Changes in intention to use an interprofessional approach to decision-making following training: a cluster before-and-after study.

BACKGROUND: Health professionals in home care work in interprofessional teams. Yet most training in decision support assumes a one-on-one relationship with patients. We assessed the impact of an in-person training session in interprofessional shared decision-making (IP-SDM) on home care professionals' intention to adopt this approach. METHODS: We conducted a secondary analysis of a cluster stepped-wedge trial using a before-and-after study design. We collected data among home care professionals from November 2016 to February 2018 in 9 health and social services centers in Quebec, Canada. The intervention was an in-person IP-SDM training session. Intention to engage in IP-SDM pre- and post-session (dependent variable) was compared using a continuing professional development evaluation scale (CPD-Reaction) informed by the Godin's Integrated Behavioral Model for health professionals. We also assessed socio-demographic and psychosocial variables (beliefs about capabilities, beliefs about consequences, social influence and moral norm). We performed bivariate and multivariate analysis to identify factors influencing post-intervention intention. We used the STROBE reporting guidelines for observational studies to report our results. RESULTS: Of 134 respondents who provided complete pairs of questionnaires (pre- and post-), most were female (90.9%), mean age was 42 (± 9.3) years and 66.9% were social workers. Mean intention scores decreased from 5.84 (± 1.19) to 5.54 (± 1.35) (Mean difference = -0.30 ± 1.16; p = 0.02). Factors associated with higher intention post-intervention were social influence (ß = 0.34, p = 0.01) and belief about capabilities (ß = 0.49, p < 0.01). CONCLUSION: After in-person IP-SDM training, healthcare professionals' intention to engage in IP-SDM decreased. However, the scope of this decrease is probably not clinically significant. Due to their association with intention, beliefs about capabilities, which translate into having a sense of self-competency in the new clinical behavior, and social influences, which translate into what important others think one should be doing, could be targets for future research aiming to implement IP-SDM in home care settings.

Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research.

OBJECTIVE: Patient and public involvement (PPI) is an essential ethical component in mental health research, and represents a major opportunity to improve translational mental health research. The goals of this review were to (1) provide a comprehensive overview of empirical research focusing on PPI of children and young people (CYP) in mental health research studies; (2) evaluate the results with CYP and parents of those affected; and (3) derive recommendations for PPI of CYP in future mental health research studies. METHODS: Based on an extensive literature review following the PRISMA guidelines, studies including CYP (age range: 0-21 years) in mental health research were identified and examined along a two-part analysis process considering their usability for mental health research. The conclusions drawn from the studies concerning CYP involvement were summarized and recommendations derived. RESULTS: Overall, 19 articles reported PPI of CYP (age range: 10-26 years) in mental health research and were included for further analyses. The integrated studies differed in the type of PPI, and in the way the participation and involvement processes were presented. CONCLUSION: Progress has been made in engaging CYP in mental health research, but there is a need for international standards, operationalization, and evaluation measures. Future research should go beyond merely reporting the PPI process itself. It should clearly indicate how and to what extent feedback from these PPI members was incorporated throughout the research process.

Patient and family engagement interventions for hospitalized patient safety: A scoping review.

AIM: To summarize existing studies that focused on improving hospitalized patient safety through patient and family engagement interventions to identify priorities and gaps. DESIGN: A scoping review. METHODS: Eight databases and citations of important reviews were searched on 30 September 2022. Two researchers independently screened the records. Then, two researchers extracted the data and cross-checked. The results were synthesized narratively, and a comparison was performed for studies from China and those from other countries. RESULTS: Ninety-eight studies were included. The results indicated that patient and family engagement interventions were applied to decrease the incidence of patient safety incidents, and to improve the healthcare providers' and patients' knowledge, attitude or practice of patient safety. Most studies only engaged patients and families at the direct care level, and the engagement strategies at the organization and health system levels were insufficient. For stakeholders, many studies failed to consider patients' perspectives in intervention design and report taking staff training as a supportive strategy. Healthcare providers, especially nurses, were the main implementers of current interventions. Certain differences were observed between studies from China and those from other countries in the above aspects. CONCLUSIONS: International interest in engaging patient and family for patient safety is growing. Future studies should enhance the patient and family engagement as a partner in various patient safety at the direct care level, and further explore the engagement at the organization and health system levels. RELEVANCE TO CLINICAL PRACTICE: Nurses, as the main formal caregivers for patients, should promote patient and family engagement in patient safety, especially at direct care level. Nurse should also incorporate the perspectives of patients in the design and implementation of interventions. REPORTING METHOD: PRISMA-ScR Checklist.

