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Background: Ring-based studies are a novel research design commonly used for research involving infectious diseases: contacts of newly infected individuals form a ring that is targeted for interventions (e.g., vaccine, post-exposure prophylaxis). Given the novelty of the research design, it is critical to obtain feedback from participants on their experiences with ring-based studies to help with the development of future trials., Methods: In 2021, we conducted 26 semi-structured interviews with adult participants of a COVID-19 ring-based post-exposure prophylaxis trial based in Canada. We applied a purposive sampling approach and electronically recruited participants who tested positive for COVID-19 (Index Cases) and either agreed or declined for the study team to contact their potentially exposed contacts. We also included individuals who participated in the trial after being potentially exposed to an Index Case (known as Ring Members), and those who declined to participate after potential exposure. The methodological design of semi-structured interviews allowed participants to share their opinions and experiences in the trial (e.g., elements they enjoyed and disliked regarding their participation in the study)., Results: The majority of participants in our study were women (62%) and the average age was 37.3 years (SD = 13.2). Overall, participants reported being highly satisfied with partaking in the ring-based trial. Notably, no substantial complaints were voiced about the trial's design involving contact after exposure. The most common reason of satisfaction was the knowledge of potentially helping others by advancing knowledge for a greater cause (e.g., development of potential treatment to prevent SARS-CoV-2 infection). Other reasons were curiosity about participating in a trial, and an activity to fill free time during the pandemic. A central element of dislike was confusion about instructions with the trial (e.g., independent at home SARS-CoV-2 testing). Additionally, maintaining confidentiality was a crucial concern for participants, who sought assurance that their data would not be shared beyond the scope of the study., Conclusions: Our results have the potential to inform future research, including clinical trials such as ring-based studies, by incorporating insights from participants' experiences into the development of study protocols. Despite some protocol-related challenges, participants expressed high satisfaction, driven by the desire to advance science and potentially aid others., (© 2024. The Author(s).)

Background: A number of patients have complex care needs that arise from interactions among multiple factors, such as multimorbidity, mental health issues, and social vulnerability. These factors influence decisions about healthcare and health services. Shared decision-making (SDM), a collaborative process between patients and professionals, is known to improve the quality of the decision-making process. However, follow-up challenges of patients with complex care needs (PCCNs) can lead to SDM specificities., Objective: To identify specificities of SDM with PCCNs., Methods: We conducted a scoping review using the Joanna Briggs Institute (JBI) methodology. We conducted a systematic search across MEDLINE, CINAHL, PsycINFO, and Academic Search Complete databases. Empirical studies about SDM with PCCNs published between 1997 and 2023 were eligible for inclusion. We conducted a mixed thematic analysis using deductive (Ottawa Decision Support Framework and Interprofessional Shared Decision-Making Model) and inductive approaches. Following Arksey & O'Malley's and Levac et al.'s methodological recommendations, we consulted experts (researchers, healthcare professionals, and patient partners) to enhance the findings., Results: Twelve studies were included in the review. Overall, our results demonstrated the importance of recognizing some specificities of SDM with PCCNs, such as the simultaneous presence of multiple decisions and the multidisciplinary and intersectoral nature of the healthcare and health services they receive., Conclusion: This scoping review highlights some specificities that must be considered in SDM with PCCNs to maintain its already-known benefits and ensure positive health and decision-making outcomes., (© 2024. The Author(s).)

Background: Risk score calculators are a widely developed tool to support clinicians in identifying and managing risk for certain diseases. However, little is known about physicians' applied experiences with risk score calculators and the role of risk score estimates in clinical decision making and patient communication., Methods: Physicians providing care in outpatient community-based clinical settings ( N  = 20) were recruited to participate in semi-structured individual interviews to assess their use of risk score calculators in practice. Two study team members conducted an inductive thematic analysis using a consensus-based coding approach., Results: Participants referenced at least 20 risk score calculators, the most common being the Atherosclerotic Cardiovascular Disease Risk Calculator. Ecological factors related to the clinical system (e.g., time), patient (e.g., receptivity), and physician (e.g., experience) influenced conditions and patterns of risk score calculator use. For example, compared with attending physicians, residents tended to use a greater variety of risk score calculators and with higher frequency. Risk score estimates were generally used in clinical decision making to improve or validate clinical judgment and in patient communication to serve as a motivational tool., Conclusions: The degree to which risk score estimates influenced physician decision making and whether and how these scores were communicated to patients varied, reflecting a nuanced role of risk score calculator use in clinical practice. The theory of planned behavior can help explain how attitudes, beliefs, and norms shape the use of risk score estimates in clinical decision making and patient communication. Additional research is needed to evaluate best practices in the use of risk score calculators and risk score estimates., Highlights: The risk score calculators and estimates that participants referenced in this study represented a range of conditions (e.g., heart disease, anxiety), levels of model complexity (e.g., probability calculations, scales of severity), and output formats (e.g., point estimates, risk intervals).Risk score calculators that are easily accessed, have simple inputs, and are trusted by physicians appear more likely to be used.Risk score estimates were generally used in clinical decision making to improve or validate clinical judgment and in patient communication to serve as a motivational tool.Risk score estimates helped participants manage the uncertainty and complexity of various clinical situations, yet consideration of the limitations of these estimates was relatively minimal.Developers of risk score calculators should consider the patient- (e.g., response to risk score estimates) and physician- (e.g., training status) related characteristics that influence risk score calculator use in addition to that of the clinical system., Competing Interests: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: EMM is or has been a consultant to Amgen, Cytokinetics, PepGen, Pfizer, and Tenaya Therapeutics and is a founder of Ikaika Therapeutics. These activities are unrelated to the content of this article. All other authors declare no conflict of interest.

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., (© 2024. The Author(s).)

