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Background Gender-affirming surgical procedures, such as metoidioplasty and phalloplasty for those assigned female at birth, are complex and multistaged and involve risks. Individuals considering these procedures experience greater uncertainty or decisional conflict, compounded by difficulty finding trustworthy information. Aim (1) To explore the factors contributing to decisional uncertainty and the needs of individuals considering metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) and (2) to inform development of a patient-centered decision aid. Methods This cross-sectional study was based on mixed methods. Adult transgender men and nonbinary individuals assigned female at birth at various stages of MaPGAS decision making were recruited from 2 study sites in the United States to participate in semistructured interviews and an online gender health survey, which included measures of gender congruence, decisional conflict, urinary health, and quality of life. Trained qualitative researchers conducted all interviews with questions to explore constructs from the Ottawa decision support framework. Outcomes Outcomes included goals and priorities for MaPGAS, expectations, knowledge, and decisional needs, as well as variations in decisional conflict by surgical preference, surgical status, and sociodemographic variables. Results We interviewed 26 participants and collected survey data from 39 (24 interviewees, 92%) at various stages of MaPGAS decision making. In surveys and interviews, affirmation of gender identity, standing to urinate, sensation, and the ability to “pass” as male emerged as highly important factors for deciding to undergo MaPGAS. A third of survey respondents reported decisional conflict. Triangulation of data from all sources revealed that conflict emerged most when trying to balance the strong desire to resolve gender dysphoria through surgical transition against the risks and unknowns in urinary and sexual function, appearance, and preservation of sensation post-MaPGAS. Insurance coverage, age, access to surgeons, and health concerns further influenced surgery preferences and timing. Clinical Implications The findings add to the understanding of decisional needs and priorities of those considering MaPGAS while revealing new complexities among knowledge, personal factors, and decisional uncertainty. Strengths and Limitations This mixed methods study was codeveloped by members of the transgender and nonbinary community and yielded important guidance for providers and individuals considering MaPGAS. The results provide rich qualitative insights for MaPGAS decision making in US contexts. Limitations include low diversity and sample size; both are being addressed in work underway. Conclusions This study increases understanding of the factors important to MaPGAS decision making, and results are being used to guide development of a patient-centered surgical decision aid and informed survey revision for national distribution.

Objective Our aim was to use critical discourse analysis (CDA) to examine the most widely cited definitions of shared decision making so that we can evaluate how language is used to position participants. Based on our conceptual understanding, we presumed that shared decision making involves acts of communication where processes are collaborative. Methods We used a CDA lens to closely examine the phrases, semantics, syntax, implied functions, and the social actions proposed in SDM definition texts. We conducted a systematic search guided by the PRISMA guidelines, to identify the most widely cited definitions of SDM. Results A total of 72 studies met our inclusion criteria. While SDM is not consistently defined, it was striking to find that clinicians are constructed as active whereas patients were viewed to be passive participants. The definitions construct SDM to be a gift that the clinician has the power to offer, and the relationship in the definitions appears asymmetric, in which only one party seems to speak. Conclusions The SDM definitions examined convey a process characterized by a clinician who speaks, while a patient mostly listens, and is invited to contribute. An alternative definition might be constructed through references to joint activity via sentences in active voice. Practice implications Clinicians may be influenced by definitions of SDM that reinforce the positionality of active speaker versus passive recipient. Clearer definitions that address the constructs of power and roles may help support the implementation of SDM.

Shared decision making (SDM) is defined as an approach in which clinicians and patients share the best available evidence when faced with the task of making decisions, and in which patients are supported to consider options to achieve informed preferences [1]. Over the past decade, SDM has been increasingly recognized as a component of value-based care in the US. There is greater acceptance overall that SDM is a key strategy for achieving patient-centered care, enhancing patient safety, and achieving the triple aim of better health, better care, and lower costs [2]. Essential elements of SDM include recognizing and acknowledging that a decision is required; knowing and understanding the best available evidence on risks and benefits; and incorporating the patient's values and preferences into the decision [3]. This paper provides an update of our previous review of SDM in the US published in 2017. We describe changes in healthcare policies to support SDM at the federal and state levels, the integration of SDM into clinical practice, and the role of implementation science to advance SDM. Finally, we discuss potential next steps to inform policies for SDM and facilitate uptake of SDM in clinical practice.

