Patient Preferences In Decision Research Articles

Abstract P4-07-22: Clinical decision support systems for multidisciplinary team decision-making in patients with solid cancer: an implementation model based on a scoping review

Abstract Background Clinical decision-making by multidisciplinary teams (MDTs) is getting more complex as treatment advice for the individual patient must be based on an increasing amount of patient and tumor characteristics, and scientific evidence on treatment efficacy. Clinical decision support systems (CDSSs) can make an important contribution to assist but also optimize MDT decision-making. However, implementation of CDSSs in clinical practice is challenging. Aim & methods The aim of our study is to set up a CDSSs implementation model for multidisciplinary decision-making in solid cancer. It is based on a scoping review of the currently reported CDSSs for MDT decision-making in solid cancers with identification of reported barriers and facilitators for implementation of these CDSSs. For this we systematically searched the Cochrane Library, MEDLINE (accessed through PubMed) and Scopus up to September 1st 2021. Results Of the 710 screened abstracts, 38 papers met the inclusion criteria (table 1). Sixteen different CDSSs were identified. For implementation of CDSSs, 87 barriers and 73 facilitators were reported. The reported barriers could be categorized in the same categories as those of the facilitators (a factor can be reported as a barrier if the factor is not addressed well, and as a facilitator if the factor is properly addressed). The most frequently reported barriers for CDSS implementation for MDT decision making mainly concerned CDSS maintenance (e.g. not incorporating guideline updates), loco-regional feasibility of the CDDS recommendation (e.g. no access to diagnostics or treatment), validity, not incorporating patient preference in decision making, data accuracy, noncoverage of certain patient subpopulations, lack of an information standard, usability, data availability and no interoperability of the CDSS with the electronic health record. The most frequently reported facilitators included, besides the categories as mentioned above, the category shared decision making (reporting of alternative treatment options) and technical skills (involvement of a computer scientist). Table 2 shows the most frequently reported categories of barriers and facilitators, and scores for each included study the number of reported barriers (B) and facilitators (F) in each category. Conclusion Based on the identified barriers and facilitators, we developed a CDSS implementation model to guide more successful CDSS integration in the clinical workflow to support MDTs (the model will be shown at the congress). The usability of this theoretical model should be explored in future studies. Table 1. Characteristics of 38 included articles Table 2. Overview of the most frequently reported categories of barriers and facilitators. For each included study the number of reported barriers (B) and facilitatiors (F) are scored for each category. Citation Format: Mathijs P. Hendriks, Kees C. Ebben, Janine A. Van Til, Agnes Jager, Sabine Siesling. Clinical decision support systems for multidisciplinary team decision-making in patients with solid cancer: an implementation model based on a scoping review [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P4-07-22.

A Roadmap for Increasing the Usefulness and Impact of Patient-Preference Studies in Decision Making in Health: A Good Practices Report of an ISPOR Task Force

Many qualitative and quantitative methods are readily available to study patient preferences in health. These methods are now being used to inform a wide variety of decisions, and there is a growing body of evidence showing studies of patient preferences can be used for decision making in a wide variety of contexts. This ISPOR Task Force report synthesizes current good practices for increasing the usefulness and impact of patient-preference studies in decision making. We provide the ISPOR Roadmap for Patient Preferences in Decision Making that invites patient-preference researchers to work with decision makers, patients and patient groups, and other stakeholders to ensure that studies are useful and impactful. The ISPOR Roadmap consists of 5 key elements: (1) context, (2) purpose, (3) population, (4) method, and (5) impact. In this report, we define these 5 elements and provide good practices on how patient-preference researchers and others can actively contribute to increasing the usefulness and impact of patient-preference studies in decision making. We also present a set of key questions that can support researchers and other stakeholders (eg, funders, reviewers, readers) to assess efforts that promote the ongoing impact (both intended and unintended) of a particular preference study and additional studies in the future.

