Search

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

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.

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.

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.

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

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

Background Rates of recommending percutaneous coronary intervention (PCI) and coronary artery bypass grafting (CABG) vary across clinicians. Whether clinicians agree on preferred treatment options for multivessel coronary artery disease patients has not been well studied. Methods and results We distributed a survey to 104 clinicians from the Northern New England Cardiovascular Study Group through email and at a regional meeting with 88 (84.6%) responses. The survey described three clinical vignettes of multivessel coronary artery disease patients. For each patient vignette participants selected appropriate treatment options and whether they would use a patient decision aid. The likelihood of choosing PCI only or PCI/CABG over CABG only was modeled using a multinomial regression. Across all vignettes, participants selected CABG only as an appropriate treatment option 24.2% of the time, PCI only 25.4% of the time, and both CABG or PCI as appropriate treatment options 50.4% of the time. Surgeons were less likely to choose PCI over CABG (RR 0.14, 95% CI 0.03, 0.59) or both treatments over CABG only (RR 0.10, 95% CI 0.03, 0.34) relative to cardiologists. Overall, 65% of participants responded they would use a patient decision aid with each vignette. Conclusions There is a lack of consensus on the appropriate treatment options across cardiologists and surgeons for patients with multivessel coronary artery disease. Treatment choice is influenced by both patient characteristics and clinician specialty.

There are numerous opportunities for shared decision-making (SDM) in cystic fibrosis (CF) care, yet little is known about patients’ SDM experiences. This study evaluated SDM across 159 CF care programs (4024 participants) in the United States. Shared decision-making was assessed using the patient-reported collaboRATE measure, which was included in the CF Foundation’s Patient and Family Experience of Care Survey over 18 months. Overall, 69% of respondents reported experiencing SDM. Respondents at pediatric programs were more likely to experience SDM than those at adult programs (72% vs 67%, P < .001). Multivariable logistic regression analyses showed a relationship between SDM and patient age, whereby SDM was less likely to occur with patients aged 18 to 24 years, compared to some younger and older age groups ( P = .02

Background Although shared decision-making (SDM) has knowledge and satisfaction benefits for patients and is promising, we lack data demonstrating that SDM is associated with better patient-reported functional outcomes. Such data would support the integration and prioritization of SDM into all aspects of orthopaedic care. Questions/purposes (1) Is a measure of SDM before total joint arthroplasty associated with better patient-reported outcome measures (PROMs) 1 year postoperatively? (2) What is the relationship between the measure of SDM and two measures of patient experience (patient rating of the provider and patient likelihood of recommending the provider) at 1 year postoperatively? Methods In this observational longitudinal survey-based study, patients receiving an initial THA or TKA from a large, multispecialty medical group in the Midwestern United States were surveyed after they were scheduled for surgery and again at 12 months after their procedure. The three-item collaboRATE measure of SDM was added to existing patient surveys of PROMs. However, the surgeons and their department had no organized approach to SDM during this time. The surveys also included the Oxford knee or hip score and two validated measures of patient experience (patient rating of the provider and whether a patient would recommend the provider). Of the 2779 eligible primary joint arthroplasties that occurred from April 23, 2018 to May 1, 2019, 48% (1334 procedures; 859 TKAs and 485 THAs) of the patients responded to both the preoperative and 12-month postoperative surveys. Most of the patients who were included in the analytic sample were white (93%; 1255 of 1344), with only 3% (37) using Medicaid benefits at the time of surgery. Differences between responders and nonresponders were present and explored in an analysis. Patient responses were analyzed in regression models to estimate the association between preoperative collaboRATE scores and the Oxford knee or hip scores, and patient experience measures 12 months postoperatively. Results There was a moderate, positive association between preoperative collaboRATE scores and the Oxford scores at 12 months, after adjustment for potential confounders such as patient age and preoperative functional score (β = 0.58; 95% CI 0.14-1.02; p = 0.01). Similarly, patients with preoperative collaboRATE scores had marginally higher patient experience scores at 12 months postoperatively (β = 0.14; 95% CI 0.05-0.24; p = 0.003) and were more likely to recommend their surgeon (OR 1.43; 95% CI 1.11-1.84; p = 0.005). The patient experience measures were also modestly correlated with collaboRATE scores in cross-sectional associations, both preoperatively and at 12 months postoperatively (0.29 ≤ r ≤ 0.54; p Conclusion The association between preoperative collaboRATE scores and Oxford hip or knee scores suggests that SDM could be one tool to encourage better outcomes. Although previous studies have shown that SDM can improve patient experience, the lack of a strong correlation in our study suggests that PROMs and experience measures are separate domains, at least partly. Improving preoperative SDM between the surgeon and patient might help improve surgical outcomes for patients undergoing TKA and THA. Level of evidence Level II, therapeutic study.