There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions. The questions were administered to patients with rheumatic disease, and patients with inflammatory bowel disease (IBD). Paper-based responses from 150 patients with rheumatic disease and 338 patients with IBD were analyzed (163 paper, 175 electronic). The goals and concerns elicited were primarily disease or symptom-specific. The specific goal and concern examples featured in one pre-visit question were more commonly reported in responses to that question, compared to the question without examples. Questions completed electronically before the visit were associated with longer responses than those completed on paper in the waiting room. In conclusion, how and when patients’ goals and concerns are elicited appears to have an impact on responses and warrants further investigation.

Lay Summary Health confidence—an individual’s belief in their ability and agency to affect disease outcomes—has bidirectional temporal correlations with inflammatory bowel disease activity. Low health confidence is associated with higher risks for future disease activity, and inflammatory bowel disease flares erode confidence.

Background Co-production of health is defined as ‘the interdependent work of users and professionals who are creating, designing, producing, delivering, assessing, and evaluating the relationships and actions that contribute to the health of individuals and populations’. It can assume many forms and include multiple stakeholders in pursuit of continuous improvement, as in Learning Health Systems (LHSs). There is increasing interest in how the LHS concept allows integration of different knowledge domains to support and achieve better health. Even if definitions of LHSs include engaging users and their family as active participants in aspects of enabling better health for individuals and populations, LHS descriptions emphasize technological solutions, such as the use of information systems. Fewer LHS texts address how interpersonal interactions contribute to the design and improvement of healthcare services. Objective We examined the literature on LHS to clarify the role and contributions of co-production in LHS conceptualizations and applications. Method First, we undertook a scoping review of LHS conceptualizations. Second, we compared those conceptualizations to the characteristics of LHSs first described by the US Institute of Medicine. Third, we examined the LHS conceptualizations to assess how they bring four types of value co-creation in public services into play: co-production, co-design, co-construction and co-innovation. These were used to describe core ideas, as principles, to guide development. Result Among 17 identified LHS conceptualizations, 3 qualified as most comprehensive regarding fidelity to LHS characteristics and their use in multiple settings: (i) the Cincinnati Collaborative LHS Model, (ii) the Dartmouth Coproduction LHS Model and (iii) the Michigan Learning Cycle Model. These conceptualizations exhibit all four types of value co-creation, provide examples of how LHSs can harness co-production and are used to identify principles that can enhance value co-creation: (i) use a shared aim, (ii) navigate towards improved outcomes, (iii) tailor feedback with and for users, (iv) distribute leadership, (v) facilitate interactions, (vi) co-design services and (vii) support self-organization. Conclusions The LHS conceptualizations have common features and harness co-production to generate value for individual patients as well as for health systems. They facilitate learning and improvement by integrating supportive technologies into the sociotechnical systems that make up healthcare. Further research on LHS applications in real-world complex settings is needed to unpack how LHSs are grown through coproduction and other types of value co-creation.

Background Among musculoskeletal disorders, lumbar degenerative disease (LDD) is the leading cause of total disability-adjusted life years globally. Clinical guidelines for LDD describe multiple treatment options in which shared decision making becomes appropriate. Objectives To explore the relationships among measures of decision antecedents, process, and outcomes in patients with LDD. Methods Patients with LDD were recruited from outpatient clinics in a teaching hospital in Taiwan and administered surveys to collect measures of decision antecedents, processes, and outcomes. Multiple linear regression was conducted to assess the association between decision antecedents and the decision making process. Hierarchical linear regression was conducted to assess the relationships among decision antecedents, the decision making process, and decision outcomes. Results A total of 132 patients (mean age, 61 years) completed the survey. After adjustment for personal factors, 2 decision antecedents (namely, decision making self-efficacy and readiness) significantly predicted patients’ experiences of engaging in shared decision making (SDM). Decision making readiness and process were associated with fewer decisional conflicts and greater decision satisfaction. Limitations Models derived from cross-sectional surveys cannot establish causal relationships among decision antecedents, decision making processes, and decision outcomes. Conclusions Our results support the SDM framework, which proposes relationships among decision antecedents, the decision making process, and decision outcomes.

