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Healio Rheumatology (Aug 2017): Advancing Standards of Care in Pediatric Rheumatology

The most important challenge facing pediatric rheumatology is a lack of pediatric rheumatologists, according to many experts in the field. The shortage of clinicians has a ripple effect. It impacts the amount and nature of research conducted in the field. Communication gaps exist between young patients, their parents and clinicians, largely because many people simply do not realize rheumatic diseases can occur in children. Diagnoses are delayed. While treatments can be more or less effective in children compared to adults, primary pediatricians or general practitioners may not be familiar with these uses. All of this points to suboptimal patient outcomes.

“A problem is the current rheumatology workforce shortage,” Cathy Patty-Resk, MSN, RN, CPNP, pediatric rheumatology nurse practitioner at Children’s Hospital of Michigan and Specialty Center Detroit, told Healio Rheumatology. “It will continue to worsen unless we all take an active role in educating and inspiring our future rheumatology providers while they are in medical school or pursuing a nurse practitioner education.”

Patty-Resk personalized the far-ranging effects of these knowledge and awareness gaps.

“I have had parents of children with aggressive [rheumatoid-factor positive juvenile idiopathic arthritis] RF+JIA who have delayed treatment with methotrexate (MTX) and biologics out of fear of harming their child’s internal organs despite all the time we spend educating them,” she said. “We have given them great literature, encouraged them to network with other JIA families and the Arthritis Foundation and conducted frank discussions about this potentially crippling disease,” she said.

Despite these efforts, the result is often permanent joint damage, according to Patty-Resk. “I wish we had a crystal ball we could show these parents so they could see the organs and joints prevail and be healthy,” she said. “I spend a great deal of time with these parents at each visit, not only providing care for their child, but emotional support to empower the parents so they can let their child be a kid and say, ‘Go play.’ We need to have a better appreciation of the mind-body connection.”

Author: Charles H. Spencer

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Health Canadacihr logo1This initiative has been generously funded by grants from Health Canada and the Canadian Institutes of Health Research. The views expressed here do not necessarily reflect those of the funders.