ObjectivesThere is a paucity of evidence on how to facilitate shared decision-making under real-world conditions and, in particular, whether interventions should target patients, health care providers, or both groups. Our objectives were to assess the comparative effectiveness, feasibility, and acceptability of patient- and provider-targeted interventions for improving shared decision-making about contraceptive methods in a pragmatic trial that prioritised applicability to real-world care.DesignThe study design was a 2×2 factorial cluster randomized controlled trial with four arms: (1) video + prompt card (‘video’), (2) decision aids + training (‘decision aids’), (3) dual interventions (‘dual’), and (4) usual care. Clusters were 16 primary and/or reproductive health care clinics that deliver contraceptive care in the Northeast United States.ParticipantsParticipants were people who had completed a health care visit at a participating clinic, were assigned female sex at birth, were aged 15-49 years, were able to read and write English or Spanish, and had not previously participated in the study. Participants were enrolled for 13 weeks before interventions were implemented in clinics (pre-implementation cohort) and for 26 weeks after interventions were implemented in clinics (post-implementation cohort). 5,018 participants provided data on at least one study outcome.InterventionsInterventions were a video and prompt card that encourage patients to ask three specific questions in the health care visit and a suite of decision aids on contraceptive methods and training for providers in how to use them to facilitate shared decision-making with patients in the health care visit.Main outcome measuresThe primary outcome was shared decision-making about contraceptive methods. Secondary outcomes spanned psychological, behavioural, and health outcomes. All outcomes were patient-reported via surveys administered immediately, four weeks, and six months after the health care visit.ResultsWe did not observe any between-arm difference in the differences in shared decision-making between the pre- and post-implementation cohorts for the sample as a whole (video vs. usual care: adjusted odds ratio (AOR)=1.23 (95% confidence interval (CI): 0.82 to 1.85), p=0.80; decision aids vs. usual care: AOR=1.47 (95% CI: 0.98 to 2.18), p=0.32; dual vs. video: AOR=0.95 (95% CI: 0.64 to 1.41), p=1.00; dual vs. decision aids: AOR=0.80 (95% CI: 0.54 to 1.17), p=0.72) or for participants with adequate health literacy. Among participants with limited health literacy, the difference in shared decision-making between the pre- and post-implementation cohorts was different in the video arm from the usual care arm (AOR=2.40 (95% CI: 1.01 to 5.71), p=.047) and was also different in the decision aids arm from the usual care arm (AOR=2.65 (95% CI: 1.16 to 6.07), p=.021), however these differences were not robust to adjustment for multiple comparisons. There were no intervention effects on the secondary outcomes among all participants nor among prespecified subgroups. With respect to intervention feasibility, rates of participant-reported exposure to the relevant intervention components were 9.4% for the video arm, 31.5% for the decision aids arm, and 5.0% for the dual arm. All interventions were acceptable to most patients.ConclusionsThe interventions studied are unlikely to have a meaningful population-wide impact on shared decision-making or other outcomes in real-world contraceptive care without additional strategies to promote and support implementation. Selective use of the interventions among patients with limited health literacy may be more promising and, if effective, could reduce disparities in shared decision-making.Trial registrationClinicalTrials.govNCT02759939.

