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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.

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.

Background During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care. Methods The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence. Results 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth. Conclusions PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.

The COVID-19 pandemic forced cystic fibrosis (CF) care programs to rapidly shift from in-person care delivery to telehealth. Our objective was to provide a qualitative exploration of facilitators and barriers to: 1) implementing high-quality telehealth and 2) navigating reimbursement for telehealth services.We used data from the 2020 State of Care CF Program Survey (n=286 U.S. care programs) administered in August-September to identify two cohorts of programs, with variation in telehealth quality (n=12 programs) and reimbursement (n=8 programs). We conducted focus groups and semi-structured interviews with CF program directors and coordinators in December 2020, approximately 9 months from onset of the pandemic. We used the Consolidated Framework for Implementation Research to identify facilitators and barriers of implementation, and inductive thematic analysis to identify facilitators and barriers of reimbursement.Factors differentiating programs with greater and lower perceived telehealth quality included telehealth characteristics (perceived advantage over in-person care, cost, platform quality); external influences (needs and resources of those served by the CF program), characteristics of the CF program (compatibility with workflows, relative priority, available resources); characteristics of team members (individual stage of change), and processes for implementation (engaging patients and teams). Reimbursement barriers included documentation to optimize billing; reimbursement of multi-disciplinary team members, remote monitoring, and telephone-only telehealth; and lower volume of patients.A number of factors are associated with successful implementation and reimbursement of telehealth. Future efforts should provide guidance and incentives that support telehealth delivery and infrastructure, share best practices across CF programs, and remove barriers.

Background Due to the COVID-19 pandemic, there was an uptake of telehealth in cystic fibrosis care. Previous studies show disparities in telehealth use based on socioeconomic status (SES). We aimed to: (1) understand telehealth use and perceptions and (2) identify the facilitators and barriers to telehealth use among people with CF and their families (PwCF) from diverse racial/ethnic and socioeconomic backgrounds. Methods We conducted an analysis of the 2020 Cystic Fibrosis State of Care surveys completed by PwCF (PFSoC), CF Care Programs (SoC1) and the CF Foundation Patient Registry (CFFPR). Results A total of 424 PwCF and 286 programs responded to the PFSoC and SoC1. Among PwCF, 90% self-identified as White, 6% as Hispanic/Latino, and 2% as Black. Racial/ethnic minorities were less likely to have had a telehealth visit (p=.015). This difference was pronounced among the Hispanic/Latino population (p

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

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

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

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

Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community.The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care.By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n=286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n=378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n=132; 41%, n=118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems.PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.

Inleiding Mannen met plasklachten gaan vaak spontaan op zoek naar online keuzehulpen voor prostaatspecifiek antigeen (PSA)-tests, die hen moeten helpen om te beslissen of ze een PSA-test moeten laten doen. We hebben gekeken naar de effecten van een dergelijke interactieve keuzehulp voor PSA-tests en welke rol zo’n test kan spelen bij de gezamenlijke besluitvorming rond de vraag of moet worden getest op PSA. Methode We deden een cross-sectionele analyse van gegevens die we tussen 1 januari 2016 en 30 december 2017 hebben verzameld onder gebruikers van een webgebaseerde keuzehulp. Resultaten Het gebruik van de keuzehulp leidde tot een aanzienlijke daling van het aantal mannen dat uiteindelijk koos voor het doen van een PSA-test. De keuzehulp vergrootte de kennis over de PSA-test en verkleinde het beslissingsconflict. Conclusie De resultaten uit ons onderzoek ondersteunen het belang dat de NHG-Standaard en Thuisarts.nl hechten aan gezamenlijke besluitvorming rond PSA-tests.

