569 results on '"Glyn Elwyn"'
Search Results
2. Multi-cancer Early Detection Tests, Primary Care, and Shared Decision Making
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Kevin Selby, Glyn Elwyn, and Robert J. Volk
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Internal Medicine ,General Medicine - Published
- 2023
3. Urethral outcomes in metoidioplasty and phalloplasty gender affirming surgery (MaPGAS) and vaginectomy: a systematic review
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Christopher D. Ortengren, Gaines Blasdel, Ella A. Damiano, Peter D. Scalia, Tamara S. Morgan, Pamela Bagley, Heather B. Blunt, Glyn Elwyn, John F. Nigriny, Jeremy B. Myers, Mang L. Chen, and Rachel A. Moses
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Reproductive Medicine ,Urology - Published
- 2022
4. Decision making in metoidioplasty and phalloplasty gender-affirming surgery: a mixed methods study
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Rebecca L Butcher, Linda M Kinney, Gaines P Blasdel, Glyn Elwyn, Jeremy B Myers, Benjamin Boh, Kaylee M Luck, and Rachel A Moses
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Psychiatry and Mental health ,Endocrinology ,Reproductive Medicine ,Urology ,Endocrinology, Diabetes and Metabolism - Abstract
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.
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- 2023
5. The submissive silence of others: Examining definitions of shared decision making
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Heather B. Blunt, Kimberly Dong, Dariusz Galasiński, Peter Scalia, Zackary Berger, and Glyn Elwyn
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Silence ,Critical discourse analysis ,Social actions ,Active voice ,Discourse analysis ,General Medicine ,Construct (philosophy) ,Psychology ,Semantics ,Syntax ,Cognitive psychology - Abstract
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.
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- 2022
6. Shared Decision-making in the U.S.: Evidence exists, but implementation science must now inform policy for real change to occur
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Yuan, Lu, Glyn, Elwyn, Benjamin W, Moulton, Robert J, Volk, Dominick L, Frosch, and Erica S, Spatz
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Germany ,Health Policy ,Decision Making ,Humans ,Medicine (miscellaneous) ,Patient Participation ,Decision Making, Shared ,Implementation Science ,Education - Abstract
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.
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- 2022
7. Editorial: 20 years after the start of international Shared Decision-Making activities: Is it time to celebrate? Probably…
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Paulina, Bravo, Martin, Härter, Kirsten, McCaffery, Anik, Giguère, Pola, Hahlweg, and Glyn, Elwyn
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Germany ,Health Policy ,Humans ,Medicine (miscellaneous) ,Patient Participation ,Decision Making, Shared ,Education - Published
- 2022
8. The CONFIDENT study protocol: a randomized controlled trial comparing two methods to increase long-term care worker confidence in the COVID-19 vaccines
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Gabrielle Stevens, Lisa C. Johnson, Catherine H. Saunders, Peter Schmidt, Ailyn Sierpe, Rachael P. Thomeer, N. Ruth Little, Matthew Cantrell, Renata W. Yen, Jacqueline A. Pogue, Timothy Holahan, Danielle C. Schubbe, Rachel C. Forcino, Branden Fillbrook, Rowena Sheppard, Celeste Wooten, Don Goldmann, A. James O’Malley, Eve Dubé, Marie-Anne Durand, and Glyn Elwyn
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Public Health, Environmental and Occupational Health - Abstract
Background Clinical and real-world effectiveness data for the COVID-19 vaccines have shown that they are the best defense in preventing severe illness and death throughout the pandemic. However, in the US, some groups remain more hesitant than others about receiving COVID-19 vaccines. One important group is long-term care workers (LTCWs), especially because they risk infecting the vulnerable and clinically complex populations they serve. There is a lack of research about how best to increase vaccine confidence, especially in frontline LTCWs and healthcare staff. Our aims are to: (1) compare the impact of two interventions delivered online to enhanced usual practice on LTCW COVID-19 vaccine confidence and other pre-specified secondary outcomes, (2) determine if LTCWs’ characteristics and other factors mediate and moderate the interventions’ effect on study outcomes, and (3) explore the implementation characteristics, contexts, and processes needed to sustain a wider use of the interventions. Methods We will conduct a three-arm randomized controlled effectiveness-implementation hybrid (type 2) trial, with randomization at the participant level. Arm 1 is a dialogue-based webinar intervention facilitated by a LTCW and a medical expert and guided by an evidence-based COVID-19 vaccine decision tool. Arm 2 is a curated social media web application intervention featuring interactive, dynamic content about COVID-19 and relevant vaccines. Arm 3 is enhanced usual practice, which directs participants to online public health information about COVID-19 vaccines. Participants will be recruited via online posts and advertisements, email invitations, and in-person visits to care settings. Trial data will be collected at four time points using online surveys. The primary outcome is COVID-19 vaccine confidence. Secondary outcomes include vaccine uptake, vaccine and booster intent for those unvaccinated, likelihood of recommending vaccination (both initial series and booster), feeling informed about the vaccines, identification of vaccine information and misinformation, and trust in COVID-19 vaccine information provided by different people and organizations. Exploration of intervention implementation will involve interviews with study participants and other stakeholders, an in-depth process evaluation, and testing during a subsequent sustainability phase. Discussion Study findings will contribute new knowledge about how to increase COVID-19 vaccine confidence and effective informational modalities for LTCWs. Trial registration NCT05168800 at ClinicalTrials.gov, registered December 23, 2021.
