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Abstract Background This study aims to investigate the integration of modern sources of patient information, such as videos, internet-based resources, and scientific abstracts, into the traditional patient informed consent process in outpatient elective surgeries. The goal is to optimize the informed consent experience, enhance patient satisfaction, and promote shared decision making (SDM) between patients and surgeons. By exploring different patient informed consent formats and their impact on patient satisfaction, this research seeks to improve healthcare practices and ultimately enhance patient outcomes. The findings of this study will contribute to the ongoing efforts to improve the informed consent process in public hospitals and advance patient-centred care. Methods Data collection occurred at the day care clinic of a prominent German public hospital, forming an integral component of a prospective clinical investigation. The study exclusively focused on individuals who had undergone surgical intervention for skin cancer. For the purpose of meticulous data examination, the statistical software SPSS version 21 was harnessed. In the course of this study, a chi-square test was aptly employed. Its purpose was to scrutinize the nuances in patient experiences pertaining to informed consent across four distinct categories, viz., oral informed consent discussion (Oral ICD), written informed consent discussion (Written ICD), video-assisted informed consent discussion (video-assisted ICD), and digitally assisted informed consent discussion (digital-assisted ICD). The primary dataset of this inquiry was diligently gathered via a structured questionnaire administered to a targeted cohort of 160 patients. Within this sample, a balanced representation of genders was observed, encompassing 82 males and 78 females. Their collective age span ranged from 18 to 92 years, with an average age of 71 years. A randomized selection methodology was employed to include participants in this study during the period spanning from July 2017 to August 2018. Results Significant differences were observed across the groups for all research questions, highlighting variations in patient responses. Video-assisted and digital-assisted IC were rated as superior in patient satisfaction with information compared to written and oral IC. Demographic profiles of the four study groups were found to be comparable. Conclusion The findings of this study indicate that the incorporation of digital technologies in the informed consent process can enhance patient understanding during outpatient elective skin cancer surgeries. These results have important implications for increasing patient satisfaction and improving the SDM process within the hospital environment.

Abstract Background In recent decades, there has been a growing emphasis on involving patients in healthcare decision-making, driven by political, ethical, and research considerations. Although patient involvement is associated with improved health outcomes, understanding patient preferences regarding their role in decision-making is crucial for effective interventions. The Control Preferences Scale (CPS) measures patient preferences along a continuum from passive to active participation. However, its application in Denmark necessitates translation and cultural adaptation. Methodology This study aimed to translate and culturally adapt the CPS for Danish use across diverse healthcare settings: acute care, cancer care, elective surgery, chronic medical treatment, and parental involvement in pediatric care. Following a cross-sectional design, the translation process was systematically planned and executed using Beaton’s guidelines, including the five stages: forward and back translation, synthesis, expert review, and pre-testing. Results The translation and adaption process was carried out successfully. Few linguistic challenges were identified and resolved by the expert review. The findings of the pre-testing indicated high acceptability and usability of the adapted CPS among 152 Danish patients and parents. The collaborative role emerged as the most preferred across settings (69.8%), with passive roles more prevalent among cancer patients (30%) and parents waiting with their child to see a pediatrician (23.3%). Notable, more women preferred collaborative or active roles (83.9%) than men (73.9%). The content validity assessment yielded positive feedback, affirming the relevance and comprehensiveness of the CPS. Conclusions In summary, the adaptation and validation of the CPS for Danish use proved successful, providing a valuable tool for assessing patient’s role preferences in healthcare decision-making. However, future studies are recommended to ensure construct validity and reliability through psychometric testing.

Abstract Background Listening to patient voices is critical, in terms of how people experience their condition as well as their treatment preferences. This research explored the patient journey, therapy attributes and goals among treatment experienced adults with chronic lymphocytic leukemia (CLL). We sought to understand patient experiences, needs and expectations to identify areas for improvement of treatment and care delivery. Methods Two online surveys were developed for completion by CLL patients. In Stage 1, participants completed a best-worst scaling (BWS) task to evaluate eleven previously validated healthcare journey moments that matter (MTM). Responses were used to generate the patient experience index (PEI) score. In Stage 2, participants completed a survey that included both a discrete choice experiment (DCE) to assess drivers of treatment preferences by evaluating the relative attribute importance (RAI) of seven features and a BWS exercise which explored long-term treatment goals. Results Twenty-five patients completed Stage 1 and thirty patients Stage 2. Treatment experience was balanced between oral and intravenous medication. The most important/least satisfied MTM were treatment effectiveness, access to support and other treatments as well as monitoring progress. The median PEI score was 66.2 (out of 100). DCE results demonstrated that patients most value treatments for CLL that are associated with prolonged progression free survival (PFS; RAI: 24.6%), followed by treatments that have a lower risk of severe side effects and lower out-of-pocket costs (RAI: 19.5%, 17.4%, respectively). The remainder of the weight in decision making (38.5%) was split between the remaining attributes, namely ‘mild to moderate side effects’ (13.4%), ‘long-term risks’ (12.2%), type of treatment (i.e., oral, IV or a combination of oral and IV; 8.7%) and treatment duration (i.e., ongoing versus fixed; 4.2%). Patients preferred oral to intravenous therapy. The most valued long-term treatment goal was to be physically healthy, followed by living a long life, spending time with family/friends, and avoiding hospitalization. Conclusion Treatment experienced patients with CLL are focused on receiving effective, safe therapies and value long PFS. Consideration and discussion of other attributes, such as once daily dosing, oral only medication, out-of-pocket costs and access to support services may affect patient treatment choices and ultimately enhance their healthcare experience and outcomes.

Abstract Background Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child’s wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. Methods We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. Results Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. Conclusions Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy.

