An environmental scan of tools that help individuals living with mild cognitive impairment or neurocognitive disorders (NCD) achieve their preferred health or well-being.

BACKGROUND AND OBJECTIVES: Older adults experiencing neurocognitive disease (NCD) contend with complex care often characterized by high emotional strain. Mitigating complex care with decision support tools can clarify options. When used in conjunction with the practice of Shared Decision Making (SDM) these tools can improve satisfaction and confidence in treatment. Use of these tools for cognitive health has increased but more is needed to understand how these tools incorporate social needs into treatment plans. RESEARCH DESIGN AND METHODS: We conducted an environmental scan using a MEDLINE informed search strategy and feedback from an expert steering committee to characterize current tools and approaches for engaging older adults experiencing NCD. We assessed their application and development, incorporation of social determinants, goals or preferences, and inclusion of caregivers in their design. RESULTS: We identified eleven articles, seven of which show that SDM helps guide tool development and that all tools center on clinical decision making. Types of tools varied by clinical site and those differences reflected patient need. A collective value across tools was their use to forge meaningful conversations. No tool appeared designed with the explicit goal to elicit patient social needs or incorporate non-clinical strategies into treatment plans. DISCUSSION AND IMPLICATIONS: Several challenges and opportunities that centered on strategies to engage patients in the design and testing of tools that support conversations with clinicians about cognitive health. Future work should focus on building and testing adaptable tools that support patient and family social care needs beyond clinical care settings.

An Active Model of Research Translation for the General Public: Content Analysis of a YouTube-Based Health Podcast.

BACKGROUND: Online health information seeking is changing the way people engage with health care and the health system. Recent changes in practices related to seeking, accessing, and disseminating scientific research, and in particular health information, have enabled a high level of user engagement. OBJECTIVE: This study aims to examine an innovative model of research translation, The Huberman Lab Podcast (HLP), developed by Andrew Huberman, Professor of Neurobiology and Ophthalmology at the Stanford School of Medicine. The HLP leverages social media to deliver health information translated into specific, actionable practices and health strategies directly to the general public. This research characterizes the HLP as an Active Model of Research Translation and assesses its potential as a framework for replicability and wider adoption. METHODS: We applied conventional content analysis of the YouTube transcript data and directed content analysis of viewers' YouTube comments to 23 HLP episodes released from January to October 2021, reflecting the time of data analysis. We selected 7 episodes and a welcome video, to describe and identify key characteristics of the HLP model. We analyzed viewer comments for 18 episodes to determine whether viewers found the HLP content valuable, accessible, and easy to implement. RESULTS: The key HLP features are direct-to-the-consumer, zero-cost, bilingual, and actionable content. We identified 3 main organizing categories and 10 subcategories as the key elements of the HLP: (1) Why: Educate and Empower and Bring Zero Cost to Consumer Information to the General Public; (2) What: Tools and Protocols; Underlying Mechanisms; and Grounded in Science; (3) How: Linear and Iterative Knowledge Building Process; Lecture-Style Sessions; Interactive and Consumer Informed; Easily Accessible; and Building the Community. Analysis of viewers' comments found strong consumer support for the key HLP model elements. CONCLUSIONS: This Active Model of Research Translation offers a way to synthesize scientific evidence and deliver it directly to end users in the form of actionable tools and education. Timely evidence translation using effective consumer engagement and education techniques appears to improve access and confidence related to health information use and reduces challenges to understanding and applying health information received from health providers. Framing complex content in an approachable manner, engaging the target audience, encouraging participation, and ensuring open access to the content meet current recommendations on innovative practices for leveraging social media or other digital platforms for disseminating science and research findings to the general public, and are likely key contributors to HLP impact and potential for success. The model offers a replicable framework for translating and disseminating scientific evidence. Similar active models of research translation can have implications for accessing health information and implementing health strategies for improved outcomes. Areas for further investigation are specific and measurable impacts on health, usability, and relevance of the model for reaching marginalized and high-risk populations.

