Preferred Role In Decision Research Articles

Counselee participation in follow-up breast cancer genetic counselling visits and associations with achievement of the preferred role, cognitive outcomes, risk perception alignment and perceived personal control

The purpose of the study was to assess the counselee participation in the follow-up visits, compared to the first visits, for breast cancer genetic counselling and to explore associations with counselees' achievement of their preferred role in decision making, information recall, knowledge, risk perception alignment and perceived personal control.First and follow-up visits for breast cancer genetic counselling of 96 counselees of a Dutch genetics center were videotaped (2008–2010). Counselees completed questionnaires before counselling (T1), after the follow-up visit (T2) and one year after the follow-up visit (T3). Consultations were rated with the Roter Interaction Analysis System (RIAS). Counselee participation was measured as the percentage of counselee utterances, the percentage of counselee questions and the interactivity (number of turns per minute).Follow-up visits had higher levels of counselee participation than first visits as assessed by the percentage of counselee talk, the interactivity and counselee questions. More counselee talk in the follow-up visit was related to higher achievement of the preferred role (T2) and higher perceived personal control (T3). Higher interactivity in the follow-up visit was related to lower achievement of the preferred role in decision making and lower information recall (T2). There were no significant associations with the percentage of questions asked and none of the participation measures was related to knowledge, risk perception alignment and perceived personal control (T2).In line with the interviewing admonishment ‘talk less and listen more’, the only assessment of counselee participation associated to better outcomes is the percentage of counselee talk. High interactivity might be associated with lower recall in breast cancer genetic counselees who are generally highly educated. However, this study was limited by a small sample size and a heterogeneous group of counselees. Research is needed on the interactions causing interactivity and its relationships with involvement in decision making and recall.

Older adults newly diagnosed with symptomatic myeloma and treatment decision making.

To describe the preferences for participation in decision making of older adult patients newly diagnosed with symptomatic myeloma and to explore the association between sociodemographic variables and decisional role preferences. Descriptive, cross-sectional design. Participants' homes and two large academic cancer centers in Seattle, WA, and Chicago, IL. A convenience sample of 20 older adults (60 years of age and older) with symptomatic myeloma diagnosed within the past six months. The Control Preferences Scale was administered followed by an in-person, one-time, semistructured interview. Role preferences for participation in treatment decision making, age, gender, race, work status, personal relationship status, education, and income. Fifty-five percent of the participants preferred a shared role with the physician and 40% preferred to make the decisions after seriously considering the opinion of their physicians. Only one participant preferred to leave the decision to the doctor, as long as the doctor considered the patient's treatment preferences. The study findings indicate that older adults newly diagnosed with myeloma want to participate in treatment decision making. Oncology nurses must respect the patient's desired role preference and oncology clinicians must listen to the patient and allow him or her to be autonomous in making treatment decisions. Nurses and other oncology clinicians can elicit a patient's preferred level of participation in treatment decision making. Oncology nurses can make sure patients receive disease- and treatment-related information, encourage them to express their decisional role preference to the physician, develop a culture of mutual respect and value their desire for autonomy for treatment decision making, acknowledge that the right to make a treatment choice belongs to the patient, and provide support during treatment decision making throughout the care continuum.

Psychiatric patients’ preferences and experiences in clinical decision-making: Examining concordance and correlates of patients’ preferences

ObjectiveTo assess the concordance between patients’ preferred role in clinical decision-making and the role they usually experience in their psychiatric consultations and to analyze the influence of socio-demographic, clinical and personality characteristics on patients’ preferences. Methods677 consecutive psychiatric outpatients were invited to participate in a cross-sectional survey and 507 accepted. Patients completed Control Preference Scale twice consecutively before consultation, one for their preferences of participation and another for the style they usually experienced until then, and locus of control and self-efficacy scales. ResultsSixty-three percent of psychiatric outpatients preferred a collaborative role in decision-making, 35% preferred a passive role and only a 2% an active one. A low concordance for preferred and experienced participation in medical decision-making was registered, with more than a half of patients wanting a more active role than they actually had. Age and doctors’ health locus of control orientation were found to be the best correlates for participation preferences, while age and gender were for experienced. Psychiatric diagnoses registered significant differences in patients’ preferences of participation but no concerning experiences. ConclusionThe limited concordance between preferred and experienced roles in psychiatric patients is indicative that clinicians need to raise their sensitivity regarding patient's participation. Practice ImplicationsThe assessment of patient's attribution style should be useful for psychiatrist to set objectives and priority in the communication with their patients.

Optimizing Patient Autonomy in Amyotrophic Lateral Sclerosis: Inclusive Decision-Making in Multidisciplinary Care

and may impede the timing and quality of their decisions. Several interventions for ALS care, including nutrition, hydration and respiratory support, are contingent on well-timed implementation [5,6]. However, optimal timing of symptom management may be at odds with patients’ readiness to consider these complex interventions. Patients and families need time to come to terms with their changing situation before they can fully participate in decision-making. Reactions to the diagnosis can have an influence on patients’ willingness to engage with healthcare services [7] and their preferred role in decisionmaking. Desire for autonomy is an individual choice, reflecting patients’ attitudes to life, personal circumstances and healthcare experiences [7]. Patients and families are confronted by escalating degeneration and loss, over which they have no control. Autonomy over choices of symptom management and quality of life may become a way for patients to exert control over their continually changing situation [8]. Three aspects of ALS service delivery have been found to facilitate patient autonomy in decision-making: access to specialized ALS multidisciplinary care [7];

A multicenter survey of Hispanic caregiver preferences for patient decision control in the United States and Latin America

Background: Understanding family caregivers’ decisional role preferences is important for communication, quality of care, and patient and family satisfaction. The family caregiver has an important role in a patient’s decisional role preferences. There are limited studies on family caregivers’ preferences of the patient’s decision control at the end of life among Hispanics. Aims: To identify Hispanic caregivers’ preferences of the decision control of patients with advanced cancer and to compare the preferences of caregivers in Hispanic Latin American and Hispanic American caregivers. Design: We surveyed patients and their family caregivers referred to outpatient palliative care clinics in the United States, Chile, Argentina, and Guatemala. Caregiver preferences of patient’s decision control were evaluated using the Control Preference Scale. Caregivers’ and patients’ sociodemographic variables, patient performance status, and Hispanic American patient acculturation level were also collected. Participants: A total of 387 caregivers were surveyed: 100 (26%) in Chile, 99 (26%) in Argentina, 97 (25%) in Guatemala, and 91 (24%) in the United States. The median age was 56 years, and 59% were female. Results: Caregiver preference of patient’s decision control was passive, shared, and active for 10 (11%), 45 (52%), and 32 (37%) Hispanic American caregivers and 54 (19%), 178 (62%), and 55 (19%) Hispanic Latin American caregivers (p = 0.0023), respectively. Caregiver acculturation level did not affect the preferences of the Hispanic American sample (p = 0.60). Conclusions: Most Hispanic family caregivers preferred the patient to make shared decisions. Hispanic Latin American caregivers more frequently preferred patients to assume a passive decisional role. Acculturation did not influence the preferences of Hispanic American caregivers.

Does young adults’ preferred role in decision making about health, money, and career depend on their advisors’ leadership skills?

Few empirical data exist on how decision making about health differs from that in other crucial life domains with less threatening consequences. To shed light on this issue we conducted a study with 175 young adults (average age 19 years). We presented the participants with scenarios involving advisors who provided assistance in making decisions about health, money, and career. For each scenario, participants were asked to what extent they wanted the advisor to exhibit several leadership styles and competencies and what role (active, collaborative, or passive) they preferred to play when making decisions. Results show that decision making about health is distinct from that in the other domains in three ways. First, most of the participants preferred to delegate decision making about their health to their physician, whereas they were willing to collaborate or play an active role in decision making about their career or money. Second, the competencies and leadership style preferred for the physician differed substantially from those desired for advisors in the other two domains: Participants expected physicians to show more transformational leadership--the style that is most effective in a wide range of environments--than those who provide advice about financial investments or career. Finally, participants' willingness to share medical decision making with their physician was tied to how strongly they preferred that the physician shows an effective leadership style. In contrast, motivation to participate in decision making in the other domains was not related to preferences regarding advisors' leadership style or competencies. Our results have implications for medical practice as they suggest that physicians are expected to have superior leadership skills compared to those who provide assistance in other important areas of life.

Physician, Patient, and Contextual Factors Affecting Treatment Decisions in Older Adults With Cancer and Models of Decision Making: A Literature Review

To review physician, patient, and contextual factors that affect treatment decision making in older adults diagnosed with cancer, and to relate those factors to theoretical models of decision making. PubMed (1966 to April 2010), PsycINFO (1967 to April 2010) and CINAHL® (1982 to April 2010) databases were searched to access relevant medical, psychological, and nursing literature. Physician factors in treatment decisions included physician's personal beliefs and values, medical expertise, practice type, perception of lowered life expectancy, medical factors, power, and communication style. Patient factors included personal beliefs and values, ethnicity, decisional control preferences, previous health-related experience, perception of the decision-making process, and personal factors. Contextual factors included availability of caregiver, insurance, financial status, and geographical barrier. A diverse group of factors were identified, which are likely to form a unique framework to understand clinical decision making and plan future investigations in older adult patient populations. Using longitudinal and prospective designs to examine the real-time interplay of patient, physician, and contextual factors will enable a better understanding of how those divergent factors influence actual treatment decisions. Oncology nurses can advocate autonomous (patient-driven), shared, or family-controlled treatment decisions, depending on an older patient's decisional role preference. Nurses can support patient autonomy during treatment decision making by coaching patients to engage in discussion of various evidence-based treatment options and a comprehensive discussion of the probability of success for each option with specialist providers. Oncology nurses may be able to promote treatment decisions that are consistent with a patient's personal preferences and values, with strong consideration of the patient's personal contexts.

Parents' Roles in Decision Making for Children With Cancer in the First Year of Cancer Treatment

To evaluate the extent to which parents of children with cancer are involved in decision making in the ways they prefer during the first year of treatment. We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) in their first year of cancer treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. We measured parents' preferred and actual roles in decision making and physician perceptions of parents' preferred roles. Most parents (127 of 192; 66%) wanted to share responsibility for decision making with their children's physician. Although most parents (122 of 192; 64%) reported that they had their preferred role in decision making, those who did not tended to have more passive roles than they wished (47 of 70; 67%; P < .001). Parents were no more likely to hold their ideal roles in decision making when the physician accurately identified the parents' preferred role (odds ratio [OR], 1.04; P = .92). Parents were less likely to hold more passive roles than they wished in decision making when they felt that physician communication (OR, 0.39; P = .04) and information received (OR, 0.45; P = .04) had been of high quality. Parents who held more passive roles than they wished in decision making were less likely to trust their physicians' judgments (OR, 0.46; P = .03). Most parents of children in their first year of cancer treatment participate in decision making to the extent that they wish; although, nearly one fourth hold more passive roles than desired. High-quality physician communication is associated with attainment of one's preferred role.

Patient preferences for the delivery of bad news - the experience of a UK Cancer Centre

The primary aim of this study was to assess how patients would prefer to be given their cancer diagnosis in a typical UK cancer centre. Two hundred and forty-four patients attending the oncology outpatient department at the Leicester Royal Infirmary, UK, were recruited. Patients were invited to complete the Measure of Patients' Preferences questionnaire, write comments on their own experience of the breaking bad news consultation and choose their preferred role in decision making. Over 90% of questionnaires were completed. Patients rated the items addressing the message content of the consultation as more important than the facilitative or the supportive aspects. Over 80% of patients wrote a detailed account of their experiences, of which 60% were satisfied with the consultation. Most of the patients who were dissatisfied commented on the unsympathetic or pessimistic manner of the doctor. The majority of patients wanted a collaborative role in decision making. Regarding the cancer diagnosis, the majority of patients have information needs, want to be involved in treatment decisions and know their prognosis. The difficulty for physicians is how to meet individual information needs, give hope, but not deliver unrealistic expectations.

