In 2011, the National Heart, Lung, and Blood Institute recommended universal cholesterol screening for adolescents and young adults ages 17–21 years. This recommendation is endorsed by the American Academy of Pediatrics and is meant to detect abnormal cholesterol levels that could lead to problems many years in the future, like heart attacks and strokes. The recommendation is predicated on the premise that teens will actually want to do something about an abnormal result — like change their diet or exercise habits or take a cholesterol-lowering medication. But will they?
As clinicians and researchers in the Division of Adolescent and Young Adult Medicine and the Department of Cardiology’s Preventive Cardiology Program, we sought to answer this question by going straight to the source — teens and young adults between the ages of 17-21 years. As part of a Patient Centered Outcomes Research Institute award, we teamed up with a variety of stakeholders who care about heart health and cholesterol screening in youth — teens, parents, pediatricians, nurse practitioners and researchers in the field. Working with this panel of stakeholders, we devised a set of hypothetical cholesterol-screening scenarios and presented them to 37 youth at different levels of risk for cholesterol problems, as well as 35 parents of youth in this age range. We asked them how they would feel if they or their child received a very high, moderately high or reassuring cholesterol test and then explored their thoughts and feelings further in an in-depth interview. Our results were recently published in the Journal of Adolescent Health. …Read More
Anyone who’s a regular at a coffee shop can relate to this scene: you walk in, and the barista behind the counter notices you. She waves, says your name, and you wave back. By the time you get to the cash register, she’s already handing you your order — just the way you like it.
If your local coffee shop can prepare for your specific preferences, why can’t your health care team?
Often, the kinds of information not typically captured in a medical record are crucial to a patient’s experience. For example, if a child sucks his right thumb, his mother may tell the sedation nurse try to inserting the IV in his left arm first. If a baby girl isn’t calmed by music but is mesmerized by a spinning toy, her father may want that toy in the room whenever she’s having an echocardiogram, so she sits still and the images are easier to interpret.
“Patients with chronic conditions return quite frequently to the same clinic for follow-up care and tests, and they shouldn’t have to repeat the same information each time,” says Brenda Brawn, RN, BSN, CCRN. “It’s not extraneous information; it can and should be incorporated into their plan of care.”
Brawn has been piloting a way to address this need in her work as a cardiac sedation nurse caring for pediatric heart transplant patients.
There were many skeptics who said we couldn’t create a self-sustaining pediatric cardiac surgery program in West Africa. But after eight missions to Kumasi, Ghana, our team’s goal was fulfilled.
Along the way, we faced numerous challenges.
For starters, when our initiative — called Hearts and Minds of Ghana — launched back in 2008, clinicians in Ghana had never seen open-heart surgery in children. (We were the first team to successfully conduct pediatric open-heart surgery in West Africa). In the beginning, Ghanaians asked what was going on and questioned the promises we made. They wondered, were we actually going to help? Would we come back?
How do you go about building a new medical facility that improves upon current workflow and safety but also anticipates technologies and care models yet to be developed?
It’s a daunting task, and one that demands collaboration among all stakeholders: clinical staff, patients/their families and building architects. A workgroup from Boston Children’s met with consultants from FKP architects to come up with a vision for a brand new clinical building set to open in 2022. As part of the pre-planning process, FKP proposed a bold idea: constructing life-size cardboard replicas of clinical areas for doctors, nurses and patient families to “test” with simulated scenarios.
“There are no disadvantages to this approach,” says Uma Ramanathan, AIA, lead architect on the project for Shepley Bulfinch, the architecture firm designing the new building. “If only everyone could use this level of detail!” Shepley Bulfinch joined the simulation project to observe and record data and insights.
“For architects, visualizing space comes easily,” Ramanathan adds. “Not so much for others.” …Read More