Objectives Develop and pilot implantable cardioverter-defibrillator (ICD) decision aids (DAs) for patients considering primary prevention ICDs. Background Using DAs for preference-sensitive decisions is an evidence-based way to improve patient-centered decisions. Reimbursement mandates have increased the need for DAs in ICD care, although none have been formally evaluated. Methods Development Phase: An expert panel, including patients and physicians, iteratively developed four DAs: a one-page Option GridTM conversation aid, a four-page in-depth paper tool, a 17-minute video, and an interactive website. Trial phase At three sites, patients with heart failure who were eligible for primary prevention ICDs were randomly assigned 2:1 to intervention (received DAs) or control (usual care). We conducted a mixed-methods evaluation exploring acceptability and feasibility. Results Twenty-one eligible patients enrolled (fifteen intervention). Most intervention participants found the DAs to be unbiased (67%), helpful (89%), and would recommend them to others (100%). The pilot was feasible at all sites; however, using clinic staff to identify eligible patients was more efficient than chart review. Although the main goals were to measure acceptability and feasibility, intervention participants trended towards increased concordance between longevity values and ICD decisions (71% concordant vs. 29%, p = 0.06). Participants preferred the in-depth paper tool and video DAs. Access to a nurse during the decision-making window encouraged questions and improved participant-perceived confidence. Conclusions Participants felt the DAs provided helpful, balanced information that they would recommend to other patients. Further exploration of this larger context of DA use and strategies to promote independent use related to electrophysiology visits are needed. This article is protected by copyright. All rights reserved.

Objective: Is the level of shared decision-making (SDM) higher after introduction of a SDM package (including encounter decision aids on treatment options for heavy menstrual bleeding and training for clinicians) than before?. Methods: This before-after study, performed in OB-GYN practice, compared consultations before and after introduction of a SDM package. The target sample size was 25 patients per group. Women seeking treatment for heavy menstrual bleeding were eligible. After their appointments, patients filled out a three-item patient-reported SDM measure. Treatment discussions were audio-recorded and rated for SDM using Observer OPTION 5. Consultation transcripts in the ‘after’ group were checked for adherence to the steps required for intended use of decision aids. Results: 16 gynaecologists participated. 25 patients participated before introduction of the decision aids and 28 after. The proportion of women reporting optimal SDM was higher after introduction (75 %) than before (50 %;p < 0.001). The mean observer-rated level of SDM was also significantly higher after than before (MD = 12.50,95 % CI 5.53–19.47). Conclusion: The level of SDM was higher after the introduction of the package than before. Practice implications: This study was conducted in a real-life setting in three clinics, both large academic and small rural, offering opportunities for implementation in different type of organizations.

Jaimie Meyer,1,2 Carolina Price,1 DeShana Tracey,1 Laurel Sharpless,2 Yue Song,2,3 Lynn Madden,1,4 Glyn Elwyn,5– 7 Frederick Altice1,2,4,8 1Yale School of Medicine, AIDS Program, New Haven, CT, USA; 2Yale School of Public Health, New Haven, CT, USA; 3Oregon Health Sciences University, Portland, OR, USA; 4APT Foundation, Inc., New Haven, CT, USA; 5The Dartmouth Institute for Health Policy and Clinical Practice, Hanover, NH, USA; 6Scientific Institute for Quality of Healthcare, University Nijmegen Medical Centre, Nijmegen, Netherlands; 7Cochrane Institute for Primary Care and Public Health, Cardiff University, Cardiff, UK; 8Centre of Excellence on Research in AIDS (CERiA), University of Malaya, Kuala Lumpur, MalaysiaCorrespondence: Jaimie MeyerYale School of Medicine, AIDS Program, 135 College Street, Suite 323, New Haven, CT, 06510, USATel +203 737 6233Fax +203 737 4051Email jaimie.meyer@yale.eduBackground: Women with substance use disorders (SUDs) are a key population for HIV prevention with pre-exposure prophylaxis (PrEP), though uptake is limited by awareness of PrEP, misestimation of personal HIV risk, and minimally integrated HIV prevention and addiction treatment services. Patient-centered decision aids (DA) could address these barriers to PrEP, but no extant DA for PrEP has been published, including for women with SUDs.Methods: We developed a patient-centered PrEP DA for women in addiction treatment. In a pilot randomized preference trial, we compared the DA to enhanced standard of care (eSOC) providing standardized information. The primary outcome was opting to receive more information through the DA; we also assessed the impact of the DA on PrEP decisional preference and PrEP uptake over 12 months.Results: A total of 164 enrolled participants (DA: 83; eSOC: 81) were similar in terms of HIV risk and demographics, which are representative of women in addiction treatment programs nationally, and most (92%) had opioid use disorder. Half of participants were PrEP eligible, though 37% underestimated their personal HIV risk. Independent correlates of selecting the PrEP DA relative to eSOC included higher alcohol use severity (aOR 4.13, 95% CI 1.05– 16.28, p=0.04) and perception of high risk for HIV (aOR 2.95, 95% CI 1.19– 7.35, p=0.02). For those selecting the DA, interest in PrEP increased significantly from 25% to 89%. DA participants were also significantly more likely than eSOC participants to see a provider for PrEP during follow-up (15.7% vs 6.2%; p=0.05).Conclusion: Half of the women selected to use the DA, and those who did significantly increased their engagement in the HIV prevention cascade through increased interest in and initiation of PrEP. Future iterations should accelerate the HIV prevention cascade for women with SUDs by integrating PrEP decision aids into existing addiction treatment services and actively linking women to PrEP.Keywords: PrEP, women, substance use disorders, decision aids