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 …

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 Some researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementation project, we examined the work involved in integrating an encounter PDA for symptomatic uterine fibroids into Epic EHR systems. OBJECTIVE This study aims to identify the steps and time required to integrate a PDA into the Epic EHR system and examine facilitators and barriers to the integration effort. METHODS We conducted a case study at 5 academic medical centers in the United States. A clinical champion at each institution liaised with their Epic EHR team to initiate the integration of the uterine fibroid Option Grid PDAs into clinician-facing menus. We scheduled regular meetings with the Epic software analysts and an expert Epic technologist to discuss how best to integrate the tools into Epic for use by clinicians with patients. The meetings were then recorded and transcribed. Two researchers independently coded the transcripts and field notes before categorizing the codes and conducting a thematic analysis to identify the facilitators and barriers to EHR integration. The steps were reviewed and edited by an Epic technologist to ensure their accuracy. RESULTS Integrating the uterine fibroid Option Grid PDA into clinician-facing menus required an 18-month timeline and a 6-step process, as follows: task priority negotiation with Epic software teams, security risk assessment, technical review, Epic configuration; troubleshooting, and launch. The key facilitators of the process were the clinical champions who advocated for integration at the institutional level and the presence of an experienced technologist who guided Epic software analysts during the build. Another facilitator was the use of an emerging industry standard app platform (Health Level 7 Substitutable Medical Applications and Reusable Technologies on Fast Healthcare Interoperability Resources) as a means of integrating the Option Grid into existing systems. This standard platform enabled clinicians to access the tools by using single sign-on credentials and prevented protected health information from leaving the EHR. Key barriers were the lack of control over the Option Grid product developed by EBSCO (Elton B Stephens Company) Health; the periodic Epic upgrades that can result in a pause on new software configurations; and the unforeseen software problems with Option Grid (ie, inability to print the PDA), which delayed the launch of the PDA. CONCLUSIONS The integration of PDAs into the Epic EHR system requires a 6-step process and an 18-month timeline. The process required support and prioritization from a clinical champion, guidance from an experienced technologist, and a willing EHR software developer team. CLINICALTRIAL

Background Some researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementation project, we examined the work involved in integrating an encounter PDA for symptomatic uterine fibroids into Epic EHR systems. Objective This study aims to identify the steps and time required to integrate a PDA into the Epic EHR system and examine facilitators and barriers to the integration effort. Methods We conducted a case study at 5 academic medical centers in the United States. A clinical champion at each institution liaised with their Epic EHR team to initiate the integration of the uterine fibroid Option Grid PDAs into clinician-facing menus. We scheduled regular meetings with the Epic software analysts and an expert Epic technologist to discuss how best to integrate the tools into Epic for use by clinicians with patients. The meetings were then recorded and transcribed. Two researchers independently coded the transcripts and field notes before categorizing the codes and conducting a thematic analysis to identify the facilitators and barriers to EHR integration. The steps were reviewed and edited by an Epic technologist to ensure their accuracy. Results Integrating the uterine fibroid Option Grid PDA into clinician-facing menus required an 18-month timeline and a 6-step process, as follows: task priority negotiation with Epic software teams, security risk assessment, technical review, Epic configuration; troubleshooting, and launch. The key facilitators of the process were the clinical champions who advocated for integration at the institutional level and the presence of an experienced technologist who guided Epic software analysts during the build. Another facilitator was the use of an emerging industry standard app platform (Health Level 7 Substitutable Medical Applications and Reusable Technologies on Fast Healthcare Interoperability Resources) as a means of integrating the Option Grid into existing systems. This standard platform enabled clinicians to access the tools by using single sign-on credentials and prevented protected health information from leaving the EHR. Key barriers were the lack of control over the Option Grid product developed by EBSCO (Elton B Stephens Company) Health; the periodic Epic upgrades that can result in a pause on new software configurations; and the unforeseen software problems with Option Grid (ie, inability to print the PDA), which delayed the launch of the PDA. Conclusions The integration of PDAs into the Epic EHR system requires a 6-step process and an 18-month timeline. The process required support and prioritization from a clinical champion, guidance from an experienced technologist, and a willing EHR software developer team.

