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Sunday, March 25, 2012

Myths, obstacles and snafus - why children with asthma don't always receive the right care

Asthma affects about one in twelve children, making it the most common chronic disease in pediatrics.  Much more is known than ever before about the genes and molecules that make it happen, and expert guidelines provide a roadmap to care.  Newer agents and delivery systems promise improved efficacy and safety.  As such, we ought to be really good at diagnosing and treating it.   And yet, serious gaps remain.  Here's why.

First, asthma is a "sneaky" condition.  It would be great if every child with asthma, and only those with asthma, came to the doctor with cough, chest tightness, and wheezing.  Mission accomplished.  Good job everyone.  Next case. But that's not the reality.  According to studies, half of all children have one wheezing episodes by 36 months of age, but only a fifth of them will turn out to have asthma.  Further, young children don't complain of chest discomfort; they just get cranky.  On the other hand, recurrent cough and wheeze at any age requires an explanation, and as a matter of fact, a "cough history" is one of our most important tools for sorting out the thorny problem of diagnosis.

When I say that asthma is "sneaky," I also mean that the symptoms can increase so gradually that parents can easily overlook the fact that something is amiss.  One of my favorite diagnostic encounters was with a wonderful parent from whom I was getting some historical information.  In connection with her four year old son, whom I was seeing for the first time with shortness of breath, I asked "does Johnny have trouble with coughing?"  Her answer was incredibly helpful: "No, just his normal cough."  You see, this boy's symptoms had emerged so insidiously that it became this family's new "normal."

Here's another reason.  Neither pediatricians nor parents like to see children taking any more medication than necessary.  Ok, I know this is a generalization.  But when it comes to chronic medication, we're squeamish.  Which is really dysfunctional, since we ought to be more concerned about unnecessary antibiotics, decongestants, antihistamines and other commonly prescribed medications where over-prescribing exposes children to risks that exceed the benefits. (See my previous posts on inappropriate antibiotic use!)   When it comes to asthma, evidence-based guidelines highlight the role of airway inflammation and the central role of every-day inhalation of anti-inflammatory medications for all children with "persistent" asthma.

Finally, we need to take asthma seriously.  For children with the most severe forms, this is easily done - when a child gets very sick from asthma it's impossible NOT to see that this condition requires diligent, ongoing care.  My concern here is with children with mild and moderate asthma who suffer unnecessary loss of sleep, discomfort, missed school, exercise intolerance, restricted play and the like.  They, too, are at risk for more severe exacerbations leading to an ED visit or hospitalization.  But aside from this, they are suffering needlessly.  These children and their families need good primary asthma care, including a partnership between the care provider, child and parent.  They need to know what causes asthma, what avoidable triggers (like tobacco smoke) make it worse, how to use their medications properly, how to self-monitor and when to seek assistance.  They need periodic asthma "check ups" to adjust medications and review control.

Fortunately, more and more pediatricians are getting involved in quality improvement work around conditions like asthma that ensure that the care we provide is standardized against the best science, and also individualized to meet the need of every child.

Saturday, March 24, 2012

One Child in Twelve: Asthma and Allergies

I'm scheduled to do an interview with Newsday this week.  The question we will discuss is this: "will the warm winter cause an unusually severe allergy season?" The problem with print media is that the readers can't see you shrugging your shoulders.

There are few scientific studies to inform the answer, but lots of educated guesses.  We are already seeing and hearing signs of Spring.  There was a blazing cardinal on my front lawn this morning and yesterday a visit to Planting Fields Arboretum rewarded us with a feast of colors not at all typical for March.  As a result, there should be an early rise in the levels of pollen - the stuff that trees and grasses produce to reproduce.  And so, those individuals whose immune systems mistake this material for an invading organism will mount a vigorous counter attack that works, biologically speaking, like a circular firing squad.  We call such individuals "allergic" and their dysfunctional responses, "hay fever" and "asthma."

Hay fever is the quintessential misnomer, having little to do with hay and nothing to do with fever. Those of us who get it (around 10 - 30% of the population) experience itchy eyes and noses, congestion and discharge.  The allergic swelling of our nasal passages also blocks up the outlets of our sinuses, predisposing us to sinus infections, also called "sinusitis."  Many experience lack of sleep and the symptoms are both uncomfortable and distracting.  Nonetheless, hay fever is a minor affair when compared with what happens when the same kind of irritation and inflammation take place in the bronchi (the branching network of conduits that transport gases to an from the lungs.)  And this more serious condition, of course, we call "asthma".

Asthma has been understood and misunderstood for centuries.  We currently know that asthma is a genetic disorder, usually appearing in childhood, often coexisting with infant eczema and nasal allergy, and involving constriction of muscles in the bronchial wall AND inflammation of the bronchial lining.  Although wheezing is a classic sign, not all wheezing is due to asthma, not all individuals with asthma wheeze, and most important, not all wheezing is detectable without a stethoscope.  As a matter of fact, most wheezing in children is not.  Consequently, this most common chronic disease of childhood remains under diagnosed and, when diagnosed, often under treated.  

What will this allergy season be like?  As Yogi Berra famously said, "it's hard to make predictions, especially about the future."  What I WILL predict is that we have much more work to do to effectively apply what we already know and what there is yet to learn to help individuals - and children in particular - to thrive in every way, even if they have asthma.


Saturday, March 17, 2012

Customer? Consumer? Patient?

How did you feel about your last hospitalization?

Several years ago, the federal Center for Medicare and Medicaid Services began collecting survey data from patients, and publishing hospital report cards on patient experience.  Moreover, CMS began to tie incentives and penalties to performance, helping to drive patient satisfaction to the top of the priority list for hospital leaders.

How did this all come about?  One source was a 2001 report by the prestigious Institute of Medicine which made a compelling argument for the case that American healthcare fell short of meeting the needs of our citizens.  "Between the care we receive and the care we could receive" the authors wrote, "lies not just a gap...but a chasm."  Among those gaps was insufficient attention to "patient centered care."  Healthcare has spent the last decade - and longer - in an effort to understand what that means, why it is sometimes lacking, and what we can do about it.

Hospitals went through a stage where hotels and restaurants were felt to hold the answer.  According to the "Service Excellence" school of thought, if Ritz Carlton can make every guest feel special, why can't a hospital?  Meetings and posters referred to the "voice of the customer" and "exceeding expectations."  There was some merit to this approach: one way to disrupt entrenched thinking is to go outside one's own walls, and no culture is more insular than that of healthcare.  However.

This approach should have alarmed us on its fundamentals, and has by all accounts led to mixed results at best.   And so, from many quarters - purveyors of survey tools, the hospital industry and academia among others - another framework is emerging.  It is new and it is old and it is about one human being caring for another.  It is about recognizing what it is to treat the ill and injured, and what makes the health professional different from the hotelier.  And that is the solemn responsibility, and the unique honor, to care for those who are suffering.  This is a much higher standard, and one which is more authentic to those who provide, as well as those who receive, hospital care.

"Empathy based care" is a new term for an ancient idea.  More about how empathy is regaining our attention next time.

Thursday, March 8, 2012

Blah blah patient safety blah blah

This is Patient Safety Awareness Week, an annual observance of the National Patient Safety Foundation. Every year my CEO raises the same objection: if we are all about patient safety, why do we need an annual observance?  If I were a patient, he says, I would hope that every week is "PSAW."

Good point.  The problem with a concept like "patient safety," however, is that with repetition the term can become leeched of all meaning.  It drives me nuts to hear someone being interviewed about this and offer that the point of patient safety is "to keep patients safe."  Bland platitudes are not what we need.

Not when the mandates of the 1999 Institute of Medicine report are largely unmet.  Not when checking into a hospital is roughly comparable to bungee jumping for "safety."  And certainly not when it is still all too common for healthcare professionals to inflict avoidable harm on patients.  When we talk about "adverse outcomes" in this context we need to be crystal clear - we are talking about something that we did to the patient, or failed to do correctly, that left them temporarily injured, permanently disabled or dead.  Something that was not the result of their underlying illness, but of our "care."

It is fair to say that we have made inroads.  The rate of some avoidable hospital infections has plummeted.  Physicians have begun embracing standardized order sets that help them not to forget things that ought to be part of the patient's treatment plan.  (This was no easy feat:  it took years for us to get over the loss of status.  If we're perfect, after all, why should we use such a crutch?  It's as insulting as asking the flying Wallendas to start using a net!)  We even use checklists in the operating room, just like cockpit crews.

Well, not exactly.  Unlike cockpit protocols, which have resulted in huge strides in aviation safety,  OR standardization has yet to bear the same fruit.   As a matter of fact, according to statistics maintained by the Joint Commission, the number of (reported) wrong-patient, wrong-procedure or wrong-side operations has only increased since such protocols were implemented.  It's not clear why.  The most cynical have suggested, however, that while surgeons may be adversely affected by operative accidents, there's nothing like being at the pointy end of a 100 meter projectile to focus one's attention on safety.

Personally, I don't buy this.  The fact is that Medicine is a very messy affair, and its practitioners are accustomed to this disorder.   Which means that it will take time and the work of provocateurs to keep us on the path to dramatic improvement and away from comfortable and familiar cliches like "patient safety."