Physicians' perspectives and attitudes toward surgical bailout in transcatheter aortic valve replacement.

Objectives: The incidence of surgical bailout during transcatheter aortic valve replacement (TAVR) is ∼1%, with an associated 50% in-hospital mortality. We performed an exploratory qualitative study of TAVR team perceptions regarding routine surgical bailout planning with patients. Methods: We developed a semistructed interview guide to explore clinician perspectives on the TAVR consent process, managing intraoperative emergencies, and involving patients in surgical contingency planning. We interviewed surgeons, cardiologists, and anesthesiologists involved with TAVR in 4 hospitals. We performed qualitative thematic analysis via independent coding of salient quotations from the transcribed texts. Codes were categorized based on shared meaning and the final themes were derived by identifying key content, and examining its relational nature. Results: Thirteen interviews were conducted, identifying 4 major themes. Participants agreed that eliciting patient preference for bailout is crucial, particularly when surgical outcome is ambiguous. In those cases, participants offered criteria for determining which patients should be engaged in a more nuanced discussion. The ethos of specialty clinicians impacted anticipation and response to procedural emergencies. Finally, physician attitudes reflected strong emotional responses to patient death/morbidity, particularly in iatrogenic injury. Participants expressed anxiety with performing TAVR without surgical backup, while also demonstrating willingness to respect patients' wishes. Conclusions: The TAVR team supports engaging patients regarding potential surgical bailout and honoring their preferences in the event of complication. However, clinical judgment about the expected outcome of bailout would frame that discussion. Participants described the emotional weight of not pursuing bailout if indicated and the importance of good coping mechanisms.

Achieving the potential of mHealth in medicine requires challenging the ethos of care delivery.

Mobile Health (mHealth) interventions have received a mix of praise and excitement, as well as caution and even opposition over recent decades. While the rapid adoption of mHealth solutions due to the COVID-19 pandemic has weakened resistance to integrating these digital approaches into practice and generated renewed interest, the increased reliance on mHealth signals a need for optimizing development and implementation. Despite an historically innovation-resistant medical ethos, mHealth is becoming a normalized supplement to clinical practice, highlighting increased demand. Reaching the full potential of mHealth requires new thinking and investment. The current challenge to broaden mHealth adoption and to ensure equity in access may be overcoming a "design purgatory," where innovation fails to connect to practice. We recommend leveraging the opportunity presented by the COVID-19 pandemic to disrupt routine practice and with a new focus on theory-driven replicability of mHealth tools and strategies aimed at medical education and professional organizations.

Shared decision making process measures and patient problems.

OBJECTIVES: Purposeful SDM posits four modes of shared decision making (SDM). The use of each mode depends on the type of problem of care that is being addressed. We sought to identify how current observer-based SDM measures apply to each mode of Purposeful SDM. METHODS: Four coders, working independently, evaluated 192 items pertaining to 12 observer-based SDM process measures. They classified the items into 6 themes that vary across Purposeful SDM modes and then into one of the four modes (weighing, negotiating, problem-solving, developing insight). Disagreements were resolved by consensus. RESULTS: The items were classified as pertaining to the following themes: problem (28), roles/participation (84), options (62), preferences (21), decision (15), and evaluation (6). They were then classified as pertaining particularly to the SDM modes of weighing (54), negotiating (5), problem-solving (0), and developing insight (0) modes, with 191 items applying broadly to all modes of Purposeful SDM. CONCLUSIONS: Observer-based SDM measures describe behaviors pertinent to all modes but lack items sensitive to behaviors particular to some modes of SDM. PRACTICE IMPLICATIONS: New or revised observer-based measures of the SDM process could help estimate the extent to which the appropriate SDM mode is being used to address the patient's problem.

Older Adults' Computer-Mediated Communication (CMC) Engagement Following COVID-19 and Its Impact on Access to Community, Information, and Resource Exchange: A Longitudinal, Qualitative Study.

