Background Shared decision making (SDM) is a patient-centered approach in which clinicians and patients work together to find and choose the best course of action for each patient’s particular situation. Six SDM key elements can be identified: situation diagnosis, choice awareness, option clarification, discussion of harms and benefits, deliberation of patient preferences, and making the decision. The International Patient Decision Aid Standards (IPDAS) require that a decision aid (DA) support these key elements. Yet, the extent to which DAs support these six key SDM elements and how this relates to their impact remain unknown. Methods We searched bibliographic databases (from inception until November 2017), reference lists of included studies, trial registries, and experts for randomized controlled trials of DAs in patients with cardiovascular, or chronic respiratory conditions or diabetes. Reviewers worked in duplicate and independently selected studies for inclusion, extracted trial, and DA characteristics, and evaluated the quality of each trial. Results DAs most commonly clarified options (20 of 20; 100%) and discussed their harms and benefits (18 of 20; 90%; unclear in two DAs); all six elements were clearly supported in 4 DAs (20%). We found no association between the presence of these elements and SDM outcomes. Conclusions DAs for selected chronic conditions are mostly designed to transfer information about options and their harms and benefits. The extent to which their support of SDM key elements relates to their impact on SDM outcomes could not be ascertained. Systematic review registration PROSPERO registration number: CRD42016050320 . Electronic supplementary material The online version of this article (10.1186/s13643-019-1034-4) contains supplementary material, which is available to authorized users.

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Objectives: Research indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU. Design: Qualitative study using semistructured interviews with ICU physicians, nurses, and interpreters. Setting: Three ICUs at Mayo Clinic Rochester. Subjects: Sixteen ICU physicians, 12 ICU nurses, and 12 interpreters. Intervention: None. Measurements and Main Results: We conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility. Conclusions: End-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.

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.

Objective: To determine how shared decision-making (SDM) tools used during clinical encounters that raise cost as an issue impact the incidence of cost conversations between patients and clinicians. Patients and Methods: A randomly selected set of 220 video recordings of clinical encounters were analyzed. Videos were obtained from eight practice-based randomized clinical trials and one quasirandomized clinical trial (pre-and post-) comparing care with and without SDM tools. The secondary analysis took place in 2018 from trials ran between 2007 and 2015. Results: Most patient participants were white (85%), educated (38% completed college), middle-aged (mean age 56 years), and female (61%). There were 105 encounters with and 115 without the SDM tool. Encounters with SDM tools were more likely to include both general cost conversations (62% vs 36%, odds ratio [OR]: 9.6; 95% CI: 4 to 26) as well as conversations on medication costs specifically (89% vs 51%, P¼.01). However, clinicians using SDM tools were less likely to address cost issues during the encounter (37% vs 51%, P¼.04). Encounters with patients with less than a college degree were also associated with a higher incidence of cost conversations. Conclusion: Using SDM tools that raise cost as an issue increased the occurrence of cost conversations but was less likely to address cost issues or offer potential solutions to patients' cost concerns. This result suggests that SDM tools used during the consultation can trigger cost conversations but are insufficient to support them.

Decision aids (DA) are evidence-based tools that support shared decision-making (SDM) implementation in practice; this study aimed to identify existing osteoporosis DAs and assess their quality and efficacy; and to gain feedback from a patient advisory group on findings and implications for further research. MethodsWe searched multiple bibliographic databases to identify research studies from 2000 to 2019 and undertook an environmental scan (search conducted February 2019, repeated in March 2020). A pair of reviewers, working independently selected studies for inclusion, extracted data, evaluated each trial's risk of bias, and conducted DA quality assessment using the International Patient Decision Aid Standards (IPDAS). Public contributors (patients and caregivers with experience of osteoporosis and fragility fractures) participated in discussion groups to review a sample of DAs, express preferences for a new DA and discuss plans for development of a new DA. ResultsWe identified 6 studies, with high or unclear risk of bias. Across included studies, use of an osteoporosis DA was reported to result in reduced decisional conflict compared with baseline, increased SDM and increased accuracy of patients' perceived fracture risk compared with controls.Eleven DAs were identified, of which none met the full set of IPDAS criteria for certification for minimization of bias. Public contributors expressed preferences for encounter DAs that are individualized to patients' own needs and risk. ConclusionsExisting DAs for informing patient decisions about osteoporosis treatment fail to comprehensively meet international quality standards and patient needs, underpinning the need for new DA development.

Background and objectives: It is unclear why many patients with hypothyroidism prefer the use of desiccated thyroid extract (DTE) as a thyroid hormone replacement formulation over levothyroxine (LT4) treatment, as recommended by clinical practice guidelines. We analyzed patient-reported information from patient online forums to better understand patient preferences for and attitudes toward the use of DTE to treat hypothyroidism. Materials and Methods: We conducted a mixed-methods study by evaluating the content of online posts from three popular hypothyroidism forums from patients currently taking DTE (n = 673). From these posts, we extracted descriptive information on patient demographics and clinical characteristics and qualitatively analyzed posts’ content to explore patient perceptions on DTE and other therapies further. Results: Nearly half (46%) of the patients reported that a clinician initially drove their interest in trying DTE. Patients described many reasons for switching from a previous therapeutic approach to DTE, including lack of improvement in hypothyroidism-related symptoms (58%) and the development of side effects (22%). The majority of patients described DTE as moderately to majorly effective overall (81%) and more effective than the previous therapy (77%). The most frequently described benefits associated with DTE use were an improvement in symptoms (56%) and a change in overall well-being (34%). One-fifth of patients described side effects related to the use of DTE. Qualitative analysis of posts’ content supported these findings and raised additional issues around the need for individualizing therapy approaches for hypothyroidism (e.g., a sense of each patient has different needs), as well as difficulties obtaining DTE (e.g., issues with pharmacy availability). Conclusions: Lack of individualized treatment and a feeling of not been listened to were recurrent themes among DTE users. A subset of patients may prefer DTE to LT4 for many reasons, including perceived better effectiveness and improved overall well-being, despite the risks associated with DTE.