Shared decision making can help patients feel supported and empowered when deciding between healthcare options. Decision regret can be a meaningful measure of the quality of that encounter. However, in a patient-engaged research study examining shared decision making for breast cancer surgery, decision regret was a difficult construct to assess, and asking questions about decision regret caused the patient to experience that emotion upon reflection. In this article, we consider the complexity of decision regret, and discuss the difficulty of measuring that emotion through existing instruments. We call for clarity in definitions of decision regret and offer suggestions for developing a set of questions that can capture regret in a more meaningful way.

Rectal cancer patients often face complex surgical treatment decisions, but there are few available tools to aid in decision-making.We aimed to identify content and delivery preferences of rectal cancer patients and colorectal surgeons to guide future surgical decision aid creation.Qualitative study: inductive thematic analysis of semi-structured interviews.In-person and phone interviews.We purposively sampled 15 rectal cancer survivors based on demographics and surgery type. Five caregivers also participated. We purposively selected 10 surgeons based on practice type and years of experience.Semi-structured interviews.Major and minor themes for survivors and surgeons with thematic saturation.Interviews were a median of 61 minutes (41-93) for patients and 35 minutes (25-59) for surgeons. Nine survivors were younger than 65 years; 7 were female. Surgeons had been practicing for a mean of 10 years (SD 7.4), with 7 in academic and 3 in private settings. Participating survivors and surgeons wanted a comprehensive educational tool-not just a surgical decision aid. Survivors wanted more information on rectal cancer basics and lifestyle, care timelines, and resources during treatment. Surgeons thought patients mostly desired information about surgical options and bowel function. Both patients and surgeons wanted a tool that was personalized, simple, understandable, visually appealing, interactive, short, and in multiple formats.Results may not be generalizable due to selection bias of participants.Rectal cancer survivors, their caregivers, and colorectal surgeons wanted an educational support tool that would address substantial educational needs through the continuum of disease rather than a surgical decision aid focusing on a discrete surgical choice only. See Video Abstract at http://links.lww.com/DCR/C20 .ANTECEDENTES:Los pacientes con cáncer de recto a menudo enfrentan decisiones de tratamiento quirúrgico complejas, pero hay pocas herramientas disponibles para ayudar en la toma de decisiones.OBJETIVO:Nuestro objetivo fue identificar el contenido y las preferencias de entrega de los pacientes con cáncer de recto y los cirujanos colorrectales para guiar la futura creación de ayuda para la toma de decisiones quirúrgicas.DISEÑO:Estudio cualitativo: análisis temático inductivo de entrevistas semiestructuradas.ESCENARIO:Entrevistas en persona y por teléfono.PACIENTES:Tomamos muestras intencionalmente de 15 sobrevivientes de cáncer de recto, según la demografía y el tipo de cirugía. También participaron cinco cuidadores. Seleccionamos intencionalmente a 10 cirujanos según el tipo de práctica y los años de experiencia.INTERVENCIONES:Entrevistas semiestructuradas.PRINCIPALES MEDIDAS DE RESULTADO:Temas principales y secundarios para sobrevivientes y cirujanos con saturación temática.RESULTADOS:Las entrevistas tuvieron una mediana de 61 minutos (41-93) para pacientes y 35 minutos (25-59) para cirujanos. Nueve sobrevivientes tenían menos de 65 años; siete eran mujeres. Los cirujanos habían estado ejerciendo una media de 10 años (DE 7,4), con siete en entornos académicos y 3 en entornos privados. Los sobrevivientes y cirujanos participantes querían una herramienta educativa comprensible, no solo una ayuda para la decisión quirúrgica. Los sobrevivientes querían más información sobre los conceptos básicos y el estilo de vida del cáncer de recto, los plazos de atención y los recursos durante el tratamiento. Los cirujanos pensaron que los pacientes en su mayoría deseaban información sobre las opciones quirúrgicas y la función intestinal. Tanto los pacientes como los cirujanos querían una herramienta que fuera personalizada, simple, comprensible, visualmente atractiva, interactiva, corta y en múltiples formatos.LIMITACIONES:Los resultados pueden no ser generalizables debido al sesgo de selección de los participantes.CONCLUSIÓN:Los sobrevivientes de cáncer rectal, sus cuidadores y los cirujanos colorrectales querían una herramienta de apoyo educativo que cubriera las necesidades educativas sustanciales a lo largo del tratamiento de la enfermedad en lugar de una ayuda para la decisión quirúrgica que se centre solo en una opción quirúrgica discreta. Consulte Video Resumen en http://links.lww.com/DCR/C20 . (Traducción-Dr. Yolanda Colorado ).