Research Question: From the perspectives of healthcare professionals (HCPs) and people with chronic obstructive pulmonary disease (COPD) known to tertiary care, what influences successful referrals to a pulmonary rehabilitation program (PRP)?, Methods: This cross-sectional qualitative study was informed by a critical realist perspective. We purposively sampled people with COPD and HCPs who deliver COPD care and used semi-structured interviews and focus groups to explore determinants of a successful referral to a PRP. Interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis., Results: Data were available on 38 HCPs and 15 people with COPD. We generated three core themes pertaining to successful referrals. The first theme was that HCPs should be mindful of how professional responsibilities (such as their personal value and interest in a PRP, their degree of understanding of PRPs, and the organisational culture the PRPs are embedded within) shape decision-making during a therapeutic interaction. The second theme, there's more to me than my COPD, characterised psychological perceptions that shape a person's readiness to engage in a PRP. The third theme, communication is a two-way street that requires careful navigation, characterised the interpersonal dynamic between HCP and patient, and how dedicated conversations about PRPs can encourage successful referrals., Conclusion: Therapeutic interactions that include dedicated conversations about PRPs can foster successful referrals among people with COPD. During these interactions, HCPs should take the time to understand and carefully unpack psychological perceptions whilst imparting value, interest and enthusiasm for PRPs. Doing so can shape patient engagement toward referral success., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Aim: Gain insight into the process of shared decision-making (SDM) in daily hospital care for patients with dementia from nurses' perspectives., Design: Explorative qualitative design., Methods: In-depth digital interviews were conducted with 14 registered nurses between June and November 2022. A phenomenological approach was applied using Colaizzi's seven-step method., Results: Five themes were identified in the data: (1) SDM in daily care: How shared decision-making is applied; (2) Nurses' perceptions and competence: How nurses perceive and manage SDM; (3) Nurses' roles and advocacy: The evolving roles of nurses and their advocacy efforts, (4) Recognition of dementia and its impact: How nurses recognize and manage dementia; and (5) Interventions to support SDM: Strategies and interventions to facilitate SDM., Conclusion: This study highlights the complexity of SDM in patients with dementia. It demonstrates the importance of the involvement of relatives, omission of patient goals in discussions and perceived deficiencies of nurses. The early identification of dementia, evaluation of nuanced capacity and targeted communication are essential. Further research and enhanced training are required to improve care in this context., Impact: Potential areas for further research on SDM in nurses involving patients with dementia include investigating the effects of integrating goal discussions into SDM training for nurses, overcoming barriers to SDM competence, and challenging the idea that SDM is solely the responsibility of physicians. These findings highlight the need for policies that encourage interdisciplinary collaboration, address misconceptions and recommend training programmes that focus on applying SDM to the daily care of patients with dementia, thereby improving the overall quality of patient care., Reporting Method: The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was used for reporting., Patient or Public Contribution: No patient or public contribution., (© 2024 The Authors. Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Objectives: To 1) examine the willingness of residents to undertake shared decision-making and 2) explore whether the willingness to engage in shared decision-making is influenced by the perceived stakes of a clinical situation., Methods: Sequential mixed methods design. Phase One: Family Medicine residents completed IncorpoRATE, a seven-item measure of clinician willingness to engage in shared decision making. Mean IncorpoRATE scores were calculated. Phase Two: We interviewed residents from phase one to explore their perceptions of high versus low stakes situations. Transcripts were analyzed using qualitative content analysis., Results: IncorpoRATE scores indicated a greater willingness to engage in shared decision-making when the stakes of the decision were perceived as low (7.59 [2.0]) compared to high (4.38 [2.5]). Interviews revealed that residents held variable views of the stakes of similar clinical decisions., Conclusion: Residents are more willing to engage in shared decision-making when the stakes of the situation are perceived to be low. However, the interpretation of the stakes of clinical situations varies., Practical Implications: Further research is needed to explore how shared decision making is understood by residents in Family Medicine and when they view the process of shared decision-making to be most appropriate., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Patient empowerment is receiving increasing attention in cancer care, and its relevance has led to a growing body of literature. Empowerment-related evidence, however, has not been comprehensively reviewed., Objective: The purpose of this scoping review was to summarize the available evidence on patient empowerment in cancer care. Specifically, we examined how patient empowerment has been defined and measured and what we have learned., Methods: We searched 6 databases (MEDLINE, PubMed, CINAHL, EMBASE, Cochrane Library, and PsycINFO), adapting key search terms (eg, "neoplasm," "empowerment") to each. Extracted data included author, publication year, country of data collection, main study purpose, study design, sampling method, setting, cancer trajectory, definition of empowerment and its source, measurement of empowerment, correlates, intervention (if applicable), and major results., Results: Of the 2987 articles we initially identified, we included 64 studies (18 quantitative, 9 qualitative, 9 psychometric validation, 8 mixed methods, 6 reviews, and 14 others). Across designs, randomized controlled trials were the most frequent. A comprehensive summary by study designs was provided., Conclusions: The review highlights the importance of defining the empowerment concept, which is generally vague. There is a paucity of research on examining the relationship between empowerment and its related concepts. More nonexperimental studies (eg, cross-sectional, longitudinal, case-control studies) are required., Implications for Practice: Nurses are in an optimal position to engage in the process of empowerment, leading to its benefits. To achieve the best outcomes, nurses need to clarify the definition, select an appropriate measurement, and be trained in empowerment strategies., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Health-related decision-making is a complex process given the variability of treatment options, conflicting treatment plans, time constraints and variable outcomes. This complexity may result in patients experiencing decisional regret following decision-making. Nonetheless, literature on decisional regret in the healthcare context indicates inconsistent characterization and operationalization of this concept., Aim(s): To conceptually define the phenomenon of decisional regret and synthesize the state of science on patients' experiences with decisional regret., Design: A concept analysis., Methods: Rodgers' evolutionary method guided the conceptualization of this review. An interdisciplinary literature search was conducted from 2003 until 2023 using five databases, PubMed, CINAHL, Embase, PsycINFO and Web of Science. The search informed how the concept manifested across health-related literature. We used PRISMA-ScR checklist to guide the reporting of this review., Results: Based on the analysis of 25 included articles, a conceptual definition of decisional regret was proposed. Three defining attributes underscored the negative cognitive-emotional nature of this concept, post-decisional experience relating to the decision-making process, treatment option and/or treatment outcome and an immediate or delayed occurrence. Antecedents preceding decisional regret comprised initial psychological or emotional status, sociodemographic determinants, impaired decision-making process, role regret, conflicting treatment plans and adverse treatment outcomes. Consequences of this concept included positive and negative outcomes influencing quality of life, health expectations, patient-provider relationship and healthcare experience appraisal. A conceptual model was developed to summarize the concept's characteristics., Conclusion: The current knowledge on decisional regret is expected to evolve with further exploration of this concept, particularly for the temporal dimension of regret experience. This review identified research, clinical and policy gaps informing our nursing recommendations for the concept's evolution., No Patient or Public Contribution: This concept analysis examines existing literature and does not require patient-related data collection. The methodological approach does not necessitate collaboration with the public., (© 2024 John Wiley & Sons Ltd.)

Introduction: Hand hygiene compliance is one of the key performance indicators for infection prevention and control programmes, patient safety and quality of health services. WHO guidelines and the patient centred approach stress the need to increase patient involvement in hand hygiene promotion in healthcare settings. Patients' and health care workers' perspectives are critical for developing interventions to foster patient involvement in promoting hand hygiene. This study explored perceptions of health care workers and patients towards patients' involvement in hand hygiene promotion., Methods: An exploratory qualitative study was conducted in four health facilities: three public, and one private non-profit in central Uganda. We conducted key informant interviews (KIIs) with health care workers and focus group discussions (FGDs) with patients. Respondents were asked their views about a patient reminding a health care worker to practice hand hygiene and how best this can be done. Interviews were audio-recorded, and transcribed. Thematic content analysis was used., Results: We led seven FGDs grouped by sex (6 participants each), with patients from different units of the study health care facilities and 23 KIIs with the in-charges of the health care facilities, wards, and infection control committee members. The majority of the KIIs were in the age category 30 to 45 years (10/23), females (14/23), and 7/23 were nurses by cadre. For the FGD participants, the majority were aged 30 to 45 years (23/42), 24/42 were females, 21/42 had attained secondary education as their highest level of education and 21/42 were Catholics. The health care workers' and patients' views towards patients' participation in promoting hand hygiene among health care workers are presented according to the four themes that emerged: i) Patients reminding health care workers to practice hand hygiene was offensive; ii) Patients fear of negative response from health care workers, including being denied or receiving poor quality services; iii) Role of management in influencing hand hygiene (patient reminding a health care workers to wash hands could be acceptable in private health facilities compared to the public ones); iv) Suggestions on how patients' reminders to health care workers can be done, included empowering patients to do the reminders in a friendly and polite approach to the HCW., Conclusion: Patients are reluctant to remind health workers to practice hand hygiene, because they feel it is confrontational and embarrassing, while health care workers find it offensive. Patient involvement seems to threaten patient-provider relationships. However patient empowerment was reported to be critical in promoting it and this is in-line with the hand hygiene guidelines., Competing Interests: The authors have declared that no competing interests exist., (Copyright: This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.)