Background Transgender and gender diverse (TGD) persons considering gender affirming therapy have to make many complex medical decisions, potentially without understanding the associated harms or benefits of hormonal and surgical interventions. Further, clinicians are often unaware of how best to communicate information to persons seeking gender affirming therapy. Patient decision aids have been developed to provide evidence-based information as a way to help people make decisions in collaboration with their clinicians. It is unclear whether such tools exist for persons seeking gender affirming therapy. The objective of our systematic review is to search for and determine the quality of any existing patient decision aids developed for TGD persons considering gender affirming therapy, and the outcomes associated with their use. Methods We adapted a search strategy for databases using two key concepts "decision support intervention/patient decision aid" and "transgender". We also conducted a brief online search of Google and abstracts from relevant conferences to identify any tools not published in the academic literature. Following study selection and data extraction, we used the International Patient Decision Aid Standards instrument (IPDASi) to assess the quality of patient decision aids, and the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) checklist to assess the quality of evaluations. Results We identified 762 studies; none were identified from Google or conference content. One tool met our inclusion criteria: an online, pre-encounter patient decision aid for transmasculine genital gender-affirming surgery developed in Amsterdam, translated in English and Dutch. The tool met all the IPDASi qualifying criteria, and scored a 17/28 on the certification criteria, and 57/112 on the quality criteria. The efficacy of the patient decision aid has not been evaluated. Conclusions Despite multiple decisions required for gender affirming therapies, only one patient decision aid has been developed for transmasculine genital reconstruction. Further research is required to develop patient decision aids for the multiple decision points along the gender affirming journey.

Item does not contain fulltext OBJECTIVE: Assess the effect of pictorial health information on patients' and consumers' health behaviors and outcomes, evaluate these effects in lower health literacy populations, and examine the attributes of the interventions. METHODS: We included randomized controlled trials (RCTs) that assessed the effect of pictorial health information on patient and consumer health behaviors and outcomes. We conducted a meta-analysis of RCTs that assessed knowledge/understanding, recall, or adherence, and a subgroup analysis of those outcomes on lower health literacy populations. We narratively reviewed characteristics of pictorial health interventions that significantly improved outcomes for lower health literacy populations. RESULTS: From 4160 records, we included 54 RCTs (42 in meta-analysis). Pictorial health information moderately improved knowledge/understanding and recall overall, but largely increased knowledge/understanding for lower health literacy populations (n = 13), all with substantial heterogeneity. Icons with few words may be most helpful in conveying health information. CONCLUSION: Our results support including pictures in health communication to improve patient knowledge. Our results should be interpreted with caution considering the significant heterogeneity of the meta-analysis outcomes. PRACTICE IMPLICATIONS: Future research should assess which types and characteristics of pictures that best convey health information and are most useful and the implementation and sustainability in healthcare contexts. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018084743.

BackgroundPeople often use affective forecasts, or predictions about how a decision will make them feel, to guide medical and health decision making. However, these forecasts are susceptible to biases and inaccuracies that can have consequential effects on decision making and health.PurposeA meta-analysis was performed to determine the effectiveness of intervening to address affective forecasting as a means of helping patients make better health-related choices.MethodsWe included between-subjects experimental and intervention studies that targeted variables related to affective forecasting (e.g., anticipated regret, anticipated affect) as a means of changing health behaviors or decisions. We determined the overall effect of these interventions on targeted affective constructs and behavioral outcomes, and whether conceptual and methodological factors moderated these effects.ResultsA total of 133 independent effect sizes were identified from 37 publications (N = 72,020). Overall, affective forecasting interventions changed anticipated regret, d = 0.24, 95% confidence interval (CI) (0.15, 0.32), p < .001, behavior, d = 0.29, 95% CI (0.13, 0.45), p < .001, and behavioral intentions, d = 0.19, 95% CI (0.11, 0.28), p < .001, all measured immediately postintervention. Interventions did not change anticipated positive and negative affect, and effects on intentions and regret did not extend to follow-up time points, ps > .05. Generally, effects were not moderated by conceptual model, intervention intensity, or behavioral context.ConclusionsAffective forecasting interventions had a small consistent effect on behavioral outcomes regardless of intervention intensity and conceptual framework, suggesting such constructs are promising intervention targets across several health domains.

