Grace was only 11 months old when she was diagnosed with systemic juvenile arthritis.

“We were first-time parents,” says Kate Trevey of Wisconsin. “Your first response is, ‘my job is to care for and protect this child.’ How do I do that when I know nothing about this disease?”

Over the past five years, Kate and her husband Mick have learned how to actively participate in Grace’s medical care.

“We see our role as her advocate in getting the best care, asking tough questions and really being a partner alongside the doctors and nurses,” Kate says. “To me, partnership implies mutual respect. A care provider should value and appreciate the input from parents as much as parents value, respect and need the input and expertise of the doctor. You have to be able to really listen to what is being said as well as what is not being said.”

Parents as "Total Partners" in Care

She feels like she’s “total partners” with the health care team at Children’s Hospital of Wisconsin. “It’s not just the doctors, it’s the whole clinic and the whole system that really needs to be in partnership with families. They do that really well at Children’s [Hospital of Wisconsin].”

Parents offer the medical team a unique perspective on the patient that could help determine the right treatment for the child.

“A diagnosis of a chronic disease is understandably life-changing for both the child and his or her parents, and the magnitude of its effect can impact all aspects of a family’s life. I believe that honesty, openness and empathy can go a long way in providing much needed emotional support to patients and their families,” says Julia Harris, MD, a pediatric rheumatologist at Children’s Mercy Kansas City. Dr. Harris was a pediatric rheumatology fellow at Children’s Hospital of Wisconsin and Grace’s doctor when Grace was diagnosed. “I think it is imperative that physicians partner with parents to provide the best care possible for every patient. In my experience, this takes time — time to build a trusting relationship, educate families and recognize their concerns. I try to make sure children and parents understand the disease process, potential symptoms and medication options, so they are empowered to take an active role in their treatment plan. I believe my patients receive improved care through collaboration and communication, and in turn, families are better able to cope, support one another and advocate for their child.”

Kate and Mick Trevey couldn’t agree more. “Julia understands the important role of empathy and cares for her patients as she does for her own children,” Kate says.

Extending the Efforts

Yet Kate understands that “Not all families have the same ability to advocate for their children, and not all health care providers are ready to be partners with parents in determining treatment.” For that reason, she has been part of The Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) since 2014.

PR-COIN is a network of rheumatologists, nurses, therapists, social workers and support staff at rheumatology centers who, in partnership with families, are working together to transform how care is delivered to children with rheumatic conditions.  PR-COIN’s current focus is improving the outcomes for children with Juvenile Idiopathic Arthritis (JIA). As a quality improvement collaborative, they develop and evaluate specific disease management strategies in order to improve the care of children with rheumatic conditions and determine how best to incorporate these strategies into clinical practice. Together they are working to change the way kids with arthritis live their lives and imagine a new world.

Examples of using parent contributions to transform care have included the JIA Uveitis Screening project and the Poly-JIA Flare Clinical Decision Support Treat to Target project.

“I was asked to join by one of the physicians in our clinic to be sort of the parent rep for our site at a time when the network wasn’t sure what the role of the parent should be,” Kate says. “To be honest, we’re still figuring out clinic by clinic what role the parent should play. It goes back to mutual respect. Parents have experiences, thoughts, insights to share that often are not on the surface, so we need someone to ask the questions.”

PR-COIN parents have developed cards to help providers initiate conversations with parents of their patients and to help them understand more about decisions facing them and their child.

Kate is also a parent adviser to the American Board of Pediatrics and has offered her input into ways pediatricians can improve their professional practice from the perspective of a parent.

“I’m excited about the goals that the American Board of Pediatrics can put into place that will elevate the conversation about QI initiatives and thinking of this holistic care of children,” she says. 

Kate shared her enthusiasm for parents partnering with physicians in May 2015 when she spoke at a PR-COIN network workshop. “I talked about the roles and perspectives that we have and how to engage parents and why it might give value.”

More than a year later, she received an email from Dr. Sandy M. Burnham, a rheumatologist who was at that meeting.

“The ‘aha’ moment for me was Kate’s presentation at the learning session,” said Dr. Burnham. “Ever since then, we have worked to include a parent on all improvement teams. I typically think of a parent who may have encountered the issue targeted in the improvement project and ask if a parent has the time to discuss an issue that we think may be important for their child.”

Kate knows it’s not always easy for medical providers to partner with parents or even have productive conversations with a parent whose child is ill.

“They’re not only dealing with a disease, but how do they do it in a way that is thoughtful and careful for the family, their story and their needs?” she says. “Yes, it does take extra effort, but all good things usually do.”