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Purpose: The priorities and concerns of sarcoidosis patients in the United States (US) have not been well-described. Methods: A survey constructed by sarcoidosis patients and doctors was administered to US sarcoidosis patients. The survey queried patients concerning their demographics, disease state, disease impact on health and well-being, health care priorities and impressions of sarcoidosis care. Respondents were solicited via social media and networking with sarcoidosis clinicians. Results: 1018 US sarcoidosis patients completed this survey. 65% were female, 63% White, 34% Black, and 87% > 45 years old. The most common organs involved were the lungs 87%, skin 30%, heart 25%, and eyes 25%. Household income was < $50 K in 31% and > $150 K in 14% of patients. There was a fairly even split between those living in urban (29%), suburban (42%), and rural (29%) environments. The patients’greatest concerns were fear of worsening disease, fear of sarcoidosis developing in more organs, and fear of sarcoidosis not improving. These were closely followed by concerns about poor health-related quality of life (HRQoL), inability to enjoy everyday activities, lack of medical research, disability from sarcoidosis, and pulmonary function status. Lack of physician knowledge and poor physician communication were ranked of lowest concern. Concerns about ineffective medications and cost of medical care were also ranked relatively low. Patients overwhelmingly considered information from their doctor as very useful. Conclusion: In this survey of over 1000 US sarcoidosis patients, their greatest concerns were fear of poor clinical outcomes. The patients were relatively less concerned about their doctors’ knowledge about sarcoidosis and poor physician communication. Although patients expressed significant concerns about poor HRQoL, not all domains of HRQoL were equally affected. US sarcoidosis patients rank concerns about disease progression higher than disease impact on HRQoL. [ABSTRACT FROM AUTHOR]

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The rising prevalence of CSHCN has led to significant challenges for caregivers, particularly mothers, who face difficulties from caregiving demands and managing complex healthcare interactions. The objective of this study was to examine the association between the medical complexity of CSHCN and the healthcare experiences of their mothers while exploring the influence of sociodemographic factors on these associations. The study utilized data from the 2016–2020 National Survey of Children's Health (NSCH), involving 17,434 mothers of CSHCN. Mothers provided information on the medical complexity of CSHCN, healthcare experiences (care coordination, family-centered care, and shared decision-making), and sociodemographic information (race, community, insurance, child sex, age, and federal poverty level). Results from multiple regressions revealed that greater medical complexity was associated with more negative healthcare experiences. Minoritized mothers, those in rural areas, and families with lower income reported lower levels of family-centered care, indicating significant disparities. Additionally, the negative association between medical complexity and healthcare experiences was pronounced for White families and those with private insurance compared to minoritized families and those with public insurance. This study highlights the necessity for targeted interventions to improve care coordination, family-centered care, and shared decision-making, emphasizing the need for a comprehensive, family-centered approach to address healthcare disparities and promote health equity for CSHCN and their families. [ABSTRACT FROM AUTHOR]

Our role as aesthetic surgeons demands individualized surgical planning that maximizes patient input and understanding. The value of such shared decision-making (SDM) in aesthetic surgery is becoming increasingly appreciated. This is particularly true for potential patients seeking surgical rejuvenation of the face, where the volume of "educational" information available on the internet, and through various social medial channels, may be overwhelming and even misleading. Presented is a "3-Level approach to facelift planning" named for the facial subregions targeted. This novel paradigm maximizes SDM with its simplicity and reproducibility, serves as an invaluable educational tool for patients, novice and seasoned surgeons alike, and facilitates communication between senior surgeons through its descriptive standardization. Level of Evidence V: This journal requires that authors assign a level of evidence to each article. For a full description of these Evidence-Based Medicine ratings, please refer to the Table of Contents or the online Instructions to Authors www.springer.com/00266. [ABSTRACT FROM AUTHOR]

Introduction: Shared decision-making (SDM) has received a great deal of attention as an effective way to achieve patient-centered medical care. SDM aims to bring doctors and patients together to develop treatment plans through negotiation. However, time pressure and subjective factors such as medical illiteracy and inadequate communication skills prevent doctors and patients from accurately expressing and obtaining their opponent's preferences. This problemleads to SDM being in an incomplete information environment, which significantly reduces the efficiency of the negotiation and even leads to failure. Methods: In this study, we integrated a negotiation strategy that predicts opponent preference using a genetic algorithm with an SDM auto-negotiation model constructed based on fuzzy constraints, thereby enhancing the effectiveness of SDM by addressing the problems posed by incomplete information environments and rapidly generating treatment plans with high mutual satisfaction. Results: A variety of negotiation scenarios are simulated in experiments and the proposedmodel is compared with other excellent negotiationmodels. The results indicated that the proposed model better adapts to multivariate scenarios and maintains higher mutual satisfaction. Discussion: The agent negotiation framework supports SDM participants in accessing treatment plans that fit individual preferences, thereby increasing treatment satisfaction. Adding GA opponent preference prediction to the SDM negotiation framework can effectively improve negotiation performance in incomplete information environments. [ABSTRACT FROM AUTHOR]