Background: Clinicians and their employers, concerned with privacy and liability, are often hesitant to support the recording of clinical encounters. However, many people wish to record encounters with healthcare professionals. It is therefore important to understand how existing law applies to situations where an individual requests to record a clinical encounter.Methods: We searched for and reviewed relevant legal documents that could apply to recording clinical encounters. We limited the scope by purposefully examining relevant law in nine countries: Australia, Brazil, Canada, France, Germany, India, Mexico, the United Kingdom and the United States. We analyzed legal texts for consents needed to record a conversation, whether laws applied to remote or face-to-face conversations and penalties for violations.Findings: Most jurisdictions have case law or statutes, derived from a constitutional right to privacy, or a wiretapping or eavesdropping statute, governing the recording of private conversations. However, little to no guidance exists on how to translate constitutional principles and case law into advice for people seeking to record their medical encounters.Interpretation: The law has not kept pace with people’s wish to record clinical interactions, which has been enabled by the arrival of mobile technology.

Background: The implementation of shared decision-making and patient decision aids (PDAs) is impeded by clinicians’ attitudes. Objective: To develop a measure of clinician attitude towards PDAs. Methods: To develop the ADOPT measure, we used four stages, culminating in measure responses by medically qualified clinicians, 25 from each of the following specialties: emergency medicine, family medicine, oncology, obstetrics and gynaecology, orthopaedics, and psychiatry. To assess validity, we also posed three questions to assess the participants’ attitudinal and behavioural endorsement of PDAs. Allocating a point per adjective, we calculated the sum as well as positive and negative scores. We used univariate logistic regression to determine associations between the scores and attitudinal or behavioural endorsements. Results: 152 clinicians completed the measure. ‘Time-saving’ (39%) and ‘easy’ (34%) were the most frequently selected adjectives. ‘Time-consuming’ and ‘unfamiliar’ were the most frequently selected negative adjectives (both 19%). The sum scores were significantly associated with behavioural endorsement of PDAs. Discussion: Clinicians were able to respond to adjective-selection methods and the ADOPT measure could help assess clinician attitudes to PDAs. Validation will require further research. Practice implications: The ADOPT measure could help identify the extent and source of attitudinal resistance.

