Citations

Background: Adolescent patients with moderate to severe idiopathic scoliosis who have completed their skeletal growth face a significant choice in their treatment path: watchful waiting or spinal fusion. Shared decision making (SDM) assists patients and clinicians to find treatments that make intellectual, practical and emotional sense. Our objective was to develop a tool that supports SDM for patients with scoliosis and their families. Methods: We used a user-centered design approach that included collaboration between patients, surgeons and SDM experts, observation of clinician encounters, and literature review. We focused on adolescent idiopathic scoliosis patients 13 or more years of age with less than 1 year of growth remaining (Risser stage 3 or greater) and curves between 40 and 65 degrees. Results: We included 22 patients, and collected 22 video recordings. From these videos, we identified salient patient priorities for decision making including treatment benefits, surgical complications, pain, scheduling and recovery, and cost. For each theme, we conducted a focused review to obtain the best estimate of effect. Then, an expert SDM designer developed an electronic prototype called Scoliosis Choice. Conclusions: The initial prototype of the scoliosis SDM was finalized and is currently being field tested in clinic. Scoliosis Choice may help patients and surgeons better understand the potential risks and benefits of spinal fusion vs. observation for scoliosis treatment and improve validated measures of quality in patient-parent-surgeon communication.

Introduction: Current risk equations for coronary heart disease (CHD) do not take into account family history or cumulative exposure to LDL-C. We modified CHD risk equations for use in familial hypercholesterolemia (FH) patients and developed a decision aid (DA) for FH to facilitate shared decision making (SDM). Methods: Literature review, evidence synthesis and expert input were used to adapt the 30-year Framingham Risk Score (FRS) and 10-year ACC/AHA pooled cohort equations to calculate the CHD risk in individuals with FH aged 20-39 years and ≥40 years, respectively. Based on published data, estimated risk was multiplied by 2 for family history of early CHD or 3 in the presence of a pathogenic variant. Treatment benefit of lipid lowering was estimated based on the ‘cumulative exposure to LDL-C’ model ( JACC 2012; 60 ) using the following equations: Post-treatment 30-yr risk in those aged 20-39 years = Baseline Risk (FRS) x 0.54 delta LDL-C (mmol/L) Post-treatment 10-yr risk in those aged ≥40 years = Baseline Risk (ACC/AHA Pooled Cohort) x 0.72 delta LDL-C (mmol/L) To convey CHD risk and treatment benefit, we developed a DA using an iterative, patient-centered design process for use in FH encounters. Results: Using the DA, providers can discuss baseline CHD risk estimates, lipid lowering drug (LLD) options and the expected post-treatment risk reduction with FH patients. The estimated % LDL-C reduction for each LLD and the predicted risk reduction per mmol/L of LDL-C lowered were obtained from literature review. Lowering LDL-C by 1 mmol/L (39 mg/dL) was associated with a 28% CHD risk reduction over 10 years and a 46% reduction over 30 years ( Eur Heart J 2017; 38 ). We describe 2 examples of estimating CHD risk and treatment benefit in FH cases in Table 1 . Conclusion: We adapted CHD risk prediction equations to account for family history of CHD and presence of a pathogenic FH variant and designed a DA to convey personalized CHD risk estimates and treatment benefit to facilitate SDM with FH patients.

Objective Shared decision making (SDM) tools can help implement guideline recommendations for patients with atrial fibrillation (AF) considering stroke prevention strategies. We sought to characterize all available SDM tools for this purpose and examine their quality and clinical impact. Methods We searched through multiple bibliographic databases, social media, and an SDM tool repository from inception to May 2020 and contacted authors of identified SDM tools. Eligible tools had to offer information about warfarin and ≥1 direct oral anticoagulant. We extracted tool characteristics, assessed their adherence to the International Patient Decision Aids Standards, and obtained information about their efficacy in promoting SDM. Results We found 14 SDM tools. Most tools provided up-to-date information about the options, but very few included practical considerations (e.g., out-of-pocket cost). Five of these SDM tools, all used by patients prior to the encounter, were tested in trials at high risk of bias and were found to produce small improvements in patient knowledge and reductions in decisional conflict. Conclusion Several SDM tools for stroke prevention in AF are available, but whether they promote high-quality SDM is yet to be known. The implementation of guidelines for SDM in this context requires user-centered development and evaluation of SDM tools that can effectively promote high-quality SDM and improve stroke prevention in patients with AF.