Background Implementing patient decision aids in clinic workflow has proven to be a challenge for healthcare organizations and physicians. Our aim was to determine the organizational strategies, motivations, and facilitating factors to the routine implementation of Option Grid™ encounter decision aids at two independent settings. Method Case studies conducted by semi-structured interview, using the Normalization Process Theory (NPT) as a framework for thematic analysis. Twenty three interviews with physicians, nurses, hospital staff and stakeholders were conducted at: 1) CapitalCare Medical Group in Albany, New York; 2) HealthPartners Clinics in Minneapolis, Minnesota. Results ‘Coherent’ motivations were guided by financial incentives at CapitalCare, and by a ‘champion’ physician at HealthPartners. Nurses worked ‘collectively’ at both settings and played an important role at sites where successful implementation occurred. Some physicians did not understand the perceived utility of Option Grid™, which led to varying degrees of implementation success across sites. The appraisal work (reflexive monitoring) identified benefits, particularly in terms of information provision. Physicians at both settings, however, were concerned with time pressures and the suitability of the tool for patients with low levels of health literacy. Conclusion Although both practice settings illustrated the mechanisms of normalization postulated by the theory, the extent to which Option Grid™ was routinely embedded in clinic workflow varied between sites, and between clinicians. Implementation of new interventions will require attention to an identified rationale (coherence), and to the collective action, cognitive participation, and assessment of value by organizational members of the organization. Electronic supplementary material The online version of this article (doi:10.1186/s12911-017-0517-2) contains supplementary material, which is available to authorized users.

Objective To user-test graphical display formats (icon arrays, pie, bar, and line charts) to identify preferred formats and metrics (‘probability of death or stroke’ or ‘proportion of time lived without death or stroke’) in order to display time-dependent risks of stroke or death for three carotid stenosis treatments: endarterectomy (surgery), stenting, and medical therapy. Methods Iterative cycles of semi-structured interviews with patients recruited from a Vascular Clinic. Results A total of 27 patients (mean age = 68; range: 50–85) were interviewed over four cycles. Patients strongly preferred the pie chart over icon arrays, and over bar or line graphs. The preference was based on patient recognition of the time-based increase in risk for stroke or death for treatment options. Patients preferred data presented as probabilities instead of the proportion of time lived. We did not assess patients’ understanding. Conclusion Patients preferred the pie chart formats and reported better realization that risks increase with time for each option and that tradeoffs exist when surgery has a higher short-term risk than medical therapy. Practice implications There remains debate on how best to convey time-dependent risk information to patients, especially where low literacy and numeracy might exist.

Context No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. Objectives The objective of the study was to develop the consideRATE questions. Methods This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to identify the elements of care most important to patients (Phase 1). We refined items based on cognitive interviews with patients, families, and clinicians (Phase 2). We piloted the measure with patients and families (Phase 3). Results Phase 1 resulted in seven questions addressing the following elements: 1) care team attention to patients' physical symptoms, 2) emotional symptoms, 3) environment of care, 4) respect for patients' priorities, 5) communication about future plans, 6) communication about financial and similar affairs, and 7) communication about illness trajectory. Phase 2 participants included eight patients, eight family members, and seven clinicians. We added an open-text comment option. We did not identify any other issues that were important enough to participants to include. Response choices ranged from one (very bad) to four (very good), with a not applicable option (does not apply). Phase 3 involved 15 patients and 16 family members and demonstrated the acceptability of the consideRATE questions. Most reported that the questions were not distressing, disruptive, or confusing. Completion time averaged 2.4 minutes (range 1–5). Conclusion Our brief patient-reported serious illness experience measure is based on what matters most to patients, families, and clinicians. It was acceptable to patients and families in a regional sample. It has promise for use in clinical settings.

