3. Don't just rely on Google for an understanding of what you face. A new diagnosis often has parents searching online like mad to decipher what their child, and the family as a whole, will need to handle. Much information—trusted and otherwise—can be found online, but your computer isn't the only source. Children's hospitals commonly have Parent and Family Resource Centers that can be incredibly useful, says Beverley Johnson, president of the Institute for Family Centered Care. Staff that point parents in the direction of disease- or treatment-specific literature and research means not having to wade through the online morass.
4. To get an appointment with an elite specialist, enlist the pediatrician. Though nothing bars family members from calling a top-notch specialist's office to get an appointment, your child will likely be better served if the pediatrician works the system on his or her behalf. "That's the easiest way to get in," says Maria Britto, pediatrician and director of the Center for Innovation in Chronic Care at Cincinnati Children's Hospital Medical Center. That's true even if the two doctors don't know one another, she adds. The pediatrician will pass on details of your child's medical history, physical exams, diagnostic work done up until that point, and also have a conversation about the urgency of the case. Families should also be aware that getting an appointment with a world-renowned "super specialist" might actually mean seeing one of the fellows training in that person's office. "You might get the last five minutes of the appointment with the famous doctor," explains Britto. To avoid frustration and heartbreak, ask exactly who your child will see and what role the sought-after specialist will play when booking the appointment.
5. Ask about volume and quality measures, but also about the depth of the care team. Yes, high praise from a co-worker's sister whose child had the same condition matters. But numbers are very important tools in deciding where to have your child treated—so don't shy away from asking about the data. Generally speaking, an important gauge of a doctor's or hospital program's worth is high volume. The more similar patients treated, the better. In adult medicine, such numbers are relatively accessible—in part because adults tend to have more surgeries and treatments overall than kids do, and because Medicare collects much of the data. In pediatrics, however, robust volume data tends to be available only in certain areas like cancer, organ transplantation, and cystic fibrosis, says Britto. So while "volume is still a reasonable thing to ask about" in pediatrics, she explains, "You can't hang your hat on it." This is because a good number of children's procedures and treatments have relatively low volume altogether, making it difficult for a family to go on volume alone.
Therefore, parents will need to dig deeper. Ask how the hospital tracks its own success in treating your child's disease—the important outcomes, the complications to avoid, and how their record compares with that of other centers. "If they can answer those questions, that's a good start," adds Britto. For example, with severe asthma, what percentage of patients end up having to be admitted to the intensive care unit, need to be intubated, or get serious cardio-respiratory treatment? Or in a heart surgery, what is the infection rate and what percentage of kids can play without limitations after healing from the procedure?
Quality is not fully measured solely by the numbers. Do they have a comprehensive team dedicated to the disease or procedure? This means not just having specialist physicians, but nurses and therapists to support the team and family post-surgery or over the course of treatment. Ask how a team would coordinate care, for example, when a child needs airway reconstruction, say, because they have residual damage from being on a ventilator as a baby. Not only is an ear-nose-and-throat surgeon integral to the procedure; so is a consulting gastroenterologist, a speech therapist, and a feeding specialist. Understand who is involved and how they create a treatment plan.