Shared decision making in the treatment of pediatric strabismus.

PURPOSE: To quantify the results of shared decision making in pediatric strabismus surgery from the parent perspective using the nine-item Shared Decision Making (SDM) Questionnaire and the associations of SDM score with parental education level; secondarily, to evaluate postoperative parental satisfaction as a function of child age, parental education level, SDM scores, and motor outcomes. METHODS: Consecutive parents of children 2-14 years of age with concomitant manifest strabismus that consented to strabismus surgery were surveyed using the SDM Questionnaire. A four-point Likert scale was used to gauge the level of postoperative satisfaction (POS). Potential predictors were estimated in multivariable regression analysis, with results adjusted for education level, children's age, and motor outcomes. RESULTS: A total of 100 parents (86 women) completed the survey and were included. Significant differences for SDM score were found between individuals with university-level versus the other three educational levels (P < 0.001 for primary and secondary levels; P = 0.017 for college or lyceum level). Categorical regression analysis showed that POS level was inversely correlated with education level and positively correlated with SDM score. Children's age at time of surgery and postoperative motor outcome were not significantly associated with POS. CONCLUSIONS: In our study cohort, SDM score was correlated with educational level. Satisfaction was greater among responders with higher SDM scores, indicating that SDM may help improve parent-reported satisfaction with treatment results.

Development and evaluation of a decision aid for women eligible for organized breast cancer screening according to international standards: A multi-method study.

BACKGROUND: and purpose: In France, women lack information to make a shared decision to start breast cancer screening. Decision aids are useful to facilitate this discussion, yet few meet international standards. The objective of this project was to build, validate and measure the quality of a decision aid for organized breast screening in France, in line with international standards, intended for both women and healthcare professionals. MATERIALS AND METHODS: This mixed-methods study was conducted between January 2017 and June 2022. The prototype was developed from a qualitative study, systematic review and targeted literature review and alpha tested during two Delphi rounds. Readability was evaluated with the Flesch score and content with International Patient Decision Aid Standards Instrument (IPSASi). RESULTS: An online decision aid, accessible at www.Discutons-mammo.fr, written in French was developed. The content included eligibility, information about breast screening the advantages and disadvantages of screening, patient preferences and a patient-based discussion guide using text, infographics, and videos. The Flesch readability test score was 65.4 and the IPDASi construct quality score was 176 out of 188. CONCLUSIONS: This decision aid complies with IPDASi standards and could help women eligible for breast screening in France make a shared decision with a specialized healthcare professional about whether or not to participate in organized breast screening.

The dynamics of knowledge sharing in chronically ill patient-led online health communities.

Patient-led online health communities (OHCs) provide an accessible way for patients to share their knowledge without the constraints of time and distance. By sharing knowledge, patients receive information from other members of the community that expands their knowledge. In this way, knowledge 'grows' and enhances the ability of patients in the community to adequately self-care in everyday life, that is, patient empowerment. This paper aims to understand the dynamics of knowledge sharing in patient-led OHCs. In search of an answer to the research question, the virtual ethnography research design was applied using an observational data collection method. The observational research was conducted in five patient-led OHCs of chronically ill patients on the Lithuanian version of the Facebook Platform. The results of the study provided insight into the dynamics of knowledge sharing by detailing the design of the discussions that took place in the studied communities and by characterising the path of knowledge sharing.

Perceived vs Actual Shared Decision-Making Behavior Among Urologists: A Convergent, Parallel, Mixed-Methods Study of Self-Reported Practice.

