A Pathway to an Improved Patient Experience: Enhancing Care for Children on the Autism Disorder Spectrum

“He’s just a joy.”

Kate Weitz beams when she talks about Freddie, her almost 7-year-old son: “He’s gigantic. My kid is going to be taller than me in two years.”

Skateboarding, trampolining and climbing – those are his latest obsessions, and Weitz says Freddie is fearless when he’s in that zone. When he’s in the doctor’s office? That’s another story.

“For Freddie, even getting a stethoscope on him is uncomfortable to the point that he’s vomiting,” she says.

Funny and “beyond energetic,” Freddie is also one of more than 3.5 million Americans living with an autism spectrum disorder (ASD). Factor in a concurrent asthma diagnosis and it means regular appointments at Children’s Nebraska, which, Weitz says, can be an emotional challenge.

“It’s hard to explain, unless you’ve lived through it, how difficult just going to the doctor can be for kids on the spectrum who have sensory issues,” Weitz says. “Freddie becomes so upset it’s hard to do anything.”

Freddie was diagnosed with autism more than three years ago. To improve the care experience for him and the growing number of kids like him, Children’s has launched a new program called PATCH (Patient Assistance Team at Children’s Nebraska).

“This program really sets the foundation for individualized care for children on the autism spectrum,” says Nicole Walker, supervisor of Child Life services. “If we can set the foundation for a positive health care experience and continuously build on that, we can help these kids establish good coping skills and help our staff know how to best work with the patients and their families.”

At its core, PATCH creates a pathway that facilitates communication between parents of ASD-impacted patients and hospital staff. This helps ensure patient needs are clearly and efficiently identified and necessary modifications can be made to the care plan. Parents begin the process by completing a child information form, which can either be emailed to them or accessed through the Children’s Connect online portal.

“Parents are the experts on their children. They know things about their individual child that can make their care so much easier,” says Michael Vance, Ph.D., director of Children’s Behavioral Health Services.

After the parent information form is reviewed by the Child Life team and the patient’s care team, it is entered into the child’s electronic medical record, where it can be accessed easily, updated and acted upon. Even small modifications to standard care can result in big improvements in patient compliance and emotional control — something as simple as putting a patient’s ID arm bracelet on their ankle, letting a parent take their child’s temperature or communicating with a non-verbal child through pictures.

The pathway also focuses on modifying environmental and procedural aspects of care — everything from taking steps to reduce wait times to controlling outside stimulation, including “things like the light volume in the room or the location of the room in terms of the amount of noise or traffic that’s happening,” Dr. Vance says.

The need for such a pathway is only increasing. Dramatically. According to recent CDC estimates, one in 68 children (one in 42 boys) are diagnosed with an ASD, an increase of more than 100% since 2000, when the number was approximately one in 150 children.

“This helps Children’s be more proactive,” says Weitz. “The numbers are going up, which means you’re going to have more and more patients, and it’s best to be prepared.”

Weitz brought the pathway concept to Dr. Vance after becoming aware of a similar program in Fresno, Calif.

“The buy-in was instant,” she says. “The entire Children’s staff took it and ran with it.”

As part of their preparation, they studied and interacted with existing programs around the country.

“We asked, ‘What have you learned, what’s working, and what would you do differently?’ They all emphasized how rewarding it was and how appreciative their staff and the families were once the program was up and running,” Dr. Vance says.

Children’s debuted its PATCH pathway in the spring as a pilot program in Children’s Outpatient Surgery Center. It will expand, in time, throughout the entire hospital and then into the Children’s Physicians offices and other off-campus sites. Weitz has an even broader vision for the program: “My major ambition is to get this citywide. … If we’re going to have a better community for everyone in Omaha, everyone has to buy in, not just Children’s. But, this is how it starts.”

Dr. Vance says getting the pathway to this point has been a collaborative, multidisciplinary effort: “We’ve been involving our IT team, our Child Life team, our anesthesia team, our marketing team, our nursing team…”

Walker adds, “What’s really great about this program is that the people involved have so much passion. They’re willing to learn and take in advice from the parents, the medical staff and the community. That gives me a lot of hope that the program will be successful.”

And a successful program can serve as a model and catalyst for other hospitals not only in Omaha but across the region and beyond, establishing Children’s as a leader in specialized care for children with an ASD.

“Our mission and our values are consistent with becoming a global leader in the care of children, helping them grow and prosper, and controlling the things that we can help control,” Dr. Vance says.

Initial funding for PATCH came from a Children’s Nebraska Foundation grant. Weitz also helped raise money for the pathway through her annual, “epic” Ladies Dance Party fundraising event. She is heavily invested in the program’s success, more than willing to be a resource and an advocate – and all for good reason: so an energetic and fast-growing 7-year-old can skate through his medical encounters as fearlessly as possible.

“Freddie is hilarious,” Weitz says. “He’s awesome.”

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