Background True allergy to penicillin is rare, despite the high frequency with which it is reported. While most patients reporting penicillin allergy are not prone to anaphylaxis, it is not currently known what percentage of these patients will tolerate dose challenges of penicillin-based antibiotics. This review aims to determine the rate of tolerance in patients reporting penicillin allergy when challenged with penicillin-based antibiotics. Methods We searched MedLine, Embase, and Cochrane Library for publications with English language translations between the years 2000 and 2017. We included randomized controlled trials, quasi-experimental, and observational studies of participants reporting penicillin allergy who received at least one systemic dose of a penicillin in the form of a drug challenge. At least 2 independent reviewers extracted data from included studies and assessed the quality of each included study. To generate primary outcome data, we calculated a summary estimate rate of penicillin tolerance from a pooled proportion of participants receiving penicillin with no adverse effects. Results Initial literature search yielded 2945 studies, of which 23 studies were ultimately included in our review; 5056 study participants with reported history of penicillin allergy were challenged with a penicillin. After weighting for study sample size, a pooled average of 94.4% (95% confidence interval, 93.7%-95%) of participants tolerated the dose challenge without any adverse reaction. Conclusion Misrepresented penicillin allergy drives unnecessary use of alternative antibiotics, which may be less effective, more toxic, and more expensive than using penicillin. In addressing the problem of penicillin allergy over-diagnosis, evaluation should go beyond risk for type 1 hypersensitivity. Our data suggest that 94.4% of 5056 participants with reported penicillin allergy determined to be clinically appropriate for allergy evaluation tolerated repeat administration of penicillin-based antibiotics without any adverse reactions. This review generates meaningful information useful to clinical predictive analytics, in evaluating and managing patients with a reported history of penicillin allergy.

Introduction. Breast cancer is the second most common malignancy in women. The Decision Quality Instrument (DQI) measures the extent to which patients are informed and involved in breast surgery decisions and receive treatment that aligns with their preferences. There are limited data on the performance of the DQI in women of lower socioeconomic status (SES). Our aims were to 1) examine (and if necessary adapt) the readability, usability, and acceptability of the DQI and 2) explore whether it captures factors important to breast cancer surgery decisions among women of lower SES (relevance). Methods. We conducted semistructured cognitive interviews with women of lower SES (based on insurance status, income, and education) who had completed early-stage breast cancer treatments at three cancer centers. We used a two-step thematic analysis with dual independent coding. The study team (including Patient Partners and a Community Advisory Board) reviewed and refined suggested changes. The revised DQI was presented in two focus groups of breast cancer survivors. Results. We conducted 39 interviews. Participants found most parts of the DQI to be helpful and easy to understand. We made the following suggested changes: 1) added a glossary of key terms, 2) added two answer choices and an open text question in the goals and concerns subscale, 3) reworded the treatment intention question, and 4) revised the knowledge subscale instructions since several women disliked the wording and were unsure of what was expected. Discussion. The readability, usability, acceptability, and relevance of a measure that was primarily developed and validated in women of higher SES required adaptation for optimal use by women of lower SES. Further research will test these adaptations in lower SES populations.

BACKGROUND Randomized trials of Web-based decision aids for prostate-specific antigen (PSA) testing indicate that these interventions improve knowledge and reduce decisional conflict. However, we do not know about these tools’ impact on people who spontaneously use a PSA testing patient decision aid on the internet. OBJECTIVE The objectives of this study were to (1) determine the impact of the Web-based PSA Option Grid patient decision aid on preference shift, knowledge, and decisional conflict; (2) identify which frequently asked questions (FAQs) are associated with preference shift; and (3) explore the possible relationships between these outcomes. METHODS Data were collected between January 1, 2016, and December 30, 2017. Users who accessed the Web-based, interactive PSA Option Grid were provided with 3 options: have a PSA test, no PSA test, or unsure. Users first declared their initial preference and then completed 5 knowledge questions and a 4-item (yes or no) validated decisional conflict scale (Sure of myself, Understand information, Risk-benefit ratio, Encouragement; SURE). Next, users were presented with 10 FAQs and asked to identify their preference for each question based on the information provided. At the end, users declared their final preference and completed the same knowledge and decisional conflict questions. Paired sample t tests were employed to compare before and after knowledge and decisional conflict scores. A multinomial regression analysis was performed to determine which FAQs were associated with a shift in screening preference. RESULTS Of all the people who accessed the PSA Option Grid, 39.8% (186/467) completed the interactive journey and associated surveys. After excluding 22 female users, we analyzed 164 responses. At completion, users shifted their preference to “not having the PSA test” (43/164, 26.2%, vs 117/164, 71.3%; P CONCLUSIONS Unprompted use of the interactive PSA Option Grid leads to preference shift, increased knowledge, and reduced decisional conflict, which confirms the ability of these tools to influence decision making, even when used outside clinical encounters.