Abstract The COVID‐19 pandemic prompted a rapid shift from in‐person to virtually‐delivered care. Many youth with chronic pain have the ability to access care virtually; however, little is known about the efficacy of pain care for youth with chronic pain delivered virtually when compared to in‐person. Such evidence is essential to guide youth in making decisions about their care, but also to inform what options health professionals present to youth. The purpose of this systematic review and meta‐analysis was to examine the efficacy of interventions that are delivered in‐person versus virtually for youth with chronic pain. Five databases (i.e., CINAHL, EMBASE, MEDLINE, APA PsycINFO, and Web of Science) were searched in October 2022 to identify randomized controlled trials that compare single/multimodal interventions for pediatric chronic pain delivered in‐person versus virtually. A total 3638 unique studies were identified through database and other searching, two of which satisfied established criteria for inclusion in this review. Both studies compared psychological interventions delivered virtually versus in‐person for youth with chronic pain and showed comparable efficacy across modalities. The planned meta‐analyses could not be conducted due to different outcomes within each study that could not be combined. This systematic review highlights a critical gap in the evidence regarding the efficacy of virtually delivered interventions for youth with chronic pain. This evidence is necessary to inform treatment decisions for youth, and further research is required to develop the evidence to inform clinical interventions, especially as virtual treatments continue to be offered.

Abstract Background A significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients’ and informal caregivers’ ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy’s activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals. Methods We conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis. Results Patients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care. Conclusion Stakeholders’ experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.

Abstract Background Deprescribing of medication for cardiovascular risk factors and diabetes has been incorporated in clinical guidelines but proves to be difficult to implement in primary care. Training of healthcare providers is needed to enhance deprescribing in eligible patients. This study will examine the effects of a blended training program aimed at initiating and conducting constructive deprescribing consultations with patients. Methods A cluster-randomized trial will be conducted in which local pharmacy-general practice teams in the Netherlands will be randomized to conducting clinical medication reviews with patients as usual (control) or after receiving the CO-DEPRESCRIBE training program (intervention). People of 75 years and older using specific cardiometabolic medication (diabetes drugs, antihypertensives, statins) and eligible for a medication review will be included. The CO-DEPRESCRIBE intervention is based on previous work and applies models for patient-centered communication and shared decision making. It consists of 5 training modules with supportive tools. The primary outcome is the percentage of patients with at least 1 cardiometabolic medication deintensified. Secondary outcomes include patient involvement in decision making, healthcare provider communication skills, health/medication-related outcomes, attitudes towards deprescribing, medication regimen complexity and health-related quality of life. Additional safety and cost parameters will be collected. It is estimated that 167 patients per study arm are needed in the final intention-to-treat analysis using a mixed effects model. Taking loss to follow-up into account, 40 teams are asked to recruit 10 patients each. A baseline and 6-months follow-up assessment, a process evaluation, and a cost-effectiveness analysis will be conducted. Discussion The hypothesis is that the training program will lead to more proactive and patient-centered deprescribing of cardiometabolic medication. By a comprehensive evaluation, an increase in knowledge needed for sustainable implementation of deprescribing in primary care is expected. Trial registration The study is registered at ClinicalTrials.gov (identifier: NCT05507177).

Abstract Introduction This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. Background The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up. Methods ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients’ clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the "SHARE approach’ for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox. Results User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated. Conclusions Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel.

OBJECTIVE: Interventions to support patients engagement in shared decision making (SDM) are lacking within high-grade glioma (HGG) healthcare. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first study of CPRS within a HGG population and delivered over serial medical consultations. METHOD: A one-arm prospective qualitative longitudinal design was used to evaluate the CPRS intervention and evaluated with participants at sequential clinic appointments depending on their care, in Edinburgh, Scotland. We report on serial semi structured interviews of 16 patients and their partners. RESULTS: Consultation planning before the consultation supported patients to feel known by strengthening the patient voice within the consultation. It prepared patients to actively participate in the consultation, despite the distressing nature of the content. Recording and summarising supported patients to understand their situation. The provision of a consultation record enabled accurate recall, a paced uptake of information and supported the family to feel fully informed. Ultimately, patients understood why decisions were being made rather than being part of making decisions. CONCLUSIONS: The CPRS intervention helped patients to understand and to feel known by increasing patient capacity for communication in the consultation, with support before, during, and after the consultation. The intervention focused on preparing patients for SDM but patients did not perceive that they had meaningful choices to make. Further research could look at the inclusion of patient decision aids to support this process.

OBJECTIVE: No widely accepted clinical guidelines, and scant directly applicable pragmatic research, are available to guide the prescription of psychiatric medications in low-threshold outpatient settings, such as street outreach, urgent care, and crisis care, as well as walk-in, shelter, and bridge and transition clinics. Providers frequently prescribe medications in these settings without patients having firm psychiatric diagnoses and without medical records to guide clinical decision making. Persons who receive medications in these settings often seek help voluntarily and intermittently for mental illness symptoms. However, because of structural and individual factors, such patients may not engage in longitudinal outpatient psychiatric care. The authors reviewed the literature on psychiatric medication prescribing in low-threshold settings and offer clinical considerations for such prescribing. METHODS: The authors conducted a rapid literature review (N=2,215 abstracts), which was augmented with up-to-date clinical prescribing literature, the authors collective clinical experience, and DSM-5 section II diagnostic criteria to provide considerations for prescribing medications in low-threshold settings. RESULTS: For individuals for whom diagnostic uncertainty is prominent, a symptom-based diagnostic and treatment approach may be best suited to weigh the risks and benefits of medication use in low-threshold settings. Practical considerations for treating patients with clinical presentations of psychosis and trauma, as well as mood, anxiety, and substance use disorders, in low-threshold settings are discussed. CONCLUSIONS: An urgent need exists to invest in pragmatic research and guideline development to delineate best-practice prescribing in low-threshold settings.