Cooperation has emerged as a fundamental characteristic of human society, and many argue that this ability is the basis for the phenomenal development in our capability as a species. When we focus our attention to the interactions that occur in healthcare, we inevitably notice power asymmetry due to unequal knowledge, experience, and status. However, as many have argued since the 1970s, there is an ethical imperative to respect the agency of individuals, offer information, collaborate, and support deliberation when difficult decisions arise. This process is particularly important when reasonable alternative courses of action exist and where the priorities and preferences of individuals would be expected to sway such decisions. This position article argues that this process, commonly described as shared decision making, involves work that is cognitive, emotional, and relational, and, particularly if people are ill, should have the underpinning goal of restoring autonomy. It covers the origin of the term and describes the core components; it describes how to do the cognitive, emotional, and relational work that is required, and offers a model to guide the process.

We evaluated the willingness of Family Medicine residents to engage in SDM, before and after an educational intervention.We delivered a lecture and a workshop for residents on implementing SDM in preventive health care. Before the lecture (T1), participants completed a measure of their willingness to engage in SDM. Six months later, participants completed the measure a second time (T2).At T1, 64 of 73 residents who attended the educational session completed incorpoRATE. Six months later, 44 of 64 participants completed the measure a second time (T2). The range of incorpoRATE sum scores at T1 was from 4.9 to 9.1 out of 10. Among the 44 participants who completed incorpoRATE at both time points, the mean scores were 7.0 ± 1.0 at T1 and 7.4 ± 1.0 at T2 (t = -2.833, p = 0.007, Cohen's D = 0.43).Among Family Medicine residents, the willingness to engage in SDM is highly variable. This suggests a lack of consensus in the mind of these residents about SDM. Although mean scores at T2 were significantly higher, we question the educational importance of this change.incorpoRATE is a promising measure for educators. Understanding how willing a particular physician audience is to undertake SDM, and which elements require attention, could be helpful in designing more targeted curricula. Further research is needed to understand how the perceived stakes of a clinical situation influence physician willingness to engage in SDM.

Background Improving confidence in and uptake of COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of elderly people and people at risk. While difficult to reach with workplace communication interventions, most LTCWs regularly use social media and smartphones. Various social media interventions have improved attitudes and uptake for other vaccines and hold promise for the LTCW population. Objective We aimed to develop a curated social web application (interactive website) to increase COVID-19 vaccine confidence (a 3-arm randomized trial is underway). Methods Following user-centric design and participatory research approaches, we undertook the following 3 steps: (1) content identification, (2) platform development, and (3) community building. A LTCW and stakeholder advisory group provided iterative input. For content identification (step 1), we identified topics of concern about COVID-19 vaccines via desktop research (published literature, public opinion polls, and social media monitoring), refined by interviewing and polling LTCWs. We also conducted a national online panel survey. We curated and fact-checked posts from popular social media platforms that addressed the identified concerns. During platform development (step 2), we solicited preferences for design and functionality via interviews and user experience testing with LTCWs. We also identified best practices for online community building (step 3). Results In the interviews (n=9), we identified 3 themes: (1) LTCWs are proud of their work but feel undervalued; (2) LTCWs have varying levels of trust in COVID-19–related information; and (3) LTCWs would welcome a curated COVID-19 resource that is easy to understand and use-"something for us". Through desktop research, LTCW interviews, and our national online panel survey (n=592) we found that participants are interested in information about COVID-19 in general, vaccine benefits, vaccine risks, and vaccine development. Content identification resulted in 434 posts addressing these topic areas, with 209 uploaded to the final web application. Our LTCW poll (n=8) revealed preferences for personal stories and video content. The platform we developed is an accessible WordPress-based social media web application, refined through formal (n=3) and informal user experience testing. Users can sort posts by topic or subtopic and react to or comment on posts. To build an online community, we recruited 3 LTCW “community ambassadors” and instructed them to encourage discussion, acknowledge concerns, and offer factual information on COVID-19 vaccines. We also set “community standards” for the web application. Conclusions An iterative, user-centric, participatory approach led to the launch of an accessible social media web application with curated content for COVID-19 vaccines targeting LTCWs in the United States. Through our trial, we will determine if this approach successfully improves vaccine confidence. If so, a similar social media resource could be used to develop curated social media interventions in other populations and with other public health goals.

