Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES); Pós-graduação em Anestesiologia - FMB; Apesar do reconhecimento da importância da participação do doente na tomada de decisões médicas, apenas recentemente os profissionais de saúde vem se conscientizando da necessidade de informá-los sobre as opções de tratamento e da necessidade de encorajá-los a participar de tais decisões. É escasso o conhecimento sobre o processo de tomada de decisão, sobre as preferências dos pacientes e de como melhorar a comunicação com pacientes, cuidadores e familiares. Os objetivos do presente estudo foram: avaliar as possíveis diferenças entre as preferências no processo de tomada de decisão pelos pacientes, cuidadores e médicos; e avaliar se as preferências dos pacientes durante a tomada de decisões estão relacionadas às variações demográfico-sócio-econômico-culturais. Foi elaborado protocolo de pesquisa, utilizando-se instrumentos validados, para ser empregado nas entrevistas com doentes, cuidadores e médicos. Os pacientes preferem compartilhar a decisão de tratamento com a família em 57,5% dos casos e preferem que o médico decida seu tratamento em 62% das vezes. Há concordância em informar o diagnóstico para 94...

OBJECTIVE: To assess whether patient preferences regarding information and participation in decision-making about treatment options are related to patient characteristics and the context of the decision. Other studies have compared decision-making preferences in patients with cancer and healthy subjects, or in different contexts among patients in the same group. This study combined these designs. DESIGN: Questionnaire completed by the subjects. SETTING: Outpatient clinic of a university hospital. PARTICIPANTS: A consecutive sample of 55 patients with cancer treated at a radiotherapy clinic, 53 persons accompanying them, a consecutive sample of 53 patients visiting a surgical outpatient clinic for a nonmalignant condition and 36 persons accompanying them. MAIN MEASURES: Preferences regarding information and participation in decision-making in general and with respect to 4 vignettes that described different diseases of varying seriousness, varying treatment options and side effects. RESULTS: Older patients and men were more likely to let the physician make decisions regarding their treatment. Patients, as compared with nonpatients (their companions), were more likely to prefer a passive role regarding treatment decisions. No differences were seen between patients with cancer and patients with nonmalignant conditions. Also...

We designed this study to determine whether patients with early localized prostate cancer prefer surgical intervention over watchful waiting, which aspects of the 2 management strategies influence patient preferences, and whether there are patient characteristics that predict their preferences for 1 strategy over the other. Structured interviews were used with 140 male patients seen consecutively at a university-based Department of Veterans Affairs Medical Center outpatient clinic. The mean age of the patients was 66.3 years. Of the 140 patients, 53% preferred surgical treatment, 42% preferred observation, 4% preferred that their physician make the decision, and 1% preferred radiotherapy. Of 74 patients selecting surgical intervention, 92% (68) reported that the possibility of complete tumor removal was the strongest factor influencing their decision. Of those selecting observation, 80% (47/59) reported being most influenced by the complications of an operation. Older patients were significantly (P < .002) more likely to prefer expectant management. We conclude that tumor excision is an important factor influencing patient preferences for treatment, irrespective of survival benefits. This factor should be considered when designing approaches to providing information to patients about alternative treatments.

We measured patient preferences for colorectal cancer (CRC) screening strategies and actual receipt of alternative CRC screening tests among an urban minority sample participating in an intervention study. The fecal occult blood test was the most preferred test, reportedly owing to its convenience and the noninvasive nature. For individuals who obtained a test that was other than their stated preference (41.1%), reasons for this discordance may be due to physician preferences that override patient preferences.

BACKGROUND—Lower patient preferences for autonomy in management decision making during asthma exacerbations have been associated with an increased risk for future hospital admissions. We sought to examine patient preferences for asthma self-management autonomy, and the clinical and psychosocial factors associated with autonomy preferences.
METHODS—A cross sectional observational study was performed with data collected between June 1995 and December 1997 of 212 adult patients with moderate to severe asthma managed, at least in part, at two teaching hospitals. Subjects completed a survey of autonomy preferences, quality of life, clinical morbidity and health service use, asthma knowledge, self-efficacy, coping styles, and psychosocial measures.
RESULTS—Patients preferred clinicians to assume the major role in most decision making about their management. However, patients wished to remain in control in choosing when to seek care and wanted to share decisions regarding initiating changes in medications during a moderate exacerbation. Multiple regression analysis showed that concerns about adverse effects of medications, education level, an active coping style, perceptions of the propensity of physicians to involve them in treatment decision making...