Simple Summary: Rectal cancer is a disease that affects thousands of people each year. The treatment options for locally advanced rectal cancer have significantly improved and can involve a combination of surgery, chemotherapy, and radiation therapy. Recently, there has been increased adoption of a new approach called "watch and wait", where eligible patients can avoid surgery. This article describes how treatment options for locally advanced rectal cancer have evolved, emphasizes the importance of involving patients in decision making, and introduces a new tool to help patients and doctors decide about treatment options for rectal cancer. The management of locally advanced rectal cancer has undergone significant transformations over the decades and optimal treatment approaches continue to evolve. There have been numerous advances in surgery, chemotherapy, and radiation therapy from the first description of the abdominoperineal resection in 1908, timing of chemotherapy and radiation therapy in the late 20th and early 21st century, and most recently, the introduction of organ preservation or nonoperative management in 2004. Alongside these advancements, the concept of shared decision making in medicine has evolved, prompting a focus on patient-centered care. This evolution in practice has been fueled by a growing recognition of the importance of patient autonomy and the alignment of treatment options with patients' values and preferences. With the growing number of possible treatment options, variability in patient counseling exists, highlighting the need for a standardized approach to shared decision making in locally advanced rectal cancer. This narrative review will describe the evolution of treatment options of locally advanced rectal cancer as well as the concept of shared decision making and decision aids, and will introduce a decision aid for patients with locally advanced rectal cancer who have achieved a complete clinical response and are eligible for watch and wait. [ABSTRACT FROM AUTHOR]

Aim: To describe the development of a shared decision making intervention for planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services. Background: End‐of‐life care conversations within standard disease management consultations are challenging for patients with kidney failure, their relatives and health professionals. End‐of‐life care planning is about making difficult decisions in advance, which is why health professionals need shared decision making skills to be able to initiate end‐of‐life conversations. Health professionals report needing more skills to raise the issue of end‐of‐life care options within consultations and patients want to be able to discuss issues important to them about future care plans. Methods: The development design was guided by the UK Medical Research Council's framework and a user‐centred approach was applied. Four workshops were conducted with end users. The Template for Intervention Description and Replication for Population Health and Policy interventions was used to shape which questions needed to be answered through the workshops and to present the intervention. The International Patient Decision Aid Standards (IPDAS) criteria set the standards to be achieved. Results: Areas considered significant to a shared decision making intervention were training of health professionals, conversations about end‐of‐life care, planning and evaluation of the decisions, reporting decisions in health records and repetition of consultation. The development process went through 14 iterations. Conclusion: An intervention named DESIRE was developed that comprises: (1) a training programme for health professionals; (2) shared decision making conversations; and (3) a patient decision aid. The intervention met 30 out of 33 IPDAS criteria. Implications for practice: DESIRE is intended to support shared decision making about planning end‐of‐life care among patients with kidney failure, their relatives and health professionals. The study provides important tools for the stakeholders engaged that can be used within different models of care. Impact: What problem did the study address?: International guidelines recommend health professionals involve patients with kidney failure in making decisions about end‐of‐life care, but there is variation in how this is implemented within and across kidney services. Furthermore, patients, relatives and health professionals find it challenging to initiate conversations about end‐of‐life care. What were the main findings?: The study resulted in the development of a complex intervention, called DESIRE, about shared decision making and planning end‐of‐life care for patients with kidney failure, their relatives and health professionals in kidney services, including a training programme for health professionals, shared decision making conversations and a patient decision aid. Where and on whom will the research have an impact?: The research contributes a shared decision making intervention to patients in the later stage of kidney failure, their relatives and health professionals. We believe that the DESIRE intervention could be introduced during consultations with health professionals at an earlier stage of the patient's illness trajectory, as well as being applied to other chronic diseases. Reporting Method: This intervention development research is reported according to the GUIDance for the rEporting of intervention Development (GUIDED) checklist and the DEVELOPTOOLS Reporting Checklist. Patient or Public Contribution: Patients, relatives and health professionals have been involved throughout the research process as part of the research team and advisory board. For this study, the advisory board has particularly contributed to the development process of the DESIRE intervention by actively participating in the four workshops, in the iterations between the workshops and in the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background: In recent decades, there has been a growing emphasis on involving patients in healthcare decision-making, driven by political, ethical, and research considerations. Although patient involvement is associated with improved health outcomes, understanding patient preferences regarding their role in decision-making is crucial for effective interventions. The Control Preferences Scale (CPS) measures patient preferences along a continuum from passive to active participation. However, its application in Denmark necessitates translation and cultural adaptation. Methodology: This study aimed to translate and culturally adapt the CPS for Danish use across diverse healthcare settings: acute care, cancer care, elective surgery, chronic medical treatment, and parental involvement in pediatric care. Following a cross-sectional design, the translation process was systematically planned and executed using Beaton's guidelines, including the five stages: forward and back translation, synthesis, expert review, and pre-testing. Results: The translation and adaption process was carried out successfully. Few linguistic challenges were identified and resolved by the expert review. The findings of the pre-testing indicated high acceptability and usability of the adapted CPS among 152 Danish patients and parents. The collaborative role emerged as the most preferred across settings (69.8%), with passive roles more prevalent among cancer patients (30%) and parents waiting with their child to see a pediatrician (23.3%). Notable, more women preferred collaborative or active roles (83.9%) than men (73.9%). The content validity assessment yielded positive feedback, affirming the relevance and comprehensiveness of the CPS. Conclusions: In summary, the adaptation and validation of the CPS for Danish use proved successful, providing a valuable tool for assessing patient's role preferences in healthcare decision-making. However, future studies are recommended to ensure construct validity and reliability through psychometric testing. [ABSTRACT FROM AUTHOR]

On a closed psychiatric ward, conflict and disagreement may exist between patients and psychiatrists on how to interpret the patient’s condition. This forms a complexity for implementing contemporary ideals such as shared decision making, which would require a substantial degree of epistemic flexibility from both psychiatrists and patients. Recently, authors have argued that psychiatrists are pluralistic and pragmatic in their interpretation of the patient’s condition, implying a space for this flexibility in the clinical encounter. In this article we present an empirical study in which we aim to describe, understand, and explain this epistemic space and the dynamics between the psychiatrist’s and patient’s interpretation. We aim to explore and contextualize philosophical discussions through empirical research. We performed a qualitative inquiry on a closed psychiatric ward and found that both patients and psychiatrists were epistemically flexible, but epistemic negotiations were more complex and variegated than often presumed. We constructed an empirically grounded typology of different types of epistemic interaction, which shows that this interaction can only be properly understood if one acknowledges that it is shaped by different professional, societal and personal norms and values. We conclude by discussing the scope and limits of the epistemic space that we found. [ABSTRACT FROM AUTHOR]

