When a child has diabetes, it affects everyone in the child’s life, including family, friends, caregivers, teachers and school administrators. The psychological and social impacts of childhood diabetes are far-reaching and can impact entire communities. Texas Children’s Hospital is working to improve care for all children through community outreach, education and early intervention.
A Complex Condition
Children with Type 1 diabetes don’t have enough insulin to carry glucose (sugar) to their cells for energy. If left untreated, this lack of insulin will lead to high blood sugars and can eventually lead to a life-threatening condition called diabetic ketoacidosis (DKA). Symptoms of high blood sugars include increased thirst, increased urination, weight loss, fatigue. The symptoms of DKA may initially resemble symptoms of the flu, such as nausea, vomiting and fatigue, but quickly progress to lethargy, changes in mental status and more. DKA is a serious complication of diabetes that often requires hospitalization.
Type 1 Diabetes imposes a significant burden on children, their families and the health system. At diagnosis, children and their families must quickly learn many new skills, including how to count carbohydrates, how to calculate insulin doses and give insulin multiple times a day, all while still living full, busy lives. As such, the Texas Children’s Diabetes and Endocrinology Center developed multidisciplinary diabetes care process teams to continuously optimize different aspects of diabetes care. The effort has yielded significant improvements in preventing DKA and improving general diabetes outcomes.
Addressing Barriers to Care
The Diabetes and Endocrine Care Center supports five care process teams each focused on a unique area of diabetes care. The high-risk, clinical, inpatient, community outreach and educational groups all work together to improve diabetes care for kids.
“The high-risk team has the mandate of identifying and addressing the issues, especially the psychosocial issues, that cause kids to keep returning to the hospital with DKA and other diabetes complications,” said Selorm Adzaku Dei-Tutu, MD, a board-certified pediatric endocrinologist at Texas Children’s Hospital and co-lead of their high-risk diabetes care process team.
Psychosocial issues of diabetes can be related to stress, anxiety, depression, lack of social support, poor sleep quality and low self-esteem.
“Not all issues are psychosocial, but because many are, the team is made up of social workers, diabetes care and education specialists, dietitians, a community health worker, psychologists and medical providers,” said Dr. Dei-Tutu. “It’s a very large multidisciplinary team that addresses multiple psychosocial barriers that lead to DKA and uncontrolled diabetes.”
Dr. Dei-Tutu recalls one patient in particular, who benefited from the psychosocial support of a multidisciplinary care team.
“This young woman worked closely with the extra care team at our main campus, consisting of a social worker and nurse navigator who work in tandem with diabetes providers and the rest of the diabetes care team,” said Dr. Dei-Tutu. “She came into the clinic often. She knew she could reach her team via email or leave them a message anytime. With that level of care and attention, we saw her A1C decrease dramatically, and her DKA episodes stopped.”
The extra care team even helped her apply to college and get housing on campus. She’s currently in college and doing well.
Considering psychosocial factors in patient care benefits children with diabetes, their families and the broader population.
“Support services, including appointment reminders, transportation assistance and frequent clinic visits, help people better manage their diabetes journey,” said Dr. Dei-Tutu.
Knowledge-sharing and Best Practices
To ensure all kids receive the same excellent and evidence-based services and screenings, Texas Children’s standardizes care at its diabetes clinic locations, while also recognizing that each clinic is unique. These system-wide initiatives address areas of concern for patients, such as increasing attention to children who are considered at high risk for DKA, standardizing inpatient diabetes care and promoting technology like insulin pumps and continuous glucose monitors among many others. These initiatives may look slightly different at different locations, but all providers and staff have the same goal of providing excellent, compassionate care, and these initiatives have made a huge difference in patient care and outcomes.
Sharing knowledge and best practices helps unite the diabetes community locally and nationally. To facilitate knowledge sharing, Texas Children’s partners with the Type 1 Diabetes Exchange QI Collaborative Improvement Collaborative (T1D Exchange QI Collaborative), a non-profit organization focused on improving care and quality of life for people with diabetes through quality improvement efforts. This is a collaboration of over 60 pediatric and adult diabetes centers nationwide.
“The collaborative nature of the T1D Exchange QI Collaborative helps us learn from and share quality improvement practices, such as our wrap-around services, depression screening, efforts to improve technology uptake and more with other centers,” Dr. Dei-Tutu said. “We are constantly sharing our work, and in turn we learn from other people’s work and use that to help our patients.”
Connecting the Diabetes Community
Community diabetes care supports families living with diabetes, provides education for families and school nurses, and advocates for insurance coverage for diabetes technology. It may also include events hosted in a safe, supportive environment.
“We have several special events that reach out to the type 1 diabetes community and bring people together,” said Dr. Dei-Tutu.
Texas Children’s hosts a variety of virtual social groups for children and parents of children with diabetes. Some social groups include celebrity guest speakers with type 1 diabetes. Others feature a talk by a member of the Texas Children’s Diabetes and Endocrine Care team. All include lively discussions that cover a wide range of topics, from exercise management and diabetes burnout to insulin pump troubleshooting.
The hospital also hosts several special events throughout the year, including the Diabetes Spring Fling, an annual outdoor event for families, and the Diabootes Bash, a fall event timed around Halloween where patients, families, and staff get dressed in costumes. The events feature games, face-painting, food trucks, crafts and more. They also participate in community led fundraisers and events such as the Breakthrough T1D and ADA walks. These events aim to foster a sense of community between Texas Children’s diabetes care team and families while helping those living with diabetes to connect with others who share their condition.
Parents and families interested in attending an event can visit Texas Children’s website for more information.
Schedule an appointment or have your child screened for diabetes at Texas Children’s Diabetes and Endocrine Care Center by calling 832-822-2778.