Effective Shared Decision-making Research Articles

Disease-modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults.

Shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision-making. Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers. Semi-structured qualitative interviews were conducted with AYAs and their caregivers, and online crowdsourcing was used with SCD providers. Thematic and descriptive content analyses were used to summarize perspectives on decisional needs and supports regarding disease-modifying therapies. Fourteen AYAs (Mage =21years, 57% male, 93% non-Hispanic Black, 79% HbSS), 11 caregivers (80% female, 100% non-Hispanic Black), and 40 healthcare providers (65% female, 65% non-Hispanic White, Myears in practice =14.8years, 75% physicians) participated. Thematic analysis revealed needs related to: decisional conflict, inadequate knowledge, unclear expectations, and inadequate supports and resources. Six forms of support emerged as important for decision-making: establishing an open and trusting patient/family-provider relationship, providing information, accepting ambivalence and unreadiness, supporting implementation of a decision, addressing inadequate health and social services, and promoting adequate social, emotional, and instrumental help. This is the first study to assess decisional needs and supports for AYAs with SCD considering disease-modifying therapies. Additional research is needed to examine which decision supports are the most impactful to promote effective shared decision-making in this population.

Reviewing the art of safe prescription practices: A checklist for the use of psychotropic drugs during pregnancy

Half of the women diagnosed with a mental health condition requiring regular medication have previously given birth to children. A dilemma arises when deciding whether to continue medication to treat the mother’s illness or potentially cease or replace medication in the interests of their child. This study endeavors to examine the challenges associated with prescribing psychotropic medications to pregnant women experiencing mental health disorders. Its primary objective is to furnish a checklist delineating essential considerations for prescribers in such cases. The investigation underscores the pivotal equilibrium required in addressing the mental health of the mother while mitigating risks to the developing fetus. The paper delves into the nuances of decision-making within this framework, highlighting the importance of a collaborative health-care approach coupled with personalized treatment strategies. These strategies may encompass modifications in medication regimens and the incorporation of non-pharmacological interventions. The prescription of psychotropic medications to pregnant women with mental health conditions presents complex challenges and demands consideration. Striking a critical balance is imperative, as it entails managing the mother’s mental health while minimizing potential risks to the developing fetus. The decision-making process is nuanced, influenced by factors such as the teratogenic potential of specific medications, the risk of neonatal withdrawal syndrome, and the potential for adverse outcomes in maternal and fetal health if psychiatric conditions remain untreated. Pre-conception counseling and maternal-fetal medicine services are beneficial tools in navigating this balance. Predictors of the necessity for medication during pregnancy include the patient’s diagnosis, severity of prior episodes, and responsiveness to treatment. The dynamic landscape of pharmaceutical research underscores the importance for prescribers to actively engage with evolving literature, ensuring the provision of accurate and up-to-date advice. Effective shared decision-making is of paramount significance in instilling confidence and assuring the patient.

Clinician use of the Statin Choice Shared Decision-making Encounter Tool in a Major Health System.

Effective shared decision-making (SDM) tools for use during clinical encounters are available, but, outside of study settings, little is known about clinician use of these tools in practice. To describe real-world use of an SDM encounter tool for statin prescribing, Statin Choice, embedded into the workflow of an electronic health record. Cross-sectional study. Clinicians and their statin-eligible patients who had outpatient encounters between January 2020 and June 2021 in Cleveland Clinic Health System. Clinician use of Statin Choice was recorded within the Epic record system. We categorized each patient's 10-year atherosclerotic cardiovascular disease risk into low (< 5%), borderline (5-7.5%), intermediate (7.5-20%), and high (≥ 20%). Other patient factors included age, sex, insurance, and race. We used mixed effects logistic regression to assess the odds of using Statin Choice for statin-eligible patients, accounting for clustering by clinician and site. We generated a residual intraclass correlation coefficient (ICC) to characterize the impact of the clinician on Statin Choice use. Statin Choice was used in 7% of 68,505 eligible patients. Of 1047 clinicians, 48% used Statin Choice with ≥ 1 patient, and these clinicians used it with a median 9% of their patients (interquartile range: 3-22%). In the mixed effects logistic regression model, patient age (adjusted OR per year: 1.04; 95%CI 1.03-1.04) and 10-year ASVCD risk (aOR for 5-7.5% versus < 5% risk: 1.28; 95%CI: 1.14-1.44) were associated with use of Statin Choice. Black versus White race was associated with a lower odds of Statin Choice use (aOR: 0.83; 95%CI: 0.73-0.95), as was female versus male sex (aOR: 0.83; 95%CI: 0.76-0.90). The model ICC demonstrated that 53% of the variation in use of Statin Choice was clinician-driven. Patient factors, including race and sex, were associated with clinician use of Statin Choice; half the variation in use was attributable to individual clinicians.