OBJECTIVE: To evaluate the association between self-perceived use of shared decision-making among urologists with use of validated prediction tools and self-described surgical decision-making. METHODS: This is a convergent mixed methods study of these parallel data from two modules (Shared Decision Making and Validated Prediction tools) within the 2019 American Urological Association (AUA) Annual Census. The shared decision-making (SDM) module queried aspects of SDM that urologists regularly used. The validated prediction tools module queried whether urologists regularly used, trusted, and found prediction tools helpful. Selected respondents to the 2019 AUA Annual Census underwent qualitative interviews on their surgical decision-making. RESULTS: In the weight sampled of 12,312 practicing urologists, most (77%) reported routine use of SDM, whereas only 30% noted regular use of validated prediction tools. On multivariable analysis, users of prediction tools were not associated with regular SDM use (31% vs 28%, P = .006) though was associated with use of decision aids f (32% vs 26%, P < .001). Shared decision-making emerged thematically with respect to matching treatment options, prioritizing goals, and navigating challenging decisions. However, the six specific components of shared decision-making ranged in their mentions within qualitative interviews. CONCLUSION: Most urologists report performing SDM as supported by its thematic presence in surgical decision-making. However, only a minority use validated prediction tools and urologists infrequently mention specific SDM components. This discrepancy provides an opportunity to explore how urologists perform SDM and can be used to support integrated strategies to implement SDM more effectively in clinical practice.

Implementation of a Decision Aid for Hip and Knee Osteoarthritis in Orthopedics: A Mixed-Methods Process Evaluation.

BACKGROUND: In orthopedics, the use of patient decision aids (ptDAs) is limited. With a mixed-method process evaluation, we investigated patient factors associated with accepting versus declining the use of the ptDA, patients' reasons for declining the ptDA, and clinicians' perceived barriers and facilitators for its use. METHODS: Patients with an indication for joint replacement surgery (N = 153) completed questionnaires measuring demographics, physical functioning, quality of life (EQ-5D-3L), and a visual analog scale (VAS) pain score at 1 time point. Subsequently, their clinician offered them the relevant ptDA. Using a retrospective design, we compared patients who used the ptDA (59%) with patients who declined (41%) on all these measures as well as the chosen treatment. If the use of the ptDA was declined, patients' reasons were recorded by their clinician and analysed (n = 46). To evaluate the experiences of clinicians (n = 5), semistructured interviews were conducted and thematically analyzed. Clinicians who did not use the ptDA substantially (<10 times) were also interviewed (n = 3). RESULTS: Compared with patients who used the ptDA, patients who declined use had higher VAS pain scores (7.2 v. 6.2, P < .001), reported significantly worse quality of life (on 4 of 6 EQ-5D-3L subscales), and were less likely to receive nonsurgical treatment (4% v. 28%, P < .001). Of the patients who declined to use the ptDA, 46% said they had enough information and felt ready to make a decision without the ptDA. The interviews revealed that clinicians considered the ptDAs most useful for newly diagnosed patients who had not received previous treatment. CONCLUSION: These results suggest that the uptake of a ptDA may be improved if it is introduced in the early disease stages of hip and knee osteoarthritis. HIGHLIGHTS: Patients who declined the use of a patient decision aid (ptDA) for hip and knee osteoarthritis reported more pain and worse quality of life.Most patients who declined to use a ptDA felt sufficiently well informed to make a treatment decision.Patients who declined the ptDA were more likely to have received prior treatment in primary care.Clinicians found the ptDA to be a helpful addition to the consultation, particularly for newly diagnosed patients.

Involving Patients into the LifeChamps Project: Preliminary Findings.

Patient involvement in research has been highlighted as a major requirement for the development of products and services that cover actual patients' needs. However, there has not been an agreement on a commonly used standard for patient involvement in research, at least not in the EU, partially because of lack of common terminology and implementation methodology. Within the standardization activities of "LifeChamps: A Collective Intelligent Platform To Support Cancer Champions", this qualitative study was developed to discover patients' views for their engagement in research. This is an ongoing qualitative study of semi-structured interviews of cancer survivors aged over 65 years of age, exiting the feasibility studies of the LifeChamps project in Stockholm and Thessaloniki. Findings from the thematic analysis of this study are expected to indicate requirements for involvement of patients in research studies as participants.