Aim: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end‐of‐life care. Design: A qualitative interview study. Methods: Individual semi‐structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. Results: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed. Overall, four concepts were agreed on: (1) Talking about end of life is difficult, (2) Patients and relatives need more knowledge and information, (3) Health professionals need more tools and training, and (4) Experiencing busyness as a barrier to conversations about end of life. Conclusion: People with kidney failure, relatives, and health professionals shared certain decisional needs while also having some different decisional needs about end‐of‐life care. To meet these various needs, end‐of‐life conversations should be systematic and organized according to the patients' needs and wishes. Impact: Non‐systematic end‐of‐life care decision‐making processes limit patients' involvement. Patients and relatives need more knowledge about end‐of‐life care, and health professionals need more competences and time to discuss decisional needs. A shared decision‐making intervention for people with kidney failure when making end‐of‐life care decisions will be developed. Reporting Method: This empirical qualitative research is reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Patient or Public Contribution: Patients, relatives, and health professionals have been involved throughout the research process as part of the research team and advisory board. The patients are people with kidney failure and the relatives are relatives of a person with kidney failure. For this study, the advisory board has particularly contributed to the validation of the invitation letter for participation, the interview guides and the preparation of the manuscript. [ABSTRACT FROM AUTHOR]

Background and Objectives Older adults experiencing neurocognitive disease (NCD) contend with complex care often characterized by high emotional strain. Mitigating complex care with decision support tools can clarify options. When used in conjunction with the practice of shared decision making (SDM), these tools can improve satisfaction and confidence in treatment. The use of these tools for cognitive health has increased, but more is needed to understand how these tools incorporate social needs into treatment plans. Research Design and Methods We conducted an environmental scan using a MEDLINE-informed search strategy and feedback from an expert steering committee to characterize current tools and approaches for engaging older adults experiencing NCD. We assessed their application and development, incorporation of social determinants, goals or preferences, and inclusion of caregivers in their design. Results We identified 11 articles, 7 of which show that SDM helps guide tool development and that most center on clinical decision making. Types of tools varied by clinical site and those differences reflected patient need. A collective value across tools was their use to forge meaningful conversations. Most tools appeared designed without the explicit goal to elicit patient social needs or incorporate nonclinical strategies into treatment plans. Discussion and Implications Several challenges and opportunities exist that center on strategies to engage patients in the design and testing of tools that support conversations with clinicians about cognitive health. Future work should focus on building and testing adaptable tools that support patient and family social care needs beyond clinical care settings. [ABSTRACT FROM AUTHOR]

Pelvic organ prolapse (POP) is a common condition and is thought to affect approximately 40% of women over the age of 50, with prevalence increasing with age. 1 in 10 women will undergo surgery during their lifetime. Symptomatic women can be offered supervized pelvic floor exercises supported by Specialist Pelvic Floor Physiotherapists, vaginal pessary management or surgical management. This article covers comprehensive assessment, preoperative considerations to support shared decision making, and clinical governance surrounding surgical management of prolapse. It also provides a summary of different surgical techniques for both vaginal and abdominal approach for prolapse. [ABSTRACT FROM AUTHOR]

The importance of informed consent and the value of shared decision-making in hand surgery are well-established and particularly critical in the setting of digit amputation when considering replantation. Informed consent requires an understanding of not only the immediate and long-term risks and benefits of surgery, as well as the risks and alternatives involved, but also the capacity of the patient to make a medical decision. However, patients who have acutely sustained a disfiguring trauma are often in distress and may not fully process the consent discussion. Digit replantation is an "elective emergency"—the decision must be made immediately but is not lifesaving—which poses a difficult dilemma: are surgeons acting in patients' best interests by pursuing replantation if we engage those patients in informed consent discussions when they may not have capacity? This article explores the relevant bioethical principles associated with digit replantation, summarizes updated literature regarding informed consent and shared decision-making, and provides recommendations for patient education materials to standardize informed consent discussions for surgeons approaching patients at this unique intersection of considering revision amputation versus replantation. [ABSTRACT FROM AUTHOR]

Background: This study aims to investigate the integration of modern sources of patient information, such as videos, internet-based resources, and scientific abstracts, into the traditional patient informed consent process in outpatient elective surgeries. The goal is to optimize the informed consent experience, enhance patient satisfaction, and promote shared decision making (SDM) between patients and surgeons. By exploring different patient informed consent formats and their impact on patient satisfaction, this research seeks to improve healthcare practices and ultimately enhance patient outcomes. The findings of this study will contribute to the ongoing efforts to improve the informed consent process in public hospitals and advance patient-centred care. Methods: Data collection occurred at the day care clinic of a prominent German public hospital, forming an integral component of a prospective clinical investigation. The study exclusively focused on individuals who had undergone surgical intervention for skin cancer. For the purpose of meticulous data examination, the statistical software SPSS version 21 was harnessed. In the course of this study, a chi-square test was aptly employed. Its purpose was to scrutinize the nuances in patient experiences pertaining to informed consent across four distinct categories, viz., oral informed consent discussion (Oral ICD), written informed consent discussion (Written ICD), video-assisted informed consent discussion (video-assisted ICD), and digitally assisted informed consent discussion (digital-assisted ICD). The primary dataset of this inquiry was diligently gathered via a structured questionnaire administered to a targeted cohort of 160 patients. Within this sample, a balanced representation of genders was observed, encompassing 82 males and 78 females. Their collective age span ranged from 18 to 92 years, with an average age of 71 years. A randomized selection methodology was employed to include participants in this study during the period spanning from July 2017 to August 2018. Results: Significant differences were observed across the groups for all research questions, highlighting variations in patient responses. Video-assisted and digital-assisted IC were rated as superior in patient satisfaction with information compared to written and oral IC. Demographic profiles of the four study groups were found to be comparable. Conclusion: The findings of this study indicate that the incorporation of digital technologies in the informed consent process can enhance patient understanding during outpatient elective skin cancer surgeries. These results have important implications for increasing patient satisfaction and improving the SDM process within the hospital environment. [ABSTRACT FROM AUTHOR]

