason; there were already considerable data showing increased cardiovascular risks for patients with type 2 diabetes who took Avandia. The author suggested we might wait until more data are available from large prospective studies that might allow us to sort things out better (just to remind you, the paper by Nissen and colleagues was a meta-analysis of ALREADY PUBLISHED data. Oh, what are the British to think of us?

What does the Avandia story tell us?

Clearly, the way we in American medicine and our patients get information about drugs and other therapies that are commonly used needs rethinking. The Avandia “the sky is falling” story should be embarrassing to us all. Pharmaceutical companies, physicians, the medical journals, and the FDA need to do a much better job in sorting out the risks and benefits of this or that therapy; every treatment, drug or otherwise, has a risk/benefit ratio- sometimes the risks are unknown, but it’s worth knowing that.

I believe most physicians who prescribe this or that drug are very shaky regarding the risk side of things; if physicians do not know the risks of the drugs they prescribe, patients will not get the chance to “weigh in” on whether the recommended therapies are right for them. All physicians, including yours truly, are guilty of not always sharing enough information with patients about a recommended therapy, even if we do know the risks involved. I wonder how many physicians who have prescribed Avandia were even aware of the data suggesting increased risks of heart disease? Don’t get me wrong, even if a drug or other therapeutic approach has risks, it may be well worth the risk for the potential benefits, and that may be the case with Avandia. Who knows?

I have been nothing short of astonished about the hype over the New England Journal of Medicine (NEJM) article published yesterday (actually published on-line prior to it’s scheduled hard-copy release on June 14) on the possible dangers of a widely-used drug for people with type 2 diabetes. In summary, the article, written by Stephen Nissen and colleagues at the Cleveland Clinic, reviewed 44 previously published reports on the use of Avandia and concluded there was a 43% increased risk (relative risk 1.4) of heart attack in people taking the drug compared to those taking placebo or a different diabetes drug. Thus, here we have a meta-analysis- a study that combines the results of actual clinical studies and analyses the data as if they came from a single large study. This is a well-established statistical tool but one with many pitfalls.

How this all unfolded

First, those of us who subscribe to the NEJM, received an e-mail on May 21 with the article. Apparently, the press release was not to take place until after the stock market closed on the 21st. But, earlier in the day of May 21, the report was released by several news services and chaos ensued. The maker of the drug, GlaxoSmithKline had a 7% drop in their stock by the close of the market on the 21st. They, of course, issued a statement defending the drug’s safety. The FDA issued an “alert,” warning patients taking the drug to check with their doctors.

There is more!

In an article today in the New York Times, the interesting course of events and the economic impact of the NEJM report are detailed nicely. The article, written by Stephanie Saul made the front page of the business section and was entitled “Heart Risk Seen in Drug For Diabetes.” The new report summarized the NEJM report and the economics of diabetes drugs (big bucks). In addition, Ms. Saul tells us that as far back as last August, the FDA had data showing increased risk of heart disease in patients taking the drug.

Why so much excitment over this study?

I am amazed at the hype over this report and it does not say much good about the news media, the FDA, medical journals, and doctors. This morning, the news of the dangers of Avandia were everywhere- I just couldn’t hide from it: I even heard about it on CNN when I was waiting to pick up my car (a hybrid) which was getting an oil change.

This is not the way for important medical information to be disseminated. First, I would question how important the news is. Remember, all of the studies that the Nissen article had already been published and those of us “in the field” already knew there were concerns about the cardiocascular side effects of Avandia. The increased risks of heart failure with the drug and with other “glitazones” is well known already. Even worse, along with the Nissen article, there was an editorial and an editor comment that the results should be considered preliminary and interpreted with caution. Give me a break- the NEJM rushes this report to publication, hypes it big time, and asks us to interpret the results with caution. Don’t get me wrong, I LOVE the NEJM and have subscribed to it since 1965, but this was done poorly.

I almost forgot- what should people with diabetes do?

First, I wouldn’t start any patients on Avandia or any of the other glitazones at this time. There are many other drugs (those manufacturers are smiling today). In fact, most of my colleagues who are “expert” in the management in patients with type 2 diabetes, rarely if ever use the glitazones because of their known side effects: I find the vast majority of physicians who prescribe the glitazones and the newer drugs for the treatment of type 2 diabetes, are primary care physicians who learned about these drugs at a drug-company sponsored lecture or from their drug company rep, who provided samples (forgive me if I generalize to excess).