Dementia Associated Disorders and Cognitive Impairment – The Relationship of Quantitative Multi‐Domain Computerized Cognitive Testing to Patient Centric Perception of Health Literacy

AbstractBackgroundDementia associated diseases (DAD) refers to clinical conditions characterized by progressive cognitive impairment (CI) that interferes with ability to function independently. However, cognitive impairments can vary in degree and combination of cognitive deficits across multiple cognitive domains. Traditional history and cognitive assessments in clinic are insufficient to identify these varied combinations. Therefore, a clinician may be unaware of these variations and impact on patient QOL and decision‐making. Effective quantitative analysis of cognitive function can be obtained in routine care by a validated, examiner‐independent, sensitive, and reliable computerized cognitive assessment battery (CAB‐NT). Patient reported outcomes (PRO) provide information regarding patient perception of ability across clinically relevant concerns. The BRIEF Health Literacy survey (BHL) PRO is used to find the degree to which one can read, understand, exchange, and use health information and resources. Comparison to computerized cognitive testing has not been explored in this population.MethodRetrospective cross‐sectional analysis of patients with DAD (PwDAD) who completed both PRO BHL and CAB in routine care on the same day. CAB‐NT included 7 cognitive domains: memory (Mem), executive function (Exe), attention (Att), information processing speed (Inf), visual‐spatial (Vis), verbal function (Ver), motor skills (Mot) and global cognitive summary score (GCS). Linear regression analysis was explored with significance (p&lt;0.05).Result329 PwDaD, average age of 70±13 years, 63.2% female. Linear regression was used to analyze trends between BHL and CAB. Significant correlations (p = 0.05) were found for CAB‐NT vs: BHL: GCS‐r = 0.42, Vis‐r = 0.36, Mem‐r = 0.31, Exe‐r = 0.39, Ver‐r = 0.25, Mot‐r = 0.22, Inf‐r = 0.32, and Att‐r = 0.28. One‐way ANOVA was performed between BHL (inadequate, marginal, and adequate) and the cognitive domains of the CAB‐NT. Significant differenced (p = 0.05) were found between the three BHL groups within each cognitive domain.ConclusionPatient centric DAD performances on CAB‐NT is related to patient‐reported health literacy. The more impaired the CAB‐NT scores, the poorer patient‐perceived health literacy reported. Patient centric recognition of CI can enhance clinician’s recognition of those people who may require additional information for health‐care decisions or incorporate health‐care proxy for effective shared decision making in routine care. Incorporation of this patient centric information can potentially lead to improved outcomes and satisfaction.

Supporting effective shared decision-making in surgical context: Why framing of choices matters for high-risk patients and clinicians.

In the context of high-risk surgery, shared decision-making (SDM) is important. However, the effectiveness of SDM can be hindered by misalignment between patients and clinicians in their expectations of postoperative outcomes. This study investigated the extent and the effects of this misalignment, as well as its amenability to interventions that encourage perspective-taking. Lay participants with a Charlson Comorbidity Index of ≥4 (representing patients) and surgeons and anaesthetists (representing doctors) were recruited. During an online experiment, subjects in both groups forecast their expectations regarding short-term (0, 1 and 3 months after treatment) and long-term (6, 9 and 12 months after treatment) outcomes of different treatment options for one of three hypothetical clinical scenarios - ischaemic heart disease, colorectal cancer or osteoarthritis of the hip - and then chose between surgical or non-surgical treatment. Subjects in both groups were asked to consider the scenarios from their own perspective (Estimation task), and then to adopt the perspective of subjects in the other study group (Perspective task). The decisions of all participants (surgery vs. non-surgical alternative) were analysed using binomial generalized linear mixed models. In total, 55 lay participants and 54 doctors completed the online experiment. Systematic misalignment in expectations between high-risk patients and doctors was observed, with patients expecting better surgical outcomes than clinicians. Patients forecast a significantly higher likelihood of engaging in normal activities in the long term (β = -1.09, standard error [SE] = 0.20, t = -5.38, p < 0.001), a lower likelihood of experiencing complications in the long term (β = 0.92, SE = 0.21, t = 4.45, p < 0.001) and a lower likelihood of experiencing depression in both the short term and the long term (β = 1.01, SE = 0.19, t = 5.38, p < 0.001), than did doctors. Compared with doctors, patients forecast higher estimates of experiencing complications in the short term when a non-surgical alternative was selected (β = -0.91, SE = 0.26, t = -3.50, p = 0.003). Despite this misalignment, in both groups surgical treatment was strongly preferred (estimation task: 88.7% of doctors and 80% of patients; perspective task: 82.2% of doctors and 90.1% of patients). When high-risk surgery is discussed, a non-surgical option may be viewed as 'doing nothing', hence reducing the sense of agency and control. This biases the decision-making process, regardless of the expectations that doctors and patients might have about the outcomes of surgery. Therefore, to improve SDM and to increase the agency and control of patients regarding decisions about their care, we advocate framing the non-surgical treatment options in a way that emphasizes action, agency and change.