Objective: Although antipsychotic medications are considered first-line treatment for psychosis, rates of discontinuation and nonadherence are high, and debate persists about their use. This pilot study aimed to explore the usability, feasibility, and potential impact of a shared decision making (SDM) intervention, the Antipsychotic Medication Decision Aid (APM-DA), for decisions about use of antipsychotic medications. Methods: A pilot randomized controlled trial was conducted with 17 participants in a first-episode psychosis program. Nine participants received the APM-DA, and eight received usual care. Results: After their appointments, intervention group participants had less decisional conflict and greater satisfaction with decisions than control group participants had. Use of the APM-DA did not increase appointment length. Comparison of the intervention outcomes with the control outcomes was limited because of the small sample. Conclusions: The results support the feasibility and usability of an SDM process via the use of the APM-DA in routine community psychosis care. [ABSTRACT FROM AUTHOR]

Reducing low-density lipoprotein cholesterol levels lowers the risk of atherosclerotic cardiovascular disease. With the current and future portfolios of emerging lipid-lowering therapies included in various national and international guidelines, the objectives of this study were (i) to investigate the perceptions of UK prescribers', including doctors, pharmacists, and nurses, on current lipid management for cardiovascular diseases and prescriptions of novel lipid-lowering therapies, and (ii) to explore the challenges and facilitating factors of prescribing novel lipid-lowering therapies through qualitative interviews. Qualitative semi-structured interviews with twelve medical and non-medical prescribers were conducted, around 20–30 min in length. The interviews were audio-recorded and transcribed on an online platform. A thematic analysis was deployed. Four major themes emerged from the analysis: (1) prescribing barriers; (2) prescribing enablers; (3) inter-profession variability; and (4) health literacy. These themes highlighted the contrast between the need for optimal shared decision making and the various constraints in practice. Participants expressed their inexperience with novel lipid-lowering therapies and acknowledged the requirement and importance of these agents for primary cardiovascular disease prevention. Participants recognised confidence and competence as key drivers for prescribing therapies and welcomed further education and training to enhance their skillset. Patients' misconceptions towards current lipid-lowering therapies contributed to their refusal of newer agents, highlighting a requirement to improve patient education. Targeting communities through awareness campaigns was identified as a viable solution. [ABSTRACT FROM AUTHOR]

Objective. Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with a wide spectrum of clinical manifestations. A decision aid (DA) for SLE was developed and implemented in 15 rheumatology clinics throughout the United States. This study explored the experiences of patients who viewed the DA to understand how patients engage with and respond to the SLE DA. Methods. We conducted a qualitative descriptive study using semistructured interviews with a convenience sample of 24 patients during May to July 2022. Results. Patients recognized the value of the SLE DA in providing general knowledge about SLE and different treatment options. However, patients expressed a desire for more comprehensive lifestyle information to better manage their condition. Another theme was the importance of having multiple formats available to cater to their different needs, as well as tailoring the DA to different stages of SLE. Conclusion. This study contributes to a broader understanding of how to provide patient-centered care for patients with SLE by offering practical insights that can inform the development of more effective, patient-centric health information technologies for managing chronic diseases, ultimately improving patient outcomes. Overall, this study underscores the significance of optimizing both the information content and determining the appropriate delivery of the tool for its future sustainability. [ABSTRACT FROM AUTHOR]

BackgroundAimsMethodsResultsConclusionClient-centred care and shared decision making are prevailing principles in healthcare. For people with aphasia (PWA) this is difficult. There is a need for diagnostic instruments that are accessible for PWA and capture their needs, values and preferences (NV&P) for rehabilitation.This paper reports on a collaboration between occupational therapists (OTs), PWA and speech language therapists that aimed to investigate current barriers and facilitators that OTs experience in assessing the client’s NV&P and create and evaluate supportive tools to enable OTs to help PWA in formulating their NV&P.The research consisted of two phases.Phase one: qualitative research was conducted with semi-structured interviews with OTs about their current approach and their needs in assessing clients’ NV&P. The interviews were transcribed, coded and themes were identified.Phase two: tools for the in-patient setting were developed together with PWA, based on the analysis from the first phase. These tools were piloted, and feedback groups were held, in order to further refine the materials.Results from interviews showed that there is a need for instruments to assess the clients’ NV&P for in-patient and out-patient settings. The clinical phase focusses on activities of daily living. In the out-patient phase the focus is on daily activities. For the clinical phase, a set of 55 photos in 8 categories was developed, with which the patient’s NV&P can be determined.OTs need tools to support their conversation with PWA about their NV&P. In collaboration with OTs and PWA tools were developed. [ABSTRACT FROM AUTHOR]

Background: Contemporary society is witnessing a surge in non-surgical aesthetics and plastic surgery, reflecting a growing interest in physical enhancement and rejuvenation. However, despite this burgeoning trend, there remains a gap in the literature concerning the ethical considerations, patient empowerment strategies, and empathetic engagement within these fields. Methodology: This systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, systematically searching relevant literature from January 2010 to January 2024 across multiple databases. The search aimed to identify studies focusing on ethics, empowerment, and empathy within aesthetics and plastic surgery. Thematic analysis was utilised to synthesise the findings from the selected studies. Results: The systematic literature search yielded 344 articles, from which 16 met the inclusion criteria. Thematic analysis of these studies revealed key themes revolving around ethical considerations, patient empowerment, empathetic engagement, and the concept of empowered empathy. Additionally, the review proposed the Harmonised Ethical and Empowered Empathy for Aesthetic Literacy (HEEAL) paradigm as a guiding framework for personalised practice in these fields. Conclusions: Empathy, while acknowledged as essential for patient care, presents challenges such as empathy contagion and fatigue. The proposed HEEAL paradigm provides a comprehensive framework for delivering personalised patient-centred care in non-surgical aesthetics and plastic surgery. The review highlights the critical role of empowered empathy in navigating the complexities of patient care, ensuring both patient satisfaction and practitioner resilience in the face of emotional demands. Level of Evidence: Not ratable [ABSTRACT FROM AUTHOR]