BackgroundCosts of care are important to patients making cancer treatment decisions, but clinicians often do not feel prepared to discuss treatment costs. We aim to (1) assess the impact of a conversation-based decision aid (Option Grid) containing cost information about slow-growing prostate cancer management options, combined with urologic surgeon training, on the frequency and quality of patient-urologic surgeon cost conversations, and (2) examine the impact of the decision aid and surgeon training on decision quality.MethodsWe will conduct a stepped-wedge cluster randomized trial in outpatient urology practices affiliated with a large academic medical center in the USA. We will randomize five urologic surgeons to four intervention sequences and enroll their patients with a first-time diagnosis of slow-growing prostate cancer independently at each period. Primary outcomes include frequency of cost conversations, initiator of cost conversations, and whether or not a referral is made to address costs. These outcomes will be collected by patient report (post-visit survey) and by observation (audio-recorded clinic visits) with consent. Other outcomes include the following: patient-reported decisional conflict post-visit and at 3-month follow-up, decision regret at 3-month follow-up, shared decision-making post-visit, communication post-visit, and financial toxicity post-visit and at 3-month follow-up; clinician-reported attitudes about shared decision-making before and after the study, and feasibility of sustained intervention use. We will use hierarchical regression analysis to assess patient-level outcomes, including urologic surgeon as a random effect to account for clustering of patient participants.DiscussionThis study evaluates a two-part intervention to improve cost discussions between urologic surgeons and patients when deciding how to manage slow-growing prostate cancer. Establishing the effectiveness of the strategy under study will allow for its replication in other clinical decision contexts.Trial registrationClinicalTrials.govNCT04397016. Registered on 21 May 2020

Objective: Patient-directed knowledge tools are designed to engage patients in dialogue or deliberation, to support patient decision-making or self-care of chronic conditions. However, an abundance of these exists. The tools themselves and their purposes are not always clearly defined; creating challenges for developers and users (professionals, patients). The study's aim was to develop a conceptual framework of patient-directed knowledge tool types.Methods: A face-to-face evidence-informed consensus meeting with 15 international experts. After the meeting, the framework went through two rounds of feedback before informal consensus was reached.Results: A conceptual framework containing five patient-directed knowledge tool types was developed. The first part of the framework describes the tools' purposes and the second focuses on the tools' core elements.Conclusion: The framework provides clarity on which types of patient-directed tools exist, the purposes they serve, and which core elements they prototypically include. It is a working framework and will require further refinement as the area develops, alongside validation with a broader group of stakeholders.Practice implications: The framework assists developers and users to know which type a tool belongs, its purpose and core elements, helping them to develop and use the right tool for the right job. (C) 2019 Elsevier B.V. All rights reserved.

If the core aim of a healthcare system is to minimise both illness and treatment burden while reducing the costs of care delivery, then we must accept, however reluctantly, that our efforts are largely failing. Life expectancy in highly developed countries is declining for the first time in decades. Long-term conditions and obesity are replacing infectious diseases as the most prominent health problems in developing nations. Meanwhile, average per capita healthcare expenditures are increasing despite efforts to restrain them. For example, in the USA, the average per capita healthcare expenditures are approaching $10 000 a year and consuming over 18% of its gross domestic product. Innovations in biomedicine, information technology and healthcare delivery systems may help address some of the challenges, but instead of containing costs these innovations tend to expand services. There are indications that interest in a concept called coproduction in healthcare is increasing. The core thesis is that by leveraging professional and end user collaboration, patients can be supported to contribute more to the management of their own conditions. This is especially true when dealing with long-term conditions, where supporting the person to learn how best to reduce the burden of both illness and treatment is an undisputed good. The goal is to cocreate value. Ostrom,1 based on her seminal work as an economist, called this coproduction . The cocreation of value already lies at the heart of most service sectors. Shopping, banking and travel all enlist the end user to coproduce value in the delivery of services. Coproduction can be even more powerful where people form alliances to share resources and generate solutions, by using what Christensen et al 2 refer to as ‘facilitated networks’. Facilitated networks offer a powerful strategy that has been adopted by many organisations to increase access, and to improve quality while …

