Delivering Coordinated Care with a Family-Centered ApproachFriday, June 29, 2012
The diabetes team at Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., understands the importance of involving whole families in the care of children with diabetes.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Members of the diabetes care team at Nemours/Alfred I. duPont Hospital for Children sat down recently to discuss their approach to providing compassionate, family-centered care for young patients with diabetes.
On hand for the discussion were: Cheryl Patterson, RD, CDN, CDE registered dietitian and diabetes program coordinator; Jennifer Dunford, RN, CDE, certified insulin pump trainer and lead endocrine specialty nurse; Celeste Cordrey, RN, CDE, certified insulin pump trainer, nurse research coordinator for the continuous glucose study (CGM), and endocrine specialty nurse; and Kimberly A. Shoe, MSN, CPNP, CDE certified pediatric nurse practitioner, insulin pump and technology coordinator, and lead advanced practice nurse.
The four practitioners showed empathy and affection for, and a true understanding of, their young patients’ medical and personal needs and challenges.
They seek to treat children and teens by not only providing the best possible medical care but by also addressing the emotional side of the disease—a vital component in helping them adjust to life with diabetes. More than treating symptoms, the team develops a relationship with patients and facilitates a process to help the family take ownership of managing the disease.
From being asymptomatic with a high glucose reading in the pediatrician’s office to an extreme diabetic ketoacidosis (DKA) episode, most young patients get their diagnosis of type 1 diabetes in the emergency room. In the fog that surrounds the stressful moments of a new diagnosis, families struggle to process all of the news and information they receive in a short amount of time.
During this time of stress and emotional upheaval, the Nemours/duPont staff is seasoned and prepared to help children and parents cope.The hospital’s family-centered care philosophy emphasizes family involvement as a critical component in successful diabetes management. The team makes every effort to encourage parent, sibling, school personnel and peer inclusion in the process.
Following a new diagnosis, it’s important to get patients started off on the right foot in managing their diabetes.The team meets with the patient and family to explain the disease carefully, come up with nutrition strategies, and provides education on insulin training and blood sugar control. For example, when teaching new patients about their diets, the Nemours/A.I. duPont providers focus on finding balance with carbs and insulin rather than recommending a restrictive diet. They do this to allow the family flexibility in their food choices and a more realistic plan of action. During a patient’s time in the hospital, a parent is encouraged to stay overnight to help alleviate the child’s fears while gaining hands on experience and education.
This focus on children at Nemours/A.I. duPont dates back more than 70 years when benefactor, Alfred I. duPont expressed in his will a desire to “alleviate human suffering.” It was from this bequest that the Nemours Foundation grew, and opened the Alfred I. duPont Institute, a pediatric orthopedic hospital, in 1940. Years later, the Nemours Board of Directors expanded the Institute’s mission beyond orthopedics to include all the specialties of pediatric medicine and surgery. Fast forward to today, and Nemours has medical facilities in Delaware, New Jersey, Pennsylvania, and Florida. Nemours/A. I. duPont has continued its tradition of providing outstanding care for children and has an excellent reputation in diabetes care. The 2011-2012 U.S. News and World Report ranks Nemours/A.I. DuPont diabetes programs among the best in the country.
Patterson, Dunford, Shoe, and Cordrey provided a good cross-section of the various facets of clinical diabetes care at the hospital. Collectively, their responsibilities include everything from pump training to nutrition to handling acute complications.
Dunford, currently in a managerial nursing role, has worked on the endocrinology/oncology floors and spent her entire nursing career at duPont. It was her experience on the floor that initiated her to move to the Division of Endocrinology four years ago.
Shoe has had type 1 diabetes since childhood and knew at a young age that she wanted to pursue a career in diabetes care. Shoe started as an endocrine specialty nurse, became a nurse practitioner in 2008, and now specializes in seeing diabetes patients in their outpatient clinic.
Patterson oversees the coordination of diabetes education activities at the hospital and provides nutrition therapy to diabetes patients. Prior to joining Nemours/A.I. duPont, Patterson had focused on the care of adults with diabetes.
Cordrey has cared for some of the hospital’s most acutely ill children in oncology and cardiac intensive care. Today, she works as a certified pump trainer and diabetes educator for medically complex patients.
While their responsibilities encompass different facets of care they share a common compassion for their patients. Clinically, they strive to do “whatever it takes” to help their patients keep good control of their disease: from using tried-and-true education techniques and resources to working with technology such as smart phone apps to enhance self-management.
DiabetesCare.net sat down with Patterson, Cordrey, Dunford, and Shoe to discuss Nemours/A.I. duPont’s clinical approach to taking care of kids with diabetes, its special programs, and how it helps families deal with the diagnosis and its aftermath.
DiabetesCare.net: Can you provide an overview of A.I. duPont’s treatment philosophy and approach for its patients?
Shoe: With diabetes, the hospital uses a family-centered approach, and a wealth of education that stands behind it. When we educate our kids, it is critical that any and all family members be involved in the education process so they can provide support to the patient. The hospital strives to put patients first in terms of convenience and to accommodate their needs as much as possible.