Following COVID-19, the CDC asked individuals to social distance and state and local authorities nationwide began issuing curfews and recommendations to "shelter-in-place." Known to be more susceptible to the negative effects of COVID-19 and often coping with higher levels of social isolation, many worried that older adults' mental health would suffer. While computer-mediated communication (CMC) is on the rise among older adults, whether and how older adults leverage the social benefits of CMC remains underexplored. This study assesses older adults' CMC use after COVID and the impact of CMC engagement on access to connection, information, and resources. We follow 22 older adults over 6 weeks, using longitudinal qualitative surveys to study CMC use patterns and mental health outcomes. Results revealed that while older adults exhibited purpose-driven CMC engagement, limited integration into larger online communities restricted access to up-to-the-minute information, notably early in the pandemic. Longitudinal findings show progressively less engagement with online news and information, withdrawal from online social engagement, and a progressive relaxing of social distancing. This study sheds light on how best to reach older adults following disaster, and where older adults may be disadvantaged as social media becomes a modern "emergency broadcast system."

Social media as a modern Emergency Broadcast System: A longitudinal qualitative study of social media during COVID-19 and its impacts on social connection and social distancing compliance.

In the wake of COVID-19 social distancing recommendations, social media assumed a central - if unofficial - role in ensuring that individuals remained informed and connected throughout the pandemic. Yet while research shows that social media can be an effective platform for connecting individuals socially and fostering social support exchanges, both the platforms and the support exchanged therein have been mired in considerable controversies regarding their use as a tool for positive social engagement. The goal of this study is to qualitatively evaluate longitudinal changes to social media engagement during social distancing recommendations and orders to shelter-in-place. To do this, we collected longitudinal, qualitative survey data from a group of adults over the eight weeks during which most states had issued orders to shelter-in-place. We analyze data for evidence of social connection, stress reduction, and support exchange, and evaluate the impact of online social ties on staying informed and on compliance with CDC recommendations and shelter-in-place orders. Results showed a clear longitudinal evolution of users' online social engagement. Early use was characterized by agentic purposeful engagement, information sharing, and community resource mobilization. However, over time these patterns gave way to more passive use characterized by listlessness, contentiousness and misinformation as the pandemic wore on in weeks. As social media comes to occupy an increasingly important role in the exchange of information (and misinformation) this study has important implications for the health of users and the role of social media in future disasters, including how social media impacts both stress and health related behaviors.

Online Support Seeking and Breast Cancer Patients: Changes in Support Seeking Behavior following Diagnosis and Transition off Cancer Therapy.

Transitions in breast cancer care are associated with significant increases in stress and anxiety, and this stress can negatively impact mental and physical health. Social support has been shown to alleviate such distress, but whether, how, and how often social support is accessed through existing support networks is unclear. Our study examines changes in social media use following breast cancer diagnosis and treatment, using hand-coded longitudinal data from 30 breast cancer survivors' Facebook pages for the 6 months surrounding cancer diagnosis and for the 6 months surrounding transition off cancer therapy. Results revealed that following diagnosis, there was a significant increase in posting behavior and self-disclosure. However, this increase in posts did not correspond to an increase in support requests. In addition, while participants' primary support requests were for resources, support provided tended to be lower-cost emotional support. Finally, temporal maps indicated that participants started off increasing their engagement but withdrew over time. Our findings suggest that Facebook offered participants a platform for continued social engagement and self-disclosure - but showed several indications that support was principally low-effort, limited quality, and ill-fitting.

The Learning Curve for Shared Decision-making in Symptomatic Aortic Stenosis.