Background Multimorbidity poses a challenge for decision-making processes and requires that more attention is paid to patient goals, preferences and needs; however, goal setting is not yet widely recognised as a core aspect of the shared decision-making (SDM) approach. This study aims to analyse clinician perceptions of the concept of goal setting within the context of SDM with older patients with multimorbidity. Methods Semi-structured interviews with general practitioners (GPs) and clinical geriatricians (CGs) were analysed using a framework analysis. The integrative model of SDM was used to develop a categorisation matrix, including goal setting as an additional component. Results Sixteen of the 33 clinicians mentioned explicit Goal setting as an integrated component of their definition of SDM, which was comparable to the number of clinicians who listed Patient values and preferences (n = 16), Doctor knowledge and recommendations (n = 19) and Make or explicitly defer a decision (n = 19), elements which are commonly considered to be important aspects of SDM. The other 17 clinicians (6 CGs and 11 GPs) did not mention Goal setting as an explicit component of SDM. Our analysis revealed two potential reasons for this observation. Besides the use of other terminology, part of clinicians viewed collaborative goal setting and SDM as separate but related processes. Conclusions Our study on clinician perspectives highlighted goal setting as component of a SDM approach and could therefore be considered supportive of recent theoretical insights that SDM models that lack an explicit goal-setting component appear to be deficient and overlook an important aspect of engaging patients in decision-making, particularly for patients with complex multimorbidities. We therefore call for the further development of a comprehensive SDM approach for older patients with multimorbidity to include explicit and unequivocal goal setting elements to sufficiently meet the expectations and needs of clinicians and their patients. Electronic supplementary material The online version of this article (10.1186/s12875-019-0966-z) contains supplementary material, which is available to authorized users.

Contains fulltext : 207103.pdf (Publisher’s version ) (Closed access) OBJECTIVE: To determine the effect of encounter patient decision aids (PDAs) as evaluated in randomized controlled trials (RCTs) and conduct a narrative synthesis of non-randomized studies assessing feasibility, utility and their integration into clinical workflows. METHODS: Databases were systematically searched for RCTs of encounter PDAs to enable the conduct of a meta-analysis. We used a framework analysis approach to conduct a narrative synthesis of non-randomized studies. RESULTS: We included 23 RCTs and 30 non-randomized studies. Encounter PDAs significantly increased knowledge (SMD = 0.42; 95% CI 0.30, 0.55), lowered decisional conflict (SMD= -0.33; 95% CI -0.56, -0.09), increased observational-based assessment of shared decision making (SMD = 0.94; 95% CI 0.40, 1.48) and satisfaction with the decision-making process (OR = 1.78; 95% CI 1.19, 2.66) without increasing visit durations (SMD= -0.06; 95% CI -0.29, 0.16). The narrative synthesis showed that encounter tools have high utility for patients and clinicians, yet important barriers to implementation exist (i.e. time constraints) at the clinical and organizational level. CONCLUSION: Encounter PDAs have a positive impact on patient-clinician collaboration, despite facing implementation barriers. PRACTICAL IMPLICATIONS: The potential utility of encounter PDAs requires addressing the systemic and structural barriers that prevent adoption in clinical practice.

Purpose Shared decision-making is currently not widely implemented in breast cancer care. Encounter decision aids support shared decision-making by helping patients and physicians compare treatment options. So far, little was known about adaptation needs for translated encounter decision aids, and encounter decision aids for breast cancer treatments were not available in Germany. This study aimed to adapt and evaluate the implementation of two encounter decision aids on breast cancer treatments in routine care. Methods We conducted a multi-phase qualitative study: (1) translation of two breast cancer Option Grid™ decision aids; comparison to national clinical standards; cognitive interviews to test patients’ understanding; (2) focus groups to assess acceptability; (3) testing in routine care using participant observation. Data were analysed using qualitative content analysis. Results Physicians and patients reacted positively to the idea of encounter decision aids, and reported being interested in using them; patients were most receptive. Several adaptation cycles were necessary. Uncertainty about feasibility of using encounter decision aids in clinical settings was the main physician-reported barrier. During real-world testing (N = 77 encounters), physicians used encounter decision aids in one-third of potentially relevant encounters. However, they did not use the encounter decision aids to stimulate dialogue, which is contrary to their original scope and purpose. Conclusions The idea of using encounter decision aids was welcomed, but more by patients than by physicians. Adaptation was a complex process and required resources. Clinicians did not follow suggested strategies for using encounter decision aids. Our study indicates that production of encounter decision aids alone will not lead to successful implementation, and has to be accompanied by training of health care providers. Electronic supplementary material The online version of this article (10.1007/s00404-018-5035-7) contains supplementary material, which is available to authorized users.