Guidelines and consensus in cardiovascular care in recent years have called for patients to be more involved in their care, which can be achieved by becoming more empowered. Yet, there is little clarity on how healthcare professionals can help the patients achieve this goal. The present paper defines patient empowerment, its benefits, and the different strategies that can be used in healthcare to empower them. Moreover, potential barriers in the empowering process are also discussed., Competing Interests: Conflict of interest: none declared., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Society of Cardiology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

South Asians living in the United States are frequently underrepresented in health research. Their lack of participation limits the generalizability of research to them and keeps them from receiving the high-quality care and innovation that some studies may offer. "Research Ready" is a five-panel, community co-created graphic-style story that encourages discussion around the purpose of research, safety/protection while participating, and why diverse participation-including South Asians-improves study results and leads to more effective interventions/treatments. This study leveraged trained young adult "cultural insiders" to invite attendees of a Midwestern South Asian Cultural Festival to read the story aloud together as the characters in English or Hindi and used a decision guide to invite discussion. Post-discussion surveys ( N = 104) were analyzed using descriptive statistics. Participants spanned from 10 to 79 years, with 42% < 18 years and more females (61%). Only 18.3% indicated having prior research participation. Adults 40+ years (60%) requested the story/discussion in Hindi, compared to 2.3% of adolescents and 6.7% of younger adults. After the discussion, participants indicated their willingness to consider participation, with most being open to participating in surveys/interviews (95.2%); only 52.9% would consider studies requiring the taking of medicines. Adolescents, females, and adults with higher education were more willing to participate in medication studies. Nearly all (97.1%) said they would feel safe participating in research, and 88.5% shared that the discussion would help them better decide about future participation. In conclusion, "Research Ready" discussions shared by cultural insiders effectively encourage South Asians to consider future research participation.

Background: Limited data exist on the motivations and expectations of participants when enrolling in dermatology clinical trials, including melanoma early detection trials. Understanding participant motivators for research engagement has been identified as a prioritized area for trial methodology research., Objective: The study aimed to determine motivators of participation and expectations from trial involvement among patients enrolled in the MEL-SELF randomized clinical trial of patient-led surveillance for new or recurrent melanoma., Methods: The MEL-SELF trial is recruiting patients previously treated for localized melanoma, who own a smartphone, have a partner to assist with skin self-examination (SSE), and attend routinely scheduled follow-up at specialist and primary care skin clinics in Australia. We evaluated responses from the first 100 randomized participants to 2 open-ended questions about their motivations and expectations for participating in the trial, administered through the internet-based baseline questionnaire. A total of 3 coders independently coded the free-text responses and resolved discrepancies through consensus. Qualitative content analysis by an iterative process was used to group responses into themes. Responses from potential participants who were not randomized and the 404 participants randomized subsequently into the trial, were also checked for new themes. Coding and analysis were conducted in Microsoft Excel., Results: Out of the 100 survey participants, 98 (98%) answered at least 1 of the 2 questions. Overall, responses across the motivation and expectation items indicated 3 broad themes: community benefit, perceived personal benefit, and trusting relationship with their health care provider. The most common motivators for participation were related to community benefit. These included progressing medical research, benefitting future melanoma patients who may have similar experiences, and broader altruistic sentiments such as "helping others" or "giving back." The most common expectations from the trial related to personal benefit. These included perceived improved outcomes such as earlier diagnosis and treatment, access to additional care, and increased self-empowerment to take actions themselves that benefit their health. Patients expressed a desire to gain health-related knowledge and skills and were interested in the potential advantages of teledermatology. There were no new themes in responses from those who were not randomized or were randomized subsequent to the first 100., Conclusions: We report a tailorable, patient-focused approach to identify drivers of research engagement in clinical research. Clinical trials offer an opportunity to collate a substantial evidence base on determinants of research participation and to identify context-specific factors. Results from the MEL-SELF trial emphasized notable altruism, self-empowerment, and perceived advantages of teledermatology as specific motivators. These findings informed consent processes, recruitment, retention, response to trial tasks, and intervention adherence for the MEL-SELF host trial., Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=379527., (©Deonna Ackermann, Jolyn Hersch, Dana Jordan, Emily Clinton-Gray, Karen Bracken, Monika Janda, Robin Turner, Katy Bell. Originally published in JMIR Dermatology (http://derma.jmir.org), 17.10.2024.)

Background: Health care professionals use mobile apps to support patients' rehabilitation after total hip or knee arthroplasty. Understanding patient engagement in such mobile health interventions can help tailor these interventions to better support patients., Objective: This study aimed to investigate patient engagement in a mobile app-based arthroplasty rehabilitation program and to investigate the association between patient engagement and their characteristics., Methods: Data were extracted from a pool of 42 participants in the experimental arm of a randomized controlled trial that used a mobile app (WeChat [Tencent Holdings Limited])-based program to support patients' rehabilitation after total hip or knee arthroplasty. The primary outcomes were the number of days the participants accessed the program and completed recommended rehabilitation tasks. Secondary outcomes included data on the participants' posts on a discussion forum, messages sent by the participants, access to the program components, and reading and sharing the program content. Generalized linear models were used to analyze the association between patient engagement and personal characteristics., Results: The participants reported in a rehabilitation diary accessing the program on a mean of 5.2 (SD 2) days per week and completing recommended rehabilitation tasks on a mean of 6.5 (SD 0.8) days per week. The majority (31/42, 74%) posted on the discussion forum, with a mean of 18.1 (SD 21.2) posts. Most participants (37/42, 88%) sent messages to health care professionals, with a mean of 14 (SD 15.9) messages. The program components were visited for a total of 525 times. The program content was read 898 times and shared 82 times in total. Generalized linear models showed that both primary outcomes, the number of days the participants accessed the program (B=6.46, 95% CI 1.98-15.35; χ 2 1 =11.1, P=.001) and the number of days they completed rehabilitation tasks (B=2.65, 95% CI 0.45-5.48; χ 2 1 =5.7, P=.02), were positively associated with having a high school education or above. In addition, the number of posts on the discussion forum was positively associated with living with family, having a high school education or above, undergoing total knee arthroplasty, having comorbidities, and the score of self-efficacy but was negatively associated with age. The number of messages sent by the participants was positively associated with having a high school education or above, having comorbidities, and the score of self-efficacy., Conclusions: Patient engagement in mobile arthroplasty rehabilitation is associated with their education level, cohabitation status, age, type of surgery, presence of comorbidities, and sense of self-efficacy. Program developers can consider these characteristics and use strategies, such as family involvement, in the design of mobile arthroplasty rehabilitation programs to enhance patient engagement in such interventions., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12621000867897; https://tinyurl.com/mtdw25fp., (©Qingling Wang, Regina Lai-Tong Lee, Sharyn Hunter, Aiyong Zhu, Sally Wai-Chi Chan. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 01.10.2024.)

Purpose: Breast cancer diagnosis often presents patients with complex treatment decisions, particularly concerning surgical options. A patient decision aid can assist patients in making better decisions, and ultimately improving health outcomes positively. This study aims to explore the perceptions and needs of breast cancer patients regarding the utilization of wed-based surgical decision aids., Methods: A descriptive qualitative study was conducted using semi-structured interviews with purposive sampling that were audio recorded and transcribed verbatim. A thematic analysis was conducted using NVivo 12 software. Participants were recruited from a tertiary general hospital in Shanghai, China. Inclusion criteria were being diagnosed with breast cancer, age over 18 years old, considering breast cancer surgery as a treatment option and able/willing to give informed consent., Results: From March to May 2023, 16 patients consented to participate and completed the interviews. Three major themes were revealed, with corresponding sub-themes: (1) informative and useful content (need to know as much information as possible, easy to understand and presented in multiple ways and highly credible from reliable resource); (2) user-friendly on design (easy to operate, simple function and man-machine interaction); and (3) suggested timing of use., Conclusions: Patients' perspectives and needs about wed-based surgical decision aids are numerous and diverse. In designing wed-based surgical decision aids for breast cancer patients, content, design and timing are all factors that need to be taken into consideration to encourage informed surgical decisions. Further work will focus on developing a feasible and acceptable web-based surgical patient decision aid (PtDA), and test its usability in a clinical setting to understand if the PtDA can meet the decisional needs of breast cancer patients, thus to improve quality of decision-making., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Health care professionals can enhance conversations about serious illness and medical decision-making by adopting a transparent, standardized approach. This article critiques established communication strategies, which often emphasize patient values and goals without providing the necessary medical information to align these goals with a shared understanding of prognosis. We propose an alternate strategy that (1) provides detailed explanations of medical conditions at the beginning of the conversation, (2) includes support persons in discussions, (3) considers capacity, and (4) offers tailored advice by clinicians. The proposed framework aims to provide patients (or their delegates) with the information they need to integrate their values in pursuit of well-informed medical decisions. This strategy builds trust by providing honest information about medical conditions and their trajectories. It empowers decision makers to consider realistic outcomes, allowing them to accept or reject treatments in accordance with their preferences. This article presents a thorough step-by-step guide on how to conduct a serious illness conversation and facilitate medical decision-making, including a supplement that provides example phrases for use in clinical practice.