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- 2023
9. 'It helps us say what’s important...' Developing Serious Illness Topics: A clinical visit agenda-setting tool
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Catherine H. Saunders, Marie-Anne Durand, Peter Scalia, Kathryn B. Kirkland, Meredith A. MacMartin, Amber E. Barnato, David Wilson Milne, Joan Collison, Ashleigh Bennett, Garrett Wasp, Eugene Nelson, and Glyn Elwyn
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General Medicine - Published
- 2023
10. Do payment programs incentivize shared decision making in US healthcare?
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Glyn Elwyn, Ailyn Sierpe, and Rachel Forcino
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General Medicine - Published
- 2023
11. Eliciting patients’ healthcare goals and concerns: Do questions influence responses?
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Peter Scalia, Welmoed K van Deen, Jaclyn A Engel, Gabrielle Stevens, Aricca D Van Citters, Megan M Holthoff, Lisa C Johnson, Alice M Kennedy, Swathi B Reddy, Eugene C Nelson, and Glyn Elwyn
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Rheumatic Diseases ,Health Policy ,Chronic Disease ,Humans ,General Medicine ,Inflammatory Bowel Diseases ,Delivery of Health Care ,Goals - Abstract
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.
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- 2022
12. Willingness to Engage in Shared Decision Making: Impact of an Educational Intervention for Resident Physicians (SDM-FM)
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Roland Grad, Amrita Sandhu, Michael Alexander Ferrante, Vinita D’Souza, Lily Puterman-Salzman, Samira Rahimi, Gabrielle Stevens, and Glyn Elwyn
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- 2023
13. Bidirectional Correlations Between Health Confidence and Inflammatory Bowel Disease Activity: A Nationwide Longitudinal Cohort Study
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Chung Sang Tse, Gil Y Melmed, Corey A Siegel, Chien-Hsiang Weng, Samir A Shah, S Alandra Weaver, Brant J Oliver, Glyn Elwyn, Welmoed K van Deen, and Health Technology Assessment (HTA)
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Gastroenterology ,Immunology and Allergy - Abstract
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.
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- 2023
14. My Anesthesia Choice-HF: Development and Preliminary Testing of a Tool to Facilitate Conversations About Anesthesia for Hip Fracture Surgery
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Mark D. Neuman, Glyn Elwyn, Veena Graff, Viktoria Schmitz, and Mary C. Politi
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- 2023
15. The role of co-production in Learning Health Systems
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Glyn Elwyn, Paul B. Batalden, Andreas Gremyr, Ann-Christine Andersson, Boel Andersson Gäre, and Johan Thor
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Value (ethics) ,Learning cycle ,Knowledge management ,Sociotechnical system ,health quality improvement ,Computer science ,media_common.quotation_subject ,Fidelity ,Health care ,Information system ,Humans ,Business Administration ,Företagsekonomi ,media_common ,business.industry ,Health Policy ,Public Health, Environmental and Occupational Health ,health service research ,General Medicine ,Health Services ,Learning Health System ,co-production ,Interdependence ,Leadership ,Coproduction ,patient-centred care ,business ,Delivery of Health Care ,Information Systems - Abstract
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.
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- 2021
16. Relationships among Antecedents, Processes, and Outcomes for Shared Decision Making: A Cross-Sectional Survey of Patients with Lumbar Degenerative Disease
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Chia Hsien Chen, Glyn Elwyn, Yen Lee, Hsin Yi Chuang, Ken N. Kuo, and Wen Hsuan Hou
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medicine.medical_specialty ,business.industry ,Cross-sectional study ,Health Policy ,Decision Making ,Middle Aged ,medicine.disease ,Cross-Sectional Studies ,Lumbar ,Degenerative disease ,Surveys and Questionnaires ,Physical therapy ,medicine ,Humans ,Patient Participation ,Decision process ,business ,Decision Making, Shared - Abstract
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.
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- 2021
17. Development and piloting of four decision aids for implantable cardioverter‐defibrillators in different media formats
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Larry A. Allen, Amneet Sandhu, Daniel D. Matlock, Glyn Elwyn, Richard Thomson, Paul D. Varosy, Christopher E. Knoepke, Frederick A. Masoudi, Bryan C. Wallace, Carolyn T. Nowels, Angela G. Brega, Travis Vermilye, and Jacqueline Jones
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Male ,medicine.medical_specialty ,Colorado ,Concordance ,Pilot Projects ,Context (language use) ,Article ,Decision Support Techniques ,Interviews as Topic ,Surveys and Questionnaires ,Intervention (counseling) ,Chart review ,Decision aids ,Humans ,Medicine ,Reimbursement ,Heart Failure ,business.industry ,General Medicine ,Trial Phase ,Defibrillators, Implantable ,Death, Sudden, Cardiac ,Research Design ,Family medicine ,Usual care ,Female ,Cardiology and Cardiovascular Medicine ,business - Abstract
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.