Background: Randomized trials of Web-based decision aids for prostate-specific antigen (PSA) testing indicate that these interventions improve knowledge and reduce decisional conflict. However, we do not know about these tools’ impact on people who spontaneously use a PSA testing patient decision aid on the internet. Objective: The objectives of this study were to (1) determine the impact of the Web-based PSA Option Grid patient decision aid on preference shift, knowledge, and decisional conflict; (2) identify which frequently asked questions (FAQs) are associated with preference shift; and (3) explore the possible relationships between these outcomes. Methods: Data were collected between January 1, 2016, and December 30, 2017. Users who accessed the Web-based, interactive PSA Option Grid were provided with 3 options: have a PSA test, no PSA test, or unsure. Users first declared their initial preference and then completed 5 knowledge questions and a 4-item (yes or no) validated decisional conflict scale (Sure of myself, Understand information, Risk-benefit ratio, Encouragement; SURE). Next, users were presented with 10 FAQs and asked to identify their preference for each question based on the information provided. At the end, users declared their final preference and completed the same knowledge and decisional conflict questions. Paired sample t tests were employed to compare before and after knowledge and decisional conflict scores. A multinomial regression analysis was performed to determine which FAQs were associated with a shift in screening preference. Results: Of all the people who accessed the PSA Option Grid, 39.8% (186/467) completed the interactive journey and associated surveys. After excluding 22 female users, we analyzed 164 responses. At completion, users shifted their preference to “not having the PSA test” (43/164, 26.2%, vs 117/164, 71.3%; P

IntroductionMost health information is verbal or written, yet words alone may not be the most effective way to communicate health information. Lower health literacy is prevalent in the US and is linked to limited understanding of one’s medical condition and treatment. Pictures increase comprehension, recall, adherence and attention in health settings. This is called pictorial superiority. No systematic review has examined the impact of pictorial health information among patients and consumers, including those with lower health literacy.Methods and analysisThis systematic review and meta-analysis will assess the characteristics and effectiveness of pictorial health information on patient and consumer health behaviours and outcomes, as well as differentially among individuals of lower literacy/lower health literacy. We will conduct a systematic search across selected databases, as well as grey literature, from inception until June 2018. We will include randomised controlled trials in all languages with all types of participants that assess the effect of pictorial health information on patients’ and consumers’ health behaviours and outcomes. Two independent reviewers will conduct the primary screening of articles and data extraction for the selected articles with a third individual available to resolve conflicts. We will assess the quality of all included studies using the Cochrane risk of bias tool. We will combine all selected studies and do a test of heterogeneity. If there is sufficient homogeneity, we will pool studies into a meta-analysis. Independent of the heterogeneity of included studies, we will also conduct a narrative synthesis.Ethics and disseminationNo ethics approval is required. The results will be published in a peer-reviewed journal and presented at relevant conferences.PROSPERO registration numberCRD42018084743.

