When my three-year old son began having recurrent coughing fits and shortness of breath after exercise, my wife and I knew the probable diagnosis. She and I are both doctors, and my wife has asthma. We made an appointment with our family doctor who confirmed that our son, indeed, had asthma. After prescribing medications to prevent and manage the symptoms, our doctor would have—had we not been medical professionals—taken just 10 or 15 minutes to explain how to administer the medications and avoid triggers like tobacco smoke, mold, pollen, and hairy pets. She would have also had to cram in lessons on recognizing the early warning signs of an asthma attack, what actions to take to treat it, and when to call the office or go straight to the emergency room.
Our son's doctor didn't have go into detail about any of those things and, given her crowded waiting room, I suspect she was grateful. But what about the 7 million other parents whose children are diagnosed with asthma? Or those who live with chronic conditions like diabetes and heart disease who don't have the benefit of my medical school training? Even seeing your doctor several times a year isn't enough to keep you well versed on keeping your disease under control. That's a major reason why so many with diabetes and heart failure wind up in the hospital again and again with complications related to their condition.
One solution that's becoming more widespread: care management or disease management programs now offered by many health insurance plans and some large employers like IBM to help patients manage their care between doctor's visits. Basic programs (which my son qualified for, thanks to my family's insurance policy) generally offer round-the-clock telephone or e-mail access to health educators and informational brochures. More intensive programs may include home visits by nurses and/or remote monitoring of pharmacy usage to keep track of prescriptions written by multiple physicians. Employers and health insurance companies hope to benefit in the long run by keeping employees on the job and defraying costs of multiple hospitalizations for poorly managed conditions.
Patients at Johns Hopkins Hospital in Baltimore can, as outpatients, enroll in the hospital's ambitious Guided Care program. A specially trained nurse in each primary care practice affiliated with Hopkins coordinates care from various specialists—for those with multiple health problems—making sense of various, sometimes contradictory, care instructions. The nurse also provides individualized counseling on diet, exercise and medications, and links the patient to nutritionists and physical activity programs. Recent studies have shown that the Guided Care program improves patients' perceived quality of health care and their satisfaction; it isn't yet known, however, whether it results in fewer emergency room visits and hospitalizations.
Unfortunately, most care management programs haven't been subjected to the same degree of scientific scrutiny, so it's not clear which components help patients most. For example, it's great to be able to call someone when you've got a question about your condition, but you may be able to find equally reliable information on the Internet. And if the nurse on the phone doesn't communicate with your doctor on a regular basis, they might inadvertently end up contradicting each other. In order for you or your loved one to get the most out of a care management program, I recommend that you do the following:
1) Make sure to tell your doctor that you've enrolled in a program and provide the name and contact information. Insurance companies and employers who provide care management programs don't necessarily keep patients' individual physicians in the loop.
2) Find out from your doctor what's unique about your condition and relay that to your care manager. Chances are you deviate somewhat from the "typical" patient with your condition. That's because there's really no such thing as typical when it comes to chronic diseases like asthma, heart disease or arthritis. Everyone has a different mix of symptoms, concurrent health problems, and medical history, so find out where you deviate from the norm. After all, care that's appropriate for one person with a chronic disease isn't necessarily appropriate for another.
3) Check with your doctor about the accuracy of any educational materials you receive. Such materials are usually generic and not meant to cover every conceivable situation. (The same goes for anything you print out from a health-related website, even those from reputable hospitals or government agencies.)
4) Peruse your local library. You'd be amazed how many health books are out there for every conceivable condition. Becoming more informed about your chronic health conditions not only helps you manage them better but also gives you the freedom to worry less about day to day complications allowing you to live each day more fully.