Effective coordination as people with serious mental illness (SMI) move between care settings is essential. We aimed to review challenges to care coordination for people with SMI and identify approaches for improving it. Sixteen articles were identified. Two main challenges emerged: people with SMI facing adjustment challenges during transitions and services struggling to provide continuity of care. Effective approaches addressed coordination challenges and resulted in better improvements in service utilization, social functioning and quality of life. Future interventions may benefit from shared decision-making, support for caregivers, and addressing the challenges associated with complicated medication regimes and accessing medications.

The COVID-19 pandemic continues to affect millions of people worldwide. While hygiene, behavioural measures and government-driven restrictions are in place, a globally implemented vaccination programme shows promise at mitigating the levels of illness and mortality caused by the virus.1 The exceptional magnitude of the pandemic, combined with the unprecedented speed of vaccine development has caused difficulty ensuring that information is neutral, standardised, coherent and evidence-based.2 As a result, misinformation about the virus and the COVID-19 vaccine, often combined with conspiracy theories, has become a major threat to uptake.3–5 A recent study about COVID-19 misinformation in national samples across five countries showed that misinformation negatively affected people’s self-reported compliance with public health recommendations and reduced people’s willingness to get vaccinated and recommend the vaccine to others.3 Misinformation increases vaccine hesitancy and threatens cooperation with vaccination programmes. Vaccine hesitancy designates the ‘delay in acceptance or refusal of vaccines despite availability of vaccination services’.6 Ensuring easy access to high quality evidence-based information about the potential harms and benefits of vaccination would increase knowledge. This in turn could help create better dialogue with healthcare professionals, minimise vaccine hesitancy and promote informed choice. ### Potential of shared decision making Shared decision making is an approach where health professionals, patients and caregivers share available evidence-based information while exploring the patient’s values and priorities to achieve informed preferences.7 It typically includes three elements: providing information, supporting deliberation and exploring patient preferences to form an informed choice.7 8 This process may or may not be supported by a patient decision aid; a patient-facing, evidence-based intervention proven to improve decision …

Contains fulltext : 238610.pdf (Publisher’s version ) (Open Access) OBJECTIVE: The systematic development of an intervention to improve disease activity-based management of rheumatoid arthritis (RA) in daily clinical practice that is based on patient-level barriers. METHODS: The self-management strategy was developed through a step-wise approach, in a process of co-design with all stakeholders and by addressing patient level barriers to RA management based on disease activity. RESULTS: The resulting DAS-pass strategy consists of decision supportive information and guidance by a specialised rheumatology nurse. It aims to increase patients' knowledge on DAS28, to empower patients to be involved in disease management, and to improve patients' medication beliefs. The decision supportive information includes an informational leaflet and a patient held record. The nurse individualises the information, stimulates patients to communicate about disease activity, and offers the opportunity for questions or additional support. CONCLUSION: The DAS-pass strategy was found helpful by stakeholders. It can be used to improve RA daily clinical practice. Our systematic approach can be used to improve patient knowledge and self-management on other RA related topics. Also, it can be used to improve the management of other chronic conditions. We therefore provide a detailed description of our methodology to assist those interested in developing an evidence-based strategy for educating and empowering patients.