Patient-Led Approaches to a Vaginal Birth After Cesarean Delivery Calculator.

OBJECTIVE: To describe patient approaches to navigating their probability of a vaginal birth after cesarean (VBAC) within the context of prediction scores generated from the original Maternal-Fetal Medicine Units' VBAC calculator, which incorporated race and ethnicity as one of six risk factors. METHODS: We invited a diverse group of participants with a history of prior cesarean delivery to participate in interviews and have their prenatal visits recorded. Using an open-ended iterative interview guide, we queried and observed these individuals' mode-of-birth decisions in the context of their VBAC calculator scores. We used a critical and feminist approach to analyze thematic data gleaned from interview and visit transcripts. RESULTS: Among the 31 participants who enrolled, their self-identified racial and ethnic categories included: Asian or South Asian (2); Black (4); Hispanic (12); Indigenous (1); White (8); and mixed-Black, -Hispanic, or -Asian background (4). Predicted VBAC success probabilities ranged from 12% to 95%. Participants completed 64 interviews, and 14 prenatal visits were recorded. We identified four themes that demonstrated a range of patient-led approaches to interpreting the probability generated by the VBAC calculator: 1) rejecting the role of race and ethnicity; 2) reframing failure, finding success; 3) factoring the physical experience of labor; and 4) modifying the probability for VBAC. CONCLUSION: Our findings demonstrate that a numeric probability for VBAC may not be highly valued or important to all patients, especially those who have strong intentions for VBAC. Black and Hispanic participants challenged the VBAC calculator's incorporation of race and ethnicity as a risk factor and resisted the implication it produced, especially that their bodies were less capable of achieving a vaginal birth. Our findings suggest that patient-led approaches to assessing and interpreting VBAC probability may be an untapped resource for achieving a more person-centered, equitable approach to counseling.

Shared Decision-Making and Cardiovascular Health: A Scientific Statement From the American Heart Association.

Shared decision-making is increasingly embraced in health care and recommended in cardiovascular guidelines. Patient involvement in health care decisions, patient-clinician communication, and models of patient-centered care are critical to improve health outcomes and to promote equity, but formal models and evaluation in cardiovascular care are nascent. Shared decision-making promotes equity by involving clinicians and patients, sharing the best available evidence, and recognizing the needs, values, and experiences of individuals and their families when faced with the task of making decisions. Broad endorsement of shared decision-making as a critical component of high-quality, value-based care has raised our awareness, although uptake in clinical practice remains suboptimal for a range of patient, clinician, and system issues. Strategies effective in promoting shared decision-making include educating clinicians on communication techniques, engaging multidisciplinary medical teams, incorporating trained decision coaches, and using tools (ie, patient decision aids) at appropriate literacy and numeracy levels to support patients in their cardiovascular decisions. This scientific statement shines a light on the limited but growing body of evidence of the impact of shared decision-making on cardiovascular outcomes and the potential of shared decision-making as a driver of health equity so that everyone has just opportunities. Multilevel solutions must align to address challenges in policies and reimbursement, system-level leadership and infrastructure, clinician training, access to decision aids, and patient engagement to fully support patients and clinicians to engage in the shared decision-making process and to drive equity and improvement in cardiovascular outcomes.

Patient and citizen participation at the organizational level in health technology assessment: an exploratory study in five jurisdictions.

