Empowerment Through Education and Continuous SupportFriday, March 29, 2013
As a leader in pediatric diabetes care, Children’s Hospital of Philadelphia (CHOP) places a significant emphasis on comprehensive education and developing a supportive relationship with its patients that continues in the outpatient setting. These two foundations help young patients and their families when they leave the hospital and transition to self-care, so they can excel with their diabetes management.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
The hospital, nicknamed CHOP, has continued in its tradition as a medical leader and center of excellence in more recent years as well. U.S.News & World Report has ranked CHOP number one for diabetes and endocrinology in the nation for five years in a row.
Within CHOP is its Diabetes Center for Children. The center is involved in a variety of areas within diabetes and devotes personnel and resources to research, clinical care, and patient education.
CHOP’s Diabetes Center is led by Director Steven Willi, MD. Dr. Willi (pictured, lower right) has spent a large portion of his career at CHOP including doing his residency and fellowship there. He has been in his current position since 2004, and he oversees a large team of physicians, nurse practitioners, diabetes educators, social workers, researchers, and physicians in training.
In Philadelphia, the standard of care for any child who is starting insulin injections for type 1 diabetes is to be admitted to a hospital. Therefore, CHOP is seeing a large amount of the city’s patients at the time of their initial diagnosis. As such, Dr. Willi says CHOP not only provides their patients with the survival skills needed to care for themselves, but meets patients’ additional ongoing needs and delivers care in a comprehensive, coordinated support system that helps patients transition quickly to self-care.
DiabetesCare.net: Can you talk about CHOP’s approach to clinical diabetes care?
Willi: Whether it is the parent of a young child that needs our advice, or a teen who is struggling to care for his or her own diabetes, our philosophy is to empower patients by providing the education and support needed to help them care for their disease.
DiabetesCare.net: In looking at patient education, what is CHOP’s philosophy?
Willi: We are certified as an American Diabetes Association (ADA) center of excellence. That means we have a core curriculum, which covers all the requirements that ADA has decided are priorities.
An example of how our education has been developed to meet a common need that develops in the care of patients with type 1 diabetes is a group class that is designed for patients contemplating using the insulin pump. We actually have labeled it colloquially as the “Thinking about a Pump” class.
The class is taught by a dietitian and certified diabetes educator who is also certified in pump training, and it’s designed to give patients a better understanding of what a pump is, what it does, how it works, and the things that are needed in order to be successful in utilizing it.
This is useful as a group class because patients often have similar questions at this stage–and they can actually learn from one another. So, rather than have the practitioner answer all the questions of an individual patient in an office visit, the group class can provide the necessary information for the patient to decide if the pump is right for them. Then, the patient can discuss this option with their practitioner, and be set on a path toward initiating the pump with individualized training.
DiabetesCare.net: Can you talk about the various phases of your patient education program, and what types of classes and opportunities you offer to both inpatients and outpatients?
Willi: Of course our diabetes education programming begins with an inpatient stay. Patients who are diagnosed with type 1 require guidance starting on insulin therapy.
In between the inpatient stay and the first outpatient visit, there are additional units of education given to the patients. We review the “Survival Skills” and we present the “Advanced Home Management” education. This touches upon the varied and more detailed aspects of diabetes care, including nutrition, how to manage blood sugars during exercise, adjusting insulin doses in response to trends in blood sugar readings, and management of diabetes during routine illnesses like the flu.
Patients will then transition to outpatient care, and they will see a diabetes team that includes a nutritionist, nurse practitioner, physician and social worker. Each of them have their own area of expertise and many of them are certified diabetes educators or carry other credentials that qualify them as diabetes educators. It’s a coordinated care approach.
And when they go home, there is constant contact with the diabetes team. Our patients have access to a consultant 24 hours/7 days a week. Initially, it is a nurse practitioner who is part of the inpatient service. This is a person who has gotten to know the family during their inpatient stay, and this care provider will stay with them until they transition to successful outpatient care. The medical provider will continue to follow the patient, often with daily phone calls, including counseling, and anticipatory guidance for patients about what to expect next during their convelscence.
DiabetesCare.net: Can you talk about some of your other specific educational programs, including how you bring education to the individual communities?
Willi: One example of a specific program is our insulin pump training. As far as I know, we may be the only pediatric diabetes center that does all of our own pump training. We don’t rely on outside company representatives or outsourcing of the education. We are also training patients to use the latest diabetes technologies, like continuous glucose monitoring (CGM) systems.
This CGM program allows patients’ to “upload” data from these devices which monitor blood sugar 24 hours a day into a computer system. Then our care providers can meet with the patients to discuss the details of blood sugar fluctuations and how their care can be improved.
When we started our education program we did it at our CHOP site in Philadelphia, and everyone would come to us here. We now have eight satellite locations and we do diabetes care in every one of those sites. We also have educators in our four busiest satellites, but we still need to be able to deliver education to the other locations.
We are working on ways to dispense education in the local communities. We are looking to have the ability to use web-based conferencing programs, such as Skype, either directly with individual patients or in group settings. We are just starting this program and developing the tools. By using a program such as Skype, we may be able to educate patients in all of our satellite sites.