Background. Randomized trials have shown that patient decision aids can modify users’ preferred healthcare options, but research has yet to identify the attributes embedded in these tools that cause preferences to shift. Objectives. The aim of this study was to investigate people’s preferences as they used decision aids for 5 health decisions and, for each of the following: 1) determine if using the interactive Option Grid led to a pre–post shift in preferences; 2) determine which frequently asked questions (FAQs) led to preference shifts; 3) determine the FAQs that were rated as the most important as users compared options. Methods. Interactive Option Grid decision aids enable users to view attributes of available treatment or screening options, rate their importance, and specify their preferred options before and after decision aid use. The McNemar–Bowker paired test was used to compare stated pre–post preferences. Multinomial logistic regressions were conducted to investigate possible associations between covariates and preference shifts. Results. Overall, 626 users completed the 5 most-used tools: 1) Amniocentesis test: yes or no? ( n = 73); 2) Angina: treatment options ( n = 88); 3) Breast cancer: surgical options ( n = 265); 4) Prostate Specific Antigen (PSA) test: yes or no? ( n = 82); 5) Statins for heart disease risk: yes or no? ( n = 118). The breast cancer, PSA, and statins Option Grid decision aids generated significant preference shifts. Generally, users shifted their preference when presented with the description of the available treatment options, and the risk associated with each option. Conclusion. The use of decision aids for some, but not all health decisions, was accompanied by a shift in user preferences. Users typically valued information associated with risks, and chose more risk averse options after completing the interactive tool.

Background Research on the implementation of patient decision aids to facilitate shared decision making in clinical settings has steadily increased across Western countries. A study which implements decision aids and measures their impact on shared decision making has yet to be conducted in the Eastern part of Europe. Objective To study the use of Option GridTM patient decision aids in a sample of Grupa LUX MED clinics in Warsaw, Poland, and measure their impact on shared decision making. Method We conducted a pre-post interventional study. Following a three-month period of usual care, clinicians from three Grupa LUX MED clinics received a one-hour training session on how to use three Option GridTM decision aids and were provided with copies for use for four months. Throughout the study, all eligible patients were asked to complete the three-item CollaboRATE patient-reported measure of shared decision making after their clinical encounter. CollaboRATE enables patients to assess the efforts clinicians make to: (i) inform them about their health issues; (ii) listen to ‘what matters most’; (iii) integrate their treatment preference in future plans. A hierarchical logistic regression model was performed to understand which variables had an effect on CollaboRATE. Results 2,048 patients participated in the baseline phase; 1,889 patients participated in the intervention phase. Five of the thirteen study clinicians had a statistically significant increase in their CollaboRATE scores (p Conclusion The implementation of Option GridTM helped some clinicians practice shared decision making as reflected in CollaboRATE scores, but most clinicians did not have a significant increase in their scores. Our study indicates that the effect of these interventions may be dependent on clinic contexts and clinician engagement.

Contains fulltext : 174289.pdf (Publisher’s version ) (Open Access) INTRODUCTION: Shared decision making (SDM) is a goal of modern medicine; however, it is not currently embedded in routine care. Barriers include cliniciansaeuro attitudes, lack of knowledge and training and time constraints. Our goal is to support the development and delivery of a robust SDM curriculum in medical education. Our objective is to assess undergraduate medical studentsaeuro knowledge of and attitudes towards SDM in four countries. METHODS AND ANALYSIS: The first phase of the study involves a web-based cross-sectional survey of undergraduate medical students from all years in selected schools across the United States (US), Canada and undergraduate and graduate students in the Netherlands. In the United Kingdom (UK), the survey will be circulated to all medical schools through the UK Medical School Council. We will sample students equally in all years of training and assess attitudes towards SDM, knowledge of SDM and participation in related training. Medical students of ages 18 years and older in the four countries will be eligible. The second phase of the study will involve semistructured interviews with a subset of students from phase 1 and a convenience sample of medical school curriculum experts or stakeholders. Data will be analysed using multivariable analysis in phase 1 and thematic content analysis in phase 2. Method, data source and investigator triangulation will be performed. Online survey data will be reported according to the Checklist for Reporting the Results of Internet E-Surveys. We will use the COnsolidated criteria for REporting Qualitative research for all qualitative data. ETHICS AND DISSEMINATION: The study has been approved for dissemination in the US, the Netherlands, Canada and the UK. The study is voluntary with an informed consent process. The results will be published in a peer-reviewed journal and will help inform the inclusion of SDM-specific curriculum in medical education worldwide.