OBJECTIVE: While patient participation in individual health technology assessments (HTAs) has been frequently described in the literature, patient and citizen participation at the organizational level is less described and may be less understood and practiced in HTA bodies. We aimed to better understand its use by describing current practice. METHOD: To elicit descriptive case studies and insights we conducted semi-structured interviews and open-ended questionnaires with HTA body staff and patients and citizens participating at the organizational level in Belgium, France, Quebec, Scotland, and Wales. RESULTS: We identified examples of organizational participation in managerial aspects: governance, defining patient involvement processes, evaluation processes and methods, and capacity building. Mechanisms included consultation, collaboration, and membership of standing (permanent) groups. These were sometimes combined. Participants were usually from umbrella patient organizations and patient associations, as well as individual patients and citizens. DISCUSSION: Although the concept, participation at the organizational level, is not well-established, we observed a trend toward growth in each jurisdiction. Some goals were shared for this participation, but HTA bodies focused more on instrumental goals, especially improving participation in HTAs, while patients and citizens were more likely to offer democratic and developmental goals beyond improving participation processes. CONCLUSION: Our findings provide rationales for organizational-level participation from the perspectives of HTA bodies and patients. The case studies provide insights into how to involve participants and who may be seen as legitimate participants. These findings may be useful to HTA bodies, the patient sector, and communities when devising an organizational-level participation framework.

Understanding how shared decision-making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review.

BACKGROUND: Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision-aids and shared decision-making (SDM) approaches that influence patient outcomes. METHODS: We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. RESULTS: From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. CONCLUSIONS: Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. PATIENT AND PUBLIC CONTRIBUTION: We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research.

Shared Decision Making in Health Care Visits for CKD: Patients' Decisional Role Preferences and Experiences.

RATIONALE & OBJECTIVE: Research on shared decision making (SDM) in chronic kidney disease (CKD) has focused almost exclusively on the modality of kidney replacement treatment. We explored what other CKD decisions are recognized by patients, what their preferences and experiences are regarding these decisions, and how decisions are made during their interactions with medical care professionals. STUDY DESIGN: Cross-sectional study. SETTING & PARTICIPANTS: Patients with CKD receiving (outpatient) care in 1 of 2 Dutch hospitals. EXPOSURE: Patients' preferred decisional roles for treatment decisions were measured using the Control Preferences Scale survey administered after a health care visit with medical professionals. OUTCOME: Number of decisions for which patients experienced a decisional role that did or did not match their preferred role. Observed levels of SDM and motivational interviewing in audio recordings of health care visits, measured using the 4-step SDM instrument (4SDM) and Motivational Interviewing Treatment Integrity coding tools. ANALYTICAL APPROACH: The results were characterized using descriptive statistics, including differences in scores between the patients' experienced and preferred decisional roles. RESULTS: According to the survey (n=122) patients with CKD frequently reported decisions regarding planning (112 of 122), medication changes (82 of 122), or lifestyle changes (59 of 122). Of the 357 reported decisions in total, patients preferred that clinicians mostly (125 of 357) or fully (101 of 357) make the decisions. For 116 decisions, they preferred a shared decisional role. For 151 of 357 decisions, the patients' preferences did not match their experiences. Decisions were experienced as "less shared/patient-directed" (76 of 357) or "more shared/patient-directed" (75 of 357) than preferred. Observed SDM in 118 coded decisions was low (median4; range, 0 - 22). Motivational interviewing techniques were rarely used. LIMITATIONS: Potential recall and selection bias, and limited generalizability. CONCLUSIONS: We identified multiple discrepancies between preferred, experienced, and observed SDM in health care visits for CKD. Although patients varied in their preferred decisional role, a considerable number of patients expressed a preference for shared decision making for many decisions. However, SDM behavior during the health care visits was observed infrequently. PLAIN-LANGUAGE SUMMARY: Shared decision making (SDM) may be a valuable approach for common chronic kidney disease (CKD) decisions, but our knowledge is limited. We collected patient surveys after health care visits for CKD. Patients most frequently experienced decisions regarding planning, medication, and lifestyle. Three decisional roles were preferred by comparable numbers of patients: let the clinician alone decide, let the clinician decide for the most part, or "equally share" the decision. Patients' experiences of who made the decision did not always match their preferences. In audio recordings of the health care visits, we observed low levels of SDM behavior. These findings suggest that the preference for "sharing decisions" is often unmet for a large number of patients.

Adaptation and Implementation of a Shared Decision-Making Tool From One Health Context to Another: Partnership Approach Using Mixed Methods.