Patients' Perspectives Regarding Generator Exchanges of Implantable Cardioverter Defibrillators.

Shared decision-making is mandated for patients receiving primary prevention implantable cardioverter defibrillators (ICDs). Less attention has been paid to generator exchange decisions, although at the time of generator exchange, patients' risk of sudden cardiac death, risk of procedural complications, quality of life, or prognosis may have changed. This study was designed to explore how patients make ICD generator exchange decisions. Emory Healthcare patients with primary prevention ICDs implanted from 2013 to 2021 were recruited to complete in-depth interviews exploring perspectives regarding generator exchanges. Interviews were conducted in 2021. Transcribed interviews were qualitatively coded using multilevel template analytic methods. To investigate benefit thresholds for pursuing generator exchanges, patients were presented standard-gamble type hypothetical scenarios where their ICD battery was depleted but their 5-year risk of sudden cardiac death at that time varied (10%, 5%, and 1%). Fifty patients were interviewed; 18 had a prior generator exchange, 16 had received ICD therapy, and 17 had improved left ventricular ejection fraction. As sudden cardiac death risk decreased from 10% to 5% to 1%, the number of participants willing to undergo a generator exchange decreased from 48 to 42 to 33, respectively. Responses suggest that doctor's recommendations are likely to substantially impact patients' decision-making. Other drivers of decision-making included past experiences with ICD therapy and device implantation, as well as risk aversion. Therapeutic inertia and misconceptions about ICD therapy were common and represent substantive barriers to effective shared decision-making in this context. Strong defaults may exist to continue therapy and exchange ICD generators. Updated risk stratification may facilitate shared decision-making and reduce generator exchanges in very low-risk patients, especially if these interventions are directed toward clinicians. Interventions targeting phenomena such as therapeutic inertia may be more impactful and warrant exploration in randomized trials.

DS20 Longevity of patients following Mohs micrographic surgery for the treatment of basal cell carcinomas

Abstract Basal cell carcinomas (BCCs) are slow-growing, nonaggressive skin cancers (metastatic rate &amp;lt; 0.1%). They are common, especially in the elderly population (Sreekantaswamy S, Endo J, Chen A et al. Aging and the treatment of basal cell carcinoma. Clin Dermatol 2019; 37:373–8). Basal cell carcinoma guidelines recommend Mohs micrographic surgery (MMS) for primary high-risk BCCs and high-risk recurrent BCCs suitable for surgery (Mosterd K, Krekels GA, Nieman FH et al. Surgical excision vs. Mohs’ micrographic surgery for primary and recurrent basal-cell carcinoma of the face: a prospective randomised controlled trial with 5-years’ follow-up. Lancet Oncol 2008; 9:1149–56). Mohs micrographic surgery allows for the removal of the tumour in stages with rapid processing of specimens using frozen section analysis. Complete surgical margins are analysed in near real time. It has, compared with other treatments, lower recurrence rates (&amp;lt; 1%) and often better cosmetic outcomes, but it has higher costs and longer operating times (Sreekantaswamy et al.; Mosterd et al.). Factors that need to be considered when deciding on treatment options are comorbidities, performance status and the risk of causing harm if left untreated. The term ‘lag time to benefit’ entails not only looking at how effective a specific treatment is, but also when a treatment will become beneficial in relation to the patient’s life expectancy (Sreekantaswamy et al.). In patients with a limited life expectancy, nonsurgical treatment can be an appropriate and possibly even the preferred choice (Sreekantaswamy et al.). A retrospective single-centre review of all available BCC MMS patient data from January 2011 to December 2017 was performed. Patients from out of area or with tumour syndromes were excluded. Survival rates following MMS were recorded. Of the 2518 patients reviewed, 1905 met the inclusion criteria. In total, 357 (18.7%) were aged ≥ 80 years; at 5 years post-MMS, 24% and 30.7% of the 80–89-year-old females and males had died, respectively, suggesting they had a higher life expectancy than the same general demographic. It would be interesting to compare these results with survival rates following other treatments, such as conventional excision or curettage and cautery. Limitations include missing documentation (n = 258) and not all internal logs being tracked appropriately (19.6% were not tracked, n = 615/3133). We propose a patient-centred, tailored approach to the treatment of BCCs. Based on the fundamental ethical principles, informed and effective shared decision-making is vital; patient values, preferences and experiences should also be considered.