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- 2021
18. Encounter decision aids to facilitate shared decision-making with women experiencing heavy menstrual bleeding or symptomatic uterine fibroids
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Rachel Thompson, Shama S. Alam, Johanna W.M. Aarts, Glyn Elwyn, Tina C. Foster, Michelle D Dannenberg, and Obstetrics and Gynaecology
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medicine.medical_specialty ,Uterine fibroids ,Decision Making ,Decision Support Techniques ,Gynaecology ,03 medical and health sciences ,0302 clinical medicine ,medicine ,Decision aids ,Humans ,030212 general & internal medicine ,Menorrhagia ,Shared decision-making ,Before after study ,Leiomyoma ,business.industry ,030503 health policy & services ,Treatment options ,General Medicine ,medicine.disease ,Menstrual disorders ,Menstrual bleeding ,Controlled Before-After Studies ,Sample size determination ,Family medicine ,Female ,Patient Participation ,0305 other medical science ,business - Abstract
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.
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- 2021
19. Preference for and Efficacy of a PrEP Decision Aid for Women with Substance Use Disorders
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Carolina Price, Glyn Elwyn, Yue Song, Laurel Sharpless, Jaimie P. Meyer, Lynn M. Madden, Frederick L. Altice, and DeShana Tracey
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medicine.medical_specialty ,Population ,Human immunodeficiency virus (HIV) ,Medicine (miscellaneous) ,Hiv risk ,medicine.disease_cause ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,Primary outcome ,All institutes and research themes of the Radboud University Medical Center ,Extant taxon ,medicine ,education ,Pharmacology, Toxicology and Pharmaceutics (miscellaneous) ,Original Research ,education.field_of_study ,business.industry ,Health Policy ,Opioid use disorder ,medicine.disease ,Preference ,PrEP ,Patient Preference and Adherence ,substance use disorders ,decision aids ,Family medicine ,women ,Substance use ,business ,Social Sciences (miscellaneous) - Abstract
Jaimie Meyer,1,2 Carolina Price,1 DeShana Tracey,1 Laurel Sharpless,2 Yue Song,2,3 Lynn Madden,1,4 Glyn Elwyn,5â 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 1.05â 16.28, p=0.04) and perception of high risk for HIV (aOR 2.95, 95% CI 1.19â 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
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- 2021
20. Unexpected Outcomes of Measuring Decision Regret: Using a Breast Cancer Decision-Making Case Example
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Glyn Elwyn, Marie-Anne Durand, Mary C. Politi, Christine M. Marx, Renata W. Yen, and Kelly Oman
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Health economics ,business.industry ,media_common.quotation_subject ,Regret ,Health administration ,law.invention ,law ,Health care ,CLARITY ,Quality (business) ,Set (psychology) ,Construct (philosophy) ,Psychology ,business ,Cognitive psychology ,media_common - Abstract
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.
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- 2021
21. A Rectal Cancer Surgical Decision Aid Is Not Enough: A Qualitative Study
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Jenaya L. Goldwag, Catherine H. Saunders, Jackson T. Read, Marie-Anne Durand, Glyn Elwyn, and Srinivas Joga Ivatury
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Male ,Surgeons ,Rectal Neoplasms ,Gastroenterology ,Rectum ,Humans ,Female ,General Medicine ,Survivors ,Decision Support Techniques ,Retrospective Studies - Abstract
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 ).
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- 2022
22. Individuals recording clinical encounters
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Glyn Elwyn, Jaclyn Engel, Peter Scalia, and Carmel Shachar
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Public Health, Environmental and Occupational Health - Abstract
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.
- Published
- 2022
23. Development of an adjective-selection measure evaluating clinicians’ attitudes towards using patient decision aids: The ADOPT measure
- Author
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Johanna W M, Aarts, Michelle D, Dannenberg, Peter, Scalia, Glyn, Elwyn, and Obstetrics and Gynaecology
- Subjects
Clinician attitudes ,Measurement ,Attitude of Health Personnel ,Decision Making ,Humans ,Patient decision aids ,General Medicine ,Patient Participation ,Family Practice ,Shared decision-making ,Decision Support Techniques - Abstract
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.
- Published
- 2022
24. Epistemic justice is the basis of shared decision making
- Author
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Dariusz Galasiński, Justyna Ziółkowska, and Glyn Elwyn
- Subjects
General Medicine - Published
- 2023
25. Shared decision making: What is the work?
- Author
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Glyn Elwyn
- Subjects
Notice ,Process (engineering) ,Communication ,030503 health policy & services ,media_common.quotation_subject ,Decision Making ,Emotions ,Cognition ,General Medicine ,Deliberation ,03 medical and health sciences ,0302 clinical medicine ,Work (electrical) ,Action (philosophy) ,Agency (sociology) ,Humans ,Engineering ethics ,030212 general & internal medicine ,0305 other medical science ,Psychology ,Decision Making, Shared ,Autonomy ,media_common - Abstract
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.
