Patient autonomy and shared decision-making in the context of clinical trial participation.

AIMS: This study aimed to explore how incorporating shared decision-making (SDM) can address recruitment challenges in clinical trials. Specifically, it examines how SDM can align the trial process with patient preferences, enhance patient autonomy and increase active patient participation. Additionally, it identifies potential conflicts between SDM and certain clinical trial aspects, such as randomization or blinding, and proposes solutions to mitigate these issues. MATERIALS AND METHODS: We conducted a comprehensive review of existing literature on patient recruitment challenges in clinical trials and the role of SDM in addressing these challenges. We analysed case studies and trial reports to identify common obstacles and assess the effectiveness of SDM in improving patient accrual. Additionally, we evaluated three proposed solutions: adequate trial design, communication skill training and patient decision aids. RESULTS: Our review indicates that incorporating SDM can significantly enhance patient recruitment by promoting patient autonomy and engagement. SDM encourages physicians to adopt a more open and informative approach, which aligns the trial process with patient preferences and reduces psychological barriers such as fear and mental stress. However, implementing SDM can conflict with elements such as randomization and blinding, potentially complicating trial design and execution. DISCUSSION: The desire for patient autonomy and active engagement through SDM may clash with traditional clinical trial methodologies. To address these conflicts, we propose three solutions: redesigning trials to better accommodate SDM principles, providing communication skill training for physicians and developing patient decision aids. By focussing on patient wishes and emotions, these solutions can integrate SDM into clinical trials effectively. CONCLUSION: Shared decision-making provides a framework that can promote patient recruitment and trial participation by enhancing patient autonomy and engagement. With proper implementation of trial design modifications, communication skill training and patient decision aids, SDM can support rather than hinder clinical trial execution, ultimately contributing to the advancement of evidence-based medicine.

Physician awareness of patients' preferred level of involvement in decision-making at the initial urogynecology visit: a randomized trial.

BACKGROUND: Studies have shown up to a 40% discordance between patients' preferred roles in decision-making before and their perceived roles after their visit. This can negatively affect patients' experiences; interventions to minimize this discordance may significantly improve patient satisfaction. OBJECTIVE: We aimed to determine whether physicians' awareness of patients' preferred involvement in decision-making before their initial urogynecology visit affects patients' perceived level of involvement after their visit. STUDY DESIGN: This randomized controlled trial enrolled adult English-speaking women presenting for their initial visit at an academic urogynecology clinic from June 2022 to September 2022. Before the visit, participants completed the Control Preference Scale to determine the patient's preferred level of decision-making: active, collaborative, or passive. The participants were randomized to either the physician team being aware of their decision-making preference before the visit or usual care. The participants were blinded. After the visit, participants again completed a Control Preference Scale and the Patient Global Impression of Improvement, CollaboRATE, patient satisfaction, and health literacy questionnaires. Fisher exact, logistic regression, and generalized estimating equations were used. Based on a 21% difference in preferred and perceived discordance, we calculated the sample size to be 50 patients in each arm to achieve 80% power. RESULTS: Women (n=100) with a mean age of 52.9 years (standard deviation=15.8) participated in the study. Most participants identified as White (73%) and non-Hispanic (70%). Before the visit, most women preferred an active role (61%) and few preferred a passive role (7%). There was no significant difference between the 2 cohorts in the discordance between their pre- and post-Control Preference Scale responses (27% vs 37%; P=.39) or whether their symptoms were much better or very much better following the visit (18% vs 37%; P=.06). However, when asked whether they were completely satisfied with the visit, those assigned to the physician awareness cohort reported higher satisfaction than those in the treatment as usual cohort (100% vs 90%; P=.03). CONCLUSION: Although there was no significant decrease in discordance between the patient's desired and perceived level of decision-making following physician awareness, it had a significant effect on patient satisfaction. All patients whose physicians were aware of their preferences reported complete satisfaction with their visit. Although patient-centered care does not always entail meeting all of the patients' expectations, the mere understanding of their preferences in decision-making can lead to complete patient satisfaction.

Should AI models be explainable to clinicians?

In the high-stakes realm of critical care, where daily decisions are crucial and clear communication is paramount, comprehending the rationale behind Artificial Intelligence (AI)-driven decisions appears essential. While AI has the potential to improve decision-making, its complexity can hinder comprehension and adherence to its recommendations. "Explainable AI" (XAI) aims to bridge this gap, enhancing confidence among patients and doctors. It also helps to meet regulatory transparency requirements, offers actionable insights, and promotes fairness and safety. Yet, defining explainability and standardising assessments are ongoing challenges and balancing performance and explainability can be needed, even if XAI is a growing field.