Study Aims: The present paper aimed at discussing how the process of decision-making should be taken care of in healthcare services., Methods: This is a position paper based on a review of the relevant literature about meaning-making processes in medical encounters and psychotherapy., Discussion: Authors argued that choice options could be perceived as meaningful by patients if their uncertainties were taken into account and grounded on mutual understanding and reciprocal trust. To this end, any decision-making process should satisfy the patient's legitimate expectations by making choices and habits compatible., Conclusion: In depht analysis of meaning-making processes is crucial for better refining good practices of shared decision-making., (© 2024 John Wiley & Sons Ltd.)

Objectives: This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer., Methods: Seventeen couples participated. Semi-structured interviews were conducted on couples' joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale., Results: Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers., Conclusions: Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement., Practice Implications: Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Enhancement of the participant experience in quality of life (QOL) research is imperative to improve recruitment and ongoing engagement in QOL studies. Implementation of recommendations made by the patient and public involvement representatives for STAMPEDE2 could optimise the impact of QOL studies, with a benefit for participants and collection of invaluable data for cancer care research., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Introduction: Engagement is a critical component of successful treatment for opioid use disorder (OUD). However, rates of patient engagement in OUD treatment, especially in outpatient settings, are variable and often low. Little is known about the specific strategies members of primary care teams use to initiate and encourage ongoing participation in OUD treatment. In a national cohort of primary care clinics in the U.S., we explored the perspectives of primary care team members on the meaning of and approaches to OUD treatment engagement., Methods: We conducted semi-structured interviews with 35 providers from multidisciplinary primary care teams in an existing national cohort of 13 clinics across seven states. Teams were delivering OUD treatment via the Collaborative Care Model, a model that combines primary care providers (PCP), behavioral health care managers (BHCM) and consulting psychiatric providers (CPP) in a structured way to provide patient-centered, team-based, and measurement-based care. Interview participants included 14 PCPs, 13 BHCMs, and 8 CPPs. Interviews asked open-ended questions about provider experiences and practices that aided or hindered patient engagement in OUD treatment. Interview transcripts were double-coded by trained qualitative researchers and analyzed using a combination of deductive and inductive approaches to identify themes., Results: Two themes emerged that describe provider perspectives on the meaning of engagement: 1) qualifying engagement by the volume of contact with patients, and 2) the need for more multidimensional measures of engagement. Six themes emerged that characterized provider engagement practices: 1) creating an environment of disclosure, 2) normalizing OUD treatment, 3) offering gentle but persistent outreach, 4) providing human connection and encouragement, 5) tailoring treatment to patient needs, and 6) avoiding stigmatizing responses. Analysis identified multiple replicable strategies that providers used to support these engagement practices., Conclusions: Providers consistently apply a range of strategies when trying to engage patients in OUD treatment. Specific engagement strategies used embodied compassion and pragmatism, hallmarks of patient-centered care. Further research is needed to understand the impact of scaling engagement approaches across all care settings., Competing Interests: Declaration of competing interest The authors do not have any personal, professional, or financial conflicts of interest to disclose for this work. The authors did not work with or were otherwise influenced by any external sponsors for this work. Dr. Saxon has received travel support from Alkermes, Inc., consulting fees from Indivior, Inc., and royalties from UpToDate, Inc. Anna Ratzliff, MD, PhD receives royalties from Wiley for her book on integrated care., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Deaf and hard-of-hearing (DHH) patients often encounter difficulties in effective communication with healthcare professionals and are less likely to receive quality medical care. However, DHH populations are understudied in health communication research. This study examined how offline healthcare obstacles and online health consultation impact DHH patients' health, and the mediating roles of patient-centered care (PCC) and patient activation. Data from 323 DHH patients were analyzed using structural equation modeling to test the hypothesized mediation pathway model. Results indicate that offline healthcare obstacles negatively affect DHH patients' perception of patient-centeredness, which reduces their ability and confidence in self-care (conceptualized as patient activation in this study). This reduced patient activation may jeopardize DHH patients' physical and psychological health. Meanwhile, online health consultation is positively associated with PCC, and higher levels of PCC can increase patient activation, contributing to better physical and psychological health. Testing the same model with hearing-abled participants ( n  = 3542) revealed significant differences in these intervening relationships. Overall, this study provides valuable insights into the relationship between DHH patients' healthcare experience and their health outcomes. The findings support interventions that focus on enhancing PCC and patient activation to improve the physical and psychological health outcomes of DHH patients.

Objective: Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient's appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients' perceptions of undergoing LT evaluation., Methods: We performed fourteen 30-45 min, semi-structured interviews between 3/2021-5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes., Results: Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients' lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes., Conclusion: LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients., Practical Implications: This work can inform targeted interventions for increasing patient engagement during the LT evaluation process., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests. Alexandra Strauss reports financial support was provided by National Institute of Diabetes and Digestive and Kidney Diseases. Dorry Segev reports financial support was provided by National Institute of Allergy and Infectious Diseases. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Objectives: Through the lens of self-determination theory, this quantitative study investigates how patient-provider collaboration through perceived shared decision-making (SDM) and autonomy support impact type 2 diabetes (T2D) outcomes., Methods: We sampled 474 individuals over 18 years old who self-identified as having T2D. Completed and valid responses were received from 378 participants from two separate groups in an online survey. Data was analyzed using the IBM Statistical Package for Social Sciences (SPSS), AMOS package, version 28, and Mplus, version 8.8., Results: Patient-provider collaboration through autonomy support improved treatment satisfaction (β = .16, ρ < .05) and self-management adherence (β = .43, ρ < .001). While collaboration through SDM improved treatment satisfaction (β = .25, ρ < .01), it worsened SM adherence (β = -.31, ρ < .001). The negative impact of SDM on self-management adherence was mitigated by our moderator, coping ability. However, coping ability minimally impacted treatment satisfaction and SM adherence when autonomous support was provided., Conclusions: Autonomy support increases treatment satisfaction and self-management adherence. SDM enhances treatment satisfaction but may adversely affect self-management adherence. The study also suggests that coping ability can mitigate the negative effect of SDM on self-management adherence, although its influence is limited when autonomy support is provided by the provider., Practical Implications: For providers, SDM and autonomy support permits shared power over treatment decisions while fostering independence over self-management tasks. Providers should evaluate patients' coping ability and adapt their approach to care based on the patient's coping capacity., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Black/African American adults are underrepresented in oncology clinical trials in the United States, despite efforts at narrowing this disparity., Objective: This study aims to explore differences in how Black/African American oncology patients perceive clinical trials to improve support for the clinical trial participation decision-making process., Methods: As part of a larger randomized controlled trial, a total of 244 adult oncology patients receiving active treatment or follow-up care completed a cross-sectional baseline survey on sociodemographic characteristics, clinical trial knowledge, health literacy, perceptions of cancer clinical trials, patient activation, patient advocacy, health care self-efficacy, decisional conflict, and clinical trial intentions. Self-reported race was dichotomized into Black/African American and non-Black/African American. As appropriate, 2-tailed t tests and chi-square tests of independence were used to examine differences between groups., Results: Black/African American participants had lower clinical trial knowledge (P=.006), lower health literacy (P<.001), and more medical mistrust (all P values <.05) than non-Black/African American participants. While intentions to participate in a clinical trial, if offered, did not vary between Black/African American and non-Black/African American participants, Black/African American participants indicated lower awareness of clinical trials, fewer benefits of clinical trials, and more uncertainty around clinical trial decision-making (all P values <.05). There were no differences for other variables., Conclusions: Despite no significant differences in intent to participate in a clinical trial if offered and high overall trust in individual health care providers among both groups, beliefs persist about barriers to and benefits of clinical trial participation among Black/African American patients. Findings highlight specific ways that education and resources about clinical trials could be tailored to better suit the informational and decision-making needs and preferences of Black/African American oncology patients., (©Ariel Hoadley, Linda Fleisher, Cassidy Kenny, Patrick JA Kelly, Xinrui Ma, Jingwei Wu, Carmen Guerra, Amy E Leader, Mohammed Alhajji, Paul D’Avanzo, Zoe Landau, Sarah Bauerle Bass. Originally published in JMIR Cancer (https://cancer.jmir.org), 30.09.2024.)