Where do we get our medical information?

One last thing- I am concerned that, increasingly, we (health-care professionals and the lay public) get most of our medical information from the media- TV ads and news reports. The news reports are of particular concern to me. I would be willing to bet that 90% of medical news reported in the media (including the New York Times) comes from only a few out of thousands of medical journals- The Journal of the American Medical Assoication, the NEJM, and Nature. Is it marketing by these journals or is it that the science/medical news journalists rely most heavily on these few journals? I don’t know, but it’s not healthy for any of us.

I just read an interesting book review in the New York Times (Friday, March 23, 2007, page B28)- the review was written by William Grimes and it is available at nytimes.com/books. Dr. Groopman is a professor of medicine at Harvard Medical School and I know he has written articles for the New Yorker for a number of years. Anyway, based on the review I intend to read the book.
I’ve always wanted to know how doctors think. Actually, the thought process that goes into medical diagnosis and treatment is not all that well-understood and defies computer modeling. You’d think one could design a computer program to provide diagnostic possibilities given a set of signs, symptoms, and laboratory test results. The problem has been that just generating a computer list of possible diagnoses, perhaps with statistical probabilities, does not work nearly as well as an intelligent and knowledgeable physician who has the time and interest to “sort things out.” Just having a long list of possible diagnoses based on the computer input, doesn’t get one much closer to diagnosis and treatment. Where computers help is in making one aware of drug incompatibilities, side effects, etc., that might be of great importance once a diagnosis is made and treatment planned.

Of course, most of medicine is quite pedestrian; whether we are generalists or specialists; most of what we see is the same thing over and over again, maybe with a few twists here and there. The really good doc can somehow tell when a problem may not be so run-of-the-mill. In my experience, the best physicians look at diagnosis and therapy as steps to the best possible outcome, whatever the problem. The “steps” are careful follow-up with a willingness to rethink the problem at any point along the way if the pieces are not fitting together as they should. No one is perfect, and we all make mistakes; we can only hope that we do not make many mistakes and that we learn well from each one.

It’s hard now that we have so many fancy diagnostic tests available; there may the temptation to order many expensive tests to make a diagnosis without thinking things through carefully. I have noticed that many younger physicians (I won’t define what I mean by “younger”) jump to diagnostic testing even before they have obtained key information from the history and physical examination. Some also order a “battery” of tests when they could start with just a few key tests and see what the results show. I’m not talking about a medical emergency where one might have to act quickly and ask questions later (what’s that old joke about “ready, fire, aim?”).

Anyway, I looking forward to reading Dr. Groopman’s book. Maybe it will make me smarter?

First, don’t get me wrong. I do not intend to make this website “political,” merely informative. If I seem critical of some governmental policy or some stated position of a politician, so be it. I don’t think either of the 2 major political parties in the U.S. have a “lock” on what’s best for the health care of children. I do, however, have a bone or two or three to pick with the Bush administration regarding childhood obesity. I read in the New York Times today (page 21) that President Bush’s new budget proposal includes a 5.4 billion dollar decrease in funding for the Children’s Health Insurance Program (CHIP). In addition the budget proposes less than half the funding necessary to maintain coverage for current enrollees. As we will discuss in the near future, there is a higher proportion of children with obesity and diabetes in the very population covered by CHIP than in the general population. But wait. The administration is proposing 17 million dollars for a new program to promote “healthy behavior” among adolescents. Sounds great. But at the same time it is requesting elimination of a 99 million dollar/year program for states to prevent obesity, diabetes, and other chronic disorders in children and adolescents. I’m no mathematical genius but that looks like a net decrease in funding by 83 million dollars?

I must admit that I have no idea if the program currently in place has been effective or what the new proposed program is all about. I think it’s mostly wasted money, regardless. We can’t legislate less obesity in children, particularly when we have systematically cut back or eliminated school physical fitness programs (gym class), offer fast food in the schools, and continue the relentless tv advertisements for big juicy hamburgers, fries, and such. We all (politicians included) just give lip service to serious problems like childhood obesity that require serious action if we are to have any meaningful impact