Dunford: I agree. We are about family-centered care, and we have a major focus on preventative care as well, which ties into education nicely.
Patterson: Another way we have focused on family-centered care is to offer early morning and later afternoon education sessions to ensure kids miss as little school as possible and parents miss less work time.
Members of the Nemours/A.I.duPont Diabetes Team (left to right): Celeste Cordrey, RN, CDE, Kimberly Shoe, MSN, CPNP, CDE, Jennifer Dunford, RN, CDE, and Cheryl Patterson, RD, CDN, CDE
Diabetescare.net: Can you describe what your clinical protocol is when you first begin to treat children with type 1 diabetes?
Shoe: Whether it starts in the emergency room because of a crisis episode scenario or the pediatrician sends them to the ER, the general protocol for our patients with type 1 diabetes is a daily injection of long acting insulin such as Lantus or Levemir and multiple daily injections of rapid acting insulins such as Novolog, Humalog or Apidra to cover the carbohydrates in food. For dosing, we educate patients and families on how to use insulin-based on carbohydrate ratios and correction formulas.
Patterson: After the ER, patients typically go to our pediatric intensive care unit or endocrine floor and get quite a bit of education by the inpatient nurses. After they are discharged from the hospital, they come back in a week for a four hour new onset session with a diabetes educator and registered dietitian.
DiabetesCare.net: Can you provide an overview of what your diabetes floor is like?
Dunford: The hospital is currently undergoing major construction and expansion but for the time being our endocrine and oncology patients are on the same floor. There are diverse populations with differing levels of acuity and a variety of care needs. The staff nurses mostly do survival diabetes education starting the day the patient is admitted.
Our nurses have been working with our inpatient staff through a program called, “Clinical Excellence.” Clinical Excellence is a quality improvement program that brings together in-patient nursing staff, endocrine team members, and clinical coordinators to ensure our patients with diabetes are provided consistent education and great care from beginning to end during their hospital stay.
DiabetesCare.net: Can you review ketone testing and treatment to avoid DKA?
Shoe: With regards to new onset ketones, every patient gets admitted through the emergency room as this is the fastest way to get electrolytes, blood gases, and antibody panel results. If they are in diabetic ketoacidosis (DKA), they go to the pediatric intensive care unit for IV insulin and monitoring. Otherwise, they may receive their first dose of insulin via syringe while they are in the emergency room, then be admitted and transferred to the endocrine unit for a short 2 to 3 day hospitalization for monitoring and education.
Nemours/Alfred I. duPont Hospital
Dunford: If a child comes in with DKA, ketones are not checked on the unit as we expect there to be some residuals for days thereafter. In general, we teach patients to check for ketones at home when blood glucose levels are over 300 or greater than 250 if they are on an insulin pump.
DiabetesCare.net: For in-between patient visits, how do your patients communicate with you and do they utilize specific resources to help with their self management?
Patterson: We encourage regular communication with our team. This can include faxing, emailing, or communicate through the MyNemours site [which can connect patients with medical providers], about blood sugars on a regular basis, calling with questions or concerns, or accessing our physicians on call for emergencies on weekends or evenings. Since diabetes is a “self management” disease, our educators teach the families how to make adjustments based on highs and lows with blood sugars on their own and consult with educators any time they need assistance or have concerns.
Dunford: At diagnosis, they are given a book from the Children’s Diabetes Foundation called, Understanding Diabetes, that we use as our curriculum and families are encouraged to refer to it for additional questions.
Shoe: As inpatients, they are shown educational videos from the Nemours’ www.kidshealth.org, website as well as instructional videos that we developed just for our patients. There are also resources available through ADA, JDRF, and many of other company websites with resource lists provided to all our families.
A lot of patients are using phone apps to look up information or log their blood sugars and send these attachments via email. Any time they have a question about an app or technology, they can contact us.
Patterson: We use the Calorie King book, which patients can also get on their smart phones. And this is in addition to the Pink Panther book [Understanding Insulin-Dependent Diabetes, By Dr. H. Peter Chase].
DiabetesCare.net: Do you have any support groups for families of patients and do you do any outreach with the schools of these patients?
Shoe: We have a weekly support and educational program called the Interdisciplinary Diabetes Education and Lifestyle (IDEAL) Program, which is a four-week program set up to deal with problem-solving and communicating about diabetes. This can help parents strengthen the bond with their children as they get older. It also helps families manage the changes and challenges with compliance that ensue when a child becomes a teenager.
Diabetes is always a balancing act especially during adolescence as teens strive to become more independent. We review the “driver’s education” approach to tackling independent diabetes driving while keeping parents appropriately involved.
Patterson: JDRF is active and offers a lot of support programs for kids and their families in our area. Many families use their resources. For example, they have many programs for children and teens and a mentor program for new patients.
DiabetesCare.net: Can you provide an example or two of any special programs, events, and seminars the hospital does for patients?