Background Few studies have examined the best way to convey the probability of serious events occurring in the future (i.e., risk of stroke or death) to persons with low numeracy or graph literacy proficiency. To address this gap, we developed and user-tested a bar graph and compared it to icon arrays to assess its impact on understanding and preference for viewing risk information. Objectives To determine the: (i) formats’ impact on participants’ understanding of risk information; (ii) formats’ impact on understanding and format preference across numeracy and graph literacy subgroups; (iii) rationale supporting participants’ preference for each graphical display format. Methods An online sample (evenly made up of participants with high and low objective numeracy and graph literacy) was randomized to view either the icon array or the bar graph. Each format conveyed the risk of major stroke and death five years after choosing surgery, a stent, or medication to treat carotid artery stenosis. Participants answered questions to assess their understanding of the risk information. Lastly, both formats were presented in parallel, and participants were asked to identify their preferred format to view risk information and explain their preference. Results Of the 407 participants, 197 were assigned the icon array and 210 the bar graph. Understanding of risk information and format preference did not differ significantly between the two trial arms, irrespective of numeracy and graph literacy proficiency. High numeracy and graph literacy proficiency was associated with high understanding (p Conclusion We found no evidence to demonstrate the superiority of one format over another on understanding. The majority of participants preferred viewing the risk information using the bar graph format.

Background Inguinal hernia repair, gallbladder removal, and knee- and hip replacements are the most commonly performed surgical procedures, but all are subject to practice variation and variable patient-reported outcomes. Shared decision-making (SDM) has the potential to reduce surgery rates and increase patient satisfaction. This study aims to evaluate the effectiveness of an SDM strategy with online decision aids for surgical and orthopaedic practice in terms of impact on surgery rates, patient-reported outcomes, and cost-effectiveness. Methods The E-valuAID-study is designed as a multicentre, non-randomized stepped-wedge study in patients with an inguinal hernia, gallstones, knee or hip osteoarthritis in six surgical and six orthopaedic departments. The primary outcome is the surgery rate before and after implementation of the SDM strategy. Secondary outcomes are patient-reported outcomes and cost-effectiveness. Patients in the usual care cluster prior to implementation of the SDM strategy will be treated in accordance with the best available clinical evidence, physician’s knowledge and preference and the patient’s preference. The intervention consists of the implementation of the SDM strategy and provision of disease-specific online decision aids. Decision aids will be provided to the patients before the consultation in which treatment decision is made. During this consultation, treatment preferences are discussed, and the final treatment decision is confirmed. Surgery rates will be extracted from hospital files. Secondary outcomes will be evaluated using questionnaires, at baseline, 3 and 6 months. Discussion The E-valuAID-study will examine the cost-effectiveness of an SDM strategy with online decision aids in patients with an inguinal hernia, gallstones, knee or hip osteoarthritis. This study will show whether decision aids reduce operation rates while improving patient-reported outcomes. We hypothesize that the SDM strategy will lead to lower surgery rates, better patient-reported outcomes, and be cost-effective. Trial registration: The Netherlands Trial Register, Trial NL8318, registered 22 January 2020. URL: https://www.trialregister.nl/trial/8318.

Objective To evaluate the efficacy of shared decision-making (SDM) intervention among patients with lumbar degenerative diseases (LDDs) in terms of decision self-efficacy, control preferences, SDM process, decision satisfaction, and conflict. Methods A total of 130 outpatients with LDDs recruited from orthopedic or rehabilitation clinics were randomly assigned to the SDM intervention (n = 67) or comparison (n = 63) groups. Patients in the intervention group received decision aids (DAs) with decision coaching and those in controlled group received standard educational materials from a health educator. The primary outcome was decision self-efficacy, and secondary outcomes were control preference, SDM process, conflict, and satisfaction. Results The SDM intervention significantly improved decision self-efficacy (mean difference [MD] = 7.1, 95% confidence interval [CI]: 1.7–12.5, partial η2 = 0.05) and reduced conflict (MD = −7.0, 95% CI: −12.2 to −1.9, partial η2 = 0.06), especially in patients without family involvement, compared with the health education group. However, no significant between-group differences were observed in other outcomes. Conclusion SDM intervention improved SDM self-efficacy and reduced conflict in patients with LDDs. Practice Implications Clinicians can integrate DAs and decision coaching in SDM conversations. SDM intervention seems to engage patients in decision-making, especially those without family involvement.

