Elizabeth Cox had been doing research for about eight years when one of her research assistants, a new college freshman, provided what she calls a “lightbulb moment.” He confessed to her that he was ashamed that, even while working on her research team at the University of Wisconsin–Madison, he wasn’t taking care of his own diabetes.
His reason was an eye-opener: "I go, and I go, and I go to my appointments. They tell me the same things every time, and none of it ever helps me."
That made Cox wonder whether other children and teens had that same experience. “What are we doing in those visits? What can we do differently?” she asked. More than 175,000 US children and teens have type 1 diabetes. Less than a third achieve adequate control of blood sugar levels.
So, Cox devised a project, funded by PCORI, to help clinics tailor the self-care resources that they offer to children and teens. If young patients don’t identify the challenges they face in controlling their diabetes, they may not get the services they need. Young people with type 1 diabetes—and their families—may lack crucial skills or information, experience difficulty staying motivated, or struggle to communicate with family members.
In earlier work, Cox’s team developed a tool for identifying such barriers to controlling diabetes. In partnership with parents, children, clinicians, clinic administrators, the American Diabetes Association, and JDRF (an organization that funds research on type 1 diabetes), the PCORI-funded study is now examining whether use of that tool to tailor self-management help for children 8 to 16 years of age and their families can lead to better diabetes management.
The Challenge of Living with Type 1 Diabetes
Even in the best of circumstances, living with type 1 diabetes is a challenge. In this condition, a person’s pancreas makes no insulin, a hormone required to process sugar from food to obtain energy. People with type 1 diabetes must replace the missing insulin, either with multiple injections throughout the day or an infusion pump.
Either way, patients or their caregivers must perform frequent blood sugar checks and calculate how much insulin to give. That calculation includes many factors—food, exercise, stress, illness—and consequences of miscalculations can be dire. In the long term, high blood sugar levels can cause serious organ damage. In the short term, low blood sugar can render a person unconscious or lead to seizures or even death.
Keeping track of how much insulin to take can be a tiresome, error-prone process. For teenagers, dealing with that task on top of the stresses of puberty can be especially challenging. And teens with type 1 diabetes living in inner-city or rural areas face additional obstacles, including lack of access to specialized medical and psychological care. Cox says that it’s critical to get effective self-management support to children with type 1 diabetes and their families to help them cope with the disease.
Making Assessments and Tailoring Care
The assessment tool that Cox and her team previously developed is an online survey called PRISM (Problem Recognition in Illness Self-Management). In the PCORI-funded study, the participants filled out this 31-item, 10-minute survey at a routine diabetes clinic appointment. With input from the study’s youth, teen, and parent advisors, the research team then considered the problems identified by PRISM and planned group sessions that delivered evidence-based interventions to address each of three identified self-management barriers.
The project enrolled 200 participants, 8 to 16 years old, each taking part along with one of his or her parents. The participants and parents attended four 75-minute group sessions during one year. Study participants had been getting care from either of two large pediatric diabetes clinics: one serving an urban area and another serving a more rural population.
Half the children and their parents were randomly assigned to use the PRISM tool and attend group sessions tailored to one of their PRISM results, such as “I have difficulty when my routine gets changed” or “I have difficulty knowing or remembering what to do.” All participants received $20 as compensation for their time attending the sessions. The other half of the participants received usual care, which can include referral to self-management help.
It is hard to imagine ever doing another study where I don't start out with patients and families first.
Carbohydrate counting, the recommended way of calculating the dose of insulin needed, was a commonly identified challenge. People tend to underestimate how many grams of carbohydrate are in the food they eat. So in one activity, the research team filled small plastic bags with goldfish crackers or jelly beans to illustrate a certain number of carbohydrate grams. The small amount of food in each bag, Cox notes, “was shocking to some families.” Group members also discussed the pros and cons of various smartphone apps intended to help with carb counting.
Another group activity targeted kids and families who have trouble remembering what supplies they need to carry at all times. The families did a scavenger hunt, filling a diabetes supply kit. In the end, participants were given a small laminated checklist of what to put in their kit. These checklist cards became quite popular with participants, who took extras for their book bags, glove compartments, and other on-the-go storage places.
As the tailored group sessions proceeded, participants began offering advice to one another. Cox reflects, “Some of the best suggestions came from other members of the group rather than the professionals.”
- Understanding and organizing care
- Motivation, as influenced by regimen pain and side effects
- Motivation, as influenced by denial about the disease and its consequences
- Healthcare team interactions
- Family interactions
- Peer interactions
Does It Make a Difference?
Every three months, the team members looked at results from blood samples taken at routine appointments. They recorded hemoglobin A1c, a measure of average blood sugar control over the previous approximately three months.
Every six months, both the children and family members filled out a questionnaire that asked about diabetes-specific quality of life and their experiences with the group sessions.
Here are some of the responses:
- "We all talked, and it gave me and my mom information that we could use in the future." —Youth
- "[My family's] communication is very open now. A lot of our problem solving skills were reflected on and improved." —Adolescent
- "I liked the discussion about choices and how they affect your diabetes and also the consequences of high blood sugar. I hope my son will take this information and think about it." —Parent
- "Listening to [my daughter] talk in this group was the first time I was ever aware of how much she knew… [and] how much she understands what's at stake. And I feel like that allowed me to start nudging her a little more to do things independently." —Parent
- "Group sessions have helped us get back on track. [At the clinic visit after the final group session,] we had the best A1c in years." —Parent
Cox and her colleagues are currently analyzing the data and expect to complete that task next fall. Then, they will share the results with the study advisors and participants, publish them in peer-reviewed journals, and post them on PCORI’s website. In addition, they have begun to produce a toolkit to help other organizations tailor diabetes resources in a family-centered manner.
The doctors actually wanted to know exactly everything that we wanted to say. It was really cool.
Research Participation as an Empowering Experience
In designing the study, the research team relied on about two dozen youths, teens, and parents who participated in advisory boards at each of the two study sites. The groups met about three times a year prior to and during the study.
Rachel Navis, one of the teens with diabetes, describes attending her first meeting with the other stakeholders and research team: “Everyone was silent as we spoke. They were taking notes, and it was like we were the researchers, we were the scientists, we were the smartest people in the entire room. The doctors actually wanted to know exactly everything that we wanted to say. It was really cool.”
She admits that the payment for attending advisory group meetings played a role in her decision to join the program, but it’s not what kept her involved. She says, “I want to be able to help other people in the same situation to be able to adjust.”
The advisory groups provided advice on how to set up the group-based interventions, including what times of day might be best for meetings and whether food should be served. The advisors also helped brainstorm about resolving problems that arose during the interventions, such as drafting reminders to participating families about completing questionnaires or attending study appointments.
“We’ve gotten so much from them that’s profoundly helpful,” Cox says.
Christine Navis, Rachel’s mother, says of her participation on an advisory board, “It’s a very empowering experience. It’s a way to give back to other families who face the same thing.”
Says Cox, “At this point, it is hard to imagine ever doing another study where I don’t start out with patients and families first. It absolutely changes the way we look at a project and the way we do business.”
Family-Centered Tailoring of Pediatric Diabetes Self-Management Resources
Principal Investigator: Elizabeth D. Cox, MD, PhD
Goal: Examine whether tailoring diabetes self-management resources to the needs of individual families improves blood sugar control and boosts quality of life, for the parents as well as the child.
Posted: April 26, 2017