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In this article, we aim to better understand how a personal history of cancer influences perceptions of environmental risk factors for cancers and adoptions of health-related behaviours. Semi-struc...

Definitions and interpretations of 'health literacy' have important implications for the delivery of health care and for health policy-related initiatives. We conducted a systematic review and critical analysis to determine the extent to which definitions of health literacy differ in the academic literature, the similarities and differences across definitions, and possible interpretations for the most commonly used definitions. We identified 250 different definitions of health literacy and grouped them into three categories: (i) most commonly used definitions (n=6), (ii) modified versions of these most commonly used definitions (n=133), and (iii) 'other' definitions (n=111). We found the most commonly used definitions to be open to multiple interpretations and to reflect underlying assumptions that are not always justifiable. Attention is needed to the ways in which differing definitions and interpretations of health literacy may affect patient care and the delivery of health literacy-related policy initiatives.Journal of Public Health Policy advance online publication, 19 May 2016; doi:10.1057/jphp.2016.18.

In their critique of our paper, Hoch et al. [1] ask if it matters whether Canada’s separate health technology assessment (HTA) process for cancer drugs has an economic rationale. They say that the answer is no. However, as we will show later, on the basis of their actual comments, there seems to be ambiguity in what this ‘no’ really means. Hoch et al. also suggest that there were other rationales and objectives set for the establishment of a separate HTA review process for cancer drugs. Unfortunately, they do not identify or explore what these other rationales and objectives might have been, nor do they discuss what these are now and moving forward. Hence, we are left in the dark as to what these might be. Their response reminds us of the famous quotation (above) from Alice in Wonderland. We are left not really knowing where the authors want to go and why. Since we do not know what alternative rationale and objective(s) the authors have in mind, we focus the remainder of our response on comments that we think relate to the subject of our publication (i.e. whether an economic rationale has been provided for the establishment of a separate reimbursement review process for cancer drugs). Specifically, we address the following three issues. First, we discuss whether Hoch et al. really think that an economic rationale is not ‘‘needed to justify the creation and adoption of a separate cancer drug HTA process’’ and what appears to be confusion in their comments between an economic rationale (referred to in our paper as ‘‘a rationale that is consistent with an economic perspective’’ [2]) and goal(s) (or objectives) to achieve through allocation of resources (e.g. to improve population health). Second, we address Hoch et al.’s suggestion that ‘‘decision makers may be pursuing different objectives from academic researchers.’’ Third, we discuss Hoch et al.’s prescription for how to make ‘‘positive contributions that help decision makers address the challenges that decision makers have.’’

Objectives This study asked: What is known from the existing literature about the empirical relationships between health literacy (HL) and the three stages of the treatment decision making (TDM) process: information exchange, deliberation, and deciding on the treatment to implement? Methods A scoping review of the literature was conducted. Four databases were searched and a total of 2772 records were returned. After de-duplication and three levels of relevance screening, 41 primary studies were included. Results Relationships between HL and information exchange were studied more often than relationships between HL and deliberation and deciding on the treatment to implement. Across the 41 studies, there was little overlap in terms the measure(s) of HL adopted, the aspect of TDM considered, and the characteristics of the study populations – making comparisons of the findings difficult. Multiple knowledge gaps and measurement-related problems were identified; including, the possibility that the process of TDM influences HL. Conclusion The importance of HL to the three stages of TDM is unclear because of the knowledge gaps and measurement-related problems that exist. Practice implications There are many uncertainties about how TDM, or the design and use of patient decision aids, should respond to patients with different levels of HL.

Advances in personalized medicine have produced novel tests and treatment options for women with breast cancer. Relatively little is known about the process by which such tests are adopted into oncology practice. The objectives of the present study were to understand the experiences of medical oncologists with multigene expression profile (gep) tests, including their adoption into practice in early-stage breast cancer, and the perceptions of the oncologists about the influence of test results on treatment decision-making. We conducted a qualitative descriptive study involving interviews with medical oncologists from academic and community cancer centres or hospitals in 8 communities in Ontario. A 21-gene breast cancer assay was used as the example of gep testing. Qualitative analytic techniques were used to identify the main themes. Of 28 oncologists who were approached, 21 (75%) participated in the study [median age: 43 years, 12 women (57%)]. Awareness and knowledge of gep testing were derived from several sources: international scientific meetings, participation in clinical studies, discussions with respected colleagues, and manufacturer-sponsored meetings. Oncologists observed that incorporating gep testing into their clinical practice resulted in several changes, including longer consultation times, second visits, and taking steps to minimize treatment delays. Oncologists expressed divergent opinions about the strength of evidence and added value of gep testing in guiding treatment decisions. Incorporation of gep testing into clinical practice in early-stage breast cancer required oncologists to make changes to their usual routines. The opinions of oncologists about the quality of evidence underpinning the test affected how much weight they gave to test results in treatment decision-making.

Shared decision-making (SDM) between physicians and patients is often advocated as the ‘best’ approach to treatment decision-making in the clinical encounter. In this chapter we describe: (i) the key characteristics of a SDM approach; (ii) the clinical contexts for SDM; (iii) the definition and use of decision aids (DA), as well as their relationship to SDM; and (iv) the vexing problem of defining the meaning and role of values/preferences in treatment decision-making. Areas for further research and conceptual development are also suggested to help resolve outstanding issues in the above areas. Despite the widespread interest in promoting SDM, there does not seem to be as yet a universally accepted consensus on the meaning of this concept.

Two international movements, evidence-based medicine (EBM) and shared decision-making (SDM) have grappled for some time with issues related to defining the meaning, role and measurement of values/preferences in their respective models of treatment decision-making. In this article, we identify and describe unresolved problems in the way that each movement addresses these issues. The starting point for this discussion is that at least two essential ingredients are needed for treatment decision-making: research information about treatment options and their potential benefits and risks; and the values/preferences of participants in the decision-making process. Both the EBM and SDM movements have encountered difficulties in defining the meaning, role and measurement of values/preferences in treatment decision-making. In the EBM model of practice, there is no clear and consistent definition of patient values/preferences and no guidance is provided on how to integrate these into an EBM model of practice. Methods advocated to measure patient values are also problematic. Within the SDM movement, patient values/preferences tend to be defined and measured in a restrictive and reductionist way as patient preferences for treatment options or attributes of options, while broader underlying value structures are ignored. In both models of practice, the meaning and expected role of physician values in decision-making are unclear. Values clarification exercises embedded in patient decision aids are suggested by SDM advocates to identify and communicate patient values/preferences for different treatment outcomes. Such exercises have the potential to impose a particular decision-making theory and/or process onto patients, which can change the way they think about and process information, potentially impeding them from making decisions that are consistent with their true values. The tasks of clarifying the meaning, role and measurement of values/preferences in treatment decision-making models such as EBM and SDM, and determining whose values ought to count are complex and difficult tasks that will not be resolved quickly. Additional conceptual thinking and research are needed to explore and clarify these issues. To date, the values component of these models remains elusive and underdeveloped.

Introduction Immuno-oncology shows significant promise in the treatment of malignancy but is associated with a variety of immune-related adverse events. We previously reported that venous thromboembolism (VTE) occurred in over 20% of patients treated with checkpoint blockade. We therefore have attempted to identify biomarkers/risk factors for VTE in this population that might provide a means to target prophylactic anticoagulant therapy to individuals at highest risk for this complication. Methods We used a database of 1,686 patients who received any of six approved immunotherapies (ipilimumab, nivolumab, pembrolizumab, atezolizumab, avelumab or durvalumab) between July 2015 and December 2017 to identify patients with VTE events including deep venous thrombosis (DVT), pulmonary embolism (PE) and visceral vein thrombosis (VVT). For biomarker/risk factors assessment, we defined a subcohort of cancer patients with (n=14) or without (n=10) VTE after receiving immunotherapy that had consented to blood and data collection in compliance with guidelines approved by the Cleveland Clinic institutional review board. Age matched healthy controls (n = 9) were also included in the analysis. Phenotyping of myeloid-derived suppressor cells (MDSC) was performed on fresh peripheral blood samples following isolation of peripheral blood mononuclear cells (PBMC) and flow cytometry. We measured 1) total MDSC (CD33+HLADR−), and within that population, 2) monocytic M-MDSC (CD14+CD15−), 3) polymorphonuclear/granulocytic PMN-MDSC (CD14−CD15+), 4) immature I-MDSC (CD14−CD15−), as well as surface expression of PD1 and PDL1. Analysis of soluble plasma biomarkers was performed in parallel using the validated Meso Scale Discovery V-PLEX Human Biomarker 54-Plex assay. Results The study group included 7 patients with bladder cancer, 7 with melanoma, 6 with renal cell carcinoma, and 4 with lung cancer. Total MDSC levels in all cancer patients receiving immunotherapy were significantly higher than those of age matched healthy controls (4.278, n=24 vs 1.543, n=9; p = 0.0198). Cancer patients receiving immunotherapy who developed VTE had significantly more PMN-MDSC than patients without VTE (12.59, n=14 vs 1.641, n=10; p = 0.0474). Cancer patients receiving immunotherapy who developed VTE also had elevated levels of pre-immunotherapy total MDSC compared to non-VTE counterparts, though these differences did not achieve statistical significance (4.948, n=14 vs 3.341; NS). Of 54 soluble plasma biomarkers tested, vascular cell adhesion molecule 1 (sVCAM-1) and interleukin 8 (IL-8) levels were also significantly higher in patients who developed VTE compared to those who did not (1.210 vs 0.8955 mg/ml, p= 0.0285; and 221.2 vs 115.0, p= 0.0174, respectively). Conclusions VTE is a common but underappreciated complication in cancer patients receiving immunotherapy. There are no formