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PURPOSE: To elucidate existing decision aids (DAs) in supporting cancer survivors decisions to engage in cancer survivorship care services after primary treatment. Secondary objectives are to assess the DA acceptability, impact of DAs, and implementation barriers. METHODS: Databases (PubMed, Embase, PsycINFO, CINAHL) were searched to collect publications from inception through September 2021. Studies describing the development or evaluation of DAs used for survivorship care services after primary cancer treatment were included. Article selection and critical appraisal were conducted independently by two authors. RESULTS: We included 16 studies that described 13 DAs and addressed multiple survivorship care domains: prevention of recurrence/new cancers in Hodgkin lymphoma survivors and breast cancer gene mutation carriers, family building options, health insurance plans, health promotion (substance use behavior, cardiovascular disease risk reduction), advanced care planning, and post-treatment follow-up intensity. The electronic format was used to design most DAs for self-administration. The content presentation covered decisional context, options, and value clarification exercises. DAs were acceptable and associated with higher knowledge but presented inconclusive decisional outcomes. Implementation barriers included lack of design features for connectivity to care, low self-efficacy, and low perceived DA usefulness among healthcare professionals. Other survivor characteristics included age, literacy, preferred timing, and setting. CONCLUSIONS: A diverse range of DAs exists in survivorship care services engagement with favorable knowledge outcomes. Future work should clarify the impact of DAs on decisional outcomes. IMPLICATIONS FOR CANCER SURVIVORS: DA characterization and suggestions for prospective developers could enhance support for cancer survivors encountering complex decisions throughout the survivorship continuum.

In critical care, the specific, structured approach to patient care known as a time-limited trial has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patients response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trials duration. The plans 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.

Background: Medical decision-making is a complex multi-stage process. Chinese cancer patients' preference for participation in decision-making stages, family involvement and influencing factors remain unclear. Methods: A total of 1,422 cancer patients from four tertiary hospitals in China were included in the cross-sectional survey. Patient Expectation for Participation in Medical Decision-making Scale was used to measure patients' information, deliberation and decisional control preferences. The patient-family Control Preferences Scale was used to measure expected and actual levels of family involvement. Generalized estimation equation was performed to explore factors associated with patients' preferences. Results: 93.0% of patients had a high preference for information exchange, 95.8% for treatment deliberation, and 61.7% for decisional control. Equal participation was most common in family involvement in decision-making, followed by family-led and patient-led. 15.5% of patients reported a discrepancy between expected and actual family involvement. Age, education, marital status, number of adult children, occupation, family income, regular residence, health insurance and time since diagnosis were related to patient preference. Compared to patients with other cancer sites, those with breast [odds ratio (OR) 2.02, 95%CI: 1.47–2.77] and thyroid cancer [OR 2.37, 95%CI: 1.82–3.10] had higher information preference, those with breast [OR 2.98, 95%CI: 2.73–3.26] and esophagus cancer [OR 2.86, 95%CI: 1.13–7.22] had higher deliberation preference, and thyroid cancer patients [OR 1.50, 95%CI: 1.07–2.10] had higher decisional control preference. Patients who expected or experienced equal participation had higher preference at all stages of decision-making than those with family-led involvement. Patients with inconsistent expected and actual family involvement had lower preferences for the deliberation [OR 0.53, 95%CI: 0.36–0.77] and decisional control stages [OR 0.67, 95%CI: 0.56–0.79]. Conclusions: Chinese cancer patients generally have high preference for information exchange and treatment deliberation, but varied preferences for decision control, influenced by patients' sociodemographic factors, cancer types, time since diagnosis and family involvement. The findings underscore the importance of tailoring medical decision-making processes to individual patient preferences and ensuring family involvement aligns with patient expectations to enhance patient-centered care in China. [ABSTRACT FROM AUTHOR]

Supplemental Digital Content is Available in the Text. Objective: Describe how sports medicine clinicians support decision making about sport participation after concussion recovery with adolescent patients and their parents. Specific areas of inquiry related to how clinicians framed the decision, what factors they considered in how they approached the decision process, and how they navigated discordance within families. Design: Qualitative study. Setting: Tertiary care sports medicine clinics at 4 children's hospitals in the United States. Participants: Individual interviews were conducted with 17 clinicians practicing in sports medicine settings. Interventions: N/A. Main Outcome Measures: Semi-structured interviews explored clinician approaches to supporting decision making, with the question guide informed by components of the Ottawa Decision Support Framework. Results: Clinicians routinely incorporated aspects of shared decision making (SDM) into their conversations with families. This included ensuring all parties were informed about risk and aligned behind a shared value of adolescent well-being. Mediation strategies were used to manage discordance between adolescents and their parents, and between parents. These strategies aimed to facilitate a decision that was adolescent centered. When clinicians believed that there was a medical benefit to modifying the adolescent's sport participation practices, or when they did not believe the athlete was psychologically ready to return to the sport in which they were injured, they initiated conversations about alternative activities. In such situations, they used persuasive communication practices to encourage families to strongly consider this option. Conclusion: The strengths and strategies used by sports medicine clinicians in this study provide a foundation for guidance or intervention development aimed at supporting SDM after concussion with adolescents and their families. [ABSTRACT FROM AUTHOR]

Objective: To assess the frequency and determinants of medical interventions during childbirth without women's consent at the population level. Methods: The nationwide cross‐sectional Enquête Nationale Périnatale 2021 provided a representative sample of women who delivered in metropolitan France with a 2‐month postpartum follow‐up (n = 7394). Rates and 95% confidence intervals (CI) of interventions during childbirth (oxytocin administration, episiotomy or emergency cesarean section) without consent were calculated. Associations with maternal, obstetric, and organizational characteristics were assessed using robust variance Poisson regressions, after multiple imputation for missing covariates, and weighted to account for 2‐month attrition. Results: Women reporting failure to seek consent were 44.7% (CI: 42.6–47.0) for oxytocin administration, 60.2% (CI: 55.4–65.0) for episiotomy, and 36.6% (CI: 33.3–40.0) for emergency cesarean birth. Lack of consent for oxytocin was associated with maternal birth abroad (adjusted prevalence ratio [aPR] 1.20; 95% CI: 1.06–1.36), low education level, and increased cervical dilation at oxytocin initiation, whereas women with a birth plan reported less frequently lack of consent (aPR 0.79; 95% CI: 0.68–0.92). Delivery assisted by an obstetrician was more often associated with lack of consent for episiotomy (aPR 1.46; 95% CI: 1.11–1.94 for spontaneous delivery and aPR 1.39; 95% CI: 1.13–1.72 for instrumental delivery, reference: spontaneous delivery with a midwife). Cesarean for fetal distress was associated with failure to ask for consent for emergency cesarean delivery (aPR 1.58; 95% CI: 1.28–1.96). Conclusion: Women frequently reported that perinatal professionals failed to seek consent for interventions during childbirth. Reorganization of care, particularly in emergency contexts, training focusing on adequate communication and promotion of birth plans are necessary to improve women's involvement in decision making during childbirth. Synopsis: Women often report that professionals do not seek their consent for interventions during childbirth. Care reorganization and specific training are needed to improve birth experience. [ABSTRACT FROM AUTHOR]

Objective: To identify barriers and facilitators to implementing shared decision making (SDM) in pediatric otolaryngology. Study Design: A qualitative study. Setting: Semistructured interviews of pediatric otolaryngologists. Methods: The Theoretical Domains Framework (TDF) was used as a guide for data collection and analysis to consider capability, opportunity, and motivation (COM‐B) factors. The focal surgical procedures were tonsillectomy, adenoidectomy, and tympanostomy tube placement. Deductive and inductive coding of interview transcripts according to TDF/COM‐B domains were performed by 2 separate reviewers. Results: A total of 11 interviews were conducted to achieve data saturation. The 4 dominant themes were: (1) inconsistent inclusion of SDM elements in practice, (2) social influences from parents, (3) environmental context, and (4) applicability of SDM in otolaryngology. Theme 1 identified that surgeons perceived SDM as a feature of their practice. However, the discussion of parents' values was seen as less explicit and structured interview formats were not commonly employed. Theme 2 demonstrated that surgeons saw parents' preconsult "agenda" as influencing their openness to consider multiple treatment options. Theme 3 pointed to the barriers of short appointment times, challenges in the use of support staff and lack of decision aids. Theme 4 emphasized surgeons' belief in the value of SDM and that parents' involvement in decision making reduced likelihood of decisional regret. Conclusion: Pediatric otolaryngologists strongly support the value of SDM during clinical encounters, particularly to allow parent ownership of decisions regarding treatment. The major barriers were lack of clinical translation of SDM knowledge, social influences, and environmental factors. [ABSTRACT FROM AUTHOR]

Background: The Veterans Health Administration (VA) recommends lung cancer screening (LCS), including shared decision making between clinicians and veteran patients. We sought to characterize 1) veteran conceptualization of lung cancer risk and 2) veteran and clinician accounts of shared decision-making discussions about LCS to assess whether they reflect veteran concerns. Methods: We conducted qualitative interviews at 6 VA sites, with 48 clinicians and 34 veterans offered LCS in the previous 6 mo. We thematically analyzed transcripts, focusing on lung cancer risk perceptions, LCS decision making, and patient-clinician conversations. Results: Three themes emerged. 1) Veterans' lung cancer risk conceptualizations incorporated smoking, occupational hazards, and family history, whereas clinicians focused on smoking as the primary risk factor. 2) Veterans' risk perceptions were influenced by symptoms, recency of exposures, and anecdotes about smoking, cancer, and lung disease, leading some veterans to believe other risk factors outweighed smoking in increasing lung cancer risk. 3) Both veterans and clinicians described LCS conversations centered on smoking, with little mention of other risks. Limitations: Our findings may not reflect non-VA settings; for example, veterans may be more concerned about airborne hazards. Conclusions: While airborne hazards strongly influenced veterans' lung cancer risk conceptualizations, clinicians seldom addressed this risk factor during LCS shared decision making, instead focusing on smoking. Implications: In 2022, the US Congress highlighted the link between military toxic exposures and lung cancer risk, requiring VA clinicians to discuss these exposures and conferring automatic VA benefits to exposed veterans with cancer. There is a time-sensitive need for tools to support VA clinicians in discussing military hazards as a lung cancer risk factor, which may result in more engaging, less stigmatizing LCS shared decision-making conversations. Highlights: Veterans' conceptualizations of their lung cancer risk were multifactorial and sometimes ranked exposure to occupational airborne hazards and family history above smoking in increasing lung cancer risk. However, patient-clinician lung cancer screening (LCS) conversations were typically brief and focused on smoking, which could stigmatize patients and failed to engage veterans in discussing what mattered most to them in thinking about their lung cancer risk. These findings are of heightened importance in light of the 2022 Sergeant First Class Heath Robinson Honoring our Promise to Address Comprehensive Toxics (PACT) Act, which requires VA clinicians to discuss toxic military exposures and their relationship to lung cancer and other health conditions. Tools that help clinicians assess and incorporate multiple risk factors into discussions about lung cancer may better address patients' concerns and beliefs and lead to more engaging, less stigmatizing shared decision-making conversations about LCS. [ABSTRACT FROM AUTHOR]

Background: Dose reduction of tyrosine kinase inhibitors (TKIs) is an option for some chronic myeloid leukemia (CML) patients to minimize side effects while maintaining efficacy. Shared decision-making (SDM) and patient decision aids (PDAs) are advocated to make informed choices such as reducing the dose of TKIs. This paper describes the development and alpha-testing of a PDA for patients with CML receiving TKI dose reduction. Methods: The PDA was iteratively developed following IPDAS guidelines. First, a needs assessment with semi-structured interviews was conducted to understand the needs and preferences of patients and healthcare providers. Second, through feedback cycles with the project team and steering group the scope, content, and format were defined. Third, three rounds of alpha-testing were performed via individual "think aloud" sessions with patients (round 1) and healthcare providers (round 2) to qualitatively assess the comprehensibility, acceptability, and desirability of the PDA. Round 3 included quantitative evaluation via an acceptability and usability questionnaire. Qualitative data were categorized, and quantitative data were descriptively analyzed. Results: The majority valued the development of the PDA during the needs assessment (n = 30). The PDA included disease and treatment information, information about dose reduction, knowledge questions, and a value clarification section. During alpha-testing, the PDA was considered clear, balanced, and helpful for decision-making. A total of 76% of the patients (n = 17) and 100% of the healthcare providers (n = 9) recommended it with overall mean scores of 7.4 and 7.8, respectively. The above average usability score was 68.1. Conclusion: A well-accepted online PDA for chronic phase CML patients to consider TKI dose reduction was developed. [ABSTRACT FROM AUTHOR]

Introduction: The results from different Cochrane studies justify considerable professional equipoise concerning different treatment options for tinnitus. In case of professional equipoise, Shared Decision Making (SDM) is an indispensable tool for guiding patients to the intervention that best fits their needs. To improve SDM we developed a method to assess the accuracy and utility of decisions made by tinnitus patients when freely choosing between different treatment options during their patient journey. The different treatment options were audiological care and psychosocial counseling. Methods: We developed a statistical model by combining Signal Detection Theory (SDT) with the Health Belief Model (HBM). HBM states that perceived severity of an illness is strongly related to sick-role behavior. As proxies for perceived severity, we selected hearing loss and Tinnitus Handicap Inventory (THI) score at baseline. Next, we used these proxies as predictors in linear regression models based on SDT to determine the likelihood ratio of true positive decisions (choosing a treatment option and experiencing an improvement of more than 7 points in THI-score) and false positive decisions (choosing a treatment option and experiencing an improvement of less than 7 points in THI-score) for audiological care and psychosocial counseling, respectively. Data was gathered in a prospective cohort of 145 adults referred for tinnitus care to an outpatient audiology clinic in the Netherlands. The participants were asked to decide freely on uptake of audiological care (provision of hearing aids with or without a sound generator) and uptake of psychosocial counseling. Logistic regression with Bayesian inference was used to determine the cumulative distribution functions and the probability density functions of true positive decisions and false positive decisions as function of hearing loss and baseline THI-score for both treatment options, respectively. With the cumulative distribution functions, we determined the accuracy of the decisions. With the probability density functions we calculated the likelihood ratios of true positive decisions versus false positive decisions as function of hearing loss and baseline THI-score. These likelihood ratio functions allow assessment of the utility of the decisions by relating a decision criterion to perceived benefits and costs. Results: Baseline THI-score drives decisions about psychosocial counseling and hearing loss drives decisions about audiological care. Decisions about psychosocial counseling are more accurate than decisions about audiological care. Both decisions have a low accuracy (0.255 for audiological care and − 0.429 for psychosocial counseling), however. For decisions about audiological care the unbiased decision criterion is 37 dB(HL), meaning that a lenient decision criterion (likelihood ratio < 1) is adopted by patients with a hearing loss below 37 dB and a strict criterion (likelihood ratio > 1) by patients with a hearing loss exceeding 37 dB. For psychosocial counseling uptake the decision criterion is always strict, regardless of baseline THI-score. The distributions of the populations, that do and do not experience a clinically important change in THI-score, have unequal variances for psychosocial counseling, while they have almost equal variances for audiological care. Discussion: Combining SDT and HBM can help assess accuracy and utility of patient decisions and thus may provide valuable information that can help to improve SDM by combining patient related outcome measures, decision drivers, and perceived benefits and costs of a treatment. [ABSTRACT FROM AUTHOR]

We developed a Project ECHO® module to offer prenatal providers training on engaging in shared decision-making about hepatitis C virus (HCV) treatment during pregnancy. In this pilot program, the ECHO module addressing HCV during pregnancy and the potential benefits of treatment was associated with increases in self-efficacy scores among participants. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore women's preferences and experiences of degree of control in decision making when planning an induction of labor (IOL). This multi‐method study was conducted using semi‐structured individual interviews and the completion of two Control Preferences Scales by eight postnatal women from a metropolitan health service in Melbourne, Australia. Four themes were generated from the interview data: "shared decision making"; "changing expectations"; "IOL experience"; and "informed consent." Women's expectations of, and preferences for, an IOL changed during pregnancy and were influenced by their perception of risk to the fetus, indication for the procedure, and trust in clinicians. Information that was personalized to the woman to include practical aspects, risks, and alternative options was rarely provided. Overall, women reported that they did not experience the degree of control they preferred when planning an IOL. Clinician understanding of decision making preferences of women when planning an IOL can assist with care that is individualized and aligned to women's values, which is crucial to improving the quality of care provided. [ABSTRACT FROM AUTHOR]

Background: Thyroid cancer is the most common endocrine neoplasm in China. Questions regarding the extent of patient involvement in shared decision-making (SDM) processes persist; this is particularly pertinent to patients considering treatment options for low-risk papillary thyroid cancer (PTC). In this study, we aimed to explore Chinese young adults' experiences of SDM relating to the choice of treatment for low-risk PTC. Methods: The study used a qualitative descriptive design and semistructured interviews. Interviews were conducted with 24 patients (ages ranging from 18 to 38 years; 4 men and 20 women) diagnosed with low-risk (PTC) between March 2023 and May 2024. Twenty-two of 24 patients' tumor size measured 1 cm or smaller; the largest tumor size measured 1.47 cm. Reflexive thematic analysis was used to identify key themes from the transcribed interviews. Results: The analysis revealed that the SDM experiences of young patients with low-risk PTC involve four themes: challenges in information sharing; reasons for information seeking; factors influencing decision making; and self-positioning in treatment decision making. Three self-positions relating to treatment decision making were identified. These included dependent positioning, which reflects a "paternalistic" decision-making pattern; collaborative positioning, reflecting a "sharing" of decision making; and autonomous positioning, reflecting an increased sense of personal responsibility for both managing their health and engagement in decision making. Limited treatment options being offered, overuse of medical terminology, and communication gaps between clinicians and patients were the main challenges described during the information-sharing process. Information that needs persisting after physician-patient consultations resulted in active information-seeking behavior. The key variables identified in this study that potentially affected the decision-making process were future personal considerations, language used to discuss cancer, and negative emotions. Conclusions: These results highlight the necessity of adopting flexible strategies when supporting collaborative treatment decision making in the context of the doctor-patient interaction for low-risk PTC. Based on these findings, clinicians can take measures to enhance the quality of SDM by inquiring about patients' role preferences, providing details of the full range of treatment options, and encouraging patients to share their preferences and concerns relating to possible treatment options. [ABSTRACT FROM AUTHOR]

Objective: To discuss current evidence on tapering antipsychotic drugs in view of changing vistas of psychosis, suggesting a provisional framework for safely tapering antipsychotic drugs to an optimal low dose, in collaboration with patients and their relatives, to promote functional recovery while preventing relapse. Methods: Paradigm shifts during recent years regarding the nature of psychotic disorders and the role of the dopamine system are discussed, including the positive effects of dopamine blockade in acute psychosis and the limitations and drawbacks of dopamine blockade regarding negative and cognitive symptoms after remission of positive symptoms. Recent advances in tapering strategies and upcoming ways to solve the dilemma between the need to prevent relapses with antipsychotics on the one hand and the need to minimize side effects by tapering these drugs on the other are presented. Results: Modern tapering strategies appear to reduce relapse risk to acceptable levels and offer a feasible personalized option to find the least effective dose to treat and prevent positive symptoms without redundant side effects and functional incapacity. These findings need replication, and several trials that might provide more certainty are on their way. Conclusions and Implications for Practice: Preliminary evidence and clinical experience indicate that personalized dose reduction of antipsychotics is feasible and safe if carried out in close collaboration with patients and their relatives, according to a provisionally suggested framework presented here. These preliminary directions still must be confirmed, revised, and adjusted according to upcoming trial results. Impact and Implications: Many patients with psychosis want to discontinue their antipsychotic drugs due to serious side effects hampering their daily functioning in the long term. The main drawback of discontinuation is relapse. Modern tapering strategies seem to reduce relapse risk to an acceptable level. Based on available evidence and clinical experience, provisional guidelines for personalized, safe, and sound tapering of antipsychotics to an optimal low dose are presented. [ABSTRACT FROM AUTHOR]

Objective: Explore a lived experience perspective on using antipsychotic medicine and call to action for psychiatric rehabilitation practitioners to get involved in preparing people diagnosed with serious mental illness (SMI) to have a voice and choice in antipsychotic medication treatment. Methods: A first-person account of awakening on an antipsychotic medication for the first time is used to understand the lived experience and challenges of using it. Lessons learned are amplified through de-identified queries of the CommonGround database capturing concerns about antipsychotic medication of people diagnosed with SMI in public sector mental health clinics in the United States. Results: Lived experience of "me-on-medicine" included embodied and perceptual changes to self when taking antipsychotic medications. Discordance between the team's goal and personal goals for medication treatment interfered with recovery. Analysis of more than 100,000 concerns about antipsychotic medications expressed by 57,370 CommonGround users showed the most frequent concerns are that medication is perceived as unhelpful (21%), side effects (13%), impact on health (12%), and concerns about feeling unmotivated to use medication (8%). Among CommonGround users below age 30, low motivation to take antipsychotics was the third most prevalent concern. Among CommonGround users over age 30, concerns about the impact on health were the third most dominant. Conclusions and Implications for Practice: Psychiatric rehabilitation practitioners can support people diagnosed with SMI getting prepared to participate in decision making about antipsychotic medications with psychiatric care providers by identifying concerns and building skills and strategies to negotiate the new "me-on-medicine." Impact and Implications: It can be challenging to use antipsychotic medications, especially if they are experienced as interfering with our goals or changing us in ways we do not like. Psychiatric rehabilitation practitioners can support people in becoming empowered self-advocates with their psychiatric care providers in order to get the treatment that is right for them. [ABSTRACT FROM AUTHOR]

Most individuals in recovery are likely to attempt discontinuing their prescribed medication at least once. The collection of articles in this special issue uses research with quantitative and qualitative methods, reviews of the literature, conceptualization of theory, and first-person accounts from various perspectives to begin to shift the field of psychiatric rehabilitation from a narrow focus on symptom reduction and a fear-driven emphasis on medication adherence to a new perspective in which dilemmas and strong feelings about medication use are commonplace. We issue a call to action for training psychiatric rehabilitation practitioners, who often have the most direct and frequent interactions with people in recovery, to explore their clients' experiences with using medication and its impact on a range of life domains. Rehabilitation, recovery, and medication have ongoing mutual influences and require an inclusive, multidimensional framework that integrates complex ongoing interactions between personal, societal, and biological processes and assures that treatment decisions are in alignment with recovery goals. Impact and Implications: Although most individuals in recovery attempt discontinuing prescribed medications, many psychiatric rehabilitation practitioners shy away from discussing the topic. Psychiatric rehabilitation practitioners, who often have the most frequent interactions with people in recovery and frequently observe firsthand the positive and negative consequences of medication, should explore medication-related issues with their clients as part of multidimensional framework that integrates ongoing interactions between personal, societal, and biological processes. [ABSTRACT FROM AUTHOR]

Telehealth modalities have given patients options for delivery of care, and in some cases increased access to care. However, great effort needs to be made by providers and clinic staff to ensure patients are given choice in their delivery of care methods and technological support to work toward equity in care. We propose applying the BEACH model for shared decision-making to help providers support patients in choosing the best care delivery method, while also encouraging providers to seek further education on telehealth competencies. Lastly, we stress the importance of the clinical staff in ensuring patient autonomy, education, and support when choosing telehealth modalities of care. [ABSTRACT FROM AUTHOR]

Background: Decision aids (DAs), compared to no DAs, help improve the key aspects of shared decision-making, including increased knowledge, discussion frequency, and reduction in decisional conflict. However, systematic reviews have reported varied conclusions on screening uptake, and which DAs are superior to alternative forms in shared decision-making for cancer screening has not been comprehensively reviewed. Methods: An overview of systematic reviews was performed. Multiple databases were searched up to December 31, 2023, for systematic reviews of randomized controlled trials (RCTs) and non-randomized comparative studies (NRCSs) of any size that assessed a decision aid aimed to facilitate cancer-screening decision making communications. Dual screening of abstracts and full-text reports, dual data extraction and quality assessment, and qualitative synthesis were performed. Results: The 22 eligible publications included 24 reviews on cancer screening DAs for a single specific cancer (8, 8, 7, and 1 on prostate, breast, colorectal, and lung cancer, respectively) and three reviews on multiple aggregate cancers. Individual reviews were based on different primary study designs (92 RCTs and 37 NRCSs); each study was infrequently cited (median citation count 2; range 1–9). Although the DAs had variable formats and delivery methods, the reviews generally focused on use and non-use comparisons. DAs decreased the intention or actual uptake for prostate and breast cancer screening, but increased it for colorectal cancer screening. DAs were associated with increased knowledge, well-informed choice, and reduced decisional conflict, regardless of cancer type. Only four reviews on comparative effectiveness between alternative formats of DAs (based on 14 RCTs and 2 NRCSs) failed to conclude on the specific format that was superior to others. Discussion: DAs improve cancer screening shared decision-making by boosting cancer screening knowledge and informed choice and lowering decisional conflict and may facilitate preference-based, individualized screening participation. Comparative data on different cancer screening DAs are limited. Systematic review registration: PROSPERO, CRD42021235957. [ABSTRACT FROM AUTHOR]

Purpose: To explore how patients with rheumatic musculoskeletal diseases (RMDs) perceive participation in the goal setting process prior to interdisciplinary rehabilitation. Methods: We conducted semi-structured interviews with 22 participants admitted to an interdisciplinary rehabilitation stay for patients with RMDs at two Danish rehabilitation centres. Qualitative content analysis was applied. Results: The participants perceived goal setting as a joint venture between two parties: the health professionals and the participant. Three categories were formed, which described both facilitators and barriers in the process. Responsibility for goal setting described the importance of shared responsibility, or health professionals as experts, taking full responsibility for goal setting. Equipped for goal setting included perceptions of being well prepared for the process, or considerations that goal setting was difficult because of a lack of information. An equal member of the team entailed both the feeling of being recognised as one in the team, or feeling like an outsider. Conclusion: Goal setting is perceived as a challenge by some patients. Participation in goal setting depends on both the capacity and the opportunity to participate which are factors linked to patients' level of health literacy. IMPLICATIONS FOR REHABILITATION: Patients largely perceive goal setting as a joint venture, constituting a partnership aimed at sharing decisions regarding one or more rehabilitation goals, yet, for some patients, active participation in this joint venture poses challenges. When patients perceive a shared responsibility, acquire appropriate and sufficient knowledge prior to the process and feel accepted as whole persons based on a biopsychosocial approach it facilitates goal setting. Health professionals should be aware of barriers perceived by patients, such as abdicating responsibility because they view health professionals as authority figures, feeling uncertain about the purpose of setting goals and having difficulties in receiving and applying information. Patients' health literacy as well health literacy responsiveness may be of importance to the experience of barriers to shared decisions and goal setting among patients with RMDs. [ABSTRACT FROM AUTHOR]

Objective: Older adults with asthma (OAA) have elevated asthma morbidity rates. A six-session intervention based on self-regulation theory was shown to improve outcomes. However, wide-spread implementation was difficult due to the in-person design. Our objective was to determine the feasibility and acceptability of an updated intervention for OAA that is completely remote, includes a physician component, and utilizes shared decision-making (SDM). Methods: A pilot study of 12 OAA with uncontrolled asthma and their asthma providers was conducted at three health centers. The remote intervention (titled SOAR) consisted of 4 sessions (2 groups and 2 individual). Asthma providers (both specialists and primary care) were sent updates of progress along with information on how to incorporate SDM into the visit. Implementation (feasibility, acceptability, and appropriateness) and clinical (asthma control, asthma quality of life, perceived control, depression, and self-confidence) outcomes were measured. Results: SOAR was found to be feasible, acceptable, and appropriate, with values on validated implementation scales similar to those of in-person behavioral interventions. Asthma providers found the program helpful and intended to change care based on the updates. Asthma control scores improved significantly from baseline (14.2 to 16.8, p = 0.04), as did asthma quality of life (4.2 to 4.9, p = 0.03) and self-confidence to manage asthma (7.1 to 8.5, p = 0.02). There was no change in depression nor perceived control scores. Conclusion: A remote behavioral intervention appeared feasible and acceptable for OAA and their health care providers, and can improve outcomes. Larger scale implementation trials are warranted. [ABSTRACT FROM AUTHOR]

Background: The incidence of chronic disease is increasing worldwide which, in turn, increases the demand for healthcare services. To meet these demands, healthcare systems are adapting their services in order to reduce treatment costs and ensure coherence for patients with multiple diseases. One form of adaptation is shared outpatient consultations between internal medical specialties. However, little is known about how patients interact with multiple clinicians in shared consultations. Aim: This project aimed to explore how patients with diabetes and chronic kidney disease interact with multiple clinicians in a shared outpatient setting. Research Methods: We performed a qualitative ethnographic study, combining focused participant observations with informal field interviews. We included 17 participants, nine males and eight females with a mean age of 67.3 in the project. The data analysis was guided by Braun and Clarke's reflexive thematic analysis and Arthur Kleinman's theory of illness and disease. Results: We found one over‐arching theme: 'A consultation which encompassed both illness and disease' and four subthemes: (1) 'The medical focal point' pertained to the focus on physiological measurements in dialogue between patients and clinicians. (2) 'The possibility of negotiations' illustrated how decisions about dialysis and pharmacological treatment were based on negotiations. (3) 'Speaking different languages' displayed how patients used alternative illness‐based explanations whereas clinicians tended to use biomedical language. (4) 'Perceptions of everyday life' concerned what patients considered was best for them when managing their illness and everyday lives. Conclusion: Patients present information on how they balance life with physiological and psychosocial challenges. When clinicians employ a biomedical perspective, opportunities to gain information on patients' illness behaviours or cues to negotiate are missed. Patients prioritise functioning on a daily level over following treatment regimes. These findings are tenuous and require verification in similar studies in similar settings. Short Phrases: Shared Outpatient Clinic, Patient–clinician interactions. [ABSTRACT FROM AUTHOR]

Objective: To understand professional norms regarding the value of surgery. Background: Agreed-upon professional norms may improve surgical decision-making by contextualizing the nature of surgical treatment for patients. However, the extent to which these norms exist among surgeons practicing in the United States is not known. Methods: We administered a survey with 30 exemplar cases asking surgeons to use their best judgment to place each case on a scale ranging from "definitely would do this surgery" to "definitely would not do this surgery." We then asked surgeons to repeat their assessments after providing responses from the first survey. We interviewed respondents to characterize their rationale. Results: We received 580 responses, a response rate of 28.5%. For 19 of 30 cases, there was consensus (=60% agreement) about the value of surgery (range: 63% to 99%). There was little within-case variation when the mode was for surgery and more variation when the mode was against surgery or equipoise. Exposure to peer response increased the number of cases with consensus. Women were more likely to endorse a nonoperative approach when treatment had high mortality. Specialists were less likely to operate for salvage procedures. Surgeons noted their clinical practice was to withhold judgment and let patients decide despite their assessment. Conclusions: Professional judgment about the value of surgery exists along a continuum. While there is less variation in judgment for cases that are highly beneficial, consensus can be improved by exposure to the assessments of peers. [ABSTRACT FROM AUTHOR]

Objective: To assess patient perspectives on the level of shared decision making (SDM) experienced related to bariatric surgery. Background: Severe obesity is common and has serious health implications. Yet, few eligible patients pursue bariatric surgery. Shared decision making could be a useful approach for considering treatment options. Methods: Patients were surveyed at Kaiser Permanente and UPMC clinics providing bariatric surgical services. Cross‐sectional samples represent three time points: (a) Cohort 1 (C1): following referral; (b) Cohort 2 (C2): after initial bariatric practice appointment; (c) Cohort 3 (C3): following pre‐operative visit. Patients completed the electronic survey instruments: CollaboRATE, SDM‐Q‐9, and National Quality Forum (NQF) SDM process measures. Results: The sample included 167 participants, half from each site. Cohort distribution was 35% C1, 33% C2, and 32% C3. Mean age was 43.8 years (SD 13.5), BMI was 48 kg/m2 (SD 8.63), 81% were female and 73% were white. Overall, 62% reported CollaboRATE top scores, with a dose‐response (C1: 54%, C2: 60%, C3: 72%). Mean (SD) SDM‐Q‐9 score (possible range: 0–100) was: 79.6 (22.5); with C1: 66.9 (26.5), C2: 83.4 (18.0), and C3: 88.4 (15.9). The average NQF score (possible range: 0–4) was 3.11 (1.14), with C1: 2.71 (1.27), C2: 3.31 (1.09), and C3: 3.28 (0.97). Conclusions: Patients seeking bariatric care reported moderate or high levels of SDM. In general, SDM metrics were highest just before surgery. [ABSTRACT FROM AUTHOR]

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Background: Shared decision making in healthcare is a fundamental right for patients. Healthcare professionals' perception of their own abilities to enable shared decision making is crucial for implementing shared decision making within service. IcanSDM (I can shared decision making) is a brief measure to investigate healthcare professionals' perception of shared decision making approaches to their practices. It was developed in Canada with French and English versions, and recently translated into German. This study aims to adapt the IcanSDM measure for Danish-speaking healthcare professionals, and evaluate its psychometric properties. Methods: Cultural adaptation and translation based on Beaton et al.'s approach was applied. A forward translation by ten people and a backward translation by two people were performed. To assess comprehensibility, cognitive interviews were conducted with 24 healthcare professionals. Eighty healthcare professionals who were trained in shared decision making for either one hour (n = 65) or one day (n = 15) participated in the psychometric evaluation. The evaluation concerned acceptance, item characteristics, skewness, item difficulties, corrected item-total correlations, inter-item correlations, factorial structure, internal consistency, and responsiveness. Results: The forward and backward translation revealed few discrepancies, and participants understood the items well. The psychometric evaluation showed a high completion rate and acceptable item difficulties and discrimination values. Both the factor analysis and the internal consistency showed a 2-factor structure: 1) healthcare professionals' capacity to implement shared decision making; and 2) healthcare professionals' capacity to practise shared decision making. The IcanSDM_Danish obtained a Cronbach's alpha coefficient of 0.74. The evaluation of responsiveness showed improvement, but was not statistically significant. Conclusion: The IcanSDM_Danish has good cross-cultural validity and internal consistency, and a 2-factor structure. The IcanSDM_Danish is capable of providing reliable and valid measurement when evaluating constructed knowledge about shared decision making, and may be able to support the implementation of shared decision making training and evaluation of its impact. [ABSTRACT FROM AUTHOR]

Background: Informed consent is considered to be the standard method for respecting the autonomy of individual participants in research and practices and is thought to be based on several conditions: (1) providing information on the purpose of the research or a specific treatment, what it will entail, (2) the participants being mentally competent to understand the information and weigh it in the balance, and (3) the participants to be free from coercion. While there are studies of informed consent in other countries, especially Low and Middle Income Countries (LMICs), this study explored the experiences of clinicians regarding the process of obtaining informed consent to participate in a Randomised Controlled Trial (RCT) in particular and treatment in general in healthcare settings, both general and mental health, specifically focusing on the tension between individualistic concept of autonomy and collectivist values in cultures such as Pakistan. Methods: Qualitative interviews with 20 clinicians from healthcare settings in Pakistan who also served as recruiters in a suicide prevention RCT in Pakistan. The interviews were guided by semi-structured topic guide. All interviews were audio-recorded and transcribed verbatim. Results: The interviews revealed that shared decision making was more morally important than individual autonomy, the role of the family played a dominant part in the consent-taking procedure, the decision of the elder and/or family patriarch took prominence, and that clinician-researchers encountered significant challenges in consent process in Pakistan, while recruiting patients into the trial as well as during routine treatment processes in healthcare settings. Four distinct themes emerged which were (1) Family deciding for patients, (2) Benefits of involving family in consent process, (3) Gender disparity in consent process, (4) Challenges experienced by clinician-researchers during consent process in Pakistan. Conclusions: The concept of consent is generally considered important in many cultures, however, there are two strands of understanding. There seems to be consensus that participant agreement is necessary to protect the participant but with regards to autonomy there are significant cultural differences whether it is the right for autonomy of the individual (individualistic concept) or family, community, or expert authority in other cultures. In Pakistan clinician-researchers sometimes preferred one approach and sometimes the other as they appreciated the interests of the patient to be. [ABSTRACT FROM AUTHOR]

Background: Degenerative Cervical Myelopathy is a debilitating condition and current recommendations encourage shared decision-making between surgeons and patients. However, there is limited data on patients' values and preferences for surgical decision making. This study aimed to quantify and compare the relative importance of neurologic function, risk of future surgery, and complications to patients with cervical stenosis. Methods: Patients with cervical stenosis presenting for surgical evaluation, or post-operative cervical decompression patients, were recruited to participate. Demographic information including modified Japanese Orthopedic Association (mJOA) score, type of surgery, and complications were recorded and anonymized to study ID. Patients then completed an online discrete-choice experiment survey. In a series of 10 questions, respondents chose between two hypothetical health states defined in terms of five attributes, or "decision factors": (i) upper extremity neurologic function, (ii) lower extremity neurologic function, (iii) risk of cervical spine surgery, (iv) dysphagia, and (v) C5 palsy. Participants were asked to choose which 'life' they preferred, and a regression model was used to quantify the importance of each decision factor. Results: We report three key findings that can aid clinicians in shared decision-making conversations: (i) all patients regard lower extremity neurologic function as the most important decision factor, (ii) dysphagia, a complication, and upper extremity neurologic function are equally important, and (iii) patients who have undergone surgery weigh neurologic function as less important, and complications as more important than patients who have not undergone surgery. Conclusions: Patient preferences for management of degenerative cervical myelopathy are influenced by several considerations including the experience of surgery itself. Communication of benefits and harms associated with surgical and conservative care can optimize shared decision making. Further research should be conducted to evaluate for decisional regret and the impact of complications to inform treatment conversations. [ABSTRACT FROM AUTHOR]

Botulinum injection is a well-known non-surgical intervention utilized in the management of myofascial pain syndrome (MPS). However, sparse evidence exists regarding the utility of ultrasound guidance of injectate or lidocaine as a predictive marker of patient response to botulinum toxin A (BTX-A). A 39-year-old male active duty service member demonstrated typical signs and symptoms of MPS. He reported a 10-year history of neck and back spasms that were triggered by exertion but also could occur spontaneously. Based on the characteristic regional motor-sensory defects, treatment options were discussed. With shared decision-making, the patient opted to try ultrasound-guided injection of lidocaine followed by xenomin brand BotoxA. Immediately following lidocaine injection, the patient reported complete relief of symptoms. Both injections were uncomplicated, and the patient reported great reduction in symptoms during the subsequent visit 2 months later. Relief of pain following ultrasound-guided injection of lidocaine may serve as an indicator of successful patient response to BTX-A in patients with MPS. [ABSTRACT FROM AUTHOR]

Background: Children and young adults needing surgery for a primary malignant bone tumour around the knee face a difficult, life-changing decision. A previous study showed that this population wants to be involved more in the decision-making process and that more involvement leads to less decisional stress and regret. Therefore, a well-designed and standardized decision-making process based on the principles of shared decision-making needs to be designed, implemented, and evaluated. Methods: We developed a shared decision-making (SDM) model for this patient population, including an online decision aid (DA). This model has been implemented in the standard care of patients with a primary malignant bone tumour around the knee. Following implementation, we will analyse its effect on the decision-making process and the impact on patient experiences using questionnaires and interviews. Moreover, potential areas for improvement will be identified. Discussion: Given the importance of involving patients and parents in surgical decision-making, particularly in life-changing surgery such as malignant bone tumour surgery, and given the lack of SDM models applicable for this purpose, we want to share our model with the international community, including our study protocol for evaluating and optimising the model. This study will generate valuable knowledge to facilitate the optimisation of current patient care for local treatment. The sharing of our implementation and study protocol can serve as an example for other centres interested in implementing SDM methods in an era characterized by more empowered patients and parents who desire autonomy and reliable and realistic information. [ABSTRACT FROM AUTHOR]

Key points: CRS patients exhibit little decision conflict in their choice of pursuing surgery.Standard counseling alone appears to suffice once patients express an interest in surgery.Decision aids may increase patient knowledge and improve postoperative care understanding. [ABSTRACT FROM AUTHOR]

Purpose: Women with symptomatic pelvic organ prolapse are facing the choice between several treatment options and a potentially difficult decision. The aim of this study was to examine the effect of decisional conflict, patient characteristics and other decision-related factors on treatment decision in women with pelvic organ prolapse. Methods: Data from the SHADE-POP trial were used. Women with symptomatic pelvic organ prolapse who visited their gynaecologist for (new) treatment options were included. In all participants, demographical characteristics and validated questionnaires concerning decisional conflict (DCS), shared decision making (SDM-Q-9), information provision (SCIP-B), anxiety and depression (HADS) and satisfaction with care (PSQ-18) were collected 2 weeks after the visit. Analyses were performed using univariate and multivariate linear and logistic regression analyses. Results: Ninety six women with pelvic organ prolapse facing a treatment decision were included. An increase in decisional conflict as experienced by patients was related to the choice of more conservative treatment, such as pelvic floor muscle training or pessary, instead of surgery (p = 0.02). Shared decision making, better information provision and satisfaction with care were related to lower levels of decisional conflict (p = 0.001). Conclusion: Decisional conflict in women with pelvic organ prolapse favours conservative treatment instead of surgery. Gaining knowledge on the effect of decisional conflict, patient characteristics and other decision-related factors on treatment decision in pelvic organ prolapse will be a step towards a better-guided treatment decision and better patient-reported outcomes for this group of patients. NL 55737.028.15, 30-10-2016. [ABSTRACT FROM AUTHOR]

This study explored an under-researched but critical element of patient empowerment in chronic wound care, namely degrees of freedom. This refers to the personalisation of everyday wound care based on patients' individual needs. To identify degrees of freedom in clinical practice, semi-structured interviews were conducted with 23 patients and 16 healthcare professionals and analysed using qualitative content analysis. The analysis yielded nine degrees of freedom with 42 concrete behaviours of primary control (shaping the actual treatment situation) and six degrees of freedom with 22 concrete behaviours of secondary control (shaping the patient's inner experience). These could be assigned to four main degrees of freedom, namely patients' self-action, cooperation between patients and health professionals, adaptation of treatment to patients' needs, and the use of emotional coping strategies. Furthermore, two types of patients could be distinguished: those who are active and take responsibility for their wounds, and those who remain passive and tend to endure. The implementation of degrees of freedom offers several positive effects, such as patients experiencing outcome efficacy and becoming experts on their wounds. However, there are several implementation issues, such as patient reluctance and time constraints, that need to be overcome first. [ABSTRACT FROM AUTHOR]

In the health-care system within hospitals, Taiwanese patients usually play the role of passively cooperating with health-care professionals. Therefore, patients rarely make their own treatment decisions. This study evaluated the level of patient education and patient satisfaction in relation to empowerment level in Taiwan. A cross-sectional survey by a self-administered structured questionnaire was carried out with 618 inpatients from the four hospitals. Statistical analyses were then conducted. Analysis of covariance and post-hoc comparison was used to compare differences between the level of patient empowerment, age, and education as covariates in the model. This study found that 21.2% and 35.6% of participants were highly empowered and well empowered, respectively. Years of education is a significant covariate in the counselling domain of patient education. Even after controlling for age and education level, the counselling, answer question and justifying action, providing information scores remain significant for all levels after adjusting for the effects of degree of patient empowerment. Patients with higher empowerment also having more-sufficient patient education, indicating a tendency toward higher patient satisfaction. Patient education and counselling practices in Taiwan's clinical practice could be improved to enhance patient empowerment and ensure health-care systems are person-centred. To move more toward highly patient empowerment, we suggest that health-care professionals advocate a patient-empowerment approach and to provide more counselling related to patients' illnesses and possible treatments. [ABSTRACT FROM AUTHOR]

Introduction: Making a treatment decision for female stress urinary incontinence (SUI) can be challenging for patients and healthcare providers. Dutch guidelines advise to counsel both pelvic floor muscle therapy and midurethral sling surgery as primary treatment options in uncomplicated moderate to severe cases. The use of a patient decision aid (PDA) can support decision‐making, reduce decisional conflict and decisional regret, and increase knowledge. The aim of this study was to develop and evaluate an online PDA for females (SUI). Methods: This mixed‐methods study was performed in consecutive stages by a multidisciplinary working group. PDA design was based on the International Patient Decision Aids Standards (IPDAS) and on outcomes of needs assessments amongst patients and healthcare providers. Content was based on Dutch guidelines, targeted literature searches and patient information from the Dutch scientific society for gynecology. The concept version was evaluated by patients, patients' advocates, and healthcare providers. Results: Using the nominal group technique, the working group established the design and format of the PDA. Fifty‐six out of 58 applicable items of the IPDAS were met. The PDA contains information on the condition, advice on lifestyle adaptations, and describes surgical and nonsurgical treatment options. The option grid contains comparisons of the primary treatment options. Furthermore, value clarification exercises and narratives were included. Acceptability and usability evaluation of the concept version was performed by 15 healthcare providers, three patients, and two patients' advocates. Comments were processed in the working group, resulting in the final version of the PDA, which was supported by all assessors. Conclusion: Our multidisciplinary working group developed an online PDA for women with moderate to severe SUI including conservative and surgical treatment options, based on IPDAS criteria, guidelines, scientific evidence, and needs assessments from patients and healthcare providers. This PDA is supported by patients, healthcare providers, scientific societies, and the Dutch patients' association. The next step is to evaluate and implement this PDA in daily practice. Trial Registration: ID 2014‐308. [ABSTRACT FROM AUTHOR]

Onychomycosis, an infectious disease affecting the nails, can spread within oneself and to others, potentially leading to functional disabilities, therefore achieving a complete cure is necessary. Additionally, shared decision making (SDM) has been gaining attention in the treatment of various diseases in recent years. This study aimed to uncover the realities of patient–physician communication and perception in onychomycosis treatment, particularly in setting treatment goals and the SDM process for selecting therapeutic agents. We conducted a web‐based survey of both patients and dermatologists to identify issues in the decision‐making process for onychomycosis treatment. The survey revealed several communication challenges between patients and dermatologists regarding onychomycosis treatment. First, a notable percentage of dermatologists do not prioritize a complete cure for onychomycosis in their treatment goals. Second, the dermatologists' treatment explanations tended to emphasize risks, information necessary for appropriate decision‐making was not adequately conveyed to patients, and SDM practice was insufficient (the mean scores of SDM‐Q‐9 and SDM‐Q‐Doc were 49.0 and 70.9, respectively). Third, dermatologists overestimated the reluctance of older patients to take oral medications. Dermatologists should recognize their patients' expectations for a complete cure for onychomycosis and choose a therapeutic agent that meets patients' needs. Furthermore, dermatologists should explain the benefits and risks of treatment options in a balanced manner, strive for improved patient–physician communication, and aim for a complete cure by administering suitable treatment. [ABSTRACT FROM AUTHOR]

Abstract Background Medical decision-making is a complex multi-stage process. Chinese cancer patients’ preference for participation in decision-making stages, family involvement and influencing factors remain unclear. Methods A total of 1,422 cancer patients from four tertiary hospitals in China were included in the cross-sectional survey. Patient Expectation for Participation in Medical Decision-making Scale was used to measure patients’ information, deliberation and decisional control preferences. The patient-family Control Preferences Scale was used to measure expected and actual levels of family involvement. Generalized estimation equation was performed to explore factors associated with patients’ preferences. Results 93.0% of patients had a high preference for information exchange, 95.8% for treatment deliberation, and 61.7% for decisional control. Equal participation was most common in family involvement in decision-making, followed by family-led and patient-led. 15.5% of patients reported a discrepancy between expected and actual family involvement. Age, education, marital status, number of adult children, occupation, family income, regular residence, health insurance and time since diagnosis were related to patient preference. Compared to patients with other cancer sites, those with breast [odds ratio (OR) 2.02, 95%CI: 1.47–2.77] and thyroid cancer [OR 2.37, 95%CI: 1.82–3.10] had higher information preference, those with breast [OR 2.98, 95%CI: 2.73–3.26] and esophagus cancer [OR 2.86, 95%CI: 1.13–7.22] had higher deliberation preference, and thyroid cancer patients [OR 1.50, 95%CI: 1.07–2.10] had higher decisional control preference. Patients who expected or experienced equal participation had higher preference at all stages of decision-making than those with family-led involvement. Patients with inconsistent expected and actual family involvement had lower preferences for the deliberation [OR 0.53, 95%CI: 0.36–0.77] and decisional control stages [OR 0.67, 95%CI: 0.56–0.79]. Conclusions Chinese cancer patients generally have high preference for information exchange and treatment deliberation, but varied preferences for decision control, influenced by patients’ sociodemographic factors, cancer types, time since diagnosis and family involvement. The findings underscore the importance of tailoring medical decision-making processes to individual patient preferences and ensuring family involvement aligns with patient expectations to enhance patient-centered care in China.

Abstract Background Dose reduction of tyrosine kinase inhibitors (TKIs) is an option for some chronic myeloid leukemia (CML) patients to minimize side effects while maintaining efficacy. Shared decision-making (SDM) and patient decision aids (PDAs) are advocated to make informed choices such as reducing the dose of TKIs. This paper describes the development and alpha-testing of a PDA for patients with CML receiving TKI dose reduction. Methods The PDA was iteratively developed following IPDAS guidelines. First, a needs assessment with semi-structured interviews was conducted to understand the needs and preferences of patients and healthcare providers. Second, through feedback cycles with the project team and steering group the scope, content, and format were defined. Third, three rounds of alpha-testing were performed via individual “think aloud” sessions with patients (round 1) and healthcare providers (round 2) to qualitatively assess the comprehensibility, acceptability, and desirability of the PDA. Round 3 included quantitative evaluation via an acceptability and usability questionnaire. Qualitative data were categorized, and quantitative data were descriptively analyzed. Results The majority valued the development of the PDA during the needs assessment (n = 30). The PDA included disease and treatment information, information about dose reduction, knowledge questions, and a value clarification section. During alpha-testing, the PDA was considered clear, balanced, and helpful for decision-making. A total of 76% of the patients (n = 17) and 100% of the healthcare providers (n = 9) recommended it with overall mean scores of 7.4 and 7.8, respectively. The above average usability score was 68.1. Conclusion A well-accepted online PDA for chronic phase CML patients to consider TKI dose reduction was developed.

Abstract Background Degenerative Cervical Myelopathy is a debilitating condition and current recommendations encourage shared decision-making between surgeons and patients. However, there is limited data on patients’ values and preferences for surgical decision making. This study aimed to quantify and compare the relative importance of neurologic function, risk of future surgery, and complications to patients with cervical stenosis. Methods Patients with cervical stenosis presenting for surgical evaluation, or post-operative cervical decompression patients, were recruited to participate. Demographic information including modified Japanese Orthopedic Association (mJOA) score, type of surgery, and complications were recorded and anonymized to study ID. Patients then completed an online discrete-choice experiment survey. In a series of 10 questions, respondents chose between two hypothetical health states defined in terms of five attributes, or “decision factors”: (i) upper extremity neurologic function, (ii) lower extremity neurologic function, (iii) risk of cervical spine surgery, (iv) dysphagia, and (v) C5 palsy. Participants were asked to choose which ‘life’ they preferred, and a regression model was used to quantify the importance of each decision factor. Results We report three key findings that can aid clinicians in shared decision-making conversations: (i) all patients regard lower extremity neurologic function as the most important decision factor, (ii) dysphagia, a complication, and upper extremity neurologic function are equally important, and (iii) patients who have undergone surgery weigh neurologic function as less important, and complications as more important than patients who have not undergone surgery. Conclusions Patient preferences for management of degenerative cervical myelopathy are influenced by several considerations including the experience of surgery itself. Communication of benefits and harms associated with surgical and conservative care can optimize shared decision making. Further research should be conducted to evaluate for decisional regret and the impact of complications to inform treatment conversations.

Abstract Background Shared decision making in healthcare is a fundamental right for patients. Healthcare professionals' perception of their own abilities to enable shared decision making is crucial for implementing shared decision making within service. IcanSDM (I can shared decision making) is a brief measure to investigate healthcare professionals' perception of shared decision making approaches to their practices. It was developed in Canada with French and English versions, and recently translated into German. This study aims to adapt the IcanSDM measure for Danish-speaking healthcare professionals, and evaluate its psychometric properties. Methods Cultural adaptation and translation based on Beaton et al.'s approach was applied. A forward translation by ten people and a backward translation by two people were performed. To assess comprehensibility, cognitive interviews were conducted with 24 healthcare professionals. Eighty healthcare professionals who were trained in shared decision making for either one hour (n = 65) or one day (n = 15) participated in the psychometric evaluation. The evaluation concerned acceptance, item characteristics, skewness, item difficulties, corrected item-total correlations, inter-item correlations, factorial structure, internal consistency, and responsiveness. Results The forward and backward translation revealed few discrepancies, and participants understood the items well. The psychometric evaluation showed a high completion rate and acceptable item difficulties and discrimination values. Both the factor analysis and the internal consistency showed a 2-factor structure: 1) healthcare professionals' capacity to implement shared decision making; and 2) healthcare professionals' capacity to practise shared decision making. The IcanSDM_Danish obtained a Cronbach’s alpha coefficient of 0.74. The evaluation of responsiveness showed improvement, but was not statistically significant. Conclusion The IcanSDM_Danish has good cross-cultural validity and internal consistency, and a 2-factor structure. The IcanSDM_Danish is capable of providing reliable and valid measurement when evaluating constructed knowledge about shared decision making, and may be able to support the implementation of shared decision making training and evaluation of its impact.

Abstract Background Informed consent is considered to be the standard method for respecting the autonomy of individual participants in research and practices and is thought to be based on several conditions: (1) providing information on the purpose of the research or a specific treatment, what it will entail, (2) the participants being mentally competent to understand the information and weigh it in the balance, and (3) the participants to be free from coercion. While there are studies of informed consent in other countries, especially Low and Middle Income Countries (LMICs), this study explored the experiences of clinicians regarding the process of obtaining informed consent to participate in a Randomised Controlled Trial (RCT) in particular and treatment in general in healthcare settings, both general and mental health, specifically focusing on the tension between individualistic concept of autonomy and collectivist values in cultures such as Pakistan. Methods Qualitative interviews with 20 clinicians from healthcare settings in Pakistan who also served as recruiters in a suicide prevention RCT in Pakistan. The interviews were guided by semi-structured topic guide. All interviews were audio-recorded and transcribed verbatim. Results The interviews revealed that shared decision making was more morally important than individual autonomy, the role of the family played a dominant part in the consent-taking procedure, the decision of the elder and/or family patriarch took prominence, and that clinician-researchers encountered significant challenges in consent process in Pakistan, while recruiting patients into the trial as well as during routine treatment processes in healthcare settings. Four distinct themes emerged which were (1) Family deciding for patients, (2) Benefits of involving family in consent process, (3) Gender disparity in consent process, (4) Challenges experienced by clinician-researchers during consent process in Pakistan. Conclusions The concept of consent is generally considered important in many cultures, however, there are two strands of understanding. There seems to be consensus that participant agreement is necessary to protect the participant but with regards to autonomy there are significant cultural differences whether it is the right for autonomy of the individual (individualistic concept) or family, community, or expert authority in other cultures. In Pakistan clinician-researchers sometimes preferred one approach and sometimes the other as they appreciated the interests of the patient to be.

BackgroundExpanding access to shorter regimens for tuberculosis (TB) prevention, such as once-weekly isoniazid and rifapentine taken for 3 months (3HP), is critical for reducing global TB burden among people living with HIV (PLHIV). Our coprimary hypotheses were that high levels of acceptance and completion of 3HP could be achieved with delivery strategies optimized to overcome well-contextualized barriers and that 3HP acceptance and completion would be highest when PLHIV were provided an informed choice between delivery strategies.Methods and findingsIn a pragmatic, single-center, 3-arm, parallel-group randomized trial, PLHIV receiving care at a large urban HIV clinic in Kampala, Uganda, were randomly assigned (1:1:1) to receive 3HP by facilitated directly observed therapy (DOT), facilitated self-administered therapy (SAT), or informed choice between facilitated DOT and facilitated SAT using a shared decision-making aid. We assessed the primary outcome of acceptance and completion (≥11 of 12 doses of 3HP) within 16 weeks of treatment initiation using proportions with exact binomial confidence intervals (CIs). We compared proportions between arms using Fisher's exact test (two-sided α = 0.025). Trial investigators were blinded to primary and secondary outcomes by study arm. Between July 13, 2020, and July 8, 2022, 1,656 PLHIV underwent randomization, with equal numbers allocated to each study arm. One participant was erroneously enrolled a second time and was excluded in the primary intention-to-treat analysis. Among the remaining 1,655 participants, the proportion who accepted and completed 3HP exceeded the prespecified 80% target in the DOT (0.94; 97.5% CI [0.91, 0.96] p < 0.001), SAT (0.92; 97.5% CI [0.89, 0.94] p < 0.001), and Choice (0.93; 97.5% CI [0.91, 0.96] p < 0.001) arms. There was no difference in acceptance and completion between any 2 arms overall or in prespecified subgroup analyses based on sex, age, time on antiretroviral therapy, and history of prior treatment for TB or TB infection. Only 14 (0.8%) participants experienced an adverse event prompting discontinuation of 3HP. The main limitation of the study is that it was conducted in a single center. Multicenter studies are now needed to confirm the feasibility and generalizability of the facilitated 3HP delivery strategies in other settings.ConclusionsShort-course TB preventive treatment was widely accepted by PLHIV in Uganda, and very high levels of treatment completion were achieved in a programmatic setting with delivery strategies tailored to address known barriers.Trial registrationClinicalTrials.gov NCT03934931.

Shared decision making is a concept essential to establishing meaningful goals of care that reflect one's preferences, values, beliefs, culture, and quality of life. This rapid review considered shared decision making from the perspective of seriously ill or medically complex children receiving inpatient palliative or end-of-life care, where shared decision making is made on behalf of and in the child's best interest. A total of 118 articles were screened, resulting in the selection of 12 articles using a systematic process. Emergent themes noted and discussed include the roles of family and clinicians, explorative communication, transparency, cultural implications, and ethical challenges. [ABSTRACT FROM AUTHOR]