Configural frequency analysis as a method of determining patients' preferred decision-making roles in dialysis.

BackgroundNumerous studies examined factors in promoting a patient preference for active participation in treatment decision making with only modest success. The purpose of this study was to identify types of patients wishing to participate in treatment decisions as well as those wishing to play a completely active or passive role based on a Germany-wide survey of dialysis patients; using a prediction typal analysis method that defines types as configurations of categories belonging to different attributes and takes particularly higher order interactions between variables into account.MethodsAfter randomly splitting the original patient sample into two halves, an exploratory prediction configural frequency analysis (CFA) was performed on one-half of the sample (n = 1969) and the identified types were considered as hypotheses for an inferential prediction CFA for the second half (n = 1914). 144 possible prediction types were tested by using five predictor variables and control preferences as criterion. An α-adjustment (0.05) for multiple testing was performed by the Holm procedure.Results21 possible prediction types were identified as hypotheses in the exploratory prediction CFA; four patient types were confirmed in the confirmatory prediction CFA: patients preferring a passive role show low information seeking preference, above average trust in their physician, perceive their physician's participatory decision-making (PDM)-style positive, have a lower educational level, and are 56-75 years old (Type 1; p < 0.001) or > 76 years old (Type 2; p < 0.001). Patients preferring an active role show high information seeking preference, a higher educational level, and are < 55 years old. They have either below average trust, perceive the PDM-style negative (Type 3; p < 0.001) or above average trust and perceive the PDM-style positive (Type 4; p < 0.001).ConclusionsThe method prediction configural frequency analysis was newly introduced to the research field of patient participation and could demonstrate how a particular control preference role is determined by an association of five variables.

Information needs, decisional regret and satisfaction of older and younger adults with acute myeloid leukemia

Abstract Objectives Patients diagnosed with acute myeloid leukemia (AML) can often feel overwhelmed at having to make a difficult and time-sensitive treatment decision in this life-threatening illnes. We sought to explore information needs, control preferences, decisional regret, and decisional satisfaction in adult patients with AML and to explore differences by age group. Methods We recruited 35 consecutive English-speaking patients with recently diagnosed AML, evenly split between older ( age 60+, n = 17) and younger (n = 18) adults. We administered questionnaires including the satisfaction with decision making scale, decisional regret scale, control preferences scale, and quality of life questions at one or two key time points: start of chemotherapy, end of induction chemotherapy, and end of intensive chemotherapy. Results 52% of patients preferred a passive decision-making role. Most patients (80%) achieved their preferred decision-making role. Overall decisional satisfaction scores were high and regret scores were low, but there was a trend toward less satisfaction with more passive decision-making roles (p = 0.066). Most patients had a high level of trust in their physician. Physicians and nurses were reported as the most useful sources of information. There were no significant differences in any of these outcomes by age group. Quality of life and fatigue were also similar among older and younger patients. Discussion These findings demonstrate similarities in information and decisional issues in older and younger adults with AML and highlight the need for further study of decisional regret and satisfaction over time in this patient population.