The Treatment Decision-making Preferences of Patients with Prostate Cancer Should Be Recorded in Research and Clinical Routine: a Pooled Analysis of Four Survey Studies with 7169 Patients

Different patients want to take different roles in the treatment decision-making process; these roles can be classified as passive, collaborative, and active. The aim of this study was to investigate the correlation between decision-making preferences among patients with prostate cancer and personal, disease-related, and structural factors. In four survey studies, we asked 7169 prostate cancer patients about their decision-making preferences using the Control Preferences Scale (CPS) and collected clinical, psychological, and quality-of-life measures. Most patients (62.2%) preferred collaborative decision-making, while 2322 (32.4%) preferred an active role, and only 391 (5.5%) preferred a passive role. Age (p < 0.001), data collection mode (p < 0.001), peer-to-peer support (p = 0.018), treatment status (p < 0.001), performed or planned radical prostatectomy (p < 0.001), metastatic disease (p = 0.001), and quality of life (p < 0.001) showed significant associations with patients’ preferred decision-making roles. Oncologic risk group, anxiety, and depression were not significant in the model. In particular, younger prostate cancer patients with higher quality of life completing an online survey want to play a more active role in treatment decision-making. Before treatment has started, patients tend to prefer collaborative decision-making. Few prostate cancer patients in Germany prefer a passive role. These patients are mostly older patients, patients with a metastatic disease, and patients who have opted for prostatectomy. Whether this finding reflects a generational effect or a tendency by age group and disease phase should be investigated. Further research is also needed to describe the causalities of these relationships. The CPS offers valuable information for personal counselling and should be applied in clinical routine. In a large group of patients with prostate cancer, we found that there is a strong desire for joint decision-making with the physician before the actual treatment. Especially younger men, men with active online behaviour, and men with a high quality of life want to be actively involved in therapy decision-making processes.

Hypertension management: experiences, wishes and concerns among older people—a qualitative study

ObjectivesSixty-five per cent of older people have hypertension, but little is known about their preferences and concerns regarding hypertension management. Guidelines on hypertension lack consensus on how to treat older...

Patient decision-making in severe inflammatory bowel disease: the need for improved communication of treatment options and preferences.

Patients with inflammatory bowel disease and their physicians must navigate ever-increasing options for treatment. The aim of this study was to elucidate the key drivers of treatment decision-making in inflammatory bowel disease. We conducted qualitative semi-structured in-person interviews of 20 adult patients undergoing treatment for inflammatory bowel disease at an academic medical centre who either recently initiated biologic therapy or underwent an operation or surgical evaluation. Interviews were audio-recorded, transcribed verbatim, iteratively coded, and discussed to consensus by five researchers. We used thematic analysis to explore factors influencing decision-making. Four major themes emerged as key drivers of treatment decision-making: perceived clinical state and disease severity, the patient-physician relationship, knowledge, attitudes and beliefs about treatment options, and social isolation and stigma. Patients described experiencing a clinical turning point as the impetus for proceeding with a previously undesired treatment such as infusion medication or surgery. Patients reported delays in care or diagnosis, inadequate communication with their physicians, and lack of control over their disease management. Patients often stated that they considered surgery to be the treatment of last resort, which further compounded the complexity of making treatment decisions. Patients described multiple barriers to making informed and collaborative decisions about treatment, especially when considering surgical options. Our study reveals a need for more comprehensive communication between the patient and their physician about the range of medical and surgical treatment options. We recommend a patient-centred approach toward the decision-making process that accounts for patient decision-making preferences, causes of social stress, and clinical status.

"I need to know what makes somebody tick …": Challenges and Strategies of Implementing Shared Decision-Making in Individualized Oncology.

Shared decision-making (SDM) has been advocated as an ethical framework for decision-making in cancer care. According to SDM, patients make decisions in light of their values and based on the available evidence. However, SDM is difficult to implement in cancer care. A lack of applicability in practice is often reported. This empirical-ethical study explores factors potentially relevant to current difficulties in translating the concept of SDM into clinical practice. This study was conducted with nonparticipant observation of the decision-making process in patients with gastrointestinal cancers for whom the benefit of adjuvant chemotherapy was uncertain according to clinical guidelines. Triangulation of qualitative data analysis was conducted by means of semistructured interviews subsequent to the observation. Observation notes and interview transcripts were analyzed according to the principles of grounded theory. Deviating from the concept of SDM, oncologists initiated a process of eliciting values and medical information prior to conveying information. The purpose of this approach was to select and individualize information relevant to the treatment decision. In doing so, the oncologists observed used two strategies: "biographical communication" and a "metacommunicative approach." Both strategies could be shown to be effective or to fail depending on patients' characteristics such as their view of the physicians' role and the relevance of value-related information for medical decision-making. In contrast to the conceptual account of SDM, oncologists are in need of patient-related information prior to conveying information. Both strategies observed to elicit such information are in principle justifiable but need to be adapted in accordance with patient preferences and decision-making styles. This study showed that knowledge of patients' values and preferences is very important to properly adapt the giving of medical information and to further the process of shared decision-making. Shared decision-making (SDM) trainings should consider different strategies of talking about values. The right strategy depends largely on the patient's preferences in communication. To be aware of the role of values in SDM and to be able to switch communicative strategies might prove to be of particular value. A more systematic evaluation of the patient's decision-making preferences as part of routine procedures in hospitals might help to reduce value-related barriers in communication.