ObjectivesTo update a previous systematic review to determine if patient decision aid (PDA) interventions generate savings in healthcare settings, and if so, from which perspective (ie, patient, organisation providing care, society).DesignSystematic review.Data sourcesMEDLINE, CINAHL, PsycINFO, Web of Science, Cochrane Library, Embase, Campbell Collaboration Library, EconLit, Business Source Complete, Centre for Reviews and Dissemination: NHS Economic Evaluations Database (NHS EED), Database of Abstracts of Reviews of Effects (DARE) and Health Technology Assessment (HTA) from 15 March 2013 to 25 January 2019. The references of studies that met the eligibility criteria and any publications related to conference abstracts or registered clinical trials were reviewed to increase the sensitivity of the search.Eligibility criteriaFull and partial economic evaluations with an experimental, quasi-experimental or randomised controlled design were included. The intervention had to satisfy the pre-determined minimum conditions necessary to be defined as a PDA, and (for full evaluations) provide details on the comparator used.Data extraction and synthesisAll study outcomes and economic data were extracted. The reporting and quality of the economic analyses were independently assessed by two health economists.ResultsOf 5066 studies, 22 studies were included, including the 8 studies from the previous review. Twelve studies reported cost-savings (range=US$10 to US$81 156; US dollars in 2020), primarily from the organisational or health system perspective, and 10 studies did not. However, due to the quality of the economic analyses, and the related issues with the interpretative validity of results it would be inappropriate to say that PDAs will generate savings, from any perspective.ConclusionsIt is unclear whether PDAs will generate savings. Greater consensus on what constitutes a PDA and the need to compare them against usual care over a sufficient time horizon to allow valid assessment of costs and outcomes is required.PROSPERO registration numberCRD42019118457.

BACKGROUND: Improving patient-centered (PC) communication is a priority in many healthcare organizations. Most PC communication metrics are distal to the care encounter and lack clear attribution, thereby reducing relevance for leaders and clinicians. OBJECTIVE: We assessed the acceptability of measuring PC communication at the point-of-care. DESIGN: A brief patient survey was conducted immediately post-primary care appointments at one Veterans Affairs Medical Center. Audit-feedback reports were created for clinicians and discussed in qualitative interviews. PARTICIPANTS: A total of 485 patients completed the survey. Thirteen interviews were conducted with clinicians and hospital leaders. MAIN MEASURE(S): Measures included collaboRATE (a 3-item tool measuring PC communication), a question about how well needs were met, and overall visit satisfaction. Data were analyzed using descriptive statistics to characterize the mean and distribution of collaboRATE scores and determine the proportion of patients giving clinicians a “top score” on each item. Associations among responses were examined. Interviews focused on the value of measuring PC communication and were analyzed using a framework approach. KEY RESULTS: The proportion of patients giving PC communication “top scores” ranged from 41 to 92% for 16 clinicians who had ≥ 25 completed surveys. Among patients who gave “top scores” for PC communication, the odds of reporting that needs were “completely met” were 10.8 times higher (p