Background: Listening to patient voices is critical, in terms of how people experience their condition as well as their treatment preferences. This research explored the patient journey, therapy attributes and goals among treatment experienced adults with chronic lymphocytic leukemia (CLL). We sought to understand patient experiences, needs and expectations to identify areas for improvement of treatment and care delivery. Methods: Two online surveys were developed for completion by CLL patients. In Stage 1, participants completed a best-worst scaling (BWS) task to evaluate eleven previously validated healthcare journey moments that matter (MTM). Responses were used to generate the patient experience index (PEI) score. In Stage 2, participants completed a survey that included both a discrete choice experiment (DCE) to assess drivers of treatment preferences by evaluating the relative attribute importance (RAI) of seven features and a BWS exercise which explored long-term treatment goals. Results: Twenty-five patients completed Stage 1 and thirty patients Stage 2. Treatment experience was balanced between oral and intravenous medication. The most important/least satisfied MTM were treatment effectiveness, access to support and other treatments as well as monitoring progress. The median PEI score was 66.2 (out of 100). DCE results demonstrated that patients most value treatments for CLL that are associated with prolonged progression free survival (PFS; RAI: 24.6%), followed by treatments that have a lower risk of severe side effects and lower out-of-pocket costs (RAI: 19.5%, 17.4%, respectively). The remainder of the weight in decision making (38.5%) was split between the remaining attributes, namely 'mild to moderate side effects' (13.4%), 'long-term risks' (12.2%), type of treatment (i.e., oral, IV or a combination of oral and IV; 8.7%) and treatment duration (i.e., ongoing versus fixed; 4.2%). Patients preferred oral to intravenous therapy. The most valued long-term treatment goal was to be physically healthy, followed by living a long life, spending time with family/friends, and avoiding hospitalization. Conclusion: Treatment experienced patients with CLL are focused on receiving effective, safe therapies and value long PFS. Consideration and discussion of other attributes, such as once daily dosing, oral only medication, out-of-pocket costs and access to support services may affect patient treatment choices and ultimately enhance their healthcare experience and outcomes. [ABSTRACT FROM AUTHOR]

Background: To examine the willingness of older patients to take less diabetes medication (de‐intensify) and to identify characteristics associated with willingness to de‐intensify treatment. Methods: Survey conducted in 2019 in an age‐stratified, random sample of older (65–100 years) adults with diabetes on glucose‐lowering medications in the Kaiser Permanente Northern California Diabetes Registry. We classified survey responses to the question: "I would be willing to take less medication for my diabetes" as willing, neutral, or unwilling to de‐intensify. Willingness to de‐intensify treatment was examined by several clinical characteristics, including American Diabetes Association (ADA) health status categories used for individualizing glycemic targets. Analyses were weighted to account for over‐sampling of older individuals. Results: A total of 1337 older adults on glucose‐lowering medication(s) were included (age 74.2 ± 6.0 years, 44% female, 54.4% non‐Hispanic white). The proportions of participants willing, neutral, or unwilling to take less medication were 51.2%, 27.3%, and 21.5%, respectively. Proportions of willing to take less medication varied by age (65–74 years: 54.2% vs. 85+ years: 38.5%) and duration of diabetes (0–4 years: 61.0% vs. 15+ years: 44.2%), both p < 0.001. Patients on 1–2 medications were more willing to take less medication(s) compared with patients on 10+ medications (62.1% vs. 46.6%, p = 0.03). Similar proportions of willingness to take less medications were seen across ADA health status, and HbA1c. Willingness to take less medication(s) was similar across survey responses to questions about patient‐clinician relationships. Conclusions: Clinical guidelines suggest considering treatment de‐intensification in older patients with longer duration of diabetes, yet patients with these characteristics are less likely to be willing to take less medication(s). See related Editorial by Pilla and Maruthur [ABSTRACT FROM AUTHOR]