BACKGROUND: Osteoarthritis is a leading cause of pain and disability. Knee osteoarthritis accounts for nearly four-fifths of the burden of osteoarthritis internationally, and 10% of adults in the United Kingdom have the condition. Shared decision-making (SDM) supports patients to make more informed choices about treatment and care while reducing inequities in access to treatment. We evaluated the experience of a team adapting an SDM tool for knee osteoarthritis and the tool's implementation potential within a local clinical commissioning group (CCG) area in southwest England. The tool aims to prepare patients and clinicians for SDM by providing evidence-based information about treatment options relevant to disease stage. OBJECTIVE: This study aimed to explore the experiences of a team adapting an SDM tool from one health context to another and the implementation potential of the tool in the local CCG area. METHODS: A partnership approach using mixed methods was used to respond to recruitment challenges and ensure that study aims could be addressed within time restrictions. A web-based survey was used to obtain clinicians' feedback on experiences of using the SDM tool. Qualitative interviews were conducted by telephone or video call with a sample of stakeholders involved in adapting and implementing the tool in the local CCG area. Survey findings were summarized as frequencies and percentages. Content analysis was conducted on qualitative data using framework analysis, and data were mapped directly to the Theoretical Domains Framework (TDF). RESULTS: Overall, 23 clinicians completed the survey, including first-contact physiotherapists (11/23, 48%), physiotherapists (7/23, 30%), specialist physiotherapists (4/23, 17%), and a general practitioner (1/23, 4%). Eight stakeholders involved in commissioning, adapting, and implementing the SDM tool were interviewed. Participants described barriers and facilitators to the adaptation, implementation, and use of the tool. Barriers included a lack of organizational culture that supported and resourced SDM, lack of clinician buy-in and awareness of the tool, challenges with accessibility and usability, and lack of adaptation for underserved communities. Facilitators included the influence of clinical leaders' belief that SDM tools can improve patient outcomes and National Health Service resource use, clinicians' positive experiences of using the tool, and improving awareness of the tool. Themes were mapped to 13 of the 14 TDF domains. Usability issues were described, which did not map to the TDF domains. CONCLUSIONS: This study highlights barriers and facilitators to adapting and implementing tools from one health context to another. We recommend that tools selected for adaptation should have a strong evidence base, including evidence of effectiveness and acceptability in the original context. Legal advice should be sought regarding intellectual property early in the project. Existing guidance for developing and adapting interventions should be used. Co-design methods should be applied to improve adapted tools' accessibility and acceptability.

Status quo of advanced cancer patients participating in shared decision-making in China: a mixed study.

PURPOSE: Patients with advanced cancer are usually willing to participate in shared decision-making (SDM), but in clinical practice, patient participation is easily ignored. This study aimed to analyze the current SDM status of advanced cancer patients and related factors. METHODS: In quantitative research, we administered a cross-sectional survey to 513 advanced cancer patients in 16 tertiary hospitals in China. A sociodemographic information questionnaire, the Control Preference Scale (CPS), and Perceived-Involvement in Care Scale (PICS) were used to analyze current SDM status and influencing factors. Our qualitative research was based on the Ottawa Decision Support Framework (ODSF), and 17 advanced cancer patients were interviewed to explore their perceptions of SDM. RESULTS: Our quantitative results show that patients' actual and expected decision-making participation differed; statistically significant influencing factors were age, insurance, and whether patients were worried about the therapeutic effects. We also found that dynamic decision-making mode changes, disease information acquisition, decision-making participation obstacles, and family members' roles affected patients' SDM through qualitative interviews. CONCLUSION: Advanced cancer patients' SDM in China is dominated by sharing and continuously fluctuates. Influenced by Chinese traditional culture, family members play an important role in SDM. In clinical work, we should pay attention to the dynamic changes in patients' participation in decision-making and the role of family members.

Shared Decision Making in the Care of Patients With Cancer.