Uncertainty and patients’ preferred role in decision making

Objective Experts recommend that clinicians tailor their interactions according to each patient's preferred decision style. Because participation is associated with improved clinical outcomes, factors which modify preferred role should be addressed before determining the level at which patients wish to participate. The objective of this study was to determine if certainty related to initiating treatment is related to preferred role in decision making. Methods We conducted face-to-face interviews with 142 patients eligible for the treatment of hepatitis C. Preferred role in decision making was measured using the Control Preferences Scale and certainty was measured with 11-point numeric rating scale. Results Subjects who were uncertain whether they wanted to start treatment were more likely to prefer Role 2: “to make the final selection of my treatment after seriously considering my doctor's opinion” over Role 1 “to make the final selection about which treatment I will receive” compared to those who were certain [Adjusted OR (95% CI) = 4.9 (1.7–14.5)]. Subjects who were uncertain were also more likely to prefer sharing responsibility for decision making over Role 1 compared to those who were certain [Adjusted OR (95% CI) = 3.7 (1.3–10.4)]. Conclusions Certainty is associated with preferred decision styles. Physicians should ascertain their patients’ levels of uncertainty and adjust their input accordingly. Practice implication Physicians should ascertain their patients’ levels of uncertainty and adjust their input accordingly.

Expanding the paradigm of the physician's role in surrogate decision-making: an empirically derived framework.

Little is known about what role physicians take in the decision-making process about life support in intensive care units. To determine how responsibility is balanced between physicians and surrogates for life support decisions and to empirically develop a framework to describe different models of physician involvement. Multi-centered study of audio-taped clinician-family conferences with a derivation and validation cohort. Intensive care units of four hospitals in Seattle, Washington, in 2000 to 2002 and two hospitals in San Francisco, California, in 2006 to 2008. Four hundred fourteen clinicians and 495 surrogates who were involved in 162 life support decisions. In the derivation cohort (n = 63 decisions), no clinician inquired about surrogates' preferred role in decision-making. Physicians took one of four distinct roles: 1) informative role (7 of 63) in which the physician provided information about the patient's medical condition, prognosis, and treatment options but did not elicit information about the patient's values, engage in deliberations, or provide a recommendation about whether to continue life support; 2) facilitative role (23 of 63), in which the physician refrained from providing a recommendation but actively guided the surrogate through a process of clarifying the patients' values and applying those values to the decision; 3) collaborative role (32 of 63), in which the physician shared in deliberations with the family and provided a recommendation; and 4) directive role (1 of 63), in which the physician assumed all responsibility for, and informed the family of, the decision. In 10 out of 20 conferences in which surrogates requested a recommendation, the physician refused to provide one. The validation cohort revealed a similar frequency of use of the four roles, and frequent refusal by physicians to provide treatment recommendations. There is considerable variability in the roles physicians take in decision-making about life support with surrogates but little negotiation of desired roles. We present an empirically derived framework that provides a more comprehensive view of physicians' possible roles.

Decision-Making Role Preferences Among Patients with HIV: Associations with Patient and Provider Characteristics and Communication Behaviors

A preference for shared decision-making among patients with HIV has been associated with better health outcomes. One possible explanation for this association is that patients who prefer a more active role in decision-making are more engaged in the communication process during encounters with their providers. Little is known, however, about patient and provider characteristics or communication behaviors associated with patient decision-making preferences in HIV settings. We examined patient and provider characteristics and patient-provider communication behaviors associated with the decision-making role preferences of patients with HIV. Cross-sectional analysis of patient and provider questionnaires and audio recorded clinical encounters from four sites. A total of 45 providers and 434 of their patients with HIV. Patients were asked how they prefer to be involved in the decision-making process (doctor makes all/most decisions, patients and doctors share decisions, or patients make decisions alone). Measures of provider and patient communication behaviors were coded from audio recordings using the Roter Interaction Analysis System. Overall, 72% of patients preferred to share decisions with their provider, 23% wanted their provider to make decisions, and 5% wanted to make decisions themselves. Compared to patients who preferred to share decisions with their provider, patients who preferred their provider make decisions were less likely to be above the age of 60 (ARR 0.09, 95% CI 0.01-0.89) and perceive high quality provider communication about decision-making (ARR 0.41, 95% CI 0.23-0.73), and more likely to have depressive symptoms (ARR 1.92, 95% CI 1.07-3.44). There was no significant association between patient preferences and measures of provider or patient communication behavior. Observed measures of patient and provider communication behavior were similar across all patient decision-making role preferences, indicating that it may be difficult for providers to determine these preferences based solely on communication behavior. Engaging patients in open discussion about decision-making preferences may be a more effective approach.