- Published
- 2021
26. Using incorpoRATE to examine clinician willingness to engage in shared decision making: A study of Family Medicine residents
- Author
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Roland Grad, Amrita Sandhu, Michael Ferrante, Vinita D’Souza, Lily Puterman-Salzman, Samira Abbasgholizadeh Rahimi, Gabrielle Stevens, and Glyn Elwyn
- Subjects
Physicians ,Decision Making ,Humans ,General Medicine ,Curriculum ,Patient Participation ,Family Practice ,Decision Making, Shared - Abstract
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.
- Published
- 2022
27. Shared decision-making
- Author
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Glyn Elwyn
- Published
- 2022
28. Bringing personal perspective elicitation to the heart of shared decision-making: a scoping review
- Author
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Ivana Box, Dunja Dreesens, Marjan Meinders, Jan Kremer, Johanna Aarts, and Glyn Elwyn
- Subjects
General Medicine - Published
- 2023
29. (IT) 'Something for us.' Co-developing a COVID-19 vaccine social media site for long-term care workers
- Author
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Gabrielle Stevens, Matthew Cantrell, Glyn Elwyn, Jaclyn Engel, Melissa Gonzalez, Martha Hayward, Jose Luis Salinas Vargas, Manu Onteeru, and Marie-Anne Durand
- Subjects
General Medicine - Published
- 2023
30. Elicitation of personal perspective during patient-clinician conversations using a decision aid
- Author
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Marjan Meinders, Dunja Dreesens, Guus Brand, Jan Kremer, Johanna Aarts, and Glyn Elwyn
- Subjects
General Medicine - Published
- 2023
31. Co-Development of a Web Application (COVID-19 Social Site) for Long-Term Care Workers ('Something for Us'): User-Centered Design and Participatory Research Study
- Author
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Catherine H, Saunders, Ailyn, Sierpe, Gabrielle, Stevens, Glyn, Elwyn, Matthew, Cantrell, Jaclyn, Engel, Melissa, Gonzalez, Martha, Hayward, Joellen, Huebner, Lisa, Johnson, Alejandro, Jimenez, Nancy Ruth, Little, Corinne, McKenna, Manu, Onteeru, May, Oo Khine, Jacqueline, Pogue, José Luis, Salinas Vargas, Peter, Schmidt, Rachael, Thomeer, and Celeste, Wooten
- Subjects
Community-Based Participatory Research ,Vaccines ,COVID-19 Vaccines ,COVID-19 ,Humans ,Health Informatics ,Long-Term Care ,Social Media ,User-Centered Design ,Aged - Abstract
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.
- Published
- 2022
32. 'Something for us:' Co-development of a COVID-19 vaccine social media web app for long-term care workers (Preprint)
- Author
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Gabrielle Stevens, Ailyn Sierpe, Glyn Elwyn, and Catherine Saunders
- Abstract
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
- Published
- 2022
33. Women Who Are Young, Non-White, and with Lower Socioeconomic Status Report Higher Financial Toxicity up to 1 Year After Breast Cancer Surgery: A Mixed-Effects Regression Analysis
- Author
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Catherine H. Saunders, Mary C. Politi, Danielle Schubbe, Renata W. Yen, A. James O'Malley, Glyn Elwyn, Rachel C Forcino, and Marie-Anne Durand
- Subjects
Adult ,Cancer Research ,medicine.medical_specialty ,Health Outcomes and Economics of Cancer Care ,medicine.medical_treatment ,Breast Neoplasms ,Mixed effects regression ,Financial toxicity ,Adult women ,03 medical and health sciences ,Breast cancer ,0302 clinical medicine ,Humans ,Medicine ,030212 general & internal medicine ,Costs of care ,Socioeconomic status ,Mastectomy ,Finance ,business.industry ,Cancer ,medicine.disease ,Confidence interval ,Surgery ,Social Class ,Oncology ,030220 oncology & carcinogenesis ,Toxicity ,Regression Analysis ,Female ,Health Expenditures ,business - Abstract
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.
- Published
- 2020
34. 'All about the money?' A qualitative interview study examining organizational- and system-level characteristics that promote or hinder shared decision-making in cancer care in the United States
- Author
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Sarah Kobrin, Glyn Elwyn, and Isabelle Scholl
- Subjects
Male ,medicine.medical_specialty ,Health Personnel ,Decision Making ,Health Informatics ,Certification ,Health informatics ,Economic implementation barriers ,Health administration ,Neoplasms ,Organizational characteristics ,medicine ,Humans ,Revenue ,Cancer care ,Qualitative Research ,Health policy ,Shared decision-making ,Accreditation ,Routine care ,lcsh:R5-920 ,business.industry ,Research ,Health Policy ,Public health ,Public Health, Environmental and Occupational Health ,Health services research ,General Medicine ,Public relations ,United States ,Health system characteristics ,Oncology ,Implementation ,Payment models ,Female ,Financial incentives ,Patient Participation ,business ,lcsh:Medicine (General) ,Decision Making, Shared - Abstract
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.