Shared decision making (SDM) is a method of care that is suitable for the care of patients with cancer. It involves a collaborative conversation seeking to respond sensibly to the problematic situation of the patient, cocreating a plan of care that makes sense intellectually, practically, and emotionally. Genetic testing to identify whether a patient has a hereditary cancer syndrome represents a prime example of the importance for SDM in oncology. SDM is important for genetic testing because not only results affect current cancer treatment, cancer surveillance, and care of relatives but also these tests generate both complex results and psychological concerns. SDM conversations should take place without interruptions, disruptions, or hurry and be supported, where available, by tools that assist in conveying the relevant evidence and in supporting plan development. Examples of these tools include treatment SDM encounter aids and the Genetics Adviser. Patients are expected to play a key role in making decisions and implementing plans of care, but several evolving challenges related to the unfettered access to information and expertise of varying trustworthiness and complexity in between interactions with clinicians can both support and complicate this role. SDM should result in a plan of care that is maximally responsive to the biology and biography of each patient, maximally supportive of each patient's goals and priorities, and minimally disruptive of their lives and loves.

Child participation in triadic medical consultations: A scoping review and summary of promotive interventions.

OBJECTIVES: To promote patient centered care, children with health issues should be supported to participate in consultations with health care professionals. We aimed to summarize, in a scoping review, the evidence on child participation in triadic encounters and its promotive interventions. METHODS: Two researchers systematically searched four major databases, and included studies on child participation in medical consultations. A synthesis of quantitative and qualitative data was made. RESULTS: Of 1678 retrieved records, 39 papers were included: 22 quantitative, 14 qualitative and 3 mixed-methods studies. Child participation, measured by utterances, turns or speech time, ranged between 4% and 14%. Participation increased with age. Equidistant seating arrangements, child-directed gaze and finding the appropriate tone of voice by the physician promoted child participation. Despite all facilitative efforts of doctors and parents, such as social talk, eHealth tools or consultation education, no increase in child participation was observed over the last 50 years. CONCLUSIONS: Children continue to participate only marginally in medical consultations, despite their desire to be involved in various aspects of the clinical encounter and their right to have their voice heard. PRACTICE IMPLICATIONS: Health care professionals should provide more opportunities for children to participate in triadic medical encounters and create an inclusive environment.

Adapting Patient and Public Involvement processes in response to the Covid-19 pandemic.

BACKGROUND: The COVID-19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face-to-face consultation may no longer be the dominant method for PPI. METHODS: UK stay-at-home measures announced in March 2020 necessitated immediate revisions to the intended face-to-face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first-hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process. DISCUSSION AND CONCLUSIONS: While concerns have been expressed about the possible limiting effects of forgoing face-to-face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a 'democratising' effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study. PATIENT AND PUBLIC CONTRIBUTION: We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.

Development of a novel shared decision making aid for primary immunodeficiency diseases.

Aim: To describe development of a shared decision making (SDM) aid in treating primary immunodeficiency diseases (PID) with immunoglobulin replacement therapy (IGRT). Materials & methods: Expert engagement and qualitative formative research informed development. IGRT administration features were prioritized using object-case best-worst scaling (BWS) methodology. The aid was assessed by US adults self-reporting PID and revised following interviews/mock treatment-choice discussions with immunologists. Results: Patients participating in interviews (n = 19) and mock treatment-choice discussions (n = 5) deemed the aid useful/accessible and supported the utility of BWS, with content and BWS exercises refined following participant feedback. Conclusion: Formative research led to an improved SDM aid/BWS exercise, and illustrated how the aid may improve treatment decision making. The aid may help less-experienced patients and facilitate efficient SDM.

Shared decision making and developing a decision aid Shared decision making happens when patients and doctors work together to choose treatment options based on a patient's concerns, preferences, goals and values, as well as medical information. The aim of this project was to develop a decision aid to help patients with primary immunodeficiency diseases (PID), in which part of the body's immune system is missing or doesn't function correctly. This will allow patients to better understand and communicate with the healthcare team on their preferences about immunoglobulin treatments, which fight infection by boosting antibody (protein) levels in the blood. The authors talked to experts and reviewed existing information to decide what treatment features the aid should consider. Patients with PID then tested the aid, and changes were made based on their feedback. Doctors specializing in treating PID also provided their feedback. The final aid was judged to be helpful and easy to use by the participants. With further research, this aid could be used to help inexperienced patients better understand what immunoglobulin treatment features are most important to them, and support shared decision-making between patients and their doctors.