We developed a patient decision aid to enhance patient participation in amputation level decision making when there is a choice between a transmetatarsal or transtibial amputation. In accordance with International Patient Decision Aid Standards, we developed an amputation level patient decision aid for patients who are being considered for either a transmetatarsal or transtibial amputation, incorporating qualitative literature data, quantitative literature data, qualitative provider and patient interviews, expert panel input and iterative patient feedback. The rapid qualitative literature review and qualitative interviews identified five domains outcome priority domains important to patients facing amputation secondary to chronic limb threatening ischemia: 1) the ability to walk, 2) healing and risk for reamputation, 3) rehabilitation program intensity, 4) ease of prosthetic use, and 5) limb length after amputation. The rapid quantitative review identified only two domains with adequate evidence comparing differences in outcomes between the two amputation levels: mobility and reamputation. Patient, surgeon, rehabilitation and decision aid expert feedback allowed us to integrate critical facets of the decision including addressing the emotional context of loss of limb, fear and anxiety as an obstacle to decision making, shaping the decision in the context of remaining life years, and how to facilitate patient knowledge of value tradeoffs. Amputation level choice is associated with significant outcome trade-offs. The AMPDECIDE patient decision aid can facilitate acknowledgment of patient fears, enhance knowledge of amputation level outcomes, assist patients in determining their personal outcome priorities, and facilitate shared amputation level decision making. • A novel (AMPDECIDE) patient decision aid has been developed to facilitate shared decision making in transmetatarsal/transtibial amputation level decisions. • The AMPDECIDE decision aid has undergone rigorous iterative development with patient, provider, and expert panel input. • The AMPDEDIDE decision aid informs patients of key amputation level outcome differences and assists them in identifying their personal outcome priorities. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to explore patients’ experience of participation in the treatment decision of proton beam therapy versus conventional radiotherapy. Background: Proton beam therapy (PBT) has become a treatment option for some cancer patients receiving radiotherapy. The decision to give PBT instead of conventional radiotherapy (CRT) needs to be carefully planned together with the patient to ensure that the degree of participation is based on individuals’ preferences. There is a knowledge gap of successful approaches to support patients’ participation in the decision-making process, which is particularly important when it comes to the situation of having to choose between two treatment options such as PBT and CRT, with similar expected outcomes. Method: We conducted a secondary analysis of qualitative data collected from interviews with patients who received PBT for their brain tumor. Transcribed verbatims from interviews with 22 patients were analyzed regarding experiences of participation in the decision-making process leading to PBT. Findings: Participants experienced their participation in the decision-making process to a varying degree, and with individual preferences. Four themes emerged from data: to be a voice that matters, to get control over what will happen, being in the hand of doctors’ choice, and feeling selected for treatment. Conclusion: A decision for treatment with PBT can be experienced as a privilege but can also cause stress as it might entail practical issues affecting everyday life in a considerable way. For the patient to have confidence in the decision-making process, patients’ preferences, expectations, and experiences must be included by the healthcare team. Including the patient in the healthcare team as an equal partner by confirming the person enables and facilitates for patients’ voice to be heard and reckoned with. Person-centered care building on a partnership between patients and healthcare professionals should provide the right basis for the decision-making process. [ABSTRACT FROM AUTHOR]

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Background: Despite significant family caregiver (FCG) burnout, there are currently no tested interventions to support the FCG role after left ventricular assist device (LVAD) implantation or formalized training for clinicians to support FCGs. Objective: We adapted the existing ENABLE (Educate, Nurture, Advise Before Life Ends) intervention to LVAD clinicians and FCGs and assessed clinical implementation and dissemination. Methods: ENABLE-LVAD is an interactive, self-paced clinician training coupled with FCG-facing guidebooks and resources. Implementation and dissemination were evaluated by the RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) framework. Results: As of May 2023, 187 clinicians registered for the training, and 41 completed all modules (22.0% completion rate). Of those who completed the training and responded to a 6-month survey, one-third (n = 10, 33.3%) used ENABLE-LVAD with FCGs, and 100% of those planned to continue using it. The primary barrier to completing the training was time. Conclusions: The ENABLE-LVAD clinician training was successfully disseminated and implemented as a useful resource to support LVAD FCGs. [ABSTRACT FROM AUTHOR]

Rectal cancer treatment often encompasses multiple steps and options, with benefits and risks that vary based on the individual. Additionally, patients facing rectal cancer often have preferences regarding overall quality of life, which includes bowel function, sphincter preservation, and ostomies. This article reviews these data in the context of shared decision-making approaches in an effort to better inform patients deliberating treatment options for rectal cancer. [ABSTRACT FROM AUTHOR]

Copyright of Die Gynäkologie is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: Guidelines in medicine are essential tools to provide quality and standardised medical care. We analysed the quality of aesthetic medicine guidelines. Methods: A systematic review with a prospective registration protocol (https://osf.io/8pdyv) of databases (MEDLINE, EMBASE, Web of Science, Scopus, CDSR), web pages of scientific societies and grey literature was done from inception to February 2023 and without language restrictions. Quality was evaluated using AGREE II (% of the maximum score), RIGHT (% of the total 35 items) and a shared decision making (SDM) quality assessment tool (31 items score) individually and in duplicate, respectively. Results: Six (86%) guidelines were classified as not recommended; one (14%) was recommended with modifications, and all were classified as poorly reported (7/7; 100%). The median overall quality was 27% (IQR: 26-43) and 26% (IQR 15-36) for AGREE II and RIGHT, respectively. No document used these tools for its development. SDM appeared superfluity in almost all of the guidelines explored. Conclusions: Aesthetic medicine and surgical guidelines had low quality and must be improved. There is a wide range of improvement, especially in applicability, reporting of evidence, recommendations, conflict of interest, quality control and SDM. These guidelines require a rigorous methodology based on systematic reviews to ensure quality evidence-based recommendations. [ABSTRACT FROM AUTHOR]

Introduction: This paper outlines the design, implementation, and usability study results of the patient empowerment process for chronic disease management, using Patient Reported Outcome Measurements and Shared Decision-Making Processes. Background: The ADLIFE project aims to develop innovative, digital health solutions to support personalized, integrated care for patients with severe long-term conditions such as Chronic Obstructive Pulmonary Disease, and/or Chronic Heart Failure. Successful long-term management of patients with chronic conditions requires active patient self-management and a proactive involvement of patients in their healthcare and treatment. This calls for a patient-provider partnership within an integrated system of collaborative care, supporting self-management, shared-decision making, collection of patient reported outcome measures, education, and follow-up. Methods: ADLIFE follows an outcome-based and patient-centered approach where PROMs represent an especially valuable tool to evaluate the outcomes of the care delivered. We have selected 11 standardized PROMs for evaluating the most recent patients' clinical context, enabling the decision-making process, and personalized care planning. The ADLIFE project implements the "SHARE approach' for enabling shared decision-making via two digital platforms for healthcare professionals and patients. We have successfully integrated PROMs and shared decision-making processes into our digital toolbox, based on an international interoperability standard, namely HL7 FHIR. A usability study was conducted with 3 clinical sites with 20 users in total to gather feedback and to subsequently prioritize updates to the ADLIFE toolbox. Results: User satisfaction is measured in the QUIS7 questionnaire on a 9-point scale in the following aspects: overall reaction, screen, terminology and tool feedback, learning, multimedia, training material and system capabilities. With all the average scores above 6 in all categories, most respondents have a positive reaction to the ADLIFE PEP platform and find it easy to use. We have identified shortcomings and have prioritized updates to the platform before clinical pilot studies are initiated. Conclusions: Having finalized design, implementation, and pre-deployment usability studies, and updated the tool based on further feedback, our patient empowerment mechanisms enabled via PROMs and shared decision-making processes are ready to be piloted in clinal settings. Clinical studies will be conducted based at six healthcare settings across Spain, UK, Germany, Denmark, and Israel. [ABSTRACT FROM AUTHOR]