BACKGROUND Improving confidence in and uptake of the COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of the elderly and people at risk. While difficult to reach with workplace communication interventions, most LTCWs regularly use social media and smartphones. Various social media interventions have improved attitudes and uptake for other vaccines and hold promise for the LTCW population. OBJECTIVE We aimed to develop a curated social web app (interactive website) to increase COVID-19 vaccine confidence (three-arm randomized trial underway). METHODS Following user-centric design and participatory research approaches, we undertook three steps: content identification (1), platform development (2), and community building (3). An LTCW and stakeholder advisory group provided iterative input. For content identification, we identified topics of concern about COVID-19 vaccines via desktop research (published literature, public opinion polls and social media monitoring), refined via interviews and a poll with LTCWs. We also conducted a national online panel survey. We curated and fact-checked posts from popular social media platforms addressing the identified concerns. During platform development, we solicited preferences for design and functionality via interviews and user experience (UX) testing with LTCWs. We also identified best practices for online community building (3), like comment moderation. RESULTS In the interviews (n=9), we found three themes: LTCWs 1) are proud of their work but feel undervalued; 2) have varying levels of trust in COVID-19 related information, and 3) would welcome a curated COVID-19 resource that is easy to understand and use. Our national online panel survey (n=592) confirmed that participants are interested in information about COVID-19 in general, vaccine benefits, vaccine risks, and vaccine development. Content identification resulted in 434 posts addressing these topic areas, with 209 uploaded to the final web app. Our LTCW poll (n=8) revealed preferences for personal stories and video content. The platform we developed is an accessible WordPress-based social media web app, refined through formal (n=3) and informal UX testing. Users can sort posts by topic or subtopic and react to or comment on them. To build an online community, we recruited three LTCW ‘community ambassadors’ and instructed them to encourage discussion, acknowledge concerns and offer factual information on COVID-19 vaccines. We also set ‘community standards’ for the web app. CONCLUSIONS An iterative, user-centric, participatory approach led to the launch of an accessible and usable social media web app with curated content for COVID-19 vaccines targeting LTCWs in the U.S. Through our trial, we will determine if this approach successfully improves vaccine confidence. If so, a similar social media resource could be used to develop curated social media interventions in other populations and for other public health goals. CLINICALTRIAL This effort is part of a broader clinical trial; ClinicalTrials.gov NCT05168800

Purpose We examined self‐reported financial toxicity and out‐of‐pocket expenses among adult women with breast cancer. Methods Patients spoke English, Spanish, or Mandarin Chinese, were aged 18+ years, had stage I–IIIA breast cancer, and were eligible for breast‐conserving and mastectomy surgery. Participants completed surveys about out‐of‐pocket costs and financial toxicity at 1 week, 12 weeks, and 1 year postsurgery. Results Three hundred ninety‐five of 448 eligible patients (88.2%) from the parent trial completed surveys. Excluding those reporting zero costs, crude mean ± SD out‐of‐pocket costs were $1,512 ± $2,074 at 1 week, $2,609 ± $6,369 at 12 weeks, and $3,308 ± $5,000 at 1 year postsurgery. Controlling for surgery, cancer stage, and demographics with surgeon and clinic as random effects, higher out‐of‐pocket costs were associated with higher financial toxicity 1 week and 12 weeks postsurgery (p < .001). Lower socioeconomic status (SES) was associated with lower out‐of‐pocket costs at each time point (p = .002–.013). One week postsurgery, participants with lower SES reported financial toxicity scores 1.02 points higher than participants with higher SES (95% confidence interval [CI], 0.08–1.95). Black and non‐White/non‐Black participants reported financial toxicity scores 1.91 (95% CI, 0.46–3.37) and 2.55 (95% CI, 1.11–3.99) points higher than White participants. Older (65+ years) participants reported financial toxicity scores 2.58 points lower than younger (, The term “financial toxicity” describes both the financial hardship and the psychological distress associated with health care costs. This article examines financial toxicity of women diagnosed with breast cancer at three time points up to 1 year post‐surgery, assessing demographic and clinical variables associated with higher financial toxicity and higher out‐of‐pocket expenses.