Health Decision-Making Preferences Among African American Men Recruited From Urban Barbershops

ObjectiveTo examine general health decision-making roles among African American men ages 40 to 70 recruited in barbershops in the Richmond, Virginia, metropolitan area. MethodsWe adapted the 1-item Control Preference scale to study the associations between health decision-making role preferences and demographic variables. Forty African-American men were recruited from barbershops to complete a self-administered survey. After performing descriptive statistics, we dichotomized our outcome into active vs nonactive (collaborative or passive) decision makers. Data were then analyzed using χ2, Wilcoxon-Mann-Whitney rank sum, and multiple logistic regression. ResultsFifteen subjects responded that they engaged in active decision making, 20 in collaborative, and 5 in passive decision making. Almost all (86.7%) active decision makers were home owners, vs 41.7% of nonactive decision makers. Among active decision makers, 46.7% had incomes of more than $70000, vs 12.5% of nonactive decision makers. The active group reported health status that was good to excellent, while 20.8% of those in the nonactive group reported poor/fair health. ConclusionAfrican American male barbershop clients preferred an active or collaborative health decision-making role with their physician, rather than a passive role. The relationship among home ownership, income, and decision style may best be understood by considering the historical and cultural influences on gender role socialization among African American males. More comprehensive assessment of decision styles is necessary to better understand health decision making among African American male patients.

Factors influencing elderly women's mammography screening decisions: implications for counseling

BackgroundAlthough guidelines recommend that clinicians consider life expectancy before screening older women for breast cancer, many older women with limited life expectancies are screened. We aimed to identify factors important to mammography screening decisions among women aged 80 and older compared to women aged 65–79.MethodsTelephone surveys of 107 women aged 80+ and 93 women aged 65–79 randomly selected from one academic primary care practice who were able to communicate in English (60% response rate). The survey addressed the following factors in regards to older women's mammography screening decisions: perceived importance of a history of breast disease, family history of breast cancer, doctor's recommendations, habit, reassurance, previous experience, mailed reminder cards, family/friend's recommendations or experience with breast cancer, age, health, and media. The survey also assessed older women's preferred role in decision making around mammography screening.ResultsOf the 200 women, 65.5% were non-Hispanic white and 82.8% were in good to excellent health. Most (81.3%) had undergone mammography in the past 2 years. Regardless of age, older women ranked doctor's recommendations as the most important factor influencing their decision to get screened. Habit and reassurance were the next two highly ranked factors influencing older women to get screened. Among women who did not get screened, women aged 80 and older ranked age and doctor's counseling as the most influential factors and women aged 65–79 ranked a previous negative experience with mammography as the most important factor. There were no significant differences in preferred role in decision-making around mammography screening by age, however, most women in both age groups preferred to make the final decision on their own (46.6% of women aged 80+ and 50.5% of women aged 65–79).ConclusionWhile a doctor's recommendation is the most important factor influencing elderly women's mammography screening decisions, habit and reassurance also strongly influence decision-making. Interventions aimed at improving clinician counseling about mammography, which include discussions around habit and reassurance, may result in better decision-making.

Concordance between patients' desired and actual decision‐making roles in breast cancer care

This study explored breast cancer patients' preferences and experiences for participation in treatment decision making as well as the concordance between patients' actual and desired decision making. The interplay between depression, anxiety and decision-making preferences was also examined.A consecutive sample of primary breast cancer patients was recruited within a week of either surgery or the beginning of neo-adjuvant chemotherapy in two breast cancer centres in Germany. Women were asked to complete a self-explanatory questionnaire. Most patients (40.2%) of the 137 participants preferred the physician to make the treatment decision. A total of 63.4% were able to fulfil their preferred decision-making role. Breast cancer patients who wanted the physician to make the decision and patients who wanted to make the decision on their own were more likely to have their preferences met than patients who wished to share the decision (p < 0.01). Availability of treatment choice and the level of depression influenced the preferred decision-making preference. Limited concordance between desired and actual decision making of patients with collaborative decision-making preferences suggests the need for better communication and physician training on shared decision making.