Implementing advance care planning in nursing homes \u2013 study protocol of a cluster-randomized clinical trial

BackgroundClose to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies.Methods/designThis study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or “clusters” were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group.DiscussionThis project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.

Choosing the appropriate treatment setting: which information and decision-making needs do adult inpatients with mental disorders have? A qualitative interview study.

BackgroundDecisions on medical treatment setting are perceived as important but often difficult to make for patients with mental disorders. Shared decision-making as a strategy to decrease decisional conflict has been recommended, but is not yet widely implemented. This study aimed to investigate the information needs and the decision-making preferences of patients with mental disorders prior to the decision for a certain treatment setting. The results will serve as a prerequisite for the development of a high-quality patient decision aid (PtDA) regarding the treatment setting decision.MethodsWe conducted retrospective individual semi-structured interviews with n=24 patients with mental disorders in three psychotherapeutic inpatient care units. The interviews were audiotaped, transcribed, coded, and content-analyzed.ResultsThe majority of the patients wanted to be involved in the decision-making process. They reported high information needs regarding treatment options in order to feel empowered to participate adequately in the decision for a certain treatment setting. However, some patients did not want to participate or receive information, for example, because of their high burden of mental disorder. Whereas the majority were satisfied with the extent they were involved in the decision, few participants felt sufficiently informed about treatment options. Most patients reported that a decision aid regarding an appropriate treatment setting would have been helpful for them. Important information that should be included in a PtDA was general information about mental illness, effective treatment options, specific information about the different treatment settings, and access to treatment.DiscussionThe identified information and decision-making needs provide a valuable basis for the development of a PtDA aiming to support patients and caregivers regarding the decision for an adequate treatment setting. As preferences for participation vary among patients and also depend on the current mental state, a flexible approach is needed to meet patients’ individual wishes and needs.

How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults.

Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so. We performed a secondary data analysis of a study conducted at three local hospitals that surveyed surrogate decision-makers for hospitalized patients 65years of age and older. Surrogates rated the importance of 16 decision-making principles and selected the one that was most important. We divided the surrogates into two groups: those who prioritized patient preferences and those who prioritized patient well-being. We analyzed the two groups for differences in knowledge of patient preferences, presence of advance directives, and psychological outcomes. A total of 362 surrogates rated an average of six principles as being extremely important in decision-making; 77.8% of surrogates selected a patient well-being principle as the most important, whereas only 21.1% selected a patient preferences principle. Advance directives were more common to the patient preferences group than the patient well-being group (61.3% vs. 44.9%; 95% CI: 1.01-3.18; p=0.04), whereas having conversations with the patient about their health care preferences was not a significant predictor of surrogate group identity (81.3% vs. 67.4%; 95% CI: 0.39-1.14; p=0.14). We found no differences between the two groups regarding surrogate anxiety, depression, or decisional conflict. While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

What are the decision-making preferences of patients in vascular surgery? A mixed-methods study

ObjectivesShared decision-making (SDM) has been advocated as the preferred method of choosing a suitable treatment option. However, patient involvement in treatment decision-making is not yet common practice in the field...

Amplifying Each Patient's Voice: A Systematic Review of Multi-criteria Decision Analyses Involving Patients.