- Published
- 2020
35. Sliding-Scale Shared Decision Making for Patients With Reduced Capacity
- Author
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Glyn Elwyn and Tim Lahey
- Subjects
Health (social science) ,Knowledge management ,business.industry ,Computer science ,Health Policy ,Decision Making ,MEDLINE ,Sliding scale ,Issues, ethics and legal aspects ,Patient autonomy ,Humans ,Patient Participation ,business ,Decision Making, Shared - Abstract
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.
- Published
- 2020
36. Engaging Patients in Healthcare Improvement and Innovation
- Author
-
Amy Price and Glyn Elwyn
- Subjects
Organizational architecture ,Nursing ,business.industry ,Policy making ,Health care ,Patient engagement ,business ,Psychology - Published
- 2020
37. Achieving Patient Engagement Through Shared Decision‐making
- Author
-
Glyn Elwyn, Paul Barr, and Isabelle Scholl
- Subjects
Nursing ,Decision aids ,Patient engagement ,Patient-centered care ,Psychology ,Health policy - Published
- 2020
38. Do collaboRATE Scores Reflect Differences in Perceived Shared Decision-Making Across Diverse Patient Populations? Evidence From a Large-Scale Patient Experience Survey in the United States
- Author
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A. James O'Malley, Marjan J. Meinders, Glyn Elwyn, Gert P. Westert, Marcus Thygeson, and Rachel C Forcino
- Subjects
Gerontology ,Health (social science) ,patient satisfaction ,medical decision-making ,patient feedback ,Leadership and Management ,First language ,Logistic regression ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,03 medical and health sciences ,0302 clinical medicine ,Patient satisfaction ,All institutes and research themes of the Radboud University Medical Center ,Health care ,Patient experience ,030212 general & internal medicine ,Set (psychology) ,Research Articles ,lcsh:R5-920 ,communication ,business.industry ,030503 health policy & services ,Health Policy ,Scale (social sciences) ,Survey data collection ,measurement ,0305 other medical science ,business ,Psychology ,lcsh:Medicine (General) - Abstract
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.
- Published
- 2020
39. Understanding unwarranted variation in clinical practice: a focus on network effects, reflective medicine and learning health systems
- Author
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Glyn Elwyn, Femke Atsma, and Gert P. Westert
- Subjects
Quality management ,Frontiers of Improvement ,Health Policy ,practice variations ,Perspective (graphical) ,shared decision-making ,research agenda ,Public Health, Environmental and Occupational Health ,General Medicine ,Learning Health System ,Focus (linguistics) ,Research objectives ,quality improvement ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,Clinical Practice ,Variation (linguistics) ,objective clinical criteria ,Phenomenon ,networks ,Humans ,AcademicSubjects/MED00860 ,Psychology ,Cognitive psychology ,Healthcare system - Abstract
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.
- Published
- 2020
40. Response to the letter by Pieterse et al. regarding the submissive silence of others: Examining definitions of shared decision making
- Author
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Zackary Berger, Dariusz Galasinski, Peter Scalia, Kimberly Dong, Heather B. Blunt, and Glyn Elwyn
- Subjects
Decision Making ,Humans ,General Medicine ,Patient Participation ,Decision Making, Shared - Published
- 2022
41. Patient involvement in rheumatoid arthritis care to improve disease activity-based management in daily practice: A randomized controlled trial
- Author
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Steven Teerenstra, Anita Huis, Marieke J. Spijk-de Jonge, Julia M Weijers, Marlies E J L Hulscher, Mart A F J van de Laar, Glyn Elwyn, Piet L. C. M. van Riel, and Psychology, Health & Technology
- Subjects
musculoskeletal diseases ,medicine.medical_specialty ,Affect (psychology) ,Severity of Illness Index ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,law.invention ,Arthritis, Rheumatoid ,Disease activity ,Rheumatology ,Randomized controlled trial ,law ,Daily practice ,Intervention (counseling) ,medicine ,Humans ,Baseline (configuration management) ,business.industry ,Outcome measures ,General Medicine ,medicine.disease ,Treatment Outcome ,lnfectious Diseases and Global Health Radboud Institute for Health Sciences [Radboudumc 4] ,Rheumatoid arthritis ,Physical therapy ,Patient Participation ,business - Abstract
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.
- Published
- 2022
42. The limits of shared decision making
- Author
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Glyn Elwyn, Amy Price, Juan Victor Ariel Franco, and Pål Gulbrandsen
- Subjects
General Medicine - Published
- 2022
43. Less is More: The User-Centred Design of Agenda Setting Conversation Cards for People with Type 2 Diabetes
- Author
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Kirsten Lomborg, Lene Munch, Freja Holmberg Krøner, and Glyn Elwyn
- Published
- 2022
44. Bringing personal perspective elicitation to the heart of shared decision-making: A scoping review
- Author
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Ester A. Rake, Ivana C.H. Box, Dunja Dreesens, Marjan J. Meinders, Jan A.M. Kremer, Johanna W.M. Aarts, and Glyn Elwyn
- Subjects
Scoping review ,Communication ,Preferences ,Decision Making ,values and context ,Humans ,General Medicine ,Patient Participation ,Personal perspective elicitation ,Decision Making, Shared ,Shared decision-making ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] - Abstract
Contains fulltext : 282766.pdf (Publisher’s version ) (Open Access) OBJECTIVES: Proponents of shared decision-making (SDM) advocate the elicitation of the patient's perspective. This scoping review explores if, and to what extent, the personal perspectives of patients are elicited during a clinical encounter, as part of a SDM process. We define personal perspective elicitation (PPE) as: the disclosure (either elicited by the clinician or spontaneously expressed by the patient) of information related to the patient's personal preferences, values and/or context. METHODS: A search was conducted in five literature databases from inception dates up to July 2020, to identify empirical studies about SDM (with/without SDM instrument). RESULTS: The search identified 4562 abstracts; 263 articles were read in full text, resulting in 99 included studies. Studies reported low levels of PPE. Integration of personal perspectives into the conversation or a future care plan was largely absent. The majority of the discussed content related to physical health, while social and psychological topics were mostly unaddressed. CONCLUSIONS: PPE occurs on a very low level in efforts to achieve SDM according to evaluation studies. PRACTICE IMPLICATIONS: PPE is advocated but rarely achieved in SDM evaluation studies. Causes should be identified, followed by designing interventions to improve this aspect of SDM.
- Published
- 2022
45. Potential impact of encounter patient decision aids on the patient-clinician dialogue: a qualitative study on Dutch and American medical specialists' experiences
- Author
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Ester A. Rake, Dunja Dreesens, Kristie Venhorst, Marjan J. Meinders, Tessa Geltink, Jenny T. Wolswinkel, Michelle Dannenberg, Jan A.M. Kremer, Glyn Elwyn, Johanna W. M. Aarts, and Obstetrics and Gynaecology
- Subjects
neurology ,Decision Making ,gynaecology ,General Medicine ,United States ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,Decision Support Techniques ,orthopaedic & trauma surgery ,otolaryngology ,Ethnicity ,Humans ,Medicine ,Decision Making, Shared ,medical education & training ,qualitative research - Abstract
ObjectivesTo examine the experiences among Dutch and American clinicians on the impact of using encounter patient decision aids (ePDAs) on their clinical practice, and subsequently to formulate recommendations for sustained ePDA use in clinical practice.DesignQualitative study using semi-structured interviews with clinicians who used 11 different ePDAs (applicable to their specialty) for 3 months after a short training. The verbatim transcribed interviews were coded with thematic analysis by six researchers via ATLAS.ti.SettingNine hospitals in the Netherlands and two hospitals in the USA.ParticipantsTwenty-five clinicians were interviewed: 16 Dutch medical specialists from four different disciplines (gynaecologists, ear-nose-throat specialists, neurologists and orthopaedic surgeon), 5 American gynaecologists and 4 American gynaecology medical trainees.ResultsThe interviews showed that the ePDA potentially impacted the patient–clinician dialogue in several ways. We identified six themes that illustrate this: that is, (1) communication style, for example, structuring the conversation; (2) the patient’s role, for example, encouraging patients to ask more questions; (3) the clinician’s role, for example, prompting clinicians to discuss more information; (4) workflow, for example, familiarity with the ePDA’s content helped to integrate it into practice; (5) shared decision-making (SDM), for example, mixed experiences whether the ePDA contributed to SDM; and (6) content of the ePDA. Recommendations to possibly improve ePDA use based on the clinician’s experiences: (1) add pictorial health information to the ePDA instead of text only and (2) instruct clinicians how to use the ePDA in a flexible (depending on their discipline and setting) and personalised way adapting the ePDA to the patients’ needs (e.g., mark off irrelevant options).ConclusionsePDAs contributed to the patient–clinician dialogue in several ways according to medical specialists. A flexible and personalised approach appeared appropriate to integrate the use of ePDAs into the clinician’s workflow, and customise their use to individual patients’ needs.
