Design and implementation of a decision aid for juvenile idiopathic arthritis medication choices

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.

Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews

“…Approaches to minimize the effects of JIA on young people vary widely, and their success is often very personalized to the individual. One study evaluating a decision aid for children with JIA found that the tool had high acceptability but lower efficacy, leading authors to call for more innovative approaches to using decision aids and assessing outcomes among children [12]. A review of mobile phone and tablet apps that support personal management of illness in young people found that apps for diabetes, asthma, and chemotherapy recovery show some impact on monitoring and adherence, but the strength of evidence is weak [13].…”

The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis

“…The research team, which included a pediatric gastroenterologist, developed a semistructured focus group guide based on our prior work 7 – 9 , 13 , 14 and literature review. The focus group guide was reviewed by a patient consultant using cognitive interviewing techniques and revised based on feedback.…”

A Principal Components Analysis of Factors Associated with Successful Implementation of an LVAD Decision Support Tool

“…Speci cally, what may account for the positive impacts of frequent interaction between clinicians and staff, and what might these interactions entail? Studies from over two decades of implementation research suggest that implementation success is typically bolstered by having at least one clinician champion to promote the use of a decision support intervention (23,32,(38)(39)(40)(41)(42).…”

“…The critical role of clinician champions has also recently been highlighted by Berry et al (41), who found that designating a clinical lead for implementation helped to address staff misunderstandings about which contexts and resources were best suited for administering decisional support. Brinkman et al (42) likewise found that implementation was facilitated by buy-in from physicians about the value of SDM and formal training workshops for clinical staff implementing decision support. Further, a study by Uy et al (16) similarly identi ed physician support as "crucial" to the distribution success of patient decision supports.…”

“…Examples of how to effectively standardize or systematize implementation to promote use of a DA include systematically identifying eligible patients to receive decision support tools in advance of their clinical visits(32), offering referral or ordering options in a patient's electronic health record to ensure availability of a DA for patients to review ahead of their clinic visits (42), and having a DA readily accessible at a standardized place and time of decision making (23). Based on our results and experience, contextualized by these previous studies, we thus offer an additional concrete recommendation to standardize the time, place and process for administering decision support using checklists or "kits" to ensure their availability, salience and convenience for routine use, particularly in fast-paced, busy clinical settings.…”