Qualitative methods tend to be used to incorporate patient preferences into healthcare decision making. However, for patient preferences to be given adequate consideration by decision makers they need to be quantified. Multi-criteria decision analysis (MCDA) is one way to quantify and capture the patient voice. The objective of this review was to report on existing MCDAs involving patients to support the future use of MCDA to capture the patient voice. MEDLINE and EMBASE were searched in June 2014 for English-language papers with no date restriction. The following search terms were used: 'multi-criteria decision*', 'multiple criteria decision*', 'MCDA', 'benefit risk assessment*', 'risk benefit assessment*', 'multicriteri* decision*', 'MCDM', 'multi-criteri* decision*'. Abstracts were included if they reported the application of MCDA to assess healthcare interventions where patients were the source of weights. Abstracts were excluded if they did not apply MCDA, such as discussions of how MCDA could be used; or did not evaluate healthcare interventions, such as MCDAs to assess the level of health need in a locality. Data were extracted on weighting method, variation in patient and expert preferences, and discussion on different weighting techniques. The review identified ten English-language studies that reported an MCDA to assess healthcare interventions and involved patients as a source of weights. These studies reported 12 applications of MCDA. Different methods of preference elicitation were employed: direct weighting in workshops; discrete choice experiment surveys; and the analytical hierarchy process using both workshops and surveys. There was significant heterogeneity in patient responses and differences between patients, who put greater weight on disease characteristics and treatment convenience, and experts, who put more weight on efficacy. The studies highlighted cognitive challenges associated with some weighting methods, though patients' views on their ability to undertake weighting tasks was positive. This review identified several recent examples of MCDA used to elicit patient preferences, which support the feasibility of using MCDA to capture the patient voice. Challenges identified included, how best to reflect the heterogeneity of patient preferences in decision making and how to manage the cognitive burden associated with some MCDA tasks.

Patient-Reported Roles, Preferences, and Expectations Regarding Treatment of Stage I Rectal Cancer in the Cancer Care Outcomes Research and Surveillance Consortium.

Historically, stage I rectal cancer was treated with total mesorectal excision. However, there has been growing use of local excision, with and without adjuvant therapy, to treat these early rectal cancers. Little is known about how patients and providers choose among the various treatment approaches. The purpose of this study was to identify patient roles, preferences, and expectations as they relate to treatment decision making for patients with stage I rectal cancer. This is a population-based study. The study included a geographically diverse population and health-system-based cohort. A total of 154 adults with newly diagnosed and surgically treated stage I rectal cancer between 2003 and 2005 were included. We compared patients by surgical treatment groups, including total mesorectal excision and local excision. Clinical, sociodemographic, and health-system factors were assessed for association with patient decision-making preferences and expectations. A total of 80% of patients who underwent total mesorectal excision versus 63% of patients who underwent local excision expected that surgery would be curative (p = 0.04). The total mesorectal excision group was less likely to report that radiation would cure their cancer compared with the local excision group (27% vs 63%; p = 0.004). When asked about their preferred role in decision making, 28% of patients who underwent total mesorectal excision preferred patient-controlled decision making compared with 48% of patients who underwent local excision (p = 0.046). However, with regard to the treatment actually received, 38% of the total mesorectal excision group reported making their own surgical decision compared with 25% of the local excision group (p = 0.18). The study was limited by its sample size. The preferred decision-making role for patients did not match the actual decision-making process. Future efforts should focus on bridging the gap between the decision-making process and patient preferences regarding various treatment approaches. This will be particularly important as newer innovative procedures play a more prominent role in the rectal cancer treatment paradigm.

Ductal Carcinoma In Situ: How Much Treatment Is Enough, How Much Is Too Much?

In the accompanying article, Wood concisely reviews currentmanagement of ductal carcinoma in situ (DCIS), with a focus on the use of radiotherapy (RT) after breastconserving surgery (BCS). The crux of his argument is that because RT does not prolong survival, its usemust be considered optional and the risks and benefits of RT considered in the context of patient values. Henotes that“nearly twice asmanywomen will have an inferior cosmetic outcome result as will benefit from avoiding a recurrent breast lesion,” and that the use of RT for initial treatment necessitates mastectomy for any subsequent recurrence. The importance of considering patient preference in decision making when there is equipoise in survival outcomes is inarguable.Wesurveyedpatients aboutpriorities and treatment choices in a population-based study of 1,629 patientswithDCIS and stage I and II breast cancer. Concern about disease recurrence was the most important factor in treatment choice, greatly influencing 37%, whereas concerns about radiation or body image greatly influenced only 15% and5%of patients, respectively. Prevention of local recurrence in DCIS is particularly relevant to patient concerns, because 50% of these recurrences are invasive carcinoma, and randomized trials have demonstrated a significant increase in mortality in patients experiencing invasive recurrence after DCIS treatment. Thus, it is not particularly surprising that risk-averse patients opt for RTor, increasingly, forbilateralmastectomy. Endocrine Therapy Wood also notes that endocrine therapy is an alternative to RT for risk reduction in women with DCIS. Endocrine therapy has the advantage of reducing the incidence of both ipsilateral and contralateral breast events, but the absolute benefit of 5 years of treatment is modest. In a meta-analysis of the National Surgical Adjuvant Breast and Bowel Project B24 trial and the United Kingdom, Australia, New Zealand trials of adjuvant tamoxifen in DCIS, no significant difference in all-cause mortality was seen with tamoxifen treatment compared with placebo, but tamoxifen treatment did statistically significantly reduce ipsilateral and contralateral DCIS events and contralateral invasive cancers, with a trend toward reduction of ipsilateral invasive cancer. The number needed to treat for a protective effect against all breast events was 15. However, ameta-analysis of 10-year event rates in9,404patientswithDCIS found that the local recurrence rate after BCS and RTwas 14.4%, compared with 24.7% with BCS and tamoxifen, suggesting that if the goal is to minimize recurrence, RT is the more effective strategy. A decision to use tamoxifen (or an aromatase inhibitor) also subjects the patient to 5 years of the welldocumented side effects of endocrine therapy. Most importantly, the acceptance of tamoxifen among patients with DCIS is limited. In a Canadian population-based cohort of women with DCIS treated in