#6656 PATIENTS' PERSPECTIVES ON HAEMODIALYSIS ACCESS: A QUANTITATIVE STUDY

Abstract Background and Aims Vascular access is an essential requirement for haemodialysis (HD). There is strong evidence that an arteriovenous fistula (AVF) is preferable to access via a central venous catheter (CVC) for long term haemodialysis, yet many patients opt for access via a CVC. We performed a cross-sectional study to assess patient preferences regarding vascular access. The quantitative component of this work is presented here. Method Questionnaires were administered to patients attending dialysis at four sites in the East Anglia region of the UK (n = 380). Additional patient data was collected from medical records. Analysis was performed using the R software. Results 63% (n = 238) of patients completed the survey. The median age of respondents was 75 years (range 24-95 years), 64% were male (n = 153), the median length of time on dialysis was 23 months, and 64% (n = 152) were using an AVF. There was no significant association between age and form of access (p = 0.11). 65% of respondents believed that an AVF was the best access route for health, 10% believed a CVC was the best route, and 25% were unsure. This was not significantly affected by the participant's access route at the time of the study (p = 0.91) or self-reported pre-dialysis education (p = 0.09). Respondents who believed that the health professionals caring for them preferred AVFs were significantly more likely to believe that AVFs were best for their health (p &amp;lt; 0.0001 for both medical and nursing staff preference). However, overall, there was uncertainty about the preferred haemodialysis access of health professionals, with 40% and 47% of respondents unsure regarding the preference of medical and nursing staff, respectively. These patients were also more likely to respond as ‘unsure’ as to which access type was better for their health. We asked participants to rate 16 possible concerns they may have about access on a 1-9 scale (Figure 1). The most highly rated concerns were related to sleeping, pain, bleeding and access longevity, each receiving a rating of ≥2 in nearly 40% of participants. Notably, infection risk was rated as the lowest priority concern, only receiving a rating of ≥2 in 5% of participants. Concerns were similar regardless of the active form of access. 63% (n = 54) of respondents with a CVC would not consider changing to an AVF. The decision to switch from CVC to AVF was not significantly associated with age (p = 0.69), or the number of AVF operations a patient had undergone in the six years prior to the study year (p = 0.94). The decision was also not associated with respondent belief regarding the best access type for health (p = 0.84). Differences in access concerns could not significantly explain the decision to or not to switch from CVC to AVF. However, analysis of free-text responses identified peer experiences as a strong influence on the decision to switch. Conclusion Most HD patients are aware that an AVF is associated with better health outcomes than a CVC. Despite this, a large proportion of patients dialysing via a CVC do not wish to change their access, with many reporting concerns of bleeding, needling pain, and difficulty sleeping. Infection risk was not a consideration for most patients. Additionally, we found that patients reported significant uncertainty about doctor and nurse preference for haemodialysis access. These findings are mirrored by analysis of the free text responses to the questions in this study. In particular, peer experiences were a significant determinant of the decision to switch from a CVC to AVF. The findings suggest that when we discuss vascular access with patients, a broad scope of topics should be addressed, beyond health outcomes alone, to allow for effective shared decision making. They also suggest that there is room to improve the communication of our perspectives as healthcare workers, both from a nursing and medical perspective.

Improving Residents’ Knowledge and Interest in Outpatient Neurology through an Interactive, Discussion-Based, Patient-Centered Didactic Series (P2-2.006)

<h3>Objective:</h3> Our interactive, discussion-based, patient-centered didactic series aimed to (1) improve residents’ understanding of the roles and responsibilities of outpatient neurologists; (2) share patients’ perspectives of living with chronic neurological disease; and (3) increase residents’ understanding of effective shared decision making (SDM). <h3>Background:</h3> Neurology residency training is inpatient focused, underemphasizing outpatient disorders. We implemented a novel didactic series of facilitated discussions between a patient and their outpatient neurologist to expose residents to outpatient careers, topics, and management. <h3>Design/Methods:</h3> Residents in a large academic neurology program participated. Bimonthly sessions were held in-person in 2016 (n=6) and virtually on Zoom in 2020 (n=6). Each 60-minute session focused on one disorder. The format was conversational and moderated by a course director. Discussion points were pre-planned, focusing on patients’ experiences living with chronic neurological disease and SDM. Residents, faculty, and patients were surveyed for program evaluation. <h3>Results:</h3> A majority of residents, all faculty, and all patients agreed the series met its objectives. Residents and faculty found the format as effective as traditional lectures, without added burden for faculty preparation. The unique format also allowed for instruction on topics rarely covered in lectures. Residents indicated diseases covered were underrepresented in their direct patient care experiences in training. 48% of residents reported increased interest in outpatient careers. Qualitative comments identified hearing patients’ perspectives as the most valuable component. Patients felt sharing their experiences would help physicians better understand their illness and care for future patients; all would participate again. <h3>Conclusions:</h3> Our series educated residents effectively about underrepresented topics in outpatient neurology. Hearing patients’ perspectives was instrumental in achieving our learning objectives. Key factors for successful implementation included a faculty moderator, pre-planned questions, and summary slides emphasizing key learning points. Future work can evaluate if increased knowledge and interest translates into sustained behavior change in residents and more residents choosing outpatient careers. <b>Disclosure:</b> Dr. Gheihman has nothing to disclose. Dr. Cho has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Horizon Therapeutics. Dr. Cho has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for NIH. The institution of an immediate family member of Dr. Cho has received research support from NIH. Dr. Cho has received publishing royalties from a publication relating to health care. Dr. Milligan has nothing to disclose. Dr. Doughty has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Argenx. Dr. Doughty has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Doughty has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Adler¦Cohen¦Harvey¦Wakeman¦Guekguezian, LLP. Dr. Doughty has received research support from NINDS/NeuroNEXT. Dr. Doughty has received personal compensation in the range of $500-$4,999 for serving as a Grant Advisory Board Member with Dysimmune Diseases Foundation. Dr. Doughty has received personal compensation in the range of $500-$4,999 for serving as a CME Lecturer with Oakstone Publishing.