Introduction: Patient-centered care (PCC) is the preferred health policy approach that emphasizes responding to individual patient preferences, wishes, and needs. PCC requires active patient engagement. While there has been extensive research on physicians' robes, there is limited research on hospital-issued patient gowns during hospitalizations. How does the gown affect the cognitive-emotional experience of hospitalized patients? How is the gown associated with PCC?, Methods: The sample of this cross-sectional study consisted of 965 patients who were hospitalized at least once during the past year in a tertiary hospital. Measures were previously published., Results: The gown was strongly associated with lack of control and increased distress, and was negatively associated with patient proactiveness, engagement, and taking responsibility for self-management of chronic illness. Compared to male patients, female patients wearing the gown had stronger negative emotions and cognitively strong associations with the external locus of control, which inhibited engagement., Discussion: The hospital gown is an unacknowledged barrier to achieving PCC, inhibits patient engagement, and reflects the paradoxes of inadvertently excluding patients' needs from hospital practice. The hospital gown must be modified to protect the patient's voice and enhance engagement. Policymakers are called to apply design thinking to facilitate patient participation in decision-making to accord hospital clothing to PCC and improve healthcare delivery., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Gabay and Ornoy.)

Background: Patient Organizations (POs) are an important support factor in helping chronically ill patients cope with their illness. Patient involvement in the management of their disease helps to achieve the best possible care for the patient, streamline the work of healthcare providers, shape healthcare policy, and even influence the structures of healthcare systems. The perspective of chronically ill patients on the activities and services provided by patient organizations has not been evaluated yet. This study aimed to identify and map the services and activities of all types of non-profit patient organizations from the perspective of chronically ill patients so that they can be integrated as an integral part of the healthcare system., Methods: Nineteen services and activities of patient organizations were sampled from Israeli patient organizations and scientific literature. These services and activities were evaluated by chronically ill patients in Israel. Patient-Oriented Questionnaires (POQ) were distributed among patients with chronic diseases (N = 1395) using snowball sampling., Results: Exploratory factor analysis (EFA) was performed, followed by confirmatory factor analysis (CFA) for convergent and discriminant validity. Findings showed that twelve services and activities suggested by patient organizations were found to represent chronically ill patients' needs and categorized into three groups: Interpersonal support (five items), patients' rights (four items), and medical information (three items). CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058., Conclusions: Well-organized patient organizations are an important pillar in reformed healthcare systems. They can serve as the social arm of the healthcare system and as an intermediary between patients and healthcare institutions. We narrowed down twelve services and activities given by patient organizations that were important to chronically ill patients in Israel. patient organizations can utilize patient needs or preferences into clinical practice and influence health policy planning, patient-caregiver relationships, research and even healthcare costs. patient organizations recognition by the healthcare system, and establishment of a national patient council will help to realize these processes., (© 2024. The Author(s).)

Background: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs., Methods: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations., Results: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields., Conclusion: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process., (© 2024. The Author(s).)

Background and Objectives: Despite increasing calls for more patient engagement in patient safety, limited knowledge remains on what actually motivates key stakeholders in healthcare to promote patient engagement. We therefore set out to survey key stakeholders of patient engagement in patient safety (i.e., patients, healthcare professionals, and managers). We aimed to identify and explore stakeholder's distinct and shared motives for patient engagement., Methods: A stepwise Delphi method was applied, utilizing semi-structured online interviews for determination of stakeholder motives for patient engagement in patient safety. In a subsequent online survey, statements were evaluated and identified. 34 subject-matter experts from all relevant stakeholder groups completed the online interviews and 33 the online survey. We used content analysis approaches for qualitative and descriptive analyses for quantitative measures. Further, we evaluated the consensus on distinct and shared motives across stakeholder groups., Results: Seven key motives for patient engagement in patient safety were identified. Major motives attributed to patients were: (1) To improve experiences and care outcomes for oneself, as well as (2) for future patients, (3) to express gratitude and appreciation, (4) to cope successfully with treatment-related emotions. A motive shared by patients and professionals was (5) to contribute actively to improved delivery of healthcare. To optimize patient safety, costs, and care processes (6) was shared by professionals and managers. Lastly, (7) to improve patient-provider relationships was jointly shared by all stakeholder groups. For four motives (1, 2, 6, 7) consensus was established., Conclusions: In order to unlock the full potential of future interventions in patient engagement, a deeper understanding of stakeholder motives is essential. We identified a set of distinct and shared motives for patient engagement across relevant stakeholder groups. Our findings may inform future interventions in patient engagement that take account of the motivational foundations and aspirations of all stakeholders who are key for the success for collaborative patient safety and care improvements., Trial Registration: ID DRKS00031837 (Date May 8, 2023)., (© 2024. The Author(s).)

Competing Interests: Conflict of interest: none declared.

Background: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial., Objective: This study aims to assess patients' and health care providers' perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns., Methods: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities., Results: Participants expected a PHR would increase the transparency of health information, improve patients' understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload., Conclusions: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition., (©Martijn R Brands, Lotte Haverman, Jelmer J Muis, Mariëtte H E Driessens, Stephan Meijer, Felix J M van der Meer, Marianne de Jong, Johanna G van der Bom, Marjon H Cnossen, Karin Fijnvandraat, Samantha C Gouw. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 03.09.2024.)

Introduction: Little is known about the best way to engage an adolescent oncology patient in decision-making. To integrate adolescent oncology patients most effectively in decision-making, it is important to understand their perceptions not only as adolescents but also as adult survivors who have had time to reflect upon their experience. The purpose of this study is to explore perceptions of survivors of pediatric cancer to better understand their attitudes toward participation in decision-making, decisional regret, and use of decision-support tools., Methods: An electronic survey tool, containing open- and closed-ended responses, was distributed to adult cancer survivors diagnosed and treated for cancer between the ages of 9 and 18 at a Midwestern, Comprehensive Cancer Center within a tertiary care academic hospital., Results: Seventy responses were received. Nearly all respondents (96%) reported that decisions made on their behalf were consistent with their desires most/all the time. Almost one-fifth felt that increased involvement would have intensified their anxiety. Eighty-five percent did not regret choices made about their cancer treatment, and 88% would have made the same choices again. Respondents desired more targeted information on the long-term impacts of treatment (i.e., infertility, memory difficulties, mental health concerns), and they highlighted the importance of communication in the decision-making process., Conclusions: Adolescents want to participate in the decision-making process in a way that accommodates their understanding of the pathology and potential impacts of treatment. Our results suggest that developing a simple intervention to help facilitate provision of such anticipatory guidance may be helpful., (Copyright © 2024 Elsevier Inc. All rights reserved.)