- Published
- 2022
46. Measuring triadic decision making in older adults with multiple chronic conditions: Observer OPTIONMCC
- Author
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Ruth E. Pel-Littel, Nida Gizem Yılmaz, Bianca M. Buurman, Mirella Minkman, Marjolein H. J. van de Pol, Linda R Tulner, Julia C.M. van Weert, Glyn Elwyn, Wilma J.M. Scholte op Reimer, Geriatrics, AMS - Ageing & Morbidty, APH - Aging & Later Life, APH - Quality of Care, ACS - Heart failure & arrhythmias, ACS - Atherosclerosis & ischemic syndromes, Persuasive Communication (ASCoR, FMG), Kenniscentrum ACHIEVE, and Urban Vitality
- Subjects
Gerontology ,Male ,Psychometrics ,Decision Making ,Video Recording ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,03 medical and health sciences ,0302 clinical medicine ,All institutes and research themes of the Radboud University Medical Center ,Older patients ,Patient-Centered Care ,Outpatient clinic ,Humans ,030212 general & internal medicine ,Multiple Chronic Conditions ,Referral and Consultation ,Aged ,Netherlands ,Observer Variation ,Physician-Patient Relations ,Primary Health Care ,030503 health policy & services ,Communication ,Single factor ,Scale development ,Geriatricians ,Reproducibility of Results ,General Medicine ,Observer (special relativity) ,Caregivers ,Observational study ,Female ,Patient Participation ,0305 other medical science ,Psychology ,Factor Analysis, Statistical ,Family Practice - Abstract
ObjectiveTo develop a valid and reliable tool to measure triadic decision making between older adults with multiple chronic conditions (MCC), their informal caregivers and geriatricians.MethodsVideo observational study with cross-sectional assessment of interaction during medical consultations between geriatricians (n = 10), patients (n = 108) and informal caregivers (68) by three calibrated raters at the geriatric outpatient department of two Dutch hospitals.The Observer OPTIONMCC instrument was developed, based on the 'Dynamic model of SDM in frail older patients' and the 'Observing Patient Involvement in Decision Making - 5 item scale' (Observer OPTION-5).ResultsFactor analysis confirms that it is acceptable to regard the new scale as a single construct. The 7-item single factor solution explained 62.76% of the variability for geriatricians, 61.60% of the variability for patients and 54.32% of the variability for informal caregivers. The inter-rater ICC for the total Observer OPTIONMCC score was .96, .96, and .95 (resp. geriatricians, patients, informal caregivers), with values ranging from .60 to .95 for individual items, showing good levels of agreement.Conclusion and Practice ImplicationsWe conclude that Observer OPTIONMCC is sufficiently valid and reliable to be used for the assessment of triadic SDM in populations of older patients with MCC.
- Published
- 2019
47. Implementation and sustainability factors of two early-stage breast cancer conversation aids in diverse practices
- Author
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Marie-Anne Durand, Rachel C Forcino, Catherine H. Saunders, Sanja Percac-Lima, Robert J. Volk, Julie A. Margenthaler, Mary C. Politi, Peter Scalia, Courtney Goodwin, Glyn Elwyn, Johanna W.M. Aarts, Maria van den Muijsenbergh, Karen Sepucha, Ann Bradley, Danielle Schubbe, Renata W. Yen, A. James O'Malley, Elissa M. Ozanne, and Obstetrics and Gynaecology
- Subjects
Normalization process theory ,medicine.medical_specialty ,Medicine (General) ,Normalization Process Theory ,media_common.quotation_subject ,Decision Making ,Health Informatics ,Breast Neoplasms ,Health informatics ,Health administration ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,Decision Support Techniques ,03 medical and health sciences ,0302 clinical medicine ,R5-920 ,Breast cancer ,Encounter decision aid ,Qualitative research ,medicine ,Humans ,Conversation ,030212 general & internal medicine ,Health communication ,Shared decision-making ,media_common ,business.industry ,030503 health policy & services ,Health Policy ,Communication ,Research ,Encounter patient decision aid ,Public Health, Environmental and Occupational Health ,Health services research ,Patient portal ,General Medicine ,Decision aid ,Family medicine ,Implementation ,Conversation aid ,Female ,Patient Participation ,0305 other medical science ,business ,Decision Making, Shared - Abstract
Background Conversation aids can facilitate shared decision-making and improve patient-centered outcomes. However, few examples exist of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored factors that will promote the sustained use of two early-stage breast cancer conversation aids. We examined differences in opinions between the two conversation aids and across socioeconomic strata. Methods We nested this study within a randomized controlled trial that demonstrated the effectiveness of two early-stage breast cancer surgery conversation aids, one text-based and one picture-based. These conversation aids facilitated more shared decision-making and improved the decision process, among other outcomes, across four health systems with socioeconomically diverse patient populations. We conducted semi-structured interviews with a purposive sample of patient participants across conversation aid assignment and socioeconomic status (SES) and collected observations and field notes. We interviewed trial surgeons and other stakeholders. Two independent coders conducted framework analysis using the NOrmalization MeAsure Development through Normalization Process Theory. We also conducted an inductive analysis. We conducted additional sub-analyses based on conversation aid assignment and patient SES. Results We conducted 73 semi-structured interviews with 43 patients, 16 surgeons, and 14 stakeholders like nurses, cancer center directors, and electronic health record (EHR) experts. Patients and surgeons felt the conversation aids should be used in breast cancer care in the future and were open to various methods of giving and receiving the conversation aid (EHR, email, patient portal, before consultation). Patients of higher SES were more likely to note the conversation aids influenced their treatment discussion, while patients of lower SES noted more influence on their decision-making. Intervention surgeons reported using the conversation aids did not lengthen their typical consultation time. Most intervention surgeons felt using the conversation aids enhanced their usual care after using it a few times, and most patients felt it appeared part of their normal routine. Conclusions Key factors that will guide the future sustained implementation of the conversation aids include adapting to existing clinical workflows, flexibility of use, patient characteristics, and communication preferences. Trial registration ClinicalTrials.gov Identifier: NCT03136367, registered on May 2, 2017
