New tools in juvenile arthritis treatment help children, their families and their rheumatologists share in important health care decision making

Juvenile idiopathic arthritis, or JIA, is a term for several types of arthritis, all involving chronic (long- term) joint inflammation. This inflammation begins before patients reach the age of 16, and symptoms last from six weeks to three months to be called chronic. JIA may involve one or many joints, and cause other symptoms such as fevers, rash and/or eye inflammation.

Medication options for JIA are increasing, and these new medications differ in how they work, how and how often they are taken, their safety and their cost. With the multitude of factors to consider, open communication and teamwork between parents, their children and their rheumatologist becomes increasingly important.

With this in mind, researchers from the Cincinnati Children's Hospital Medical Center and the University of Cincinnati developed and tested tools for shared decision making in pediatric rheumatology.

"Shared decision making is a process where physicians share information about treatment options, and patients and their parents share information about their goals and preferences. And, together, a treatment plan is developed that is the best for the patient and their families," explains Esi Morgan DeWitt, MD, MSCE; associate professor; Cincinnati Children's Hospital Medical Center and lead investigator in the study.

Through the Pediatric Rheumatology Care and Outcomes Network (called PR-COIN) Dr. DeWitt's team conducted interviews with physicians and other health care professionals and directly observed patient exams and encounters with their physicians to identify topics of high importance for discussion when considering JIA treatments. Through this research, the following six categories emerged as highly important for shared decision making: 1) How soon medications will take effect; 2) how often they are given; 3) potential side effects; 4) cost; 5) how long the patient will need to stay on medications; and 6) other considerations.

The researchers used these to create a series of cards to be used in physician visits. "During the visits, the physicians are intended to show the cards to the patient and ask which card they would like to discuss first. By selecting a card, the family reveals what is important to them, and that is the beginning point of conversation," says Dr. DeWitt.

Once the cards were created, Dr. DeWitt's team shared them with a panel of physicians, health care professionals and parents -- seeking feedback and suggestions for improvement. After 18 revisions, the cards were ready for use and issued to 11 sites where they were tested.

"PR-COIN developed issue cards to engage families in shared decision making around JIA medication choices in order to achieve high decisional quality for children with JIA and ultimately to improve outcomes of treatment," Dr. DeWitt says.

According to Dr. DeWitt, the issue cards created have been well-accepted by clinicians and families within network sites. The cards have since been adapted from print media to an interactive electronic format to be useful in a variety of clinical settings. The network is now using quality improvement approaches to develop reliable care practices to identify patients facing medication decisions and to implement use of the cards.