Patient-centered respectful maternity care: a factor analysis contextualizing marginalized identities, trust, and informed choice.

BACKGROUND: Increasing rates of maternal mortality and morbidity, coupled with ever-widening racial health disparities in maternal health outcomes, indicate that radical improvements need to be made in the delivery of maternity care. This study explored the provision of patient-centered maternity care from the perspective of pregnant and postpartum people; experiences of respect and autonomy were examined through the multi-dimensional contexts of identity, relational trust, and protection of informed choices. METHODS: We conducted primary data collection among individuals who experienced a pregnancy in the five years preceding the survey (N = 484) using the validated Mothers on Respect Index (MORi) and Mothers Autonomy in Decision Making (MADM) scale. We conducted an exploratory factor analysis (EFA) which produced three factor variables: trust, informed choice, and identity. Using these factor variables as dependent variables, we conducted bivariate and multivariate analysis to examine the relationship between these factor variables and social marginalization, as measured by race, disability, justice-involvement, and other social risk factors, such as food and housing insecurity. RESULTS: Results of our bivariate and multivariate models generally confirmed our hypothesis that increased social marginalization would be associated with decreased experiences of maternity care that was perceived as respectful and protective of individual autonomy. Most notably, AI/AN individuals, individuals who are disabled, and individuals who had at least one social risk factor were more likely to report experiencing identity-related disrespect and violations of their autonomy. CONCLUSIONS: In light of the findings that emphasize the importance of patient identity in their experience in the healthcare system, patient-centered and respectful maternity care must be provided within a broader social context that recognizes unequal power dynamics between patient and provider, historical trauma, and marginalization. Provider- and facility-level interventions that improve patient experiences and health outcomes will be more effective if they are contextualized and informed by an understanding of how patients' identities and traumas shape their healthcare experience, health-seeking behaviors, and potential to benefit from clinical interventions and therapies.

"Letting themselves go during care" - exploring patient autonomy during co-designed intrapartum care in a Beninese maternity ward.

BACKGROUND: Patient autonomy is central to the provision of respectful maternity care. Enabling women to make decisions free of discrimination and coercion, and respecting their privacy and confidentiality can contribute to positive childbirth experiences. This study aimed to deepen the understanding of how patient autonomy is reflected through social practices during intrapartum care in Benin. METHODS: Semi-structured interviews with women and midwives, a focus-group discussion with women's birth companions, and non-participant observations in the delivery room were conducted within the frame of the ALERT research project. This study analysed data through a reflexive thematic analysis approach, in line with Braun and Clarke. RESULTS: We identified two themes and five sub-themes. Patient autonomy was systemically suppressed over the course of birth as a result of the conditions of care provision, various forms of coercion and women's surrendering of their autonomy. Women used other care practices, such as alternative medicine and spiritual care, to counteract experiences of limited autonomy during intrapartum care. CONCLUSIONS: The results pointed to women's experiences of limited patient autonomy and their use of alternative and spiritual care practices to reclaim their patient autonomy. This study identified spiritual autonomy as an emergent dimension of patient autonomy. Increasing women's autonomy during childbirth may improve their experiences of childbirth, and the provision of quality and respectful maternity care.

Four shades of paternalism in doctor-patient communication and their ethical implications.

The present study aims to explore the forms paternalistic communication can take in doctor-patient interactions and how they should be considered from a normative perspective. In contemporary philosophical debate, the problem with paternalism is often perceived as either undermining autonomy (the autonomy problem) or the paternalist viewing their judgment as superior (the superiority problem). In either case, paternalism is problematized mainly in a general, theoretical sense. In contrast, this paper investigates specific doctor-patient encounters, revealing distinct types of paternalistic communication. For this study, I reviewed videorecorded encounters from a Norwegian hospital to detect paternalism-specifically, doctors overriding patients' expressed preferences, presumably to benefit or protect the patients. I identified variations in paternalistic communication styles-termed paternalist modes-which I categorized into four types: the fighter, the advocate, the sympathizer, and the fisher. Drawing on these findings, I aim to nuance the debate on paternalism. Specifically, I argue that each paternalist mode carries its own normative implications and that the autonomy and the superiority problems manifest differently across the modes. Furthermore, by illustrating paternalism in communication through real-life cases, I aim to reach a more comprehensive understanding of what we mean by paternalistic doctors.

Digital medication and patients' right of autonomy in Spain.

The progress the Internet has experienced in recent years has brought about huge changes and social transformation in all aspects of our lives. One such aspect greatly impacted has been our health, where we can talk about the existence of an 'Internet of Medical Things'. Amid this digital drift, we have seen the development of pharmaceutical drugs that provide information to patients and their attending healthcare teams concerning medication, doses ingested, and time of ingestion. These are digital pills or digital medication. In this context, the purpose of my paper is to analyze the ethical and legal impact of digital medication, further analyzing the implications concerning the right of service users to make decisions over their own health in Spain.

Caesarean section on maternal request: a qualitative study of conflicts related to shared decision-making and person-centred care in Sweden.

BACKGROUND: Today, person-centred care is seen as a cornerstone of health policy and practice, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). The aim of this study was to explore Swedish health professionals' perspectives on CSMR and analyse them with regard to potential conflicts that may arise from person-centred care, specifically in relation to shared decision-making. METHODS: A qualitative study using both inductive and deductive content analysis was conducted based on semi-structured interviews. It was based on a purposeful sampling of 12 health professionals: seven obstetricians, three midwives and two neonatologists working at different hospitals in southern and central Sweden. The interviews were recorded either in a telephone call or in a video conference call, and audio files were deleted after transcription. RESULTS: In the interviews, twelve types of expressions (sub-categories) of five types of conflicts (categories) between shared decision-making and CSMR emerged. Most health professionals agreed in principle that women have the right to decide over their own body, but did not believe this included the right to choose surgery without medical indications (patient autonomy). The health professionals also expressed that they had to consider not only the woman's current preferences and health but also her future health, which could be negatively impacted by a CSMR (treatment quality and patient safety). Furthermore, the health professionals did not consider costs in the individual decision, but thought CSMR might lead to crowding-out effects (avoiding treatments that harm others). Although the health professionals emphasised that every CSMR request was addressed individually, they referred to different strategies for avoiding arbitrariness (equality and non-discrimination). Lastly, they described that CSMR entailed a multifaceted decision being individual yet collective, and the use of birth contracts in order to increase a woman's sense of security (an uncomplicated decision-making process). CONCLUSIONS: The complex landscape for handling CSMR in Sweden, arising from a restrictive approach centred on collective and standardised solutions alongside a simultaneous shift towards person-centred care and individual decision-making, was evident in the health professionals' reasoning. Although most health professionals emphasised that the mode of delivery is ultimately a professional decision, they still strived towards shared decision-making through information and support. Given the different views on CSMR, it is of utmost importance for healthcare professionals and women to reach a consensus on how to address this issue and to discuss what patient autonomy and shared decision-making mean in this specific context.

Person-centered care is today a widespread approach, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). This study examines Swedish health professionals' views on CSMR. Interviews with 12 health professionals reveal conflicts between CSMR and key aspects of person-centered care, in particular shared decision-making. While professionals acknowledge women's autonomy, they question CSMR without medical need. Concerns include for example treatment quality and patient safety, and avoiding treatments that harm others. The Swedish context, balancing collective solutions with individualized care, complicates decision-making. Unlike countries with more private healthcare, where CSMR support might be higher, Swedish health professionals emphasize shared decision-making despite viewing the mode of delivery as primarily a professional decision. This study sheds light on the challenges in integrating CSMR into person-centered care frameworks.

Ethics rounds in the ambulance service: a qualitative evaluation.

BACKGROUND: It is a common ethical challenge for ambulance clinicians to care for patients with impaired decision-making capacities while assessing and determining the degree of decision-making ability and considering ethical values. Ambulance clinicians' ethical competence seems to be increasingly important in coping with such varied ethical dilemmas. Ethics rounds is a model designed to promote the development of ethical competence among clinicians. While standard in other contexts, to the best of our knowledge, it has not been applied within the ambulance service context. Thus, the aim of this study was to describe ambulance clinicians' experiences of participating in ethics rounds. METHODS: This was a qualitative descriptive study, evaluating an intervention. Data were collected through sixteen interviews with ambulance clinicians who had participated in an intervention involving ethics rounds. The analysis was performed by use of content analysis. RESULTS: Two themes describe the participants' experiences: (1) Reflecting freely within a given framework, and (2) Being surprised by new insights. The following categories form the basis of the themes; 1a) Gentle guidance by the facilitator, 1b) A comprehensible structure, 2a) New awareness in the face of ethical problems, and 2b) Shared learning through dialogue. CONCLUSION: Incorporating structured ethics rounds seems to create a continuous development in ethical competence that may improve the quality of care in the ambulance service. Structured guidance and facilitated group reflections offer ambulance clinicians opportunities for both personal and professional development. An important prerequisite for the development of ethical competence is a well-educated facilitator. Consequently, this type of ethics rounds may be considered a useful pedagogical model for the development of ethical competence in the ambulance service.

"The great escape": how an incident of elopement gave rise to trauma informed palliative care for a patient experiencing multiple disadvantage.

BACKGROUND: This case report from Scotland, UK illustrates how unresolved traumatic experiences across the life course can affect a patient's engagement with palliative care and offers insights into the flexibility and adaptations necessary for taking a trauma informed approach to care for an individual experiencing multiple disadvantage. Trauma informed care is a cornerstone in the pursuit of equitable palliative care, particularly for those facing multiple disadvantage, as it acknowledges the impact of past traumas on current healthcare experiences, and fosters an environment of understanding, acceptance, and tailored support to alleviate suffering in the final stages of life. CASE PRESENTATION: "M" was a veteran with a history of homelessness, living with end stage anal cancer and symptoms consistent with post-traumatic stress disorder, although he never received a formal diagnosis. M exhibited complex behaviours perceived to be related to his history of trauma, including his decision to elope from the hospice, reluctance to accept personal care from nurses, and unpredictability. These behaviours posed a significant challenge to his palliative care team, both in the hospice and at home. An individualised and flexible approach to care delivery was eventually adopted, which included a 'safety-netting' approach and care delivery outside of the hospice. M was ultimately supported to remain at home until a week before he died. CONCLUSION: M's case underscores the necessity of adopting a trauma informed approach to palliative care, particularly for patients with a history of trauma and multiple disadvantage. The case highlights the importance of understanding and respecting a patient's past traumas, promoting safety and autonomy, and ensuring flexibility in care delivery.

Ethical and legal challenges of medical AI on informed consent: China as an example.

The escalating integration of Artificial Intelligence (AI) in clinical settings carries profound implications for the doctrine of informed consent, presenting challenges that necessitate immediate attention. China, in its advancement in the deployment of medical AI, is proactively engaging in the formulation of legal and ethical regulations. This paper takes China as an example to undertake a theoretical examination rooted in the principles of medical ethics and legal norms, analyzing informed consent and medical AI through relevant literature data. The study reveals that medical AI poses fundamental challenges to the accuracy, adequacy, and objectivity of information disclosed by doctors, alongside impacting patient competency and willingness to give consent. To enhance adherence to informed consent rules in the context of medical AI, this paper advocates for a shift towards a patient-centric information disclosure standard, the restructuring of medical liability rules, the augmentation of professional training, and the advancement of public understanding through educational initiatives.

[Advance directives and mental disorders: a practice recommendation of the Commission for Ethics and Law of the German Association for Psychiatry, Psychotherapy and Psychosomatics]. / Patientenverfügungen und psychische Erkrankung ­ eine Praxisempfehlung der Kommission Ethik und Recht der DGPPN.

BACKGROUND: Since the creation of legal requirements for advance directives by the legislator in 2009, special aspects of their application in the treatment of people with mental illnesses have been discussed. GOAL OF THE PAPER: Important questions on dealing with advance directives in everyday life will be answered in a practice-oriented manner. RESULTS: Among other things, this document answers the question of the conditions under which a patient can refuse or consent to hospitalization and treatment in advance, and in particular how to deal with advance directives whose implementation would also affect the rights of third parties. The German Association for Psychiatry, Psychotherapy and Psychosomatics (DGPPN) has addressed these and other questions in the present document and added practical advice on how to formulate advance directives for people with mental illnesses and how to deal with psychiatric advance directives. DISCUSSION: The DGPPN has developed an advance directive for the area of mental health and published it on its website together with detailed explanations. With the help of this advance directive, people can decide on their treatment in phases of incapacity to consent in the context of a mental crisis or illness.

"But I Have a Pacer There Is No Point in Engaging in Hypothetical Scenarios": A Non-Imminently Dying Patient's Request for Pacemaker Deactivation.

In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker-a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying.

What factors influence patient autonomy in healthcare decision-making? A systematic review of studies from the Global South.

BACKGROUND: The principle of respect for autonomy (PRA) is a central tenet of bioethics. In the quest for a global bioethics, it is pertinent to ask whether this principle can be applied as it is to cultures and societies that are devoid of the Western sociopolitical historical pressures that led to its emergence. Relational autonomists have argued for a more inclusive approach to patient autonomy which takes into account factors such as interdependency and social relations. However, at the outset of any relational approach, it is necessary to identify underlying factors that influence patient autonomy in non-Western cultures. OBJECTIVE: To conduct a review of the literature to uncover the mechanisms through which social, cultural, and religious factors influence and impact the application of the PRA in healthcare decision-making in non-Western cultures and societies. METHODS: We conducted a systematic review through a comprehensive search of three major electronic databases of biomedical sciences. Returned citations were imported to Covidence, full texts were assessed for eligibility, included articles were thoroughly reviewed and data was synthesized. PRISMA guidelines were followed. RESULTS: Our search retrieved 590 non-duplicate results, 50 of which were included after screening and full-text eligibility checks. The included studies were predominantly qualitative in nature, with few quantitative, mixed-methods, and review studies included. Our synthesis of data identified nine key factors that influenced patients' autonomous decision-making through cultural, social, religious, or intersectional pathways. CONCLUSION: Two main conclusions emerge from this review. Firstly, there is a notable dearth of bioethical research examining the influence of diverse factors on patients' inclination towards different conceptions of autonomy. Secondly, the analysis of prevalent collectivist cultures and deference of autonomy adds value to the solution-oriented relational autonomy debate. This raises questions regarding how decision-making can be truly autonomous in the presence of such large-scale factors, warranting further attention.

Sharing a medical decision.

During the last decades, shared decision making (SDM) has become a very popular model for the physician-patient relationship. SDM can refer to a process (making a decision in a shared way) and a product (making a shared decision). In the literature, by far most attention is devoted to the process. In this paper, I investigate the product, wondering what is involved by a medical decision being shared. I argue that the degree to which a decision to implement a medical alternative is shared should be determined by taking into account six considerations: (i) how the physician and the patient rank that alternative, (ii) the individual preference scores the physician and the patient (would) assign to that alternative, (iii) the similarity of the preference scores, (iv) the similarity of the rankings, (v) the total concession size, and (vi) the similarity of the concession sizes. I explain why shared medical decisions are valuable, and sketch implications of the analysis for the physician-patient relationship.

Patient autonomy in the era of the sustainability crisis.

In the realm of medical ethics, the foundational principle of respecting patient autonomy holds significant importance, often emerging as a central concern in numerous ethically complex cases, as authorizing medical assistance in dying or healthy limb amputation on patient request. Even though advocates for either alternative regularly utilize prima facie principles to resolve ethical dilemmas, the interplay between these principles is often the core of the theoretical frameworks. As the ramifications of the sustainability crisis become increasingly evident, there is a growing need to integrate awareness for sustainability into medical decision-making, thus reintroducing potential conflict with patient autonomy. The contention of this study is that the ethical standards established in the 20th century may not adequately address the challenges that have arisen in the 21st century. The author suggests an advanced perception of patient autonomy that prioritizes fostering patients' knowledge, self-awareness, and sense of responsibility, going beyond a sole focus on their intrinsic values. Empowering patients could serve as a tool to align patient autonomy, beneficence, and the aim to reduce resource consumption.

Learning from disability studies to introduce the role of the individual to naturalistic accounts of disease.

Disability studies have been successfully focusing on individuals' lived experiences, the personalization of goals, and the constitution of the individual in defining disease and restructuring public understandings of disability. Although they had a strong influence in the policy making and medical modeling of disease, their framework has not been translated to traditional naturalistic accounts of disease. I will argue that, using new developments in evolutionary biology (Extended Evolutionary Synthesis [EES] about questions of proper function) and behavioral ecology (Niche conformance and construction about the questions of reference classes in biostatistics accounts), the main elements of the framework of disability studies can be used to represent life histories at the conceptual level of the two main "non-normative" accounts of disease. I chose these accounts since they are related to medicine in a more descriptive way. The success of the practical aspects of disability studies this way will be communicated without causing injustice to the individual since they will represent the individuality of the patient in two main naturalistic accounts of disease: the biostatistical account and the evolutionary functional account. Although most accounts criticizing the concept of disease as value-laden do not supply a positive element, disability studies can supply a good point for descriptive extension of the concept through inclusion of epistemic agency.

Respecting patient autonomy: legal and professional considerations.

In this month's Policy column, Iwan Dowie explores patient autonomy - a concept largely embedded within the community nursing setting. Through legal cases, a history of laws relating to patient autonomy are presented and its implications for community nurses discussed.

The impact of birth settings on pregnancy outcomes in the United States.

In the United States, 98.3% of patients give birth in hospitals, 1.1% give birth at home, and 0.5% give birth in freestanding birth centers. This review investigated the impact of birth settings on birth outcomes in the United States. Presently, there are insufficient data to evaluate levels of maternal mortality and severe morbidity according to place of birth. Out-of-hospital births are associated with fewer interventions such as episiotomies, epidural anesthesia, operative deliveries, and cesarean deliveries. When compared with hospital births, there are increased rates of avoidable adverse perinatal outcomes in out-of-hospital births in the United States, both for those with and without risk factors. In one recent study, the neonatal mortality rates were significantly elevated for all planned home births: 13.66 per 10,000 live births (242/177,156; odds ratio, 4.19; 95% confidence interval, 3.62-4.84; P<.0001) vs 3.27 per 10,000 live births for in-hospital Certified Nurse-Midwife-attended births (745/2,280,044; odds ratio, 1). These differences increased further when patients were stratified by recognized risk factors such as breech presentation, multiple gestations, nulliparity, advanced maternal age, and postterm pregnancy. Causes of the increased perinatal morbidity and mortality include deliveries of patients with increased risks, absence of standardized criteria to exclude high-risk deliveries, and that most midwives attending out-of-hospital births in the United States do not meet the gold standard for midwifery regulation, the International Confederation of Midwives' Global Standards for Midwifery Education. As part of the informed consent process, pregnant patients interested in out-of-hospital births should be informed of its increased perinatal risks. Hospital births should be supported for all patients, especially those with increased risks.

Desired decision-making role and treatment satisfaction among trans people during medical transition: results from the ENIGI follow-up study.

BACKGROUND: Shared decision making (SDM) is particularly important in transition-related medical interventions (TRMIs) given the nature of treatment and history of gatekeeping in transgender health care. Yet few studies have investigated trans people's desired decision-making role within TRMI and factors that influence these desires. AIMS: The study investigated trans people's desired level of decision making during medical transition as well as possible sociodemographic predictors and correlations between decision-making desires and satisfaction with treatment. METHODS: Data were collected from a clinical sample from 3 trans health care centers, as part of the larger ENIGI study. The data consisted of 568 trans individuals (60.2% assigned male at birth) 20 to 82 years of age (mean age = 38.58 years) who took part in the study 4 to 6 years after initial clinical contact. Binary logistic regressions were conducted to determine whether independent variables predicted group membership in decision-making role subgroups while a Spearman rank-order correlation was conducted to determine the relationship between desired decision-making involvement and satisfaction with care. OUTCOMES: Main measures were desired decision-making role, satisfaction with treatment, age, education level, country of residence, treatment status, individual treatment progress score (ITPS), gender identity, and sex assigned at birth. RESULTS: The vast majority of participants wanted to make medical decisions themselves. Age, education level, country of residence, treatment status, gender identity, and sex assigned at birth showed no significant effects in desired level of decision making, while the ITPS neared significance. Satisfaction with treatment was overall very high. For participants assigned male at birth, desire for a more active role in decision making was negatively correlated with satisfaction of labia surgery. CLINICAL IMPLICATIONS: A desired decision-making role cannot be predicted based on the trans person's sociodemographic characteristics. More involvement from health professionals addressing medical information and education obligations may be needed when offering surgical construction of labia to individuals assigned male at birth. STRENGTHS AND LIMITATIONS: This study builds on the few existing analyses of desired levels of decision-making role among trans people during transition. It is the first to investigate the role of education level and treatment status/ITPS on the desire of decision-making role. Gender identity and influence of nonbinary identity were not investigated for treatment satisfaction as these items were presented based on sex assigned at birth. CONCLUSION: This study highlights that trans people in 3 European trans health care centers during medical transition desire a more active role in decision making. Satisfaction with treatment received was overall very high.