Shoe: We collaborate with University of Delaware with their Kamp For Kids (KFK) diabetes camp. Several of our endocrine nursing staff at duPont attend and help facilitate the camp. Our nurses provide diabetes education to the University of Delaware and its nursing students who attend the camp. The camp combines education with fun activities, and patients can bring a friend or a sibling who does not have diabetes with them for support.
DiabetesCare.net: We had heard about a donation program through Build-A-Bear Workshop. Can you tell us about that?
Patterson: Build-A-Bear Workshop contacted JDRF, and they approached us about donating more than 200 teddy bears to our patients who were newly diagnosed with diabetes while they were in the hospital.
Cordrey: One of our patients helped to organize this.
Patterson: Yes, this patient and her mom are very involved with JDRF. We just recently ran out of bears and Build-A-Bear donated more.
Cordrey: We have had other patients get involved in projects, including a high school senior whose Eagle Scout project is to organize something useful to give to all newly diagnosed patients.
Patterson: Another one of our patients just donated messenger bags that included low blood sugar treatment items as part of her Bat Mitzvah project. She included a story inside the bags about how sick she felt right before she was diagnosed with type 1 diabetes, but that all the support and education she received from the hospital staff made her feel better and taught her how to manage the disease.
Cordrey: Our schedules permitting, if we get a request from a school, we will go and talk to students and school personnel about the disease.
DiabetesCare.net: While I can imagine the majority of the patients you are seeing are type 1s, are you beginning to see more young type 2 diabetes patients and how are you addressing these patients in their treatment and diet?
Cordrey: It is clear that we are seeing more patients with type 2 diabetes.
Patterson: Our type 2s are in two different arms: those patients who are treated with insulin and those who are treated with oral hypoglycemics. The latter group is usually managed through our multidisciplinary weight management group program. The kids who are being managed with insulin are seen through our endocrinology department, and we do their education and follow up.
Cordrey: The emphasis for our type 2 patients is on healthy nutrition and on the 5-2-1-Almost None program. This program recommends five servings of fruits and vegetable a day; no more than 2 hours of television; one hour of exercise, and almost no sugary beverages.
DiabetesCare.net: As your type 2s are in two different programs, are you not seeing the patients who are in the weight management program?
Patterson: They have their own multi-disciplinary program with MDs, RNs, RDs, NPs and psychologists, just like we do. Both programs are well-designed and take care of the many facets of diabetes care.
Shoe: When we do see the type 2s, we focus on a healthier lifestyle which is geared towards decreasing their insulin requirements and getting them managed solely on the oral hypoglycemics.
DiabetesCare.net: How do you counsel patients on their diet?
Patterson: The first thing we stress is that there is no diabetic diet; unfortunately, that is one of those age-old terms that are still out there. Typically, our main focus is to get families to eat healthy together, eat from a variety of food groups, and eat the right amounts. Our biggest concern and focus is carb counting since the insulin dosing is matched to the grams of carbs eaten meals and snacks.
DiabetesCare.net: Do you have a specific amount/percentage of daily carbs per child? How do you teach carb intake with patients?
Patterson: We don’t count carb servings; we count carb grams and use carb ratios. On occasion, we do educate people differently, but for the most part we work with carb grams and insulin. We give our kids a general goal of grams of carbohydrates per meal and per day that is intended to provide what they need to grow and develop.
We understand that patients, in particular children`s eating habits, certainly change often and hunger levels may vary. They may want 70 grams of carbs for breakfast one day and 30 grams the next day. As long as they are using the proper insulin to carb ratio for each meal and are eating nutritiously, they should have good blood sugar control. Of course, we stress their meals should be balanced and varied with focus on inclusion of all important food groups and limited intake of fried, fatty, or less nutritious foods. We ask them not to drink sodas and fruit juices, except when treating a low, but everything else is workable. We do try to make their diets reasonable not only for the kids but for the entire family.
Cordrey: Now the type 2 weight management patients are managed a little differently, and they might be a little more restrictive in terms of calorie amounts.
Patterson: Calories are more important and more of a focus for these patients, so they might have more limitations on food quantities. When we look at the diet as a whole, we look at where we can make healthy changes. Increased movement and decreased consumption is more a theme with the type 2 group. That’s why the 5-2-1 program is a huge focus.
DiabetesCare.net: What makes A.I. duPont unique?
Patterson: One of the wonderful aspects of our facility is our staff. People here enjoy working with kids and their families, and have both passion for the job and compassion for the people they serve. We really want each patient to achieve their fullest potential and take the time to help them do so.
Cordrey: I just received an e-mail from a patient who aged out of our pediatric program.She has been in adult care for about six months and her feedback about the care she gets as an adult compared to the care here, it is very different.
Patterson: We have a whole team approach with social workers, psychologists, nurses, nurse practitioners, and physicians working together. There is a great deal of collaboration among everyone here, which is a huge component of our care, and it certainly benefits our patients.
To find out more information about Nemours/A.I. DuPont, readers can go here.