Abstract
BackgroundRandomized trials have demonstrated the efficacy of patient decision aids to facilitate shared decision making in clinical situations with multiple medically reasonable options for treatment. However, little is known about how best to implement these tools into routine clinical practice. In addition, reliable implementation of decision aids has been elusive and spread within pediatrics has been slow. We sought to develop and reliably implement a decision aid for treatment of children with juvenile idiopathic arthritis.MethodsTo design our decision aid, we partnered with patient, parent, and clinician stakeholders from the Pediatric Rheumatology Care and Outcomes Improvement Network. Six sites volunteered to use quality improvement methods to implement the decision aid. Four of these sites collected parent surveys following visits to assess outcomes. Parents reported on clinician use of the decision aid and the amount of shared decision making and uncertainty they experienced. We used chi-square tests to compare eligible visits with and without use of the decision aid on the experience of shared decision making and uncertainty.ResultsAfter 18 rounds of testing and revision, stakeholders approved the decision aid design for regular use. Qualitative feedback from end-users was positive. During the implementation project, the decision aid was used in 35% of visits where starting or switching medication was discussed. Clinicians used the decision aid as intended in 68% of these visits. The vast majority of parents reported high levels of shared decision making following visits with (64/76 = 84%) and without (80/95 = 84%) use of the decision aid (p = 1). Similarly, the vast majority of parents reported no uncertainty following visits with (74/76 = 97%) and without (91/95 = 96%) use of the decision aid (p = 0.58).ConclusionsAlthough user acceptability of the decision aid was high, reliable implementation in routine clinical care proved challenging. Our parsimonious approach to outcome assessment failed to detect a difference between visits with and without use of our aid. Innovative approaches are needed to facilitate use of decision aids and the assessment of outcomes.
Highlights
Randomized trials have demonstrated the efficacy of patient decision aids to facilitate shared decision making in clinical situations with multiple medically reasonable options for treatment
We further reason that what appears to be a shortcoming of implementation may not reflect an intrinsic problem with the shared decision making (SDM) cards, but rather it may be attributed to the quality improvement inexperience of the network at time of the study
Our parsimonious approach to outcome assessment failed to detect a difference between visits with and without use of our decision aid
Summary
Randomized trials have demonstrated the efficacy of patient decision aids to facilitate shared decision making in clinical situations with multiple medically reasonable options for treatment. Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children and adolescents, affecting approximately 1 in every 1000 young people. This chronic inflammatory disease is characterized by persistent joint inflammation that results in joint pain and swelling and restricted joint range of motion [1]. Very effective drugs for JIA have been developed in recent years [2] Because these medications differ in a variety of important attributes, such as mechanism of action, dosing interval, mode of administration, safety profile, and cost, some patients and families struggle to make treatment decisions and seek wide-ranging information from multiple sources [3]. There is a need for improved communication with rheumatology clinicians about treatment decisions
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