Most adult transplant centers require patients to walk a set distance in under six minutes to remain a good candidate for lung transplant. The thought is that if patients cannot meet this minimal threshold, then their chances of being able to rehabilitate after transplant are diminished. In pediatrics, this is also important. But Dawn Freiberger, RN, MSN, Boston Children’s Hospital’s Lung Transplant coordinator, says there are other factors that have to be considered.
“The walk test is just one piece of the pie,” says Freiberger.
In 2009, The New England Journal of Medicine reported the case of an otherwise healthy 2-year-old boy in Canada who died after surgery. He had received a codeine dose in the recommended range, but an autopsy revealed that morphine (a product of codeine metabolism) had built up to toxic levels in his blood and likely depressed his breathing. Genetic profiling revealed him to be an “ultrarapid codeine metabolizer,” due to a genetic variation in an enzyme known as CYP2D6, part of the cytochrome P-450 family.
While codeine is no longer used at Boston Children’s Hospital, it’s this kind of genetic profiling that Shannon Manzi, PharmD, would someday like to offer to all patients—before a drug is prescribed.
Not all people respond the same way to drugs. The results of randomized clinical trials—considered the gold standard for drug testing—often produce a dose range that worked for the majority of the patients in the study. They don’t take people’s individuality into account, and that individuality can dramatically affect drug efficacy and toxicity.
Adverse reactions are more common than you might think. …
Naomi Fried, PhD, is chief innovation officer at Boston Children’s Hospital. This post is adapted from her remarks at the Connected Health Symposium on October 24, 2013. She tweets @NaomiFried.
In the health care industry, we rely heavily on regulations to ensure the safety of our patients, procedures and drugs. New national health care regulations can even spur innovation in care delivery, but in the case of telehealth, they can be an impediment.
Telehealth, the remote delivery of care via computers, mobile devices, videoconferencing and other technologies, has great potential to improve the patient experience and reduce health care costs by removing the barriers of brick and mortar. At Boston Children’s Hospital, the Innovation Acceleration Program’s pilot telehealth programs have focused on both direct patient care and virtual clinician-to-clinician consultations.
Unfortunately, most states’ regulations are limiting providers’ ability to broadly offer telehealth services. …
For decades, patients have managed their type 1 diabetes by injecting themselves with insulin to regulate the glucose in their blood. While this form of medical management addresses the immediate danger of low insulin levels, long-term complications associated with diabetes, like heart and kidney diseases, still threaten more than 215,000 children currently living with the disease in the United States.
“Insulin injections can manage hyperglycemia by reducing the patient’s glucose levels, but it is not the cure,” says Paolo Fiorina, MD, PhD, of the Nephrology Division at Boston Children’s Hospital.
Fiorina is currently involved in new research targeting a molecular pathway that triggers diabetes in the first place—potentially providing a permanent cure. It could potentially change the face of diabetes treatment in children. …
After an organ transplant, patients need to adjust to a lot of strict routines. This is hard, especially for teenagers who are trying to navigate adolescence. Some young patients say it’s difficult to remember when they need to take all their medications to prevent organ rejection, especially when they’re not feeling ill. Others complain that their parents’ constant harping to follow their care team’s instructions makes them want to do the exact opposite.
No matter the reason, thousands of teenagers are at risk of compromising their grafted organ.
Researchers at Boston Children’s Pediatric Transplant Center are developing a smartphone application that they hope will help adolescents understand the importance of taking care of themselves. But they realize that it’s not enough to take a clinical approach and it give an app makeover. In other words, to truly make an impact on teenagers, the app needs to be more than an electronic version of their parents.
“We really need to create ways to communicate with young patients that’s right for their age and treatment stage,” says Kristine McKenna, PhD, a psychologist with the Pediatric Transplant Center. “If you’re too patriarchal, or if you try to dumb things down too much, teens pick up on that and resent it. But if it’s too high-level they can become overwhelmed.” …
As the science of transplantation has gotten better, the patients whose lives are saved by other people’s organs are living longer and longer. But they’re paying a price—a lifetime of immunosuppressive drugs. William Harmon, chief of Nephrology at Children’s Hospital Boston, is trying to change that. …