Channel: Cincinnati Children's

Category: Nonprofits & Activism

Tags: juvenile arthritispassion for nursingfrom the heartnurse who loves kidspediatric rheumatologymaking a differenceadherencebiologicnursingcincinnati children'sjuvenile idiopathic arthritisimproving treatmentbarriers assessmentpatient serviceschanging the outcomeadherence to medicinemake a differencechange the outcomealways wanted to be a nursein it for kidswheelchair to walkingbetter outcomes

Description: cincinnatichildrens.org Janalee Taylor, APRN, Division of Rheumatology: "I always knew I wanted to be a nurse. I actually had some health problems myself as a child. And then we had several people in our family that had also had significant health issues. They would often talk about how the nurses supported them and what difference it made for them. It's really what drove me to say, OK, that's what I want to do. I want to try and make a difference. If I can make a difference in the life of one child, then it will all be worth it. I love kids. There's, I mean, I'm probably a kid at heart. I have always worked with children. I knew that's what I wanted to do, or you get so you know them, you get to see them grow up, go through different developmental stages, graduate. Some of them even get married. So it depends on how long you follow them. My youngest patient was two months old when she was diagnosed with Juvenile Idiopathic Arthritis. And so we can follow them a long time. Well, one of the things we know patients taking their medicine 100 percent of the time is not normal, OK? We sort of expect that. We developed a barriers assessment tool, or we call it 'the bat.' What that does is ask families or patients, 'What gets in the way of taking your medicine?' And then the goal is really to reduce those barriers so that we can increase adherence and ultimately improve outcomes. I've been in pediatric rheumatology about 41 years now. So, when we first started, really all we had was baby aspirin. In 1999 was the very first biologic that was approved for children with juvenile idiopathic arthritis. Every drug essentially in biologic that has been approved for use in Juvenile Arthritis has been tested. And this center is the hub for that group. The very first patient to receive a biologic, which was Etanercept, at the time, the very first trial - that patient was treated here at Cincinnati. And she had been in a wheelchair for four years and she came back for her visit. About four weeks later, we brought her back to check her and weigh her and measure her. And the mom said, wait just a minute. And she said, OK, go ahead. And the little girl got up and walked to the scales and I started crying immediately and the mom was crying, and I had to run and get the physician, got all the nurses and we were all in the hall applauding and cheering her on. So, it has really changed the outcome and turn the disease around.