How to integrate research evidence on patient preferences in pharmaceutical coverage decisions and clinical practice guidelines: A qualitative study among Dutch stakeholders

Despite the increasing number of research publications on patient preferences, their use in healthcare policy-making is limited. Integrating research evidence on patient preferences in policy-making is advocated by some, but several issues are put forward as well. There has been no systematic investigation of the stakeholders’ view on this matter so far. Objective is to explore the opinions of Dutch stakeholders on how to integrate evidence on patient preferences in pharmaceutical coverage decisions and clinical practice guideline (CPG) development, and which issues may be encountered. MethodsQualitative study with semi-structured interviews with Dutch researchers (N=7), policy-makers and CPG developers (N=4) and patient representatives (N=4) involved in pharmaceutical coverage decisions and/or CPG development. The interview scheme focused on the definition of patient preferences; how to integrate evidence on patient preferences in decision-making; and barriers and facilitators. ResultsRespondents mentioned various barriers and facilitators for integration, of conceptual, normative, procedural, methodological and practical nature. There is also variety in the terms and definitions used for preferences, complicating searching and synthesising evidence. It is not clear how to integrate evidence on patient preferences in different decision contexts, and what weight preferences should have in relation to other decision criteria. ConclusionsThis study revealed important issues that need guidance when integrating evidence on patient preferences in healthcare policy decisions.

Patient Preferences for Treatment of Low Back Pain—A Discrete Choice Experiment

BackgroundBack pain imposes a substantial economic and social burden, and treatment decisions are distorted by conflicting evidence. Thus, it is important to include patient preferences in decision making and policy making. ObjectiveTo contribute to the understanding of patient preferences in relation to the choice of treatment for low back pain. MethodsA discrete choice experiment was conducted with consecutive patients referred to a regional spine center. The respondents (n = 348) were invited to respond to a choice of two hypothetical treatment options and an opt-out option. The treatment attributes included the treatment modality, the risk of relapse, the reduction in pain, and the expected increase in the ability to perform activities of daily living. In addition, the wait time to achieve the treatment effect was used as a payment vehicle. Mixed logit models were created to perform analysis. Subgroup analysis, dividing respondents into sociodemographic and disease-related categories, further explored the willingness to wait. ResultsRespondents assigned positive utilities to positive treatment outcomes and disutility to higher risks and longer waits for effects of treatment and to surgical interventions. The model captured significant heterogeneity within the sample for the outcomes of pain reduction and the ability to pursue activities of daily living and for the treatment modality. The subgroup analysis revealed differences in the willingness to wait, especially with regard to treatment modality, the level of pain experienced at the time of data collection, and the respondents’ preferences for surgery. ConclusionsThe majority of the respondents prefer nonsurgical interventions, but patients are willing to wait for more ideal outcomes and preferred interventions. The results show that health care professionals have a very important task in communicating clearly about the expected results of treatment and the basis of their treatment decisions, as patients' preferences are highly individual.

Making information ‘relevant’: General Practitioner judgments and the production of patient involvement

Sociological work that has engaged with the issue of patient involvement in health care suggests it needs to be recognised that decision-making is not simply an individual cognitive act contained in a single consultation, but a process that is distributed across multiple encounters in relation to a range of agents and non-human actors. Drawing on such conceptualisations of decision-making, and based on semi-structured interviews with 24 General Practitioners (GPs) in the United Kingdom about the prescription of statins for the primary prevention of cardiovascular disease, this paper explores the preemptive work that GPs perform when attempting to achieve patient involvement in healthcare decisions. The paper identifies a set of repertoires through which they evaluate and coordinate often contradictory forms of knowledge, transforming them into information that they think is relevant to patients, and which will potentially facilitate meaningful involvement in healthcare decisions. The study concludes by suggesting that such fluid and context sensitive practices are a necessary strategy for navigating complex health environments, which can be justified and underpinned by a relational model of autonomy. However, work needs to be done to explore how such judgments can be calibrated to mesh with the decision-making preferences of patients and what new approaches and standards for practice this would require.

Patient Satisfaction in an Academic Chronic Pain Clinic

Patient perception of healthcare quality is of growing interest. It has been shown that patient satisfaction is associated with compliance with medical advice and clinical outcome. The 3-fold purpose of this study was to identify which attributes of the patient-physician interaction most strongly correlated with patients' perceptions of provider quality of care, to identify key drivers that move patients' perception of overall provider quality from "very good" to "excellent," and to identify features of the pain clinic experience that were most important to patients but were simultaneously perceived as lacking. Randomized patient satisfaction survey conducted via telephone approximately 3weeks after the patient's pain clinic visit. A total of 999 patients participated in the survey over 5years (estimated response rate 60.2%). Thoroughness, listening, and time spent with the provider were the 3 attributes most strongly associated with the patients' perceptions of provider quality of care, while thoroughness, listening, punctuality, and clear instructions were the drivers of "very good" vs. "excellent" patient perceived overall provider quality. Areas identified for clinic improvement include thoroughness, providing adequate explanations and instructions, and including patient preferences in decision making. These results may guide pain clinic physicians as they seek to improve patient perceptions of their care and ultimately patient outcomes.

Meeting the Decision-Making Preferences of Patients With Breast Cancer in Oncology Consultations: Impact on Decision-Related Outcomes

To investigate how involvement preferences of patients with breast cancer change during the treatment decision-making process and determine the impact of meeting patients' expectations on decision-making outcomes. Participants were 683 patients with breast cancer from 62 oncologists in five different countries recruited to an International Breast Cancer Study Group (IBCSG 33-03) project. Questionnaires elicited patients' pre- and postconsultation preferences for involvement in treatment decision making and whether these were met or not. Decision-related outcomes were assessed postconsultation. Before the consultation, most patients preferred shared or patient-directed treatment decision making. After the consultation, 43% of patients' preferences changed, and most shifted toward patient-directed decisions. The actual postconsultation decision was more likely to be made according to postconsultation rather than preconsultation preferences. Compared with patients who were less involved than they had hoped to be, patients who were as involved as they had hoped to be or were even more involved in decision making had significantly better decision-related outcomes. This was true regardless of whether preference change occurred. Many patients with early-stage breast cancer have treatment options and approach treatment decisions with a desire for decisional control, which may increase after their consultation. Patients' ultimate involvement preferences were more likely to be consistent with the way the decision was actually made, suggesting that patients need to feel concordance between their preference and the actual decision. Patients who directed decisions, even if more than they hoped for, fared better on all decision-related outcomes. These results emphasize the need for oncologists to endorse and facilitate patient participation in treatment decision making.

Prescription medicines: decision-making preferences of patients who receive different levels of public subsidy

Objective To compare the relative importance of medicine attributes and decision-making preferences of patients with higher or lower levels of insurance coverage in a publicly funded health care system. Design and setting Cross-sectional telephone survey of randomly selected regular medicine users aged ≥18 years in the Hunter Valley, NSW, Australia. Main variables studied Questions about 27 medicine attributes and active involvement in decisions to start a new medicine. Results After adjustment, there were few differences between the 408 concession card holders (high insurance) and 410 general beneficiaries (low insurance) in their assessment of the importance of medicine attributes. For both groups, the explanation of treatment options, establishing the need for the medicine, and medicine efficacy and safety were the most important considerations. Medicine costs, the treatment burden and medicine familiarity were less important; the views of family and friends ranked lowest. There was a statistically significantly greater influence of the regular doctor for the concession card holders than general beneficiaries (93.6 vs. 84%, adjusted OR 2.80, 95% CI 1.31, 5.99). Concession card holders were more likely to favour doctors having more say in the decision-making process (crude OR 1.69, 95% CI 1.28, 2.24), and more likely to report the most recent treatment decision being made by the doctor alone, compared with general beneficiaries (61.2 vs. 40.3%). Conclusion Medicine need, efficacy and safety are viewed as paramount for most patients, irrespective of insurance status. While patients report the importance of participation in treatment decisions, delegation of decision making to the doctor was common in practice.

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.