Is information provided within chronic subdural haematoma education resources adequate? A scoping review.

Chronic subdural haematoma (CSDH) is becoming increasingly prevalent, due to an aging population with increasing risk factors. Due to its variable disease course and high morbidity, patient centred care and shared decision making are essential. However, its occurrence in frail populations, remote from specialist neurosurgeons who currently triage treatment decisions, challenges this. Education is an important component of enabling shared decisions. This should be targeted to avoid information overload. However, it is unknown what this should be. Our objectives were to conduct analysis of the content of existing CSDH educational materials, to inform the development of patient and relative educational resources to facilitate shared decision making. A literature search was conducted (July 2021) of MEDLINE, Embase and grey literature, for all self-specified resources on CSDH education, and narrative reviews. Resources were classified into a hierarchical framework using inductive thematic analysis into 8 core domains: Aetiology, epidemiology and pathophysiology; natural history and risk factors; symptoms; diagnosis; surgical management; nonsurgical management; complications and recurrence; and outcomes. Domain provision was summarised using descriptive statistics and Chi-squared tests. 56 information resources were identified. 30 (54%) were resources designed for healthcare professionals (HCPs), and 26 (46%) were patient-orientated resources. 45 (80%) were specific to CSDH, 11 (20%) covered head injury, and 10 (18%) referenced both acute and chronic SDH. Of 8 core domains, the most reported were aetiology, epidemiology and pathophysiology (80%, n = 45) and surgical management (77%, n = 43). Patient orientated resources were more likely to provide information on symptoms (73% vs 13%, p<0.001); and diagnosis (62% vs 10%, p<0.001) when compared to HCP resources. Healthcare professional orientated resources were more likely to provide information on nonsurgical management (63% vs 35%, p = 0.032), and complications/recurrence (83% vs 42%, p = 0.001). The content of educational resources is varied, even amongst those intended for the same audience. These discrepancies indicate an uncertain educational need, that will need to be resolved in order to better support effective shared decision making. The taxonomy created can inform future qualitative studies.

Curriculum Innovations: Improving Residents' Knowledge and Interest in Outpatient Neurology Through an Interactive Patient-Centered Didactic Series

Introduction and Problem Statement Neurology residency training is inpatient focused, underemphasizing outpatient disorders. We implemented a novel didactic series of facilitated discussions between a patient and their outpatient neurologist to expose residents to outpatient topics and management skills. Objectives (1) Improve residents' understanding of the roles and responsibilities of the neurologist in the outpatient setting; (2) share with residents the patient's perspective of living with chronic neurologic disease; and (3) improve residents' understanding of what effective shared decision making entails. Methods and Curriculum Description Residents in an academic neurology program participated. Six bimonthly, 1-hour sessions were piloted in person in 2016; participants were surveyed after each session to refine the format. The formal program (6 sessions) was held virtually in 2020–2021. Each session focused on 1 disorder. The format was conversational and moderated by a course director. Discussion points were preplanned and focused on patients' experiences living with chronic neurologic disease and shared decision making. Residents, participating faculty, and patients were surveyed at the conclusion of the 2020–2021 series to evaluate its effectiveness. Results and Assessment Data Fifty-five survey responses were completed by residents during the pilot. Only 12 residents (22%) indicated that they longitudinally followed more than 1 patient with the condition represented in the session. Qualitative comments from residents and faculty (n = 5) identified that hearing the patient perspective was the most valuable component of the series. Twenty-one of 54 residents evaluated the final program. A majority of residents, 100% of faculty (n = 6), and 100% of patients (n = 6) felt that the program's 3 learning objectives were met. Forty-eight percent of residents reported increased interest in outpatient careers. Faculty agreed that the session format was as effective as traditional lecture, without added preparation burden. Patients felt that sharing their experiences would help physicians better understand their illness and improve care for future patients; all would participate again. Discussion and Lessons Learned Our series effectively educated residents about underrepresented outpatient topics. Hearing patients' perspectives was instrumental in achieving our learning objectives. Key factors for successful implementation included a faculty moderator, preplanned questions, and teaching slides to emphasize key learning points. Future work should evaluate whether residents' increased knowledge and interest translates into sustained behavior change and more residents selecting outpatient careers.

Patient-provider communication while using a clinical decision support tool: explaining satisfaction with shared decision making for mammography screening

BackgroundClinical decision aids may support shared decision-making for screening mammography. To inform shared decision-making between patients and their providers, this study examines how patterns of using an EHR-integrated decision aid and accompanying verbal patient-provider communication predict decision-making satisfaction.MethodsFor 51 patient visits during which a mammography decision aid was used, linguistic characteristics of patient-provider verbal communication were extracted from transcribed audio recordings and system logs automatically captured uses of the decision aid. Surveys assessed patients’ post-visit decisional satisfaction and its subcomponents. Linear mixed effects models assessed how patients’ satisfaction with decision making was related to patterns of verbal communication and navigation of the decision aid.ResultsThe results indicate that providers’ use of quantitative language during the encounter was positively associated with patients’ overall satisfaction, feeling informed, and values clarity. Patients’ question-asking was negatively associated with overall satisfaction, values clarity, and certainty perception. Where system use data indicated the dyad had cycled through the decision-making process more than once (“looping” back through pages of the decision aid), patients reported improved satisfaction with shared decision making and all subcomponents. Overall satisfaction, perceived support, certainty, and perceived effectiveness of decision-making were lowest when a high number of navigating clicks occurred absent “looping.”ConclusionsLinguistic features of patient-provider communication and system use data of a decision aid predict patients’ satisfaction with shared decision making. Our findings have implications for the design of decision aid tools and clinician training to support more effective shared decision-making for screening mammography.

Support staff liaising effectively with family caregivers: Findings from a co-design event and recommendation for a staff training resource.

A high proportion of people with intellectual disabilities (ID) and autism spectrum disorder (ASD) are prescribed psychotropic medications such as antipsychotics, antidepressants etc., outside their licensed indications, primarily for the management of behaviors that challenge (BtC) in the absence of a psychiatric disorder. Examples of BtC are aggression to people and property or self-injury. BtC could be challenging to manage and may cause the person with ID/ASD and their caregivers distress, breakdown of community placement leading to hospitalization, and restrictive practices such as restraint or inappropriate medication use. Caregivers play a pivotal role in the prescribing process. However, many family caregivers feel that they have not been fully involved in the shared decision-making process about the care planning of their relatives with ID/ASD. To address the public health concern regarding the overuse of off-license prescribing in people with ID/ASD, we have recently developed a training programme called SPECTROM (Short-term Psycho-Education for Carers To Reduce OverMedication of people with intellectual disabilities) for direct care staff who support people with ID/ASD within community settings. We used co-production and a modified Experience-Based Co-Design (EBCD) method to develop SPECTROM, which involved a literature review, four focus groups and a co-design event day involving 26 stakeholders. Recommendations from the co-design event day were analyzed by a Programme Development Group (PDG) consisting of 21 stakeholders who made the final recommendations to the project team regarding the contents and the format of SPECTROM, which was finalized after receiving feedback from further 59 stakeholders. SPECTROM has web-based resources introduced through two core modules in face-to-face workshops/training. A small field test found SPECTROM was effective in improving staff's knowledge of psychotropic medications and attitude toward BtC and people with ID (p < 0.05). One of the 14 STOMP modules is “Effective liaison with family carers and advocates”. In this paper, we have presented data from the co-design event day recommendations for this particular module. The group recommended ways to improve collaborative working and effective shared decision-making with family caregivers and people with ID/ASD.

Patient-Preference Diagnostics: Adapting Stated-Preference Methods to Inform Effective Shared Decision Making.

While clinical practice guidelines underscore the need to incorporate patient preferences in clinical decision making, incorporating meaningful assessment of patient preferences in clinical encounters is challenging. Structured approaches that combine quantitative patient preferences and clinical evidence could facilitate effective patient-provider communication and more patient-centric health care decisions. Adaptive conjoint or stated-preference approaches can identify individual preference parameters, but they can require a relatively large number of choice questions or simplifying assumptions about the error with which preferences are elicited. We propose an approach to efficiently diagnose preferences of patients for outcomes of treatment alternatives by leveraging prior information on patient preferences to generate adaptive choice questions to identify a patient's proximity to known preference phenotypes. This information can be used for measuring sensitivity and specificity, much like any other diagnostic procedure. We simulated responses with varying levels of choice errors for hypothetical patients with specific preference profiles to measure sensitivity and specificity of a 2-question preference diagnostic. We identified 4 classes representing distinct preference profiles for patients who participated in a previous first-time anterior shoulder dislocation (FTASD) survey. Posterior probabilities of class membership at the end of a 2-question sequence ranged from 87% to 89%. We found that specificity and sensitivity of the 2-question sequences were robust to respondent errors. The questions appeared to have better specificity than sensitivity. Our results suggest that this approach could help diagnose patient preferences for treatments for a condition such as FTASD with acceptable precision using as few as 2 choice questions. Such preference-diagnostic tools could be used to improve and document alignment of treatment choices and patient preferences. Approaches that combine patient preferences and clinical evidence can facilitate effective patient-provider communication and more patient-centric healthcare decisions. However, diagnosing individual-level preferences is challenging, and no formal diagnostic tools exist.We propose a structured approach to efficiently diagnose patient preferences based on prior information on the distribution of patient preferences in a population.We generated a 2-question test of preferences for the outcomes associated with the treatment of first-time anterior shoulder dislocation.The diagnosis of preferences can help physicians discuss relevant aspects of the treatment options and proactively address patient concerns during the clinical encounter.

0794 Understanding Barriers and Communication Behaviors Impacting Referral to Sleep Surgery: Qualitative Patient Perspectives

Abstract Introduction Shared decision-making is a process when patients, families, and clinicians work together to make optimal, personalized medical choices in the face of more than one reasonable treatment option. These interactions can influence the joint decision and may have lasting impressions for future healthcare encounters. Considering the American Academy of Sleep Medicine’s recent clinical practice guideline on the referral of adults with obstructive sleep apnea (OSA) for surgical consultation, we aimed to understand patient experiences, in terms of barriers and communication behaviors in the referral process to sleep surgery consultation. Methods We performed a qualitative study consisting of in-depth semi-structured virtual interviews with adult patients (aged ≥18 years) with OSA (apnea-hypopnea index ≥5 events per hour of sleep, scored by AASM-accredited standards) and who were recommended for sleep surgery at a tertiary Sleep Surgery Clinic. Open ended questions focused on patient experiences during healthcare encounters from diagnosis, trials with noninvasive management options and ultimate referral to sleep surgery. The interviews were audio-recorded, transcribed, and analyzed using content analysis to identify themes. Results Ten adult patients with OSA who were evaluated in sleep surgery clinic were approached and enrolled from March through April 2021. Barriers to sleep surgery clinic included delays in OSA diagnosis due to limited OSA awareness and perceived inconvenience of sleep study, providers faulting patient for persistent sleep symptoms, patient-reported lack of urgency by providers in troubleshooting noninvasive management options, scheduling delays and waitlists, and cost. Patients were open to trialing noninvasive treatment options, though opportunities for reevaluation and shared decision-making may address unmet needs, as inadequate improvements led to frustration after multiple encounters. Patients appreciated providers who were empathetic and provided information sharing, in terms of transparent and understandable explanations. Conclusion This study focused on experiences of patients with OSA and barriers faced to reach sleep surgery consultation. Improved communication structure to discuss unresolved concerns and remaining management options, as well as vetted resources, would set the foundation for effective shared decision-making and timely referral for sleep surgery consultation. Support (If Any) Academy of Otolaryngology Head and Neck Surgery Resident Research Centralized Otolaryngology Research Efforts (CORE). NIH T32 DC000018.

Digging Deeper: Understanding Trajectories and Experiences of Shared Decision-Making for Primary Prevention ICD Implantation

BackgroundShared decision-making using a decision aid is required for patients undergoing implantation of primary prevention implantable cardioverter-defibrillators (ICD). It is unknown how much this process has impacted patients’ experiences or choices. Effective shared decision-making requires an understanding of how patients make ICD decisions. A qualitative key informant study was chosen to capture the breadth of patients’ experiences making ICD decisions in the context of required shared decision-making. Methods and ResultsWe conducted in-depth interviews with 20 patients referred to electrophysiology clinics for the consideration of primary prevention ICD implantation. Purposeful sampling from a prior survey study evaluating mandated shared decision-making was based on patient characteristics and responses to the initial survey questions. Qualitative descriptive analysis of the interviews was performed using a multilevel coding strategy. Patients’ paths to an ICD decision often involved multiple visits with multiple clinicians. However, the decision aid was almost exclusively provided to the patient during electrophysiology clinic visits. Some patients used the numeric data in the decision aid to make an ICD decision based on the risk–benefit profile; others made decisions based on other data or based on trust in clinicians’ recommendations. Patients highlighted information related to living with the device as particularly important in helping them to make their ICD decisions. Some patients struggled with the emotional aspects of making an ICD decision. ConclusionsPatients’ ICD decision-making paths poses a challenge to episodic shared decision-making and may make tools such as decision aids perfunctory if used solely during the electrophysiology visit. Understanding patients’ ICD decision-making paths, especially in the context of encounters with primary cardiologists, can inform the implementation strategies of shared decision-making help to enhance its impact. Components of decision aids focusing on the experience of living with an ICD rather than probabilistic data may also be more impactful, although the nature of their impact will differ.

Prognosis Predictions by Families, Physicians, and Nurses of Patients with Severe Acute Brain Injury: Agreement and Accuracy.