Background Women of lower socioeconomic status (SES) with early‐stage breast cancer are more likely to report poorer physician‐patient communication, lower satisfaction with surgery, lower involvement in decision making, and higher decision regret compared to women of higher SES. The objective of this study was to understand how to support women across socioeconomic strata in making breast cancer surgery choices. Methods We conducted a 3‐arm (Option Grid, Picture Option Grid, and usual care), multisite, randomized controlled superiority trial with surgeon‐level randomization. The Option Grid (text only) and Picture Option Grid (pictures plus text) conversation aids were evidence‐based summaries of available breast cancer surgery options on paper. Decision quality (primary outcome), treatment choice, treatment intention, shared decision making (SDM), anxiety, quality of life, decision regret, and coordination of care were measured from T0 (pre‐consultation) to T5 (1‐year after surgery. Results Sixteen surgeons saw 571 of 622 consented patients. Patients in the Picture Option Grid arm (n = 248) had higher knowledge (immediately after the visit [T2] and 1 week after surgery or within 2 weeks of the first postoperative visit [T3]), an improved decision process (T2 and T3), lower decision regret (T3), and more SDM (observed and self‐reported) compared to usual care (n = 257). Patients in the Option Grid arm (n = 66) had higher decision process scores (T2 and T3), better coordination of care (12 weeks after surgery or within 2 weeks of the second postoperative visit [T4]), and more observed SDM (during the surgical visit [T1]) compared to usual care arm. Subgroup analyses suggested that the Picture Option Grid had more impact among women of lower SES and health literacy. Neither intervention affected concordance, treatment choice, or anxiety. Conclusions Paper‐based conversation aids improved key outcomes over usual care. The Picture Option Grid had more impact among disadvantaged patients. Lay Summary The objective of this study was to understand how to help women with lower incomes or less formal education to make breast cancer surgery choices.Compared with usual care, a conversation aid with pictures and text led to higher knowledge. It improved the decision process and shared decision making (SDM) and lowered decision regret. A text‐only conversation aid led to an improved decision process, more coordinated care, and higher SDM compared to usual care. The conversation aid with pictures was more helpful for women with lower income or less formal education.Conversation aids with pictures and text helped women make better breast cancer surgery choices., A paper‐based pictorial conversation aid (pictures plus text) is beneficial to all patients with early‐stage breast cancer and particularly to disadvantaged patients. Between‐surgeon variation suggests that the maximal impact of such interventions requires standardized physician training combined with these interventions.

To determine if two encounter conversation aids for early-stage breast cancer surgery increased observed and patient-reported shared decision making (SDM) compared with usual care and if observed and patient-reported SDM were associated.Surgeons in a cluster randomized trial at four cancer centers were randomized to use an Option Grid, Picture Option Grid, or usual care. We used bivariate statistics, linear regression, and multilevel models to evaluate the influence of trial arm, patient socioeconomic status and health literacy on observed SDM (via OPTION-5) and patient-reported SDM (via collaboRATE).From 311 recordings, OPTION-5 scores were 73/100 for Option Grid (n = 40), 56.3/100 for Picture Option Grid (n = 144), and 41.0/100 for usual care (n = 127; p0.0001). Top collaboRATE scores were 81.6 % for Option Grid, 80.0 % for Picture Option Grid, and 56.4 % for usual care (p0.001). Top collaboRATE scores correlated with an 8.60 point (95 %CI 0.66, 13.7) higher OPTION-5 score (p = 0.008) with no correlation in the multilevel analysis. Patients of lower socioeconomic status had lower OPTION-5 scores before accounting for clustering.Both conversation aids led to meaningfully higher observed and patient-reported SDM. Observed and patient-reported SDM were not strongly correlated.Healthcare providers could implement these conversation aids in real-world settings.

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

ObjectivesTo identify and describe instances of routine patient-reported shared decision-making (SDM) measurement in the USA, and to explore barriers and facilitators of routine patient-reported SDM measurement for quality improvement.SettingPayer and provider healthcare organisations in the USA.ParticipantsCurrent or former adult employees of healthcare organisations with prior SDM activity and that may be conducting routine SDM measurement (n=21).OutcomesQualitative interview and survey data collected through snowball sampling recruitment strategy to inform barriers and facilitators of routine patient-reported SDM measurement.ResultsThree participating sites routinely measured SDM from patients’ perspectives, including one payer organisation and two provider organisations—with the largest measurement effort taking place in the payer organisation. Facilitators of SDM measurement included SDM as a core organisational value or strategic priority, trialability of SDM measurement programmes, flexibility in how measures can be administered and existing momentum from payer-mandated measurement programmes. Barriers included competing organisational priorities with regard to patient-reported measurement and lack of perceived comparative advantage of patient-reported SDM measurement.ConclusionsPayers have a unique opportunity to encourage emphasis on SDM within healthcare organisations, including routine patient-reported measurement of SDM; however, provider organisations are currently best placed to make effective use of this type of data.