When children are first diagnosed with type 1 diabetes, there are myriad challenges for the patient and the parents. A new educational program developed by Phoenix Children’s Hospital called Our Journey in the Hospital has proven to be an effective tool for the patients, parents, and clinical team.
About 12 years ago at Phoenix Children’s Hospital, the nurses in the endocrinology unit started to realize that there’s a lot to teach a child about his or her newly diagnosed type 1 diabetes – not just the child, but the parents as well. The child and the parents learn about a lifelong condition and they’re told at the hospital that they basically have to become experts in the 48 to 72 hours before they’re discharged.
So, the hospital came up with a “journey board” concept called Our Journey in the Hospital, game board-like tools (now a free app) to help identify important questions to ask about treatment. The diabetes journey board breaks this overwhelming diagnosis into parts that the family can digest easily and concentrate on the areas that are most concerning to them.
“What I love about the journey board concept is it’s a lot of teams working together, including IT and the endocrine team, our Emily Center Health Information Library, marketing, [and so on],” says Marjorie Abele, MSN, RN, health education specialist at the Emily Center at Phoenix Children’s Hospital. “It’s bringing teams together to provide quality care.”
Each box of the journey board represents an important step in caring for the patient with type 1 diabetes. Some are tasks requisite for safe discharge; some are on the continuum of care, the “journey,” on the outpatient side. At the end of each section, there are teach-back questions. Abele says Phoenix Children’s Hospital, by policy, adopted teach-back as their method for patient education, since it’s an evidence-based process of evaluating understanding. “I don’t think we do that really well in healthcare at this time,” she says.
Diabetes Care Checklist
But this program isn’t just about developing patient education content, it’s helping the endocrine care teams streamline and maximize their efforts to provide the best and most efficient care possible. The clinical team at Phoenix Children’s can coordinate with the IT team to pull data at the time of discharge based on the Journey Boards’ infrastructure, and the clinical team can see how well they documented, which is not always consistent in healthcare. It’s a busy, fast-paced environment, and things can fall through the cracks.
“We’re not just creating patient ed content,” Abele says. “We’re now looking at metrics and quality outcome data. We know our nurses are doing a great job of teaching, but we also realize that documentation can be lax at times just with the hustle and bustle of healthcare.”
“The issue has always been how to efficiently educate young families of varying education levels, of varying resources just as efficiently as we can when you consider that we have many, many people helping care for these patients,” says Leslie Touger, MD, a pediatric endocrinologist and medical director of the Diabetes Program at Phoenix Children’s Hospital.
“We’re not just creating patient ed content,” Abele says. “We’re now looking at metrics and quality outcome data. We know our nurses are doing a great job of teaching, but we also realize that documentation can be lax at times just with the hustle and bustle of healthcare.” – Marjorie Abele, MSN, RN, health education specialist, Emily Center at Phoenix Children’s Hospital, Phoenix, Ariz.
Touger points out that the inpatient nurses work in shifts, and before this journey board model, efforts would be duplicated, and things would be left out. “This serves as a checklist that they talk about airline pilots having, so that everything does get indeed covered in a consistent way, so you can get good at it,” she says.
“The nice thing is because it’s now encoded electronically, if we ever want to change it because we have new insulins or new devices or something, it won’t be like you then have old documents floating around that can mess people up,” Touger says. “It’s very uniform.”
Developing Survival Skills
The journey boards have been instrumental in helping Touger’s patients and their families develop survival skills. But the journey boards and the teach-back questions are on the back end of this process and introducing these families to these educational offerings and engagements can be challenging. For many of these families, it’s their first time navigating a complicated healthcare system that can be extremely confusing. For example, part of the education is to teach them about different brands of insulin, that they’re interchangeable like Coke and Pepsi, and the clinical team works to make sure they’re prescribed the preferred product from their insurance.
Again, there’s a 48- to 72-hour window from admittance to discharge, and some of these families may not even be aware that they have to go to the pharmacy to pick up their medications. Touger says that when the patient is first admitted, they meet with the endocrinologist, who lays out expectations and explains that they are in the hospital to learn about their diagnosis and how to tackle any issues that may arise because of it.
“We introduce a handwritten log that we talk with them about completing because our feeling is if the family can complete a log, three or four meals’ worth of log material, then they can go home,” Touger says. “We can do the rest of the support and education in getting into your target range over the next few weeks. It’s really to set up so we can communicate, so we all speak in the same language in terms of carb ratios, treatment of lows, how to treat lows, how to problem solve.”
After that, the clinical team conducts classes at two weeks and then at four weeks after diagnosis, when they meet with physicians and educators. Then they see patients quarterly, but children grow, and they need dose adjustments between visits. “We teach families to contact our education team between visits with five or six days of data, either from the pump or from handwritten logs, so that they can get a dose adjustment,” Touger says. “The hope is not only does the patient identify a doctor as their doctor but their team, their educator, and so forth.”
Rave Reviews
Phoenix Children’s Hospital’s Our Journey in the Hospital program has produced results that show they are confident patients and families are properly educated, thereby ensuring post-treatment success. In February 2017, the hospital ran its first electronic medical records (into which journey board data are incorporated) report that showed only 40% compliance of documentation on the diabetes journey board, so the education group intervened and communicated with nurses and staff and within two months, they brought that number up to 80%. “Then a few months later, we ran a five-month stretch at 100%,” Abele says. “September 2017 to January 2018, we were 100% each month.”
“The issue has always been how to efficiently educate young families of varying education levels, of varying resources just as efficiently as we can when you consider that we have many, many people helping care for these patients.” – Leslie Touger, MD, medical director, Diabetes Program, Phoenix Children’s Hospital, Phoenix, Ariz.
They also had a nurse educator survey 20 families who were admitted for new type 1 diabetes, asking basic questions about patient engagement and quality. “All 100% of those 20 families agreed that teach-back had been used to validate their teaching,” Abele says.
“To me, it’s a traditional way to do management where you provide what the patients need,” she says. “It is not a revenue-generating activity. We are really fortunate to be at Phoenix Children’s which supports this kind of diabetes education program.”
Medicine is evolving from a fee-for-service environment to value-based care – patient satisfaction and reimbursement structures. The journey boards program has not only seen 100% compliance rates, but it’s also reduced the lengths of hospital stays and garnered glowing reviews from patients. “It’s made the transition from inpatient to outpatient fairly seamless,” Touger says.
- Bagley is the senior editor of Endocrine News. He wrote the cover story in the October issue about how opioid abuse can impact the endocrine system.
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