Effective shared decision-making relies on some degree of alignment between families and the medical team regarding a patient's likelihood of recovery. Patients with severe acute brain injury (SABI) are often unable to participate in decisions, and therefore family members make decisions on their behalf. The goal of this study was to evaluate agreement between prognostic predictions by families, physicians, and nurses of patients with SABI regarding their likelihood of regaining independence and to measure each group's prediction accuracy. This observational cohort study, conducted from 01/2018 to 07/2020, was based in the neuroscience and medical/cardiac intensive care units of a single center. Patient eligibility included a diagnosis of SABI-specifically stroke, traumatic brain injury, or hypoxic ischemic encephalopathy-and a Glasgow Coma Scale ≤ 12 after hospital day 2. At enrollment, families, physicians, and nurses were asked separatelyto predict a patient's likelihood of recovering to independence within 6months on a 0-100 scale, regardless of whether a formal family meeting had occurred. True outcome was based on modified Rankin Scale assessment through a family report or medical chart review. Prognostic agreement was measured by (1) intraclass correlation coefficient; (2) mean group prediction comparisons using paired Student's t-tests; and (3) prevalence of concordance, defined as an absolute difference of less than 20 percentage points between predictions. Accuracy for each group was measured by calculating the area under a receiver operating characteristic curve (C statistic) and compared by using DeLong's test. Data were collected from 222 patients and families, 45 physicians, and 103 nurses. Complete data on agreement and accuracy were available for 187 and 177 patients, respectively. The intraclass correlation coefficient, in which 1 indicates perfect correlation and 0 indicates no correlation, was 0.49 for physician-family pairs, 0.40 for family-nurse pairs, and 0.66 for physician-nurse pairs. The difference in mean predictions between families and physicians was 23.5 percentage points (p < 0.001), 25.4 between families and nurses (p < 0.001), and 1.9 between physicians and nurses (p = 0.38). Prevalence of concordance was 39.6% for family-physician pairs, 30.0% for family-nurse pairs, and 56.2% for physician-nurse pairs. The C statistic for prediction accuracywas 0.65 for families, 0.82 for physicians, and 0.76 for nurses. The p values for differences in C statistics were < 0.05 for family-physician and family-nurse groups and 0.18 for physician-nurse groups. For patients with SABI, agreement in predictions between families, physicians, and nurses regarding likelihood of recovery is poor. Accuracy appears higher for physicians and nurses compared with families, with no significant difference between physicians and nurses.

Evidence-based strategies to reduce the incidence of postoperative delirium: a narrative review.

Delirium is one of the most commonly occurring postoperative complications in older adults. It occurs due to the vulnerability of cerebral functioning to pathophysiological stressors. Identification of those at increased risk of developing delirium early in the surgical pathway provides an opportunity for modification of predisposing and precipitating risk factors and effective shared decision-making. No single delirium prediction tool is used widely in surgical settings. Multi-component interventions to prevent delirium involve structured risk factor modification supported by geriatrician input; these are clinically efficacious and cost effective. Barriers to the widespread implementation of such complex interventions exist, resulting in an 'implementation gap'. There is a lack of evidence for pharmacological prophylaxis for the prevention of delirium. Current evidence suggests that avoidance of peri-operative benzodiazepines, careful titration of anaesthetic depth guided by processed electroencephalogram monitoring and treatment of pain are the most effective strategies to minimise the risk of delirium. Addressing postoperative delirium requires a collaborative, whole pathway approach, beginning with the early identification of those patients who are at risk. The research agenda should continue to examine the potential for pharmacological prophylaxis to prevent delirium while also addressing how successful models of delirium prevention can be translated from one setting to another, underpinned by implementation science methodology.

How effective conversations can lead to better patient outcomes

According to the Personalised Care Institute, 40% of people do not feel included in decisions about their health and care. This prompts the question: what is true inclusion? And how can we ensure that we are enabling effective shared decision making? Our historical, well-intentioned practice of ‘manoeuvring’ patients into making the choice that we think is the […]

Informed Consent for Intraoperative Neural Monitoring in Thyroid and Parathyroid Surgery – Consensus Statement of the International Neural Monitoring Study Group

In the past decade, the use of intraoperative neural monitoring (IONM) in thyroid and parathyroid surgery has been widely accepted by surgeons as a useful technology for improving laryngeal nerve identification and voice outcomes, facilitating neurophysiological research, educating and training surgeons, and reducing surgical complications and malpractice litigation. Informing patients about IONM is not only good practice and helpful in promoting the efficient use of IONM resources but is indispensable for effective shared decision making between the patient and surgeon. The International Neural Monitoring Study Group (INMSG) feels complete discussion of IONM in the preoperative planning and patient consent process is important in all patients undergoing thyroid and parathyroid surgery. The purpose of this publication is to evaluate the impact of IONM on the informed consent process before thyroid and parathyroid surgery and to review the current INMSG consensus on evidence-based consent. The objective of this consensus statement, which outlines general and specific considerations as well as recommended criteria for informed consent for the use of IONM, is to assist surgeons and patients in the processes of informed consent and shared decision making before thyroid and parathyroid surgery.