In addition, we are building a library of online learning tools that patients will access via our website. We also provide education to personnel at various agencies that support our families in the community such as school nurses and case workers.
DiabetesCare.net: One of CHOP’s clinicians, Dr. Terri Lipman, recently reported from her Pediatric Diabetes Registry about the higher incidence rate of type 1 in young children in the city. Generally speaking, what can be said in terms of the incidence rates of type 1 versus type 2?
(Editor’s note: DiabetesCare.net recently wrote about Dr. Lipman’s findings, and interested readers can find that story here.)
Willi: Dr. Terri Lipman’s data is the most authoritative here in Philadelphia, and the biggest trend worth noting from her latest findings was the aforementioned incidence rate of type 1 diabetes in the young population. We are seeing an earlier age for onset of this form of diabetes. This has been reported in Europe as well as the U.S. No one knows what the reason for it is, but it is an undeniable trend.
There is another trial, the SEARCH diabetes registry. It incorporates approximately 6 percent of the national population. That trial began in 2002, and it has been the most authoritative on the incidence rate of those with type 1 and type 2 diabetes. That data has mirrored some trends that were found in Dr. Lipman’s data.
Another trend that has been found in Dr. Lipman’s data as well as the SEARCH registry is the increase of the incidence rate of type 2 diabetes in the adolescent population in the 10-19 age group. There has been a shift over a number of years towards more type 2 diabetes as opposed to type 1 diabetes in this older age group. It ties in with the obesity epidemic that we have been experiencing. It also seems to be the case in certain ethnic groups including African Americans, Native Americans, and the Pacific Islander population.
DiabetesCare.net: In thinking about how serious diabetes has become in the Philadelphia area, is CHOP doing any public awareness or outreach in the community?
Willi: We do outreach in the community and with other medical professionals. In terms of medical providers, a number of our faculty continue to do grand rounds presentations in the area. For example, I have done talks at Virtua (a local New Jersey Hospital) about screening for diabetes.
We also do an educational program for practitioners in the Philadelphia area. In early February we presented our fourth annual symposium which CHOP’s Dr. Craig Alter and I co-directed and where a dozen of CHOP’s faculty spoke. It’s a yearly symposium given on a Saturday, which is designed for practitioners who care for children. It covers all aspects of endocrinology, including diabetes topics.
In the greater community, we have done outreach through the Diabetes Expo in Philadelphia held each fall at the convention center. Those are done primarily to raise awareness of diabetes in the lay community. We also participate in a number of health fairs. The JDRF and the ADA have walks that are vehicles for fundraising. There is also an outreach mission there as well. We attend those walks and talk about the diagnosis of diabetes. We focus on the siblings of children with diabetes because of their increased risk.
We are also using the power of social media via our Facebook page to connect with both individuals and other organizations who have a similar mission to support families in managing this chronic condition.
DiabetesCare.net: In April, the hospital will be putting on its “Living Well With Diabetes: Now and the Future” conference. Why is it important for CHOP to put on events like this?
Willi: This is our third annual event, and it is another opportunity to do community outreach. It has been designed primarily for the families that are working with us, but it has also attracted people from other programs and people who are just interested in learning more about diabetes.
Our primary purpose in putting on this event is to meet the needs of our patients from an educational standpoint. We also try to invite nationally known prominent individuals to speak so people will have a better understanding of different folks who have type 1 diabetes.
Last year, for example, we had Dr. Aaron Kowalski, assistant vice president, Treatment Therapies, JDRF, speak about the Artificial Pancreas project at JDRF. This year, we have Dr. Natalie Strand, a physician with type 1 diabetes who won the "Amazing Race" from the TV show of the same name. Also speaking will be Dr. Anne Peters an internationlly known diabetologist who will be talking about transitioning adolescents with type 1 into young adulthood. This is a huge area of concern, especially for parents. This is also a poignant topic, because it has recently been discovered that diabetes outcomes worsen in the years that a child moves toward becoming independent of their parents with regards to their diabetes self-management.
We will also cover a wide spectrum of topics on everything from diabetes basics to more complex topics like carbohydrate counting and new diabetes technologies. This way, people have the ability to pick and choose what is of interest to them. And as the title of the program suggests, hopefully the program is a way of empowering people to take better care of their diabetes.
DiabetesCare.net: CHOP was voted number one for diabetes and endocrinology by U.S. News and World Report. What is it about the hospital that sets it apart from other medical centers?
Willi: We have been fortunate that we have been ranked number one since the rankings came out. As far as what sets CHOP apart, it’s the people and the overall philosophy of the hospital that starts at the top on down. The CEO of CHOP is actually a pediatric gastroenterologist. He was my attending physician while I was a resident here in the mid 1980s. He started with that background and asking questions like how do you care for patients and how do you improve patient outcomes? How do you work with a family of a child to get them to achieve their goals despite their illness?
There is a philosophy here that places the family and the child at the very center of our mission.
For families interested in learning more or signing up to attend the “Living Well With Diabetes: Now and the Future” conference in the Philadelphia area on April 20, go here.