Background Despite decades of ethical, empirical, and policy support, shared decision-making (SDM) has failed to become standard practice in US cancer care. Organizational and health system characteristics appear to contribute to the difficulties in implementing SDM in routine care. However, little is known about the relevance of the different characteristics in specific healthcare settings. The aim of the study was to explore how organizational and health system characteristics affect SDM implementation in US cancer care. Methods We conducted semi-structured interviews with diverse cancer care stakeholders in the USA. Of the 36 invited, 30 (83%) participants consented to interview. We used conventional content analysis to analyze transcript content. Results The dominant theme in the data obtained was that concerns regarding a lack of revenue generation, or indeed, the likely loss of revenue, were a major barrier preventing implementation of SDM. Many other factors were prominent as well, but the view that SDM might impair organizational or individual profit margins and reduce the income of some health professionals was widespread. On the organizational level, having leadership support for SDM and multidisciplinary teams were viewed as critical to implementation. On the health system level, views diverged on whether embedding tools into electronic health records (EHRs), making SDM a criterion for accreditation and certification, and enacting legislation could promote SDM implementation. Conclusion Cancer care in the USA has currently limited room for SDM and is prone to paying lip service to the idea. Implementation efforts in US cancer care need to go further than interventions that target only the clinician-patient level. On a policy level, SDM could be included in alternative payment models. However, its implementation would need to be thoroughly assessed in order to prevent further misdirected incentivization through box ticking.

Shared decision making honors patient autonomy, particularly for preference-sensitive care decisions. Shared decision making can be challenging, however, when patients have impaired decision-making capacity. Here, after presenting an illustrative case example, this paper proposes a capacity-adjusted "sliding scale" approach to shared decision making.

Patient characteristics have been linked to prevalence and quality of shared decision-making (SDM) behaviors across diverse studies of varied size and focus. We aim to evaluate the extent to which patient characteristics are associated with patient-rated SDM scores as measured by collaboRATE and whether or not collaboRATE varies at the provider group level. We used the 2017 California Patient Assessment Survey data set, which included adult patients of 153 California-based medical groups receiving services between January and October 2016. Mixed-effects logistic regression evaluated relationships between collaboRATE scores and patient characteristics. We analyzed 31 265 total survey responses. Among included covariates, patients’ health status, race, primary language, and mode of survey response were significantly associated with collaboRATE scores. Case-mix adjustment is common in healthcare quality measurement and can be useful in pay-for-performance systems. For those use cases, we recommend adjusting collaboRATE scores by patients’ age, health status, gender, race, and language spoken at home, and survey response mode. However, when case-mix adjustment is not required, we suggest highlighting observed disparities across diverse patient populations to improve attention to inequities in patient experience.

Contains fulltext : 221012.pdf (Publisher’s version ) (Open Access) In the past decades, extensive research has been performed on the phenomenon of unwarranted clinical variation in clinical practice. Many studies have been performed on signaling, describing and visualizing clinical variation. We argue that it is time for next steps in practice variation research. In addition to describing and signaling variation patterns, we argue that a better understanding of causes of variation should be gained. Moreover, target points for improving and decreasing clinical variation should be created. Key elements in this new focus should be research on the complex interaction of networks, reflective medicine, patient beliefs and objective criteria for treatment choices. By combining these different concepts, alternative research objectives and new targets for improving and reducing unwarranted variation may be defined. In this perspective, we reflect on these concepts and propose target points for future research.

Contains fulltext : 251380.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To evaluate the effect of an intervention to improve disease activity-based management of RA in daily clinical practice by addressing patient level barriers. METHODS: The DAS-pass strategy aims to increase patients' knowledge about DAS28 and to empower patients to be involved in treatment (decisions). It consists of an informational leaflet, a patient held record and guidance by a specialized rheumatology nurse. In a Randomized Controlled Trial, 199 RA patients were randomized 1:1 to intervention or control group. Outcome measures were patient empowerment (EC-17; primary outcome), attitudes towards medication (BMQ), disease activity (DAS28) and knowledge about DAS28. RESULTS: Our strategy did not affect EC-17, BMQ, or DAS28 use. However it demonstrated a significant improvement of knowledge about DAS28 in the intervention group, compared to the control group. The intervention had an additional effect on patients with low baseline knowledge compared to patients with high baseline knowledge. CONCLUSION: The DAS-pass strategy educates patients about (the importance of) disease activity-based management, especially patients with low baseline knowledge. PRACTICE IMPLICATIONS: The strategy supports patient involvement in disease activity-based management of RA and can be helpful to reduce inequalities between patients in the ability to be involved in shared decision making.