It is perhaps most useful to approach the Doctor-Patient relationship (DPR) by admitting that it's complicated. We review some of the strategies that have been employed to mitigate this complexity, zeroing in on one that promises to capture the main features of the DPR without eliminating some of its more important, existential components; pieces of the puzzle that must be retained if we are to avoid oversimplification and the errors that can arise by ignoring important foundational properties. We believe that a useful way to look at the DPR and to capture essential features that must be balanced in the process is provided by Partnership Theory and its definition in terms of the so-called domination and partnership systems. We apply this theory to the DPR and investigate the implications of this application to health care. We see that in the absence of mitigating circumstances, adoption of the patient-as-partner model serves healthcare well and is flexible enough to accommodate circumstances that dictate modifications., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Shared decision-making supports women's choices in pregnancy. Women with high body mass index (≥35 kg/m 2 ) experience a high rate of interventions in pregnancy, labour, and birth, providing an opportunity for clinicians to implement shared decision-making in practice. However, weight stigma may limit women's opportunities for shared decision-making., Aim: To understand how pregnant women with high body mass index perceive their involvement in antenatal decision-making, including whether weight stigma influences their experience., Methods: Women with high body mass index were recruited via purposive sampling from two sites in Melbourne, Australia. Semi-structured interviews were audio-recorded, transcribed, and analysed using reflexive thematic analysis., Findings: Ten pregnant women consented to participate. Three themes and six sub-themes were identified. These were: 1) Trusting the system, 2) Who takes the lead?, and 3) Defying disease., Discussion: Shared decision-making is limited for women with high body mass index in antenatal care, and weight stigma is experienced by women. Clinical practice recommendations relating to excess weight have the potential to further limit women's involvement in decision-making if adequate support is not provided to ensure women's understanding and involvement in care., Conclusion: Women's involvement in care is a central component of shared decision-making and it is currently limited for women with high body mass index. Transparency regarding the rationale for recommendations is required, and further work must be done to address the influence and impact of weight stigma on the care of women with high body mass index., Competing Interests: Conflict of Interest Linda Sweet has editorial duties with this journal. To reduce any real or perceived conflict of interest, she had no role in the processing or peer review of this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: On June 24th, 2022, the United States (US) Supreme Court's ruling in Dobbs v. Jackson, et al. (hereafter, the Dobbs decision) removed federal-level protections for induced abortion, sparking concerns about reproductive rights and health privacy. Although other pregnancy outcomes (e.g. spontaneous abortion, ectopic pregnancy) are not explicit targets of post-Dobbs abortion bans, study participants may be worried about how their reproductive health data are used by researchers in the post-Dobbs era., Objective: To evaluate the extent to which the Dobbs decision influenced participant's engagement in a preconception cohort study., Methods: We leveraged data spanning 20 weeks before and after the Dobbs decision (4 February 2022, to 11 November 2022) from US participants in Pregnancy Study Online (PRESTO), an internet-based prospective preconception cohort study of couples attempting conception. We categorised participants' state-level abortion access by residential location: banned or restricted rights; limited access; and protected rights. We evaluated three participant engagement outcomes: follow-up questionnaire completion; report of a pregnancy; and clicking on the invitation link for a fertility-tracking app. We fit separate linear regression models and restricted cubic splines to compare outcome prevalence before and after the Dobbs decision by state-level abortion category., Results: A total of 585 newly enrolled participants and 1247 already-enrolled participants received 2802 invitations to complete a follow-up questionnaire. In states with limited or protected abortion rights, we observed little change in participant engagement. In states with banned or restricted abortion rights, however, we observed a 27.12 percentage point reduction (95% confidence interval -43.68, -10.51) in the prevalence of clicking on the invitation link for the fertility-tracking app comparing the post- versus pre-Dobbs periods., Conclusions: There was some evidence of reduced participant engagement after the Dobbs decision in states with banned or restricted abortion rights, indicating potentially deleterious effects on the conduct of reproductive health studies., (© 2024 John Wiley & Sons Ltd.)

There has been a growing emphasis on consumer representation in the development of health policy, services, research, and education. Existing literature has critiqued how discourses of representativeness can disempower consumers working in health systems. The context of the current study is consumer engagement in the development of COVID-19 triage policy and practice in a local health service. Consumer engagement has often been an afterthought in the COVID response, with few examples of consumers in agenda-setting or decision-making roles. In the Australian Capital Territory, 26 consumer, carer, and community groups worked together with academics and clinicians to develop these principles. Interviews were conducted with stakeholders (including consumers, clinicians, and other health professionals) to evaluate the development of triage principles. A discursive psychological approach to analysis was used to explore participants' understandings about and constructions of consumers being representative (or not) and how this may reproduce power imbalances against consumers. The results explore two distinct ways in which participants talked about consumer representativeness: the first drawing on rhetoric about consumers as lay members of the public (as distinct from being professionally engaged in the health sector), and the second in terms of consumer representatives being diverse and having intersectional identities and experiences. Expectations about consumers to be representative of the general population may reproduce traditional power imbalances and silence lived experience expertise. These power imbalances may be challenged by a shift in the way representativeness is conceptualised to requiring health services to seek out diverse and intersectionally marginalised consumers., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Implementation of shared decision-making in antenatal care has had limited exploration., Objective: To assess what is known about shared decision-making in antenatal care., Search Strategy: Five databases were searched (1997-2022) limited to English language studies from OECD countries., Data Collection and Analysis: A data collection table was constructed with findings from 32 papers. A narrative synthesis was conducted with subsequent thematic analysis of included papers., Main Results: Four areas of decision-making were identified with six themes revealing enablers and barriers to shared decision-making in antenatal care., Conclusion: Implementation of shared decision-making requires continuity, time and personalisation of care., (© 2023 The Authors. Birth published by Wiley Periodicals LLC.)

Background: Patient participation is fundamental in nursing care and has yielded benefits for patient outcomes. However, despite their compassionate care approach, nurses do not always incorporate patients' needs and wish into evidence-based practice, quality improvement or learning activities. Therefore, a shift to continuous quality improvement based on evidence-based practice is necessary to enhance the quality of care. The patient's opinion is an essential part of this process. To establish a more sustainable learning culture for evidence-based quality improvement, it is crucial that nurses learn alongside their patients. However, to promote this, nurses require a deeper understanding of patients' care preferences., Objective: To explore patients' needs and wishes towards being involved in care processes that nurses can use in developing an evidence-based quality improvement learning culture., Methods: A qualitative study was conducted in two hospital departments and one community care team. In total, 18 patients were purposefully selected for individual semi-structured interviews with an average of 15 min. A framework analysis based on the fundamental of care framework was utilised to analyse the data deductively. In addition, inductive codes were added to patients' experiences beyond the framework. For reporting this study, the SRQR guideline was used., Results: Participants needed a compassionate nurse who established and sustained a trusting relationship. They wanted nurses to be present and actively involved during the care delivery. Shared decision-making improved when nurses offered fair, clear and tailored information. Mistrust or a disrupted nurse-patient relationship was found to be time-consuming and challenging to restore., Conclusions: Results confirmed the importance of a durable nurse-patient relationship and showed the consequences of nurses' communication on shared decision-making. Insights into patients' care preferences are essential to stimulate the development of an evidence-based quality improvement learning culture within nursing teams and for successful implementation processes., (© 2024 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles-Predictive, Preventive, Participatory, Personalized, and Precision Medicine-the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases., Competing Interests: Ivan Miguel Pires is an Academic Editor for PeerJ Computer Science., (© 2024 Denysyuk et al.)

Introduction: Digital mental health interventions (DMHIs) overcome traditional barriers enabling wider access to mental health support and allowing individuals to manage their treatment. How individuals engage with DMHIs impacts the intervention effect. This review determined whether the impact of user engagement was assessed in the intervention effect in Randomised Controlled Trials (RCTs) evaluating DMHIs targeting common mental disorders (CMDs)., Methods: This systematic review was registered on Prospero (CRD42021249503). RCTs published between 01/01/2016 and 17/09/2021 were included if evaluated DMHIs were delivered by app or website; targeted patients with a CMD without non-CMD comorbidities (e.g., diabetes); and were self-guided. Databases searched: Medline; PsycInfo; Embase; and CENTRAL. All data was double extracted. A meta-analysis compared intervention effect estimates when accounting for engagement and when engagement was ignored., Results: We identified 184 articles randomising 43,529 participants. Interventions were delivered predominantly via websites (145, 78.8%) and 140 (76.1%) articles reported engagement data. All primary analyses adopted treatment policy strategies, ignoring engagement levels. Only 19 (10.3%) articles provided additional intervention effect estimates accounting for user engagement: 2 (10.5%) conducted a complier-average-causal effect (CACE) analysis (principal stratum strategy) and 17 (89.5%) used a less-preferred per-protocol (PP) population excluding individuals failing to meet engagement criteria (estimand strategies unclear). Meta-analysis for PP estimates, when accounting for user engagement, changed the standardised effect to -0.18 95% CI (-0.32, -0.04) from - 0.14 95% CI (-0.24, -0.03) and sample sizes reduced by 33% decreasing precision, whereas meta-analysis for CACE estimates were - 0.19 95% CI (-0.42, 0.03) from - 0.16 95% CI (-0.38, 0.06) with no sample size decrease and less impact on precision. DISCUSSION: Many articles report user engagement metrics but few assessed the impact on the intervention effect missing opportunities to answer important patient centred questions for how well DMHIs work for engaged users. Defining engagement in this area is complex, more research is needed to obtain ways to categorise this into groups. However, the majority that considered engagement in analysis used approaches most likely to induce bias., (© 2024. The Author(s).)

This is an observational study in which we evaluated current levels of risk communication (RC) among gynaecological oncologists and their view on the Mapping All Patient Probabilities in Numerical Graphs (MAPPING) application as a possible tool to facilitate RC and shared decision-making (SDM). In part A, we audio-recorded 29 conversations between gynaecological oncologists and patients when discussing treatment options. In part B, interviews were performed with eight gynaecological oncologists.RC and SDM were measured using two observer-based measures, that is, the RC content (RCC) tool (scale 0-2) and the OPTION-5 instrument (scale 0-100). We used CollaboRATE questionnaire (scale 0-10) and a self-developed survey to assess patient-reported RC and SDM. In part B, we evaluated physicians' attitudes regarding the use of the MAPPING application to support RC. Patients were minimally involved in the decision-making process (OPTION-5 25.9%±13.4 RCC 0.21±0.18). Patient-reported SDM was high (mean collaboRATE score 9.19±1.79) and patients preferred receiving numeric information, whereas most physicians used qualitative risk terms rather than exact numbers. In part B, gynaecologists had a positive attitude towards the MAPPING application. However, they stated that the app was difficult to use improvement of layout and better implementations are needed., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: In recent decades, there has been a growing emphasis on involving patients in healthcare decision-making, driven by political, ethical, and research considerations. Although patient involvement is associated with improved health outcomes, understanding patient preferences regarding their role in decision-making is crucial for effective interventions. The Control Preferences Scale (CPS) measures patient preferences along a continuum from passive to active participation. However, its application in Denmark necessitates translation and cultural adaptation., Methodology: This study aimed to translate and culturally adapt the CPS for Danish use across diverse healthcare settings: acute care, cancer care, elective surgery, chronic medical treatment, and parental involvement in pediatric care. Following a cross-sectional design, the translation process was systematically planned and executed using Beaton's guidelines, including the five stages: forward and back translation, synthesis, expert review, and pre-testing., Results: The translation and adaption process was carried out successfully. Few linguistic challenges were identified and resolved by the expert review. The findings of the pre-testing indicated high acceptability and usability of the adapted CPS among 152 Danish patients and parents. The collaborative role emerged as the most preferred across settings (69.8%), with passive roles more prevalent among cancer patients (30%) and parents waiting with their child to see a pediatrician (23.3%). Notable, more women preferred collaborative or active roles (83.9%) than men (73.9%). The content validity assessment yielded positive feedback, affirming the relevance and comprehensiveness of the CPS., Conclusions: In summary, the adaptation and validation of the CPS for Danish use proved successful, providing a valuable tool for assessing patient's role preferences in healthcare decision-making. However, future studies are recommended to ensure construct validity and reliability through psychometric testing., (© 2024. The Author(s).)

Background & Need for Innovation: Patients can be actively involved in various aspects of health professions education (HPE). However, learners in HPE graduate programs have minimal opportunities to learn how to involve patients in HPE., Steps Taken for Development and Implementation of Innovation: We designed, implemented, and evaluated a 12-week asynchronous, online graduate course that provides learners such opportunities. We established an advisory committee of patients, clinician-educators, and professors to guide course development. Using Thomas et al.'s framework, we established the general and targeted need for the course, identified the learning outcomes, determined the learning activities, and implemented and evaluated the course. It is offered within the asynchronous, online Diploma and Master in HPE at the University of Ottawa, Canada., Evaluation of Innovation: Forty learners participated in the course between 2020 and 2022. Using a survey with closed- and open-ended items, learners reported satisfaction with all course components, and they valued the patient narrative videos created for the course. After course completion, learners reported that the course is relevant to their professional practice. They also reported confidence in their abilities to actively involve patients in HPE. Based on the culminating assignment assessment data, learners attained course expectations., Critical Reflection: Although patients who participated in the narrative videos represented diverse age ranges, health conditions, and experiences in HPE, they were often Caucasian, educated, and from a higher socio-economic background. Also, the level of engagement between patients and learners in the course was limited. We are committed to improving our own patient involvement efforts., Competing Interests: The authors have no competing interests to declare., (Copyright: © 2024 The Author(s).)

Introduction: Shared decision-making (SDM) is on the NHS policy agenda, and the preferred model for preference-sensitive decisions. This study establishes baseline patient-perceived SDM in a radical head and neck cohort, and explores patients' views on SDM in a large, specialist trust., Methods: An SDM questionnaire was distributed to all radical head and neck radiotherapy patients (N = 165), June-December 2023. This combined a well-validated instrument for measuring SDM from the patient perspective, SDM-Q-9, with additional questions exploring patient views. Thematic analysis was used to construct and interpret themes., Results: 65/165 (39%) questionnaires were returned. SDM-Q-9 mean standardised score was 78.6 (SD 26.3). There was a moderate ceiling effect (26%). Scores were not sensitive to sex (p = 0.64) or age (ρ = 0.1). Higher levels of SDM were perceived by participants who stated SDM was very important (51/65, 79%) than somewhat or not at all important (82.4 vs. 62.7; p = 0.02; Cohen d = 0.75). Individuals who discussed their personal priorities with the clinician (46/65, 70.8%), were more likely to be very satisfied with their involvement in SDM (89.1% vs. 52.9%). Thematic analysis generated three themes: Control, Desire for Transparency and Understanding, and Doctor as the Expert., Conclusion: Patient-perceived SDM levels are high for head and neck patients. Participants who value SDM also perceive higher levels of SDM. Patient satisfaction increases when individuals discuss their personal priorities. The modest response rate and self-selection bias affect the generalisability of the results. Only radiotherapy patients were included; those who chose alternative treatment may perceive different levels of SDM. The moderate ceiling effect may limit the use of SDM-Q-9 to measure impact of future interventions to improve SDM., Implications for Practice: SDM-Q-9 should be combined with an objective, observer measure of SDM., Competing Interests: Conflict of interest statement None., (Copyright © 2024 The College of Radiographers. Published by Elsevier Ltd. All rights reserved.)

Objective: There are compelling ethical and practical reasons for patient engagement in research (PEIR), however, evidence for best practices remains limited. We investigated PEIR as implemented in CAPTURE ALS, a longitudinal observational study, from study inception through the first 2.5 years of operations., Methods: Data were drawn from three engagement initiatives: a community-led letter-writing campaign; consultation with patient and caregiver focus groups; and a study-embedded 'participant partner advisory council' (PPAC). Data were derived retrospectively from study documentation. We used the International Association of Public Participation (IAP2) participation spectrum as a framework for investigation., Results: 2401 letters from community members to the Canadian government affirmed study objectives and advocated for funding. Feedback from focus group consultation influenced study design and supported the study's data-sharing plan. PPAC collaboration shaped all aspects of the study. Contributions included: co-creation of governance documents, input on study protocols and public-facing communication, and development of engagement webinars for study participants and feedback surveys. Effective communication practices fostered collaboration and helped avoid tokenistic engagement. CAPTURE ALS encompassed all IAP2 participation levels., Conclusions: CAPTURE ALS was shaped by meaningful engagement initiatives over the course of the study. Lessons learned included: begin early and embed PEIR within research; build relationships and foster mutual learning; be flexible, open to adaptation, and seek diversity. Primary challenges included funding for early implementation, time needed to maintain relationships, and attrition due to disease progression. All IAP2 participation levels contributed to meaningful PEIR. 'Empowerment' was demonstrated through advocacy.

Introduction: Quality in health services is increasingly associated with enabling patients to participate in their own health and healthcare by recognising their resources and needs. Despite a growing recognition as to whether such participation is enabled, little is known regarding opportunities for preference-based patient participation in orthopaedic care., Aims: To investigate preference-based participation for patients in orthopaedic care due to hip surgery., Methods: Patients across 17 Swedish orthopaedic units who had had hip surgery, due to hip fracture or osteoarthritis, January-April 2021 were invited to complete the validated 4Ps questionnaire. Of 1514 patients, 458 patients returned the questionnaire with reports on their preferences for and experiences of participation. Each of the 4Ps' 12 items were analysed separately using descriptive and comparative statistics., Results: A complete match in preferences for, and experiences of, participation was achieved with variation between items for 41%-50% of the patients; if almost matches were included, this occurred for 57%-77% of the patients. Less participation than preferred was most common in terms of having had reciprocal communication, opportunities for partaking in planning, and in learning how to manage symptoms/issues. Hip fracture surgery was significantly associated with experiencing lower levels of participation than preferred., Conclusion: Though standardised care promotes efficient hip surgery care, our study suggests a need for more person-centred opportunities to engage. A discrepancy was noted between patients' resources and preparation for their participation in and beyond the hip surgery process, particularly for self-care activities, calling for better use of nursing resources. ID: NCT04700969 with the U.S National Institutes of Health Clinical Registry., Competing Interests: Declaration of competing interest The authors declare no known competing financial interest or personal relationship that could have influenced the work reported in this paper. The 4Ps is protected by copyright but may be available for free after discussion with the last author., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: Prenatal genetic screens and diagnostic tests are vital components of prenatal care. The first prenatal visit is a critical time in the decision-making process when patients decide whether to use these tests in addition to address a series of other essential prenatal care aspects. We conducted this study to examine the role of a shared decision-making (SDM) instrument to support these discussions., Methods: We conducted a cluster randomized controlled trial of patients allocated to an SDM tool or usual care at their first prenatal visit. Participants completed a baseline survey to measure decision-making needs and preferences. Direct observation was conducted and analyzed using the OPTION scale to measure SDM during prenatal genetic testing discussions., Results: Levels of SDM were similar across groups ( P  = 0.081). The highest levels of SDM were observed during screening test discussions (NEST 2.4 ± 0.9 v. control 2.6 ± 1.0). Lowest levels were observed in discussions about patients' preference for risk versus diagnostic information (NEST 1.0 ± 1.1 v. control 1.2 ± 1.3)., Conclusion: Study findings demonstrate the need for targeted patient-focused and provider-focused efforts to improve SDM to enhance patients' informed decision making about these options. Importantly, patients' baseline knowledge and attitudes need to be considered given that patients with less knowledge may need more carefully crafted communication., Highlights: Choices about whether, when, and how to use prenatal genetic tests are highly preference-based decisions, with patients' baseline attitudes about these options as a major driver in health care discussions.The decision-making process is also shaped by patient preferences regarding a shared or informed decision-making process for medical decisions that are highly personal and have significant ramifications for obstetric outcomes.There is a need to develop targeted efforts to improve decision making and enhance patients' ability to make informed decisions about prenatal genetic tests in early pregnancy., Competing Interests: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Susannah Rose, consulting ethicist, National Pharmacy and Medical Policy Committee & National Pharmacy and Therapeutics Committee, Blue Cross Blue Shield Association (nonprofit); Bo Hu, National Institutes of Health and Patient-Centered Outcomes Research Institute. All other authors declare no conflicts of interest.

Background: Informed consent is a relevant backdrop for conducting clinical trials, particularly those involving children. While several factors are known to influence the willingness to consent to pediatric anesthesia studies, the influence of study design on consenting behavior is unknown., Aims: To quantify the impact of study complexity on willingness to consent to pediatric anesthesia studies., Methods: We conducted a vignette-based interview study by presenting three hypothetical studies to 106 parents or legal guardians whose children were scheduled to undergo anesthesia. These studies differed in level of complexity and included an example of a prospective observational study, a randomized controlled trial, and a phase-II-pharmacological study. Primary outcome was the willingness to consent, using a 5-point Likert scale ranging from "absolutely consent" to "absolutely decline". Secondary outcomes were the effects of child-related (such as sex, age, previous anesthesia, research exposure) and proxy-related factors., Results: Response probabilities for "absolute consent" were 90.9% [95% CI 85.3-96.5] for the observational study, 48.6% [95% CI 38.3-58.9] for the randomized controlled trial, and 32.7% [95% CI 23.9-41.6] for the phase-II-pharmacological study. Response probabilities for "absolutely decline" were 1.6% [95% CI 0.3-2.8], 14.4% [95% CI 8.3-20.5], and 24.7% [95% CI 16.6-32.7], respectively. Significant effects were found for previous research exposure (OR = 0.486 [95% CI 0.256-0.923], p = .027), older age (OR = 0.963 [95% CI 0.927-0.999], p = .045) and the gender of the parent or legal guardian, as mothers were less willing to consent (OR = 0.234 [95% CI 0.107-0.512], p < .001)., Conclusions: Willingness to consent decreased with increasing level of study complexity. When conducting more complex studies, greater efforts need to be made to increase the enrollment of pediatric patients., (© 2024 The Authors. Pediatric Anesthesia published by John Wiley & Sons Ltd.)