- Published
- 2021
48. An absence of equipoise: Examining surgeons’ decision talk during encounters with women considering breast cancer surgery
- Author
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Mary C. Politi, Catherine H. Saunders, Victoria F. Grabinski, Renata W. Yen, Amy E. Cyr, Marie-Anne Durand, and Glyn Elwyn
- Subjects
Clinical Oncology ,Adult ,Health Care Providers ,Decision Making ,Cancer Treatment ,Social Sciences ,Surgical and Invasive Medical Procedures ,Breast Neoplasms ,Mastectomy, Segmental ,Cognition ,Physicians ,Breast Tumors ,Breast Cancer ,Medicine and Health Sciences ,Psychology ,Humans ,Medical Personnel ,Mastectomy ,Aged ,Surgeons ,Aged, 80 and over ,Physician-Patient Relations ,Multidisciplinary ,Surgical Excision ,Cognitive Psychology ,Biology and Life Sciences ,Cancers and Neoplasms ,Middle Aged ,Health Care ,Professions ,Surgical Oncology ,Oncology ,People and Places ,Lumpectomy ,Cognitive Science ,Population Groupings ,Female ,Clinical Medicine ,Decision Making, Shared ,Research Article ,Neuroscience - Abstract
Shared decision-making is recommended for decisions with multiple reasonable options, yet clinicians often subtly or explicitly guide choices. Using purposive sampling, we performed a secondary analysis of 142 audio-recorded encounters between 13 surgeons and women eligible for breast-conserving surgery with radiation or mastectomy. We trained 9 surgeons in shared decision-making and provided them one of two conversation aids; 4 surgeons practiced as usual. Based on a published taxonomy of treatment recommendations (pronouncements, suggestions, proposals, offers, assertions), we examined how surgeons framed choices with patients. Many surgeons made assertions providing information and advice (usual care 71% vs. intervention 66%; p = 0.54). Some made strong pronouncements (usual care 51% vs. intervention 36%; p = .09). Few made proposals and offers, leaving the door open for deliberation (proposals usual care 21% vs. intervention 26%; p = 0.51; offers usual care 40% vs. intervention 40%; p = 0.98). Surgeons were significantly more likely to describe options as comparable when using a conversation aid, mentioning this in all intervention group encounters (usual care 64% vs. intervention 100%; p
- Published
- 2021
49. Interrupted opening statements in clinical encounters: A scoping review
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Amanda C. Coyle, Renata W. Yen, and Glyn Elwyn
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Physician-Patient Relations ,Communication ,Humans ,General Medicine ,Hospitals - Abstract
To conduct a scoping review of literature on the duration of patients' opening statements in clinical encounters, with or without an interruption.We conducted a scoping review to identify articles based on pre-specified inclusion and exclusion criteria. One reviewer extracted study details and outcomes related to the length of patients' opening statements. A second reviewer verified this data.We included 14 studies from 1185 citations reviewed. Encounters were in primary care clinics, specialty clinics, and hospitals. Across six studies, the mean time to interruption was 18.2 s. The mean length of uninterrupted opening statements was 45.9 s across nine studies.Clinicians interrupting their patients' opening statements, compared to not interrupting, takes away time from the patient to fully present their concerns. Research has not focused on the nature of clinician interruptions. For instance, an interruption encouraging expansion or more detail facilitates understanding. Therefore, the impact these interruptions have on the clinical encounter remains unknown.Interrupting the average patient does not save time, so clinicians may benefit from allowing their patients to complete their opening statements.
- Published
- 2021
50. Shared decision-making interventions: An overview and a meta-analysis of their impact on vaccine uptake
- Author
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Marie-Anne Durand, Peter Scalia, and Glyn Elwyn
- Subjects
medicine.medical_specialty ,Vaccines ,business.industry ,Public health ,Decision Making ,Psychological intervention ,COVID-19 ,Decisional conflict ,law.invention ,Systematic review ,Randomized controlled trial ,law ,Meta-analysis ,Family medicine ,Health care ,Internal Medicine ,Decision aids ,medicine ,Humans ,Patient Participation ,business ,Decision Making, Shared - Abstract
BACKGROUND: The interest in shared decision making (SDM) and the use of patient decision aids has increased significantly. Research indicates that this approach has benefits and yet, implementation remains a challenge. To illustrate this development, we focus on vaccine hesitancy which has become a serious public health challenge during the COVID-19 pandemic. Various strategies have been used in healthcare, with limited success, to help patients overcome vaccine hesitancy. It is unclear whether SDM interventions can increase vaccination rates. AIMS: Our aim was twofold: to provide an overview of SDM and the use of patient decision aids, and to determine the effect of SDM interventions on vaccine uptake. METHODS: To provide an overview, we drew on our knowledge of the field and summarized the most recent systematic reviews. We examined the impact on vaccine hesitancy by searching for randomized controlled trials (RCTs) of SDM interventions, conducted a meta-analysis and calculated a pooled odds ratio. Additional outcomes were reported in a narrative synthesis. RESULTS: SDM is viewed as the pinnacle of patient centered care, supported by an ethical imperative and by empirical evidence of benefits. We found 10 RCTs that met our inclusion criteria. SDM interventions significantly increased vaccine uptake compared to control groups (OR=1.45; 95% CI 1.17, 1.80; p
- Published
- 2021
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