How many doctors know about Batten Disease or CANDLE Syndrome or Gaucher disease or Pompe disease? The answer is not many. Even if your ill child has a more common condition, you want to make sure he or she is seen by the best. But it can be hard to know who is the best – it doesn’t take much for a doctor to put together a webpage highlighting his or her achievements and so sifting through the thousands of possibilities online may not give you the information you need. But there are some things that are harder to fake. Here are some true signals of quality that you can depend on to determine who will be in charge of your child’s care.
1. Quality of the Institution
Doctors work in a highly competitive field in which the best have the option to work at the best places. This means that with few exceptions, the doctor working at the Mayo Clinic is likely to be better than the doctor working at your local clinic. This is especially true because your care depends on more than just the specialist – it depends on the nurses, facilities, and other specialists that are part of the system. If you’re looking for specialist care, one good place to start is to check the hospital rankings in U.S. News and World Report and then decide how far it’s possible to travel to climb higher up the list.
The best specialists not only offer care, but do research that pushes care forward. This means that the best specialists tend to be the ones with the most papers published in academic journals. Try searching PubMed.com for your child’s condition to discover the names of doctors that are publishing in the field.
3. Your PCP
Especially if your child’s condition isn’t all that rare, your primary care physician should be able to make a strong recommendation for a specialist. If he or she doesn’t have one at the tip of their tongue, they know people who know people. As long as you trust your primary care physician, you should be able to trust his or her recommendation. But be clear about what you want! Do you want the best or do you only need the easiest? Do you need to travel to the best hospital in the country or do you and your primary care physician think that your child’s condition could be treated locally? And if you don’t trust your PCP to offer this kind of recommendation, maybe it’s time to look for a new PCP – if you have a chronically ill child, chances are this isn’t the only time you’ll need someone one the front line to work with you to manage your child’s care.