Shared decision making and selfmanagement in multiple sclerosis – a consequence of evidence

Shared decision making is increasingly recognised as the ideal model of patient-physician communication especially in chronic diseases with partially effective treatments such as multiple sclerosis (MS). Since 2001, we studied prerequisites for patient participation in decision making as well as the effects of evidence-based patient information on decision making processes in MS. In pre-studies we found that 80% of MS patients demand autonomous roles in treatment decisions which contrasts to a poor knowledge of risks. On the other hand MS patients are not disturbed by evidence-based, balanced complex information. MS patients can understand this kind of information and are able to transfer new abilities to other situations. Major information interests were related to symptom alleviation, diagnostic procedures and prognosis. Currently, we study the effects of a 4 hour education programme on relapse management versus an information leaflet as controls in 150 RR MS patients in a randomised-controlled trial. In a second trial including 280 MS patients we study the effects of an evidence-based decision aid on immunotherapy on decisional role preference and performance in the patient physician encounter. Results at the end of 2006 will show to which extent patient education with a focus on evidence-based patient information influences participation in the decision making process. Assuming that patient education programmes will enhance self-management abilities and the sense of control over the disease with enhanced quality of life and well-being, further modules covering all aspects of MS are to be developed.

Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction

Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis are not known. We assessed understanding of likelihood of cure and functional outcome among parents of children with cancer and sought to identify factors that place parents at risk for overly optimistic beliefs about prognosis. We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) who were treated at the Dana-Farber Cancer Institute and Children's Hospital in Boston, MA, and the children's physicians. Parent and physician expectations for likelihood of cure and functional outcome were compared. In 152 accurate or optimistic parents, we determined factors associated with accurate understanding of likelihood of cure compared with optimism. The majority of parents (61%) were more optimistic than physicians about the likelihood of cure. Parents' beliefs about other outcomes of cancer treatment were similar (quality-of-life impairment, P = .70) or more pessimistic (physical impairment, P = .01; intellectual impairment, P = .01) than physicians' beliefs. Parents and physicians were more likely to agree about chances of cure when physicians had confidence in knowledge of prognosis (odds ratio [OR] = 2.55, P = .004) and allowed parents to take their preferred decision-making role (OR = 1.89, P = .019). Parents of children with cancer are overly optimistic about chances of cure but not about other outcomes of cancer therapy. Parents tend to be overly optimistic about cure when physicians have little confidence and when the decision-making process does not meet parents' preferences. These findings suggest that physicians are partly responsible for parents' unrealistic expectations about cure.

Informed shared decision making in multiple sclerosis—inevitable or impossible?

Patients and health authorities increasingly claim active roles in health care decision making processes. As immune therapies in MS are partially effective MS is a prototypic condition for a shared decision making process. The treatment of acute relapses and the initiation, change or withdrawal of so called disease-modifying treatments are key decisions in MS management. We developed two decision aids following the phased approach of the framework of increasing evidence for complex interventions for these key decisions. In prestudies we found that 80% of MS patients demand autonomous roles in treatment decisions which contrasts with a poor knowledge of risks. On the other hand MS patients are not disturbed by evidence-based, balanced complex information. MS patients do understand this kind of information and are able to transfer new abilities to other situations. Currently we study the effects of a 4-hour education programme on relapse management versus an information leaflet in controls in 150 MS patients. In a second trial with n = 298 MS patients we study the effects of an evidence-based patient information on immunotherapy on decisional role preference and performance in the patient physician encounter. Results in early 2007 will show to which extent patient education with a focus on evidence-based patient information influences participation in the decision making process.