Patients are an important but overlooked participant in health information management. Patients serve as a source of self-monitoring data and for self-report of essential judgments such as preference for treatment and preferences for clinical outcomes. As the deliberations regarding the Computer-Based Patient Record initiative continue, decisions must be made about what patient-specific information will be entered in the record. In consideration of the mounting evidence that patient preferences represent an essential component in many health care decisions, it is timely to advocate for including patient preferences in the patient record. This represents one aspect of the patient role in health care information management.

Deciding when and how to incorporate patient preferences regarding mode of delivery is challenging for both obstetric providers and policymakers. An analysis of current guidelines in four clinical scenarios (prior cesarean, twin delivery, breech presentation, and maternal request for cesarean) indicates that some guidelines are highly prescriptive, while others are more flexible, based on physicians’ discretion or (less frequently) patient preferences, without consistency or explicit rationale for when such flexibility is permissible, advisable, or obligatory. While patient choice advocates have called for more patient-responsive guidelines, concerns have also been raised, especially in the context of discussions of cesarean delivery on maternal request, about the dangers of unfettered patient preference-driven clinical decisions. In this article, we outline a framework for the responsible inclusion of patient preferences into decision making regarding approach to delivery. We conclude, using this framework, that more explicit incorporation of patient preferences are called for in the first three scenarios, and indicate why expanding access to cesarean delivery on maternal request is more complicated and would require more data and further consideration.

The seventh column on Evidence-Based Behavioral Medicine synopsizes a systematic review by Chewning and colleagues (Pat Educ Couns 86:9–18, 2012) on patient preferences for shared decision-making regarding treatment and screening. A total of 115 studies were included in the final analyses. In 63 % of studies, a majority of patients preferred sharing decisions with their primary care physician, as opposed to delegating health decisions to their provider. A time trend appeared such that in studies published more recently, a greater percentage of patients, particularly cancer patients, preferred sharing decisions. Further research should seek to better understand how the decision making of specific patient populations is influenced by life course changes and secular trends. Longitudinal studies can help to elucidate how patient decision-making preferences evolve over the course of illness and health status changes in different medical conditions.

Inflammatory bowel disease (IBD), consisting of both Crohn’s disease (CD) and ulcerative colitis (UC), are chronic inflammatory conditions of the intestinal tract. As there is no cure for either CD or UC, these patients face numerous treatment decisions regarding their disease. The aims of this review are to evaluate literature regarding quantitative studies of patient preferences in therapy for IBD with a focus on the emerging technique of stated preference and its application in IBD. Numerous simple survey-based studies have been performed evaluating IBD patients’ preferences for medication frequency, mode of delivery, potential adverse events etc., as well as variations in these preferences. These studies are limited, however, as they are purely descriptive in nature with limited quantitative information on the relative value of treatment alternatives. Time trade-off and standard gamble studies have also been utilized to quantify patient utility for various treatment options or outcomes. However, these types of studies suffer from inaccurate assumptions regarding patient choice behavior. Stated preference is an emerging robust methodology increasingly utilized in health care that can determine the relative utility for a therapy option as well as its specific attributes (such as efficacy or adverse side effects). Stated preference techniques have begun to be applied in IBD and offer an innovative way of examining the numerous therapy options these patients and their providers face.

Participatory medicine refers to the equal participation of patients and interdisciplinary healthcare team (IHT) members as part of care delivery. Facilitating workflow execution is a significant challenge for participatory medicine because of the need to integrate IHT members into a common workflow. A further challenge is that patient preferences should be considered when executing a workflow. To date there is limited research on supporting patient workflow as part of participatory medicine practices. To address that shortcoming we used a two-phase approach to develop a framework for participatory medicine that integrates different IHT members and workflows including the incorporation of patient preferences about care delivery options. Our framework uses a domain ontology to define the patient, IHT concepts and relations, as well as a workflow for operationalizing participatory medicine via an IHT. Proof of concept of the proposed framework is illustrated with a palliative care pain management case study.

Poor medication adherence is a major problem in chronic diseases such as osteoporosis that may partially be due to unaddressed patient values and preferences. Data on patient preferences could help clinicians to improve medication adherence and could also be useful in policy decisions and guideline development. This paper aims to identify literature reporting on the preferences of patients for osteoporosis drug medications. Several methods have been used to elicit patient preferences for medications and their characteristics including qualitative research, survey with ranking/rating exercises, discrete-choice experiments and clinical studies (crossover designs, open-label study). All these studies revealed that osteoporotic patients have preferences for medications and their attributes, in particular for less-frequent dosing regimens. Interestingly, variations in the preferences of patients were observed in most studies, suggesting the importance to take into account individual preference in decision-making to improve osteoporosis care.

BACKGROUND: Lower patient preferences for autonomy in management decision making during asthma exacerbations have been associated with an increased risk for future hospital admissions. We sought to examine patient preferences for asthma self-management autonomy, and the clinical and psychosocial factors associated with autonomy preferences. METHODS: A cross sectional observational study was performed with data collected between June 1995 and December 1997 of 212 adult patients with moderate to severe asthma managed, at least in part, at two teaching hospitals. Subjects completed a survey of autonomy preferences, quality of life, clinical morbidity and health service use, asthma knowledge, self-efficacy, coping styles, and psychosocial measures. RESULTS: Patients preferred clinicians to assume the major role in most decision making about their management. However, patients wished to remain in control in choosing when to seek care and wanted to share decisions regarding initiating changes in medications during a moderate exacerbation. Multiple regression analysis showed that concerns about adverse effects of medications, education level, an active coping style, perceptions of the propensity of physicians to involve them in treatment decision making...

Background:  Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do-not-resuscitate or do-not-resuscitate (DNR) decision], but there is little analysis of patient perspectives. Objective:  Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. Design and participants:  Discursive analysis of qualitative data gathered during semi-structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. Results:  Participants’ descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision-making process. Participants’ endorsement of physicians as decision makers rested upon physicians’ enactment of the rational...

BACKGROUND Beyond examining their overall cost-effectiveness and mechanisms of effect, it is important to understand patient preferences for the delivery of different modes of chronic heart failure management programs (CHF-MPs). We elicited patient preferences around the characteristics and willingness-to-pay (WTP) for a clinic or home-based CHF-MP. METHODOLOGY/PRINCIPAL FINDINGS A Discrete Choice Experiment was completed by a sub-set of patients (n = 91) enrolled in the WHICH? trial comparing home versus clinic-based CHF-MP. Participants provided 5 choices between hypothetical clinic and home-based programs varying by frequency of nurse consultations, nurse continuity, patient costs, and availability of telephone or education support. Participants (aged 71±13 yrs, 72.5% male, 25.3% NYHA class III/IV) displayed two distinct preference classes. A latent class model of the choice data indicated 56% of participants preferred clinic delivery, access to group CHF education classes, and lower cost programs (p<0.05). The remainder preferred home-based CHF-MPs, monthly rather than weekly visits, and access to a phone advice service (p<0.05). Continuity of nurse contact was consistently important. No significant association was observed between program preference and participant allocation in the parent trial. WTP was estimated from the model and a dichotomous bidding technique. For those preferring clinic...

Background: Early diagnosis and improved treatment outcomes have increased breast cancer survival rates that, in turn, have led to increased numbers of women undergoing follow-up after completion of primary treatment. The current workload growth is unsustainable for breast cancer specialists who also provide care for women newly diagnosed or with a recurrence. Appropriate and acceptable follow-up care is important; yet, currently we know little about patient preferences. The aim of this study was to explore the preferences of Australian breast cancer survivors for alternative modes of delivery of follow-up services. Methods: A self-administered questionnaire (online or paper) was developed. The questionnaire contained a discrete choice experiment (DCE) designed to explore patient preferences with respect to provider, location, frequency and method of delivery of routine follow-up care in years 3, 4 and 5 after diagnosis, as well as the perceived value of ‘drop-in’ clinics providing additional support. Participants were recruited throughout Australia over a 6-month period from May to October 2012. Preference scores and choice probabilities were used to rank the top 10 most preferred follow-up scenarios for respondents. Results: A total of 836 women participated in the study...