Objective: The aim of this cohort study was to gain insight on influencing factors on the decision-making process in conventional medicine compared to complementary and alternative medicine (CAM). Methods: A standardized questionnaire was distributed among cancer patients who attended the counselling facility for CAM of a German university hospital in 2020. Results: Fifty patients (30.3%) returned the questionnaire. After counselling on CAM, most patients made a decision in CAM but also in conventional medicine. Thus, the focus on informed decision-making during counselling on CAM had a strong effect on the decision-making process in conventional medicine. Patients reporting good support also reported making decisions together with physicians and relatives. Moreover, after counselling on CAM, patients reported being more satisfied with their decision in both settings afterwards. Conclusion: Information on CAM which focuses on informed decision-making, supports patient's ability to understand and weigh risks and benefits of treatments, supports shared decision-making and enables patients to transfer these competences also to decisions on conventional medicine. So counselling on CAM may further decision-making competences in cancer patients. This encourages patients to engage in shared decision-making and increases patient's satisfaction with decisions. [ABSTRACT FROM AUTHOR]

The rising prevalence of CSHCN has led to significant challenges for caregivers, particularly mothers, who face difficulties from caregiving demands and managing complex healthcare interactions. The objective of this study was to examine the association between the medical complexity of CSHCN and the healthcare experiences of their mothers while exploring the influence of sociodemographic factors on these associations. The study utilized data from the 2016–2020 National Survey of Children’s Health (NSCH), involving 17,434 mothers of CSHCN. Mothers provided information on the medical complexity of CSHCN, healthcare experiences (care coordination, family-centered care, and shared decision-making), and sociodemographic information (race, community, insurance, child sex, age, and federal poverty level). Results from multiple regressions revealed that greater medical complexity was associated with more negative healthcare experiences. Minoritized mothers, those in rural areas, and families with lower income reported lower levels of family-centered care, indicating significant disparities. Additionally, the negative association between medical complexity and healthcare experiences was pronounced for White families and those with private insurance compared to minoritized families and those with public insurance. This study highlights the necessity for targeted interventions to improve care coordination, family-centered care, and shared decision-making, emphasizing the need for a comprehensive, family-centered approach to address healthcare disparities and promote health equity for CSHCN and their families.

Purpose: The added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the proliferation of patient-reported outcome measures (PROMs) and conflicting data collection standards. As part of a national initiative of the Dutch Ministry of Health, Welfare and Sport we developed a consensus-based standard set of generic PROs and PROMs to be implemented across Dutch medical specialist care. Methods: A working group of mandated representatives of umbrella organizations involved in Dutch medical specialist care, together with PROM experts and patient organizations worked through a structured, consensus-driven co-creation process. This included literature reviews, online expert and working group meetings, and feedback from national patient- and umbrella organizations. The 'PROM-cycle' methodology was used to select feasible, valid, and reliable PROMs to obtain domain scores for each of the PROs included in the set. Results: Eight PROs across different domains of health were ultimately endorsed: symptoms (pain & fatigue), functioning (physical, social/participation, mental [anxiety & depression]), and overarching (quality of life & perceived overall health). A limited number of generic PROMs was endorsed. PROMIS short forms were selected as the preferred instruments for all PROs. Several recommendations were formulated to facilitate healthcare system level adoption and implementation of the standard set. Conclusions: We developed a consensus-based standard set of Generic PROMs and a set of recommendations to facilitate healthcare system wide implementation across Dutch medical specialist care. [ABSTRACT FROM AUTHOR]

Purpose: Medicare requires tobacco dependence counseling and shared decision-making (SDM) for lung cancer screening (LCS) reimbursement. We hypothesized that initiating SDM during inpatient tobacco treatment visits would increase LCS among patients with barriers to proactively seeking outpatient preventive care.Methods: We collected baseline assessments and performed two pilot randomized trials at our safety-net hospital. Pilot 1 tested feasibility, acceptability, and preliminary efficacy of a nurse practitioner initiating SDM for LCS during hospitalization (Inpatient SDM). We collected qualitative data on barriers encountered during Pilot 1. Pilot 2 added a community health worker (CHW) to address barriers to LCS completion (Inpatient SDM + CHW-navigation). For both studies, preliminary efficacy was an intention-to-treat analysis of LCS completion at 3 months between intervention and comparator (furnishing of LCS decision aid only) groups.Results: Baseline assessments showed that patients preferred in-person LCS discussions versus self-reviewing materials; overall 20% had difficulty understanding written information. In Pilot 1, 4% (2/52) in Inpatient SDM versus 2% (1/48, comparator) completed LCS (p = 0.6), despite 89% (89/100) desiring LCS. Primary care providers noted that competing priorities and patient factors (e.g., social barriers to keeping appointments) prevented the intervention from working as intended. In Pilot 2, 50% (5/10) in Inpatient SDM + CHW-navigation versus 9% (1/11, comparator) completed LCS (p < 0.05). Many patients were ineligible due to recent diagnostic chest CT (Pilot 1: 255/659; Pilot 2: 239/527).Conclusions: Inpatient SDM + CHW-navigation shows promise to improve LCS rates among underserved patients who smoke, but feasibility is limited by recent diagnostic chest CT among inpatients. Implementing CHW-navigation in other clinical settings may facilitate LCS for underserved patients.Trail Registration: ClinicalTrials.gov Identifier: NCT03276806 (8 September 2017); NCT03793894 (4 January 2019). [ABSTRACT FROM AUTHOR]

IntroductionThe Initial Medication Adherence (IMA) intervention is a multidisciplinary and shared decision-making intervention to improve initial medication adherence addressed to patients in need of new treatments for cardiovascular diseases and diabetes in primary care (PC). This pilot study aims to evaluate the feasibility and acceptability of the IMA intervention and the feasibility of a cluster-RCT to assess the effectiveness and cost-effectiveness of the intervention.MethodsA 3-month pilot trial with an embedded process evaluation was conducted in five PC centers in Catalonia (Spain). Electronic health data were descriptively analyzed to test the availability and quality of records of the trial outcomes (initiation, implementation, clinical parameters and use of services). Recruitment and retention rates of professionals were analyzed. Twenty-nine semi-structured interviews with professionals (general practitioners, nurses, and community pharmacists) and patients were conducted to assess the feasibility and acceptability of the intervention. Three discussion groups with a total of fifteen patients were performed to review and redesign the intervention decision aids. Qualitative data were thematically analyzed.ResultsA total of 901 new treatments were prescribed to 604 patients. The proportion of missing data in the electronic health records was up to 30% for use of services and around 70% for clinical parameters 5 months before and after a new prescription. Primary and secondary outcomes were within plausible ranges and outliers were barely detected. The IMA intervention and its implementation strategy were considered feasible and acceptable by pilot-study participants. Low recruitment and retention rates, understanding of shared decision-making by professionals, and format and content of decision aids were the main barriers to the feasibility of the IMA intervention.DiscussionInvolving patients in the decision-making process is crucial to achieving better clinical outcomes. The IMA intervention is feasible and showed good acceptability among professionals and patients. However, we identified barriers and facilitators to implementing the intervention and adapting it to a context affected by the COVID-19 pandemic that should be considered before launching a cluster-RCT. This pilot study identified opportunities for refining the intervention and improving the design of the definitive cluster-RCT to evaluate its effectiveness and cost-effectiveness.Clinical trial registrationClinicalTrials.gov, identifier NCT05094986.

BackgroundFew studies have used quantitative methods to explore the key factors affecting shared decision-making (SDM) in nursing decision-making from the perspective of orthopedic nurses.PurposeTo understand the intercorrelations among shared decision-making questionnaire–nurse (SDM-Q-NUR) factors and identify key factors for clinical nursing care decisions in orthopedics.MethodsIn May 2021, this study investigated the interdependence of the SDM-Q-NUR scale and developed an influential network-relation map (INRM) from the clinical experience of 13 trained orthopedic nurses using the Decision-making Trial and Evaluation Laboratory method.ResultsThe INRM results showed that the nine criteria corresponded to three stages: preparation, discussion, and decision. “I helped my patient or patient's family understand all the information” (C5) and “I wanted to know from my patient or patient's family how they want to be involved in making the nursing care decision” (C2) are the main key factors for the beginning of nursing decision. In the discussion and decision stages, the corresponding key factors are “I made it clear to my patient or patient's family that a nursing care decision needs to be made” (C1) and “I asked my patient or patient's family which nursing care option they prefer” (C6). The result's statistical significance confidence and gap error were 98.106% and 1.894%, respectively.ConclusionsWhen making nursing decisions with patients, orthopedic nurses need to have detailed information about how patients are involved in SDM and all relevant information. Nurses should also inform patients and their families regarding the purpose of the discussion, namely, to help one understand the content, advantages, and disadvantages of the nursing care options, and finally, make a decision.

Malpractice lawsuits are a substantial concern in health systems with miscommunication, inadequate information, and unsuccessful patient involvement in decisionmaking seeming to be contributing factors. This paper draws attention to the explicit role of informed consent (IC) obtainment in actualized complaint cases and to what extent novel methods to exercise IC through means of shared decision-making (SDM) and supporting tools might be applicable. A national sample of cases from the Health Professionals Disciplinary Board in Denmark is reviewed and discussed together with international legal instruments and case law. It is confirmed that patients claim their right to participate in decision-making about healthcare options. In many situations SDM and accompanying tools would apply and possibly they could sometimes prevent IC duty breaches, assist documenting IC procedures, and help avert the need for litigation. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To examine the effect of a shared decision-making intervention with parents of children newly diagnosed with attention-deficit/hyperactivity disorder. Methods: Seven pediatricians participated in a pre/post open trial of decision aids for use before and during the office visit to discuss diagnosis and develop a treatment plan. Encounters pre- (n =21, control group) and post-intervention implementation (n =33, intervention group) were compared. We video-recorded encounters and surveyed parents. Results: Compared to controls, intervention group parents were more involved in shared decision-making (31.2 vs. 43.8 on OPTION score, p <0.01), more knowledgeable (6.4 vs. 8.1 questions correct, p <0.01), and less conflicted about treatment options (16.2 vs. 10.7 on decisional conflict total score, p =0.06). Visit duration was unchanged (41.0 vs. 41.6min, p =0.75). There were no significant differences in the median number of follow-up visits (0 vs. 1 visits, p =0.08), or the proportion of children with medication titration (62% vs. 76%, p =0.28), or parent-completed behavior rating scale to assess treatment response (24% vs. 39%, p =0.36). Conclusions: Our intervention increased shared decision-making with parents. Parents were better informed about treatment options without increasing visit duration. Practice implications: Interventions are available to prepare parents for visits and enable physicians to elicit parent preferences and involvement in decision-making. [Copyright &y& Elsevier]

Abstract: Objective: The aim of the study was to evaluate the interprofessional SDM training program “Fit for SDM” in medical rehabilitation, which was implemented in two steps: (1) university staff trained providers in executive positions as trainers and (2) the providers trained their staff. Methods: For the evaluation of the first step a questionnaire for shared decision-making (SDM) skills and satisfaction with the training was completed by the providers in executive positions. A staff survey was used in a cluster-randomized controlled study to determine the overall impact of the train-the-trainer program on internal and external participation in the team. Results: The providers in the six clinics evaluated their SDM competences and satisfaction very positively after training (step 1). External participation was enhanced by application of the training content, with significant changes recorded for females and nurses in particular. However, it had no direct influence on internal participation. Conclusions: This is the first interprofessional SDM train-the-trainer program in Germany to bridge interprofessionalism (internal participation) and SDM (external participation); it was implemented successfully and evaluated positively. Practice implications: Establishing interprofessional SDM training programs should be encouraged for all health care professionals. Implementation in the interprofessional setting should consider interprofessional team factors. [Copyright &y& Elsevier]

Abstract: Objective: Fibromyalgia syndrome (FMS) patients and their doctors frequently complain on interaction difficulties. We investigated the effects of a shared decision-making (SDM) intervention on physician–patient interaction and health outcome. Methods: Sixty-seven FMS patients of an outpatient university setting that had been included in a randomized controlled trial were followed up. They were either treated in an SDM group or in an information group. Both groups saw a computer based information tool on FMS, but only the SDM group was treated by doctors which underwent a special SDM communication training. A comparison group of 44 FMS patients receiving treatment as usual was recruited in rheumatological practices. We assessed patients and their doctors using a combined qualitative and quantitative approach. Patients and doctors were followed-up after 3 months (T2) and after 1 year (T3). Results: The significantly best quality of physician–patient interaction was reported by patients and doctors of the SDM group, followed by the information group. Coping had more often improved in the SDM group than in the information group. However directly health related outcome variables had not improved in any of the groups at T3. Conclusion: An SDM intervention can lead to an improved physician–patient relationship from the patients’ and from the doctors’ perspective. Practice implications: It should be considered to include SDM in standard care for FMS patients. [Copyright &y& Elsevier]