Background: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. Methods: We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. Results: Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. Conclusions: Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy. [ABSTRACT FROM AUTHOR]

The authors consider the legal and ethical considerations of offering a time-limited trial of a potentially non-beneficial intervention in the setting of patient or surrogate requests to pursue aggressive treatment. The likelihood of an intervention's success is rarely a zero-sum game, and an intervention's risk-to-benefit ratio may be indiscernible without further information (often, a matter of time). [ABSTRACT FROM AUTHOR]

Objective: Compared to Western cultures, self-determination needs are expressed and pursued differently in Asian cultures, where interdependence and achieving greater good for the group are prioritized. To accommodate these needs, we propose the use of family-centered decision making (FCDM) to complement the shared decision-making (SDM) practice, fostering collaborative psychiatric care for Asian individuals residing in the United States. Method: This article synthesizes various literature to outline the similarities and differences between SDM and FCDM, discuss implementation steps, challenges associated with implementation, potential solutions, and future research considerations. Results: Our review suggests that FCDM is more responsive to and inclusive of Asian cultural experience, better reflecting these cultures' expression of self-determination. We propose a five-step framework for FCDM implementation in psychiatric rehabilitation for Asian and Asian American individuals, while identifying three further practical considerations: logistical difficulties, intrafamilial differences, and making the decision to use FCDM or not. Conclusions and Implications for Practice: Given the heterogeneity of Asian individuals in the United States, we urge providers to allow flexibility in practicing FCDM. We outline the important components for providers to help individuals with psychiatric disabilities distinguish between the characteristics of FCDM and SDM, evaluate the potential pros and cons of utilizing FCDM, and then initiate FCDM if appropriate or requested by the individuals. Impact and Implications: Family-centered decision-making (FCDM) complements shared decision making, promoting culturally inclusive and responsive care. This article examines how FCDM accommodates the distinctive self-determination needs of Asian individuals in the United States and highlights its potential for fostering a collaborative approach in psychiatric rehabilitation. It discusses FCDM implementation steps, its challenges, and highlights the importance of further research to better understand and enhance FCDM in practice. [ABSTRACT FROM AUTHOR]

Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life. To examine factors contributing to nonconcordance between end-of-life care and advance care planning. In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations. Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%). This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Surgery can help patients with leg pain caused by sciatica recover faster, but by 12 months outcomes are similar to nonsurgical management. For many the decision to have surgery may require reflection, and patient decision aids are an evidence‐based clinical tool that can help guide patients through this decision. Objective: The aim of this study was to develop and refine a decision aid for patients with sciatica who are deciding whether to have surgery or 'wait and see' (i.e., try nonsurgical management first). Design: Semistructured interviews with think‐aloud user‐testing protocol. Participants: Twenty clinicians and 20 patients with lived experience of low back pain or sciatica. Outcome Measures: Items from Technology Acceptance Model, Preparation for Decision Making Scale and Decision Quality Instrument for Herniated Disc 2.0 (knowledge instrument). Methods: The prototype integrated relevant research with working group perspectives, decision aid standards and health literacy guidelines. The research team refined the prototype through seven rounds of user‐testing, which involved discussing user‐testing feedback and implementing changes before progressing to the next round. Results: As a result of working group feedback, the decision aid was divided into sections: before, during and after a visit to the surgeon. Across all rounds of user‐testing, clinicians rated the resource 5.9/7 (SD = 1.0) for perceived usefulness, and 6.0/7 for perceived ease of use (SD = 0.8). Patients reported the decision aid was easy to understand, on average correctly answering 3.4/5 knowledge questions (SD = 1.2) about surgery for sciatica. The grade reading score for the website was 9.0. Patients scored highly on preparation for decision‐making (4.4/5, SD = 0.7), suggesting strong potential to empower patients. Interview feedback showed that patients and clinicians felt the decision aid would encourage question‐asking and help patients reflect on personal values. Conclusions: Clinicians found the decision aid acceptable, patients found it was easy to understand and both groups felt it would empower patients to actively engage in their care and come to an informed decision that aligned with personal values. Input from the working group and user‐testing was crucial for ensuring that the decision aid met patient and clinician needs. Patient or Public Contribution: Patients and clinicians contributed to prototype development via the working group. [ABSTRACT FROM AUTHOR]

The COVID‐19 pandemic prompted a rapid shift from in‐person to virtually‐delivered care. Many youth with chronic pain have the ability to access care virtually; however, little is known about the efficacy of pain care for youth with chronic pain delivered virtually when compared to in‐person. Such evidence is essential to guide youth in making decisions about their care, but also to inform what options health professionals present to youth. The purpose of this systematic review and meta‐analysis was to examine the efficacy of interventions that are delivered in‐person versus virtually for youth with chronic pain. Five databases (i.e., CINAHL, EMBASE, MEDLINE, APA PsycINFO, and Web of Science) were searched in October 2022 to identify randomized controlled trials that compare single/multimodal interventions for pediatric chronic pain delivered in‐person versus virtually. A total 3638 unique studies were identified through database and other searching, two of which satisfied established criteria for inclusion in this review. Both studies compared psychological interventions delivered virtually versus in‐person for youth with chronic pain and showed comparable efficacy across modalities. The planned meta‐analyses could not be conducted due to different outcomes within each study that could not be combined. This systematic review highlights a critical gap in the evidence regarding the efficacy of virtually delivered interventions for youth with chronic pain. This evidence is necessary to inform treatment decisions for youth, and further research is required to develop the evidence to inform clinical interventions, especially as virtual treatments continue to be offered. [ABSTRACT FROM AUTHOR]