While there is an increased emphasis on shared decision making between patients and clinicians, there has been little research on decision support systems (DSSs) to assist clinicians in eliciting and integrating patient preferences in clinical care and evaluating their effect on patient outcomes. This paper presents the results of nurses' use of CHOICE, a palm-top based DSS for preference-based care planning that assists nurses in eliciting patient preferences for functional performance at the bedside and to select care priorities consistent with patient preferences. Nurses' use of CHOICE changed nursing care to be more consistent with patient preferences and improved patients' preference achievement. The study demonstrated that the use of computer-based decision support for preference-based care planning can improve patient-centered care and patient outcomes.

If nurses, physicians, and health care planners knew more about patients' health-related preferences, care would most likely be cheaper, more effective, and closer to the individuals' desires. In order for patient preferences to be effectively used in the delivery of health care, it is important that patients be able to formulate and express preferences, that these judgments be made known to the clinician at the time of care, and that these statements meaningfully inform care activities. Decision theory and health informatics offer promising strategies for eliciting subjective values and making them accessible in a clinical encounter in a manner that drives health choices. Computer-based elicitation and reporting tools are proving acceptable to patients and clinicians alike. It is time for the informatics community to turn their attention toward building computer-based applications that support clinicians in the complex cognitive process of integrating patient preferences with scientific knowledge, clinical practice guidelines, and the realities of contemporary health care.

While there is an increasing emphasis on patient empowerment and shared decision making, evidence suggests that many patients do not wish to be involved in decisions about their own care. Previous research has found patient preferences for involvement in decision making to vary with age, socioeconomic status, illness experience, and the gravity of the decision. Furthermore, there is evidence that certain patients may experience disutility from being involved in decision making about the treatment of their health problems. We discuss the implications of these findings for the use of decision support tools and the difficulties of targeting their use towards those patients most likely to benefit. We argue that patients may be ill informed about what participation in decision making actually entails and unaware of the benefits they stand to gain by articulating their preferences to their clinician. Furthermore, clinicians are not good at accurately assessing patients' preferences, while patients may have unrealistic expectations about their clinician's ability to "know what is best" for them. Further research is required to understand variations in patients' preferences for information and involvement in decision making, and the factors that influence them.

While preference elicitation techniques have been effective in supporting patients in their abilities to make decisions consistent with their preferences, little is known about whether information about patient preferences affects clinicians in clinical decision making and improves patient outcomes. This paper presents a study that tested the effect of eliciting elderly patients' preferences for self-care capability and providing this information to nurses in clinical practice on nurses' care priorities and patient outcomes. The study showed that information about patient preferences changed nurses' care priorities to be more consistent with patient preferences and improved patient outcomes of preference achievement and physical functioning. These results emphasize the importance of continuing to refine strategies for eliciting and integrating patient preferences into patient care as a means to improve patient outcomes.

Introduction and objective: Patient preferences with respect to available therapies must be taken into account if the quality of care of patients with Crohn's disease is to be improved. The objective was to develop the IMPLICA preferences questionnaire for Crohn's disease patients treated with biological therapies. Methods: As per standard methodology, the questionnaire was developed in Spanish language, in five stages: 1. Literature review to identify attributes related to biological therapies in Crohn's disease; 2. Expert meeting to identify attributes most relevant for patients; 3. Scoring of the most relevant attributes and generation of scenarios; 4. Patient comprehension test for selection and validation of scenarios; and 5. Final list of scenarios and qualitative evaluation of those most accepted by patients. Results: Three attributes related to various characteristics of biological treatments were selected: route of administration, place/duration of administration and person administering the treatment; a combination of them produced seven possible scenarios. The comprehension test gave rise to significant modifications in the instructions, text of the scenarios and response categories. Conclusion: IMPLICA is the first questionnaire to evaluate treatment preferences of Crohn's disease patients receiving biological therapies. This questionnaire facilitates patient's selection of the most appropriate real world treatment option and...