Fraenkel, Liana

ObjectiveNumerous factors can impede or facilitate patients’ medication decision‐making and adherence to physicians’ recommendations. Little is known about how patients and physicians jointly view issues that affect the decision‐making process. Our objective was to derive an empirical framework of patient‐identified facilitators to lupus medication decision‐making from key stakeholders (including 15 physicians, 5 patients/patient advocates, and 8 medical professionals) using a patient‐centered cognitive mapping approach.MethodsWe used nominal group patient panels to identify facilitators to lupus treatment decision‐making. Stakeholders independently sorted the identified facilitators (n = 98) based on their similarities and rated the importance of each facilitator in patient decision‐making. Data were analyzed using multidimensional scaling and hierarchical cluster analysis.ResultsA cognitive map was derived that represents an empirical framework of facilitators for lupus treatment decisions from multiple stakeholders’ perspectives. The facilitator clusters were 1) hope for a normal/healthy life, 2) understand benefits and effectiveness of taking medications, 3) desire to minimize side effects, 4) medication‐related data, 5) medication effectiveness for “me,” 6) family focus, 7) confidence in physician, 8) medication research, 9) reassurance about medication, and 10) medication economics.ConclusionConsideration of how different stakeholders perceive the relative importance of lupus medication decision‐making clusters is an important step toward improving patient‐physician communication and effective shared decision‐making. The empirically derived framework of medication decision‐making facilitators can be used as a guide to develop a lupus decision aid that focuses on improving physician‐patient communication.

ObjectiveHow best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients’ recommendations to ones developed by a physician‐dominated voting panel on the same clinical questions.MethodsTen patients with rheumatoid arthritis completed 8 hours of training on evidence‐based medicine and guideline development. They constituted a voting panel and, with 2 American College of Rheumatology staff with expertise in CPG development and a physician facilitator, subsequently met at a face‐to‐face meeting to develop recommendations. They applied the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations on 18 questions for which there was evidence warranting moderate or high confidence.ResultsThe patient panel developed recommendations for 16 of the 18 questions; for the other 2, the panel thought there were insufficient data to support a recommendation. For 13 of the 16 questions, the patient panel recommended the same course of action as did the physician‐dominated panel. Differences were due to how the 2 panels valued the balance between benefits and harms.ConclusionPatient and physician‐dominated panels developed the same recommendations for most questions for which there was evidence warranting moderate to high confidence. Additional experiences are necessary to advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines.