Aubry’s care team manages her symptoms, and her CORE team helps manage the logistics of her medical care.
Aubry Fair’s mysterious health problems started in 2014, when she was 10 months old. She got pneumonia twice in a month and was constantly sick. It seemed to her mom, Kathryn Fair, that she was struggling to breathe. A series of tests at a local hospital were inconclusive and led to a referral to Lucile Packard Children’s Hospital Stanford.
There, pulmonologist MyMy Buu, MD, found that Aubry had an unusual form of lung disease that was difficult to diagnose. And it only partly explained Aubry’s wheezing and swallowing difficulties. Dr. Buu worked with her colleague, otolaryngologist Douglas Sidell, MD, to connect the dots between Aubry’s breathing and swallowing challenges, and to pinpoint the cause of her symptoms. This became challenging as tests continued to uncover seemingly unrelated issues with Aubry’s heart, esophagus, and sinuses.
As Aubry’s condition grew in complexity, so did her team of specialists: Pediatric pulmonologists for her insufficient breathing. Cardiologists for a heart defect. Ear, nose, and throat specialists for an abnormality in her airway and chronic ear disease. “It seemed like we saw every team at Packard Children’s,” says Fair.
As time went on, Aubry continued to get pneumonia and “was hospitalized for every little thing,” says Fair.
A structure for support
Dr. Buu could see the strain of managing Aubry’s care on Kathryn. “Aubry is a complicated kid who gets sick often, and there’s a lot of care coordination to arrange,” she says. Dr. Buu recommended that the family join the hospital’s CORE program, which stands for Coordinating and Optimizing Resources Effectively. The “virtual clinic” offers a range of services for parents who are trying to navigate the complexities of the health care system and manage care across multiple subspecialties and community services.
The CORE team is made up of a social worker, a case manager, parent mentors, a scheduler, a care coordinator, a medical director, and a nurse coordinator. Together, they help parents find ways to stay on top of overwhelming logistics. They also facilitate communication between a family and their subspecialists, and among the subspecialists themselves.
The program started after families dealing with the highest levels of medical need expressed concerns about coordinating their children’s care. Not only is it frustrating and extremely time-consuming for families to try to solve issues with insurance, authorizations, medical equipment orders, referrals for appointments, or pharmacy and medication issues, but it is a huge emotional burden as well. Parents are often anxious and fearful caring for a child who has medical complexity at home without easy access to medical professionals who can answer their questions and give reassurance.
Administrators took note and created this program to reduce their burden, and to help families receive the right care at the right time, in the right place. It’s the first and most comprehensive program of its kind. Because care coordination is such a challenge, it often results in limited and untimely access to health care services, ultimately causing higher rates of hospitalization and emergency room visits.
“We can’t change their disease, but we can help the family access care, and to make their time with their child the best it can be,” says Monica Smith, RN, CORE nurse coordinator.
Coordinating communication
One of the first things the CORE team does fora family is establish their child’s care team. A CORE team member works with the family to identify everyone, within Stanford Medicine Children’s Health and in the outside community, whom they feel is critical to the care of their child. Having a comprehensive care team identified allows the CORE program to facilitate communication when necessary and helps the family have provider names and contact information at their fingertips.
Once families see four, five, or six different specialists, it’s hard to know the answers to questions like, Whom do I call when my child has a fever? What’s the role of my pediatrician? In an emergency, whom do I call first?
Families get a “spotlight card” with a list of who’s-who on their care team, along with who to call, and when. This card has proved to be especially helpful for families when they need to get urgent care in a community hospital. They can hand over the card to give the provider an overview of their child’s condition, a list of medications, diagnoses, care considerations, and whom to contact at Stanford Medicine Children’s Health. This enables local providers to easily contact the child’s specialists to get the information they need either to safely care for the child locally or to make the decision to transfer the child to Packard Children’s Hospital.
Last year, Aubry had a sudden stroke at home. When the ambulance arrived, Fair handed over her spotlight card. The trauma team used it to reach out directly to the right people at Stanford Medicine Children’s Health and decide where to take Aubry.
To keep things as simple as possible, one person on the CORE team becomes a family’s point of contact. This team member acts as a liaison, interacting with specialists to connect care plans, check in with the family, and attend the child’s outpatient clinic visits in person when possible. If the child is hospitalized, the CORE team and all of the child’s specialists are alerted and can better coordinate care between the subspecialties.
“Aubry has a complicated medical history and may be admitted for any number of reasons. When this happens, all of her specialists may not know immediately if she’s admitted,” says Dr. Sidell. “If a patient is in the CORE program, we all get a message and can come by the bedside to help with care. This allows her care team to set up the appropriate lines of communication right away. For a patient with complex medical needs, this is essential. The CORE program provides the continuity and coordinated care network to make this happen.”
For Fair, this level of onsite coordination has been a lifesaver. She estimates that Aubry has had about 40 admissions, each with its own roster of information to learn, next steps to coordinate, and home care instructions to follow. Each time, the CORE team steps in to coordinate care plans and communication during admissions and then follows up with her when they get home.
Emotional support
Fair is brought to tears just talking about how much that support from CORE means to her. “As soon as I joined the program, it felt like home,” she says. “I always feel like I can call or text them and they will follow up quickly.”
Fair feels a special connection to Michele Anderson, a parent mentor on the CORE team who once navigated her own daughter’s complex medical journey, and who lets Fair know that she’s not alone. “Dealing with a child with medical problems can be overwhelming for anyone,” says Anderson. “But for Kathryn, it’s been year after year with so much testing, without a diagnosis, and constant illness and setbacks. It has been lonely and draining for her.”
A unique part of the CORE program is that it goes beyond navigating the health care system. It empowers families to learn how to do it, too. A priority in supporting parents is educating them on how to advocate for themselves. “Part of my role is to help families find their voices and get information about their child so they can partner with the providers and best care for their child at home,” says Anderson.
At first, the CORE team might talk to a newly enrolled family five times a day, or every day for three months. As the family becomes organized and more comfortable managing their child’s care independently, they need less support. Now, there are about 400 actively monitored patients in the CORE program, and 250 families have graduated after gaining the skills to navigate their child’s care on their own. Stanford Medicine Children’s Health is working to expand the program to support more families.
Since Aubry’s medical situation is evolving, Kathryn Fair is happy to stay in the program for now. And she’s glad that there’s a new ray of hope for getting to the root cause of Aubry’s health issues. Dr. Buu recently referred her to the Undiagnosed Diseases Network, which brings together sites from around the world, including Stanford Medicine Children’s Health, to review cases that have confounded skilled physicians. Her case may or may not be selected for the committee’s collective review. In the meantime, Fair is managing to juggle Aubry’s care with going back to school.
“We’ve seen so much growth in Kathryn’s confidence in managing Aubry’s care and how she partners with providers,” says Anderson. “Now, we’re here to give our point of view and help if she needs it. She runs the show now.”