The aim of this paper is to update the previous review on the state of patient and public participation in healthcare in Italy. Policymakers consider patient involvement an important aspect in health care decisions and encourage patients to actively participate in the clinical interaction. Nevertheless, the term shared decision making (SDM) is still not clearly defined. Patient associations promote patient participation in health care decisions. Several experts attended the latest consensus conference about patient engagement to reach a consensus on the definition of SDM. Research regarding SDM in Italy continues to increase with 17 articles published between 2012 and 2017. Researchers have assessed the variables associated with patient involvement and explored the use of the SDM approach in different medical settings. Despite the dedicated SDM initiative, researchers in Italy recognize room for improvement. Work is needed to reach a common language regarding SDM and its mechanisms to implement this approach at the clinical level.

Poly(ADP-ribose) polymerase-1 (PARP-1) and Bcl-2 are emerging as therapeutic targets in various cancers. The former is a DNA repair protein associated with genomic stability and apoptosis, whereas the latter is an antiapoptotic protein having a DNA repair function through inhibition of PARP-1. Because genomic stability is critical for prognosis in B-lymphoblastic leukemia/lymphoma (B-ALL), we studied the expression of PARP-1 and Bcl-2 proteins in patients with B-ALL of different ages and compared the results with cytogenetic data. The PARP-1 protein was overexpressed in about two-thirds (61%) of patients with B-ALL. It had a nuclear location, whereas Bcl-2 protein was cytosolic. Expression of the 2 proteins showed a highly positive correlation (ρ = 0.367; P.001). Overexpression of PARP-1 correlated with a complex karyotype (P = .030), and this correlation remained significant for coexpression of PARP-1 and Bcl-2 proteins (χ(2) = 7.498; P = .024) as well as after exclusion of pediatric patients (n = 9, P = .042). Overexpression of PARP-1 was not significantly more common in diploid versus aneuploid karyotypes (50% versus 59%, P = .610). The PARP-1 protein showed no correlation with specific chromosomal abnormalities associated with prognosis in B-ALL, as defined by the World Health Organization. In conclusion, high expression of the PARP-1 protein among patients with B-ALL is related to a complex karyotype and Bcl-2 positivity. Although these findings require validation in a larger population, the observations will be valuable in planning therapeutic trials (such as of PARP inhibitors and BH3 mimetics).

ObjectivesOur aim was to conduct a systematic review of the literature to determine the impact of patient decision aids (PDA) on patients facing treatment decisions for colorectal cancer.DesignSystematic review.Data sourcesSources included Embase, Medline, Web of Science, CINAHL and the Cochrane Library from inception to June, 20, 2019.Eligibility criteriaWe included randomised controlled trials (RCTs), cohort studies, mixed methods and case series in which a PDA for colorectal cancer treatment was used. Qualitative studies were excluded from our review.Data extraction and synthesisFollowing execution of the search strategy by a medical librarian, two blinded independent reviewers identified articles for inclusion. Two blinded reviewers were also responsible for data extraction, risk of bias and study quality assessments. Any conflict in article inclusion or extraction was resolved by discussion.ResultsOut of 3773 articles identified, three met our inclusion criteria: one RCT, one before-and-after study and one mixed-method study. In these studies, the use of a PDA for colorectal cancer treatment was associated with increased patient knowledge, satisfaction and preparation for making a decision. On quality assessment, two of three studies were judged to be of low quality.ConclusionA paucity of evidence exists on the effect of PDA for colorectal cancer treatment with existing evidence being largely of low quality. Further investigation is required to determine the effect of decision aids for colorectal cancer treatment as well as reasons for the lack of PDA development and implementation in this area.Prospero registration numberCRD42018095153.