Abstract Objective The overuse of antibiotics for acute otitis media (AOM) in children is a healthcare quality issue in part arising from conflicting parent and physician understanding of the risks and benefits of antibiotics for AOM. Our objective was to develop a conversation aid that supports shared decision making (SDM) with parents of children who are diagnosed with non-severe AOM in the acute care setting. Materials and Methods We developed a web-based encounter tool following a human-centered design approach that includes active collaboration with parents, clinicians, and designers using literature review, observations of clinical encounters, parental and clinician surveys, and interviews. Insights from these processes informed the iterative creation of prototypes that were reviewed and field-tested in patient encounters. Results The ear pain conversation aid includes five sections: (1) A home page that opens the discussion on the etiologies of AOM; (2) the various options available for AOM management; (3) a pictograph of the impact of antibiotic therapy on pain control; (4) a pictograph of complication rates with and without antibiotics; and (5) a summary page on management choices. This open-access, web-based tool is located at www.earpaindecisionaid.org. Conclusions We collaboratively developed an evidence-based conversation aid to facilitate SDM for AOM. This decision aid has the potential to improve parental medical knowledge of AOM, physician/parent communication, and possibly decrease the overuse of antibiotics for this condition.

Despite the evolving evidence in favor of shared decision making (SDM) and of decades-long calls for its adoption, SDM remains uncommon in routine care. Reflecting on this lack of progress, we sought to reimagine the future of SDM and the path to take us there. In late 2017, a multidisciplinary and international group of six researchers were challenged by a senior SDM scholar to envision the future and, based on a provocatively critical view of the present, to write letters to themselves from the year 2028. Letters were exchanged and discussed electronically. The group then met in person to discuss the letters. Since the letters painted a dystopian picture, they triggered questions about the nature of SDM, who should benefit from SDM, how to measure its contribution to care, and what new ways can be invented to design and test interventions to implement SDM in routine care. Through contrasting the purposefully generated dystopias with an ideal future for SDM, we generated reflections on a research agenda for SDM. These reflections hinged on recognizing SDM’s contributing to care, that is, as a way to advance the problematic human situation of patients. These focused on three distinct yet complimentary contributors to SDM: 1) the process of making decisions, 2) humanistic communication, and 3) fit-to-care of the resulting decision. The group then concluded that to move SDM from envisioned to routine practice, and to ensure it reaches all, particularly persons rendered vulnerable by current forms of health care, a substantial investment in implementation research is necessary. Perhaps the discussion of these reflections can contribute to a path forward that will improve the likelihood of the future we dream for SDM.

Goals: To develop an encounter decision aid [Barrett’s esophagus Choice (BE-Choice)] for patients and clinicians to engage in shared decision making (SDM) for management of BE with low-grade dysplasia (BE-LGD) and assess its impact on patient-important outcomes. Background: Currently, there are 2 strategies for management of BE-LGD—endoscopic surveillance and ablation. SDM can help patients decide on their preferred management option. Study: Phase-I: Patients and clinicians were engaged in a user-centered design approach to develop BE-Choice. Phase-I included review of evidence on BE-LGD management, observation of usual care (UC), creation, field-testing, and iterative development of BE-Choice in clinical settings. Phase-II: Impact of BE-Choice on patient-important outcomes (patient knowledge, decisional conflict, and patient involvement in decision making) was assessed using a controlled before-after study design (UC vs. BE-Choice). Results: Phase-I: Initial prototype was designed with observation of 8 clinical encounters. With field-testing, 3 successive iterations were made before finalizing BE-Choice. BE-Choice was paper based and fulfilled the qualifying criteria of International patient decision aid standards. Phase II: 29 patients were enrolled, 8 to UC and 21 to BE-Choice. Compared with UC, use of BE-Choice improved patient knowledge (90.4% vs. 70.5%; P =0.03), decisional comfort (89.6 vs. 71.9; P =0.01), and patient involvement (OPTION score: 27.1 vs. 19.2; P =0.01). Conclusions: BE-Choice is a feasible and effective decision aid to promote SDM in the management of BE-LGD. On pilot testing, BE-Choice had promising impact on patient-important outcomes. A larger multicenter trial is needed to confirm our results and promote widespread use of BE-Choice.