Importance: Shared decision-making (SDM) is widely advocated for patients with valvular heart disease yet is not integrated into the heart team model for patients with symptomatic aortic stenosis. Decision aids (DAs) have been shown to improve patient-centered outcomes and may facilitate SDM. Objective: To determine whether the repeated use of a DA by heart teams is associated with greater SDM, along with improved patient-centered outcomes and clinician attitudes about DAs. Design, Setting, and Participants: This mixed-methods study included a nonrandomized pre-post intervention and clinician interviews. It was conducted between April 30, 2015, and December 7, 2017, with quantitative analysis performed between January 12, 2017, and May 26, 2017, within 2 academic medical centers in northern New England among 35 patients with symptomatic aortic stenosis who were at high to prohibitive risk for surgery. The qualitative analysis was performed between August 6, 2018, and May 7, 2019. The Severe Aortic Stenosis Decision Aid was delivered by 6 clinicians, with patients choosing between transcatheter aortic valve replacement and medical management. Main Outcomes and Measures: Clinician SDM performance was measured using the Observer OPTION5 scale with dual-independent coding of audiotaped clinic visits. Previsit and postvisit surveys measured the patient's knowledge, satisfaction, and decisional conflict. Audiotaped clinician interviews were coded, and qualitative thematic analysis was performed. Results: Six male clinicians and 35 patients (19 of 34 women [55.9%; 1 survey was missing]; mean [SD] age, 85.8 [7.8] years) participated in the study. Shared decision-making increased stepwise with repeated use of the DA (mean [SD] Observer OPTION5 scores: usual care, 17.9 [7.6]; first use of a DA, 60.5 [30.9]; fifth use of a DA, 79.0 [8.4]; P < .001 for comparison between usual care and fifth use of DA). Multiple uses of the DA were associated with increased patient knowledge (mean difference, 18.0%; 95% CI, 1.2%-34.8%; P = .04) and satisfaction (mean difference, 6.7%; 95% CI, 2.5%-10.8%; P = .01) but not decisional conflict (mean [SD]: usual care, 96.0% [9.4%]; first use of DA, 93.8% [12.5%]; fifth use of DA, 95.0% [11.2%]; P = .60). Qualitative analysis of clinicians' interviews revealed that clinicians perceived that they used an SDM approach without DAs and that the DA was not well understood by elderly patients. There was infrequent values clarification or discussion of stroke risk. Conclusion and Relevance: In a mixed-methods pilot study, use of a DA for severe aortic stenosis by heart team clinicians was associated with improved SDM and patient-centered outcomes. However, in qualitative interviews, heart team clinicians did not perceive a significant benefit of the DA, and therefore sustained implementation is unlikely. This pilot study of SDM clarifies new research directions for heart teams.

Codifying Online Social Support for Breast Cancer Patients: Retrospective Qualitative Assessment.

BACKGROUND: Social media has emerged as the epicenter for exchanging health-related information, resources, and emotional support. However, despite recognized benefits of social media for advancing health-promoting support exchange, researchers have struggled to differentiate between the different ways social support occurs and is expressed through social media. OBJECTIVE: The objective of this study was to develop a fuller understanding of social support exchange by examining the ways in which breast cancer patients discuss their health needs and reach out for support on Facebook and to develop a coding schema that can be useful to other social media researchers. METHODS: We conducted a retrospective qualitative assessment of text-based social support exchanges through Facebook among 30 breast cancer survivors. Facebook wall data were systematically scraped, organized, coded, and characterized by whether and which types of support were exchanged. Research questions focused on how often participants posted related to cancer, how often cancer patients reached out for support, and the relative frequency of informational, instrumental, or socioemotional support requests broadcast by patients on the site. RESULTS: A novel ground-up coding schema applied to unwieldy Facebook data successfully identified social support exchange in two critical transitions in cancer treatment: diagnosis and transition off cancer therapy. Explanatory coding, design, and analysis processes led to a novel coding schema informed by 100,000 lines of data, an a priori literature review, and observed online social support exchanges. A final coding schema permits a compelling analysis of support exchange as a type of peer community, where members act proactively to buffer stress effects associated with negative health experiences. The coding schema framed operational definitions of what support meant and the forms each type of support could take in social media spaces. CONCLUSIONS: Given the importance of social media in social interaction, support exchange, and health promotion, our findings provide insight and clarity for researchers into the different forms informational, resource, and emotional support may take in Web-based social environments. Findings support broader continuity for evaluating computer-mediated support exchange.

Building Better Clinical Relationships With Patients: An Argument for Digital Health Solutions With Black Men.

There is a rapid evolution of care delivery taking place across the globe in response to an explosion of novel health technologies. Growing in parallel to this expansion is the anticipation of mHealth technologies to drive patient-centered care into the future. Despite this hope, continuing reports of health inequities and lived experiences of substandard care fill national, state, and community health reports. The impact of these inequities is particularly pernicious on Black men and their long-term health status. As decades of robust evidence substantiates needed interventions, current progress is not seeing expected gains. In this commentary, we argue that at the heart of these inequities are issues of access, health literacy, institutional racism, and growing social distance between clinicians and Black men. To address these inequities, we suggest that digital interventions, designed to support decision-making, information exchange, and shared accountability have the best hope to overcome current inequities by promoting authentic relationships that ultimately drive better communication between Black men and their clinicians.

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

BACKGROUND: Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies. OBJECTIVE: This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams. METHODS: Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis. RESULTS: We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into illness experiences, and (4) readiness to engage appears critical for clinic implementation. CONCLUSIONS: A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.

Are Older Adults Willing to Consider New Strategies to Reduce Stroke Risk?

Atrial fibrillation (AF) is a common arrhythmia that increases patients' risk of stroke, and determining an optimal prevention therapy is a preference-sensitive decision appropriate for shared decision making (SDM). Utilizing community-based focus groups, we explored beliefs and values around options for stroke prevention. Interview transcripts from five independent focus groups were qualitatively assessed and organized into themes. Most participants were taking a blood thinner (93%) and more than half of participants (64%) reported having AF. Few participants were familiar with newer therapies. Qualitative analysis revealed three themes: (a) fearing loss of self-control through debilitating stroke, (b) recognizing uncertainty in how to weigh risks and benefits of new treatments, and (c) needing mutual respect between clinicians and patients to consider new/alternative treatment regimens. These findings help direct future research efforts examining optimal timing for SDM and decision aids to promote mutual respect.

Too Important to Ignore: Leveraging Digital Technology to Improve Chronic Illness Management Among Black Men.

Health disparities associated with chronic illness experiences of black men demonstrate widespread, systematic failures to meet an urgent need. Well-established social and behavioral determinants that have led to health disparities among black men include racism, discrimination, and stress. While advocacy work that includes community-engagement and tailoring health promotion strategies have shown local impact, evidence shows the gaps are increasing. We suspect that failure to reduce current disparities may be due to conventional public health interventions and programs; therefore, we submit that innovative interventions, ones that embrace digital technologies and their ability to harness naturally occurring social networks within groups, like black men, have particular importance and deserve attention. This commentary characterizes the current literature on chronic illness among black men as well as health interventions that use digital technology, to build a case for expanding research in this area to reduce the overwhelming burden of chronic illness among black men.

Availability of patient decision aids for stroke prevention in atrial fibrillation: A systematic review.

BACKGROUND: Atrial fibrillation is a common irregular heart rhythm that increases patients' risk of stroke. Aspirin, warfarin, direct oral anticoagulants, and an implantable device can reduce this risk. Given the availability of multiple comparable options, this decision depends on patient preferences and is appropriate for the use of decision aids and other efforts to promote shared decision making. The objective of this review was to examine the existence and accessibility of, as well as select outcomes associated with, published, formally evaluated patient decision aids for stroke prevention in atrial fibrillation. METHODS: Six databases were searched from inception to March 2016 with a research librarian. Two authors independently reviewed potential articles, selected trials meeting inclusion criteria, and assessed outcome measures. Outcomes included patient knowledge, involvement, choice, and decisional conflict. RESULTS: The search resulted in 666 articles; most were excluded for not examining stroke prevention in atrial fibrillation and 7 studies were eventually included. Six decision aids displayed combinations of aspirin, warfarin, or no therapy; 1 included a direct oral anticoagulant. Interventions were associated with increased patient knowledge, increased likelihood of making a choice, and low decisional conflict. Use of decision aids in this review was associated with less selection of warfarin. None of the tested decision aids are currently available. DISCUSSION: Published patient decision aids for stroke prevention in atrial fibrillation are not accessible for clinical use. Given the availability of multiple comparable options, there is a need to develop and test new patient decision aids in this context.

PCI Choice: Cardiovascular clinicians' perceptions of shared decision making in stable coronary artery disease.

OBJECTIVE: Describe cardiovascular clinicians' perceptions of Shared Decision Making following use of a decision aid (DA) for stable coronary artery disease (CAD) "PCI Choice", in a randomized controlled trial. METHODS: We conducted a semi-structured qualitative interview study with cardiologists and physician extenders (n=13) after using PCI Choice in practice. Interviews were transcribed then coded. Codes were organized into salient themes. Final themes were determined by consensus with all authors. RESULTS: Most clinicians (70%) had no prior knowledge of SDM or DAs. Mixed views about the role of the DA in the visit were related to misconceptions of how patient education differed from SDM. Qualitative assessment of clinician perceptions generated three themes: 1) Gaps exist in clinician knowledge around SDM; 2) Clinicians are often uncomfortable with modifying baseline practice; and 3) Clinicians express interest in using DAs after initial exposure within a research setting. CONCLUSIONS: Use of DAs by clinicians during clinic visits may improve understanding of SDM. Initial use is marked by a reluctance to modify established practice patterns. PRACTICE IMPLICATIONS: As clinicians explore new approaches to benefit their patients, there is an opportunity for DAs that provide clinician instruction on core elements of SDM to lead to enhanced SDM in clinical practice.

A digital advocate? Reactions of rural people who experience homelessness to the idea of recording clinical encounters.

BACKGROUND: Are the benefits of recording clinical encounters shared across different groups, or do they vary based on social position? Studies show that educated patients record their clinical visits to enhance their experience, but very little is known about recording benefits among "hard-to-reach" populations. OBJECTIVE: To examine the reactions of homeless people to the idea of using a smartphone to record their own clinical encounter, either covertly or with permission from their physician. METHOD: We conducted semi-structured interviews with individuals at a temporary housing shelter in Northern New England. A thematic analysis identified themes that were iteratively refined into representative groups. RESULTS: Eighteen (18) interviews were conducted, 12 with women and six with men. Initial reactions to clinical recordings were positive (11 of 18). A majority (17 of 18) were willing to use recordings in future visits. A thematic analysis characterized data in two ways: (i) by providing reliable evidence for review, they functioned as an advocacy measure for patients; (ii) by promoting transparency and levelling social distance, this technology modified clinical relationships. DISCUSSION: Recordings permitted the sharing of data with others, providing tangible proof of behaviour and refuting misconceptions. Asking permission to record appeared to modify relationships and level perceived social distance with clinicians. CONCLUSIONS: We found that while many rural, disadvantaged individuals felt marginalized by the wide social distance between themselves and their clinicians, recording technology may serve as an advocate by holding both patients and doctors accountable and by permitting the burden of clinical proof to be shared.

Comparing the ability of OPTION(12) and OPTION(5) to assess shared decision-making in genetic counselling.

OBJECTIVES: OPTION(12) is the most widely used tool to measure shared decision-making (SDM) in health care. A newer scale, OPTION(5), has been proposed as a more parsimonious measure that better addresses core concepts of SDM. This study compares OPTION(5) to OPTION(12) in prenatal genetic counselling. METHODS: Two raters independently used OPTION(12) and OPTION(5) to score 27 clinical encounters between genetic counsellors (GC) and women with pregnancies at increased risk for genetic conditions. Global and item scores on the two instruments were compared to test concurrent validity and to identify usability in this context. Inter-rater reliability was also assessed for both instruments. RESULTS: Mean scores for OPTION(12) were 43.8 (SD=9.7), and for OPTION(5) were=60.6 (SD=12.5). The correlation between OPTION(12) and OPTION(5) scores was r=0.70. Inter-rater reliability was 0.70 and 0.85 for OPTION(12) and OPTION(5) respectively, however mean inter-rater reliability for individual items was 0.31 and 0.63 for OPTION(12) and OPTION(5) respectively. CONCLUSIONS: GCs exhibit SDM as measured by both OPTION instruments. OPTION(5) exhibits improved psychometric performance relative to OPTION(12), and more specifically targets the core constructs of SDM. However, refinement of OPTION instruments or manuals is needed to improve reliability and validity in GC assessment.

'Much clearer with pictures': using community-based participatory research to design and test a Picture Option Grid for underserved patients with breast cancer.

OBJECTIVE: Women of low socioeconomic status (SES) diagnosed with early stage breast cancer experience decision-making, treatment and outcome disparities. Evidence suggests that decision aids can benefit underserved patients, when tailored to their needs. Our aim was to develop and test the usability, acceptability and accessibility of a pictorial encounter decision aid targeted at women of low SES diagnosed with early stage breast cancer. DESIGN: Community-based participatory research (CBPR) using think-aloud protocols (phases 1 and 2) and semistructured interviews (phase 3). SETTING: Underserved community settings (eg, knitting groups, bingo halls, senior centres) and breast clinics. PARTICIPANTS: In phase 1, we recruited a convenience sample of clinicians and academics. In phase 2, we targeted women over 40 years of age, of low SES, regardless of breast cancer history, and in phase 3, women of low SES, recently diagnosed with breast cancer. INTERVENTION: The pictorial encounter decision aid was derived from an evidence-based table comparing treatment options for breast cancer (http://www.optiongrid.org). OUTCOME MEASURES: We assessed the usability, acceptability and accessibility of the pictorial decision aid prototypes using the think-aloud protocol and semistructured interviews. RESULTS: After initial testing of the first prototype with 18 academics and health professionals, new versions were developed and tested with 53 lay individuals in community settings. Usability was high. In response to feedback indicating that the use of cartoon characters was considered insensitive, a picture-only version was developed and tested with 23 lay people in phase 2, and 10 target users in phase 3. CONCLUSIONS AND RELEVANCE: Using CBPR methods and iterative user testing cycles improved usability and accessibility, and led to the development of the Picture Option Grid, entirely guided by multiple stakeholder feedback. All women of low SES recently diagnosed with early stage breast cancer found the Picture Option Grid usable, acceptable and accessible.

Using Option Grids: steps toward shared decision-making for neonatal circumcision.

OBJECTIVES: To assess the impact, acceptability and feasibility of a short encounter tool designed to enhance the process of shared decision-making and parental engagement. METHODS: We analyzed video-recordings of clinical encounters, half undertaken before and half after a brief intervention that trained four clinicians how to use Option Grids, using an observer-based measure of shared decision-making. We also analyzed semi-structured interviews conducted with the clinicians four weeks after their exposure to the intervention. RESULTS: Observer OPTION(5) scores were higher at post-intervention, with a mean of 33.9 (SD=23.5) compared to a mean of 16.1 (SD=7.1) for pre-intervention, a significant difference of 17.8 (95% CI: 2.4, 33.2). Prior to using the intervention, clinicians used a consent document to frame circumcision as a default practice. Encounters with the Option Grid conferred agency to both parents and clinicians, and facilitated shared decision-making. Clinician reported recognizing the tool's positive effect on their communication process. CONCLUSIONS: Tools such as Option Grids have the potential to make it easier for clinicians to achieve shared decision-making. PRACTICE IMPLICATIONS: Encounter tools have the potential to change practice. More research is needed to test their feasibility in routine practice.