New Tools in Juvenile Arthritis Treatment Help Children, Their Families and Their Rheumatologists Share in Important Health Care Decision Making

Article ID: 609116

Released: 18-Oct-2013 3:00 PM EDT

Source Newsroom: American College of Rheumatology (ACR)

Newswise — SAN DIEGO – Learning that your child has arthritis can lead to a number of questions and concerns about treatment options and prognosis. But, partnering with your child and his or her rheumatologist in shared decision making about their health care can lead to better outcomes overall, according to research presented this week at the American College of Rheumatology Annual Meeting in San Diego.

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.

The American College of Rheumatology is an international professional medical society that represents more than 9,000 rheumatologists and rheumatology health professionals around the world. Its mission is to advance rheumatology. The ACR/ARHP Annual Meeting is the premier meeting in rheumatology. For more information about the meeting, visit or join the conversation on Twitter by using the official hashtag: #ACR13.

Editor’s Notes: Dr. DeWitt will present this study during the ACR Annual Meeting at the San Diego Convention Center from 9:00 AM - 11:00 AM on Tuesday, October 29 in Exhibit Hall B2 C-D.

Abstract Number: 2212

Development Of Tools To Facilitate Shared Decision Making About Medications For Juvenile Idiopathic Arthritis – A Project Of The Pediatric Rheumatology Care and Outcomes Improvement Network

Esi Morgan DeWitt1, Ellen A. Lipstein1, Katie Staun2, Linda Scherer1, Janalee Taylor1, Carole M. Lannon1 and William B. Brinkman1, 1Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 2University of Cincinnati, Cincinnati, OH

Background/Purpose: Medication options for juvenile idiopathic arthritis (JIA) are increasing. Medications differ on a variety of attributes, including mechanisms of action, dosing intervals, modes of administration, safety profiles, and cost. Some parents of children with JIA are left with questions and concerns about medications suggesting a need for improved clinician-parent communication. Decisions like this, with multiple reasonable options that differ in ways that matter to families, are conducive to "Shared Decision Making" (SDM). SDM is a process whereby clinicians share information about the options and patients/parents share information about their goals and preferences. Together, a treatment plan is developed that is the best fit for the individual patient and their family. We conducted a project to develop tools to facilitate SDM within the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN). PR-COIN is a learning network designed to improve outcomes of JIA care using quality improvement (QI) approaches.

Methods: Development of issue cards to facilitate SDM involved multiple steps including qualitative interviews with clinicians and care providers, direct observation of clinical encounters, and an iterative design process involving a graphic designer and a stakeholder panel of clinicians, allied health professionals and parents. We introduced the prototype issue cards for use in clinics using Plan-Do- Study-Act (PDSA) cycles. We elicited feedback to guide card revisions from PR-COIN members via weekly electronic surveys and discussions during monthly webinars and following direct observation of encounters using the cards.

Results: We identified the medication attributes deemed most important to discuss by our stakeholders, including "How Soon" will therapies take effect, "How Often" are they given, "Side Effects", "Cost", "How Long" will need to stay on the medication, and "Other Considerations." We used these attributes to organize the issue cards and symbols to convey key concepts (see Figure). Intended use of the cards involves clinicians showing the cards to patient and parent and asking which card they would like to discuss first. By selecting a card, the family reveals what is important to them. After 18 revisions, PR- COIN stakeholders at 6 sites found the issue cards to be acceptable for regular use.

Conclusion: PR-COIN issue cards are well accepted by clinicians and families within network sites. PDSA cycles continue as we seek to implement the issue cards in routine clinical care to facilitate SDM across the network. Our ultimate goal is to drive improvement in child JIA outcomes by reliably engaging patients/parents in SDM to select a medication that is a good fit. Disclosures: E. Morgan DeWitt, None, 2E. A. Lipstein, None, 2K. Staun, NoneL. Scherer, NoneJ. Taylor, NoneC. M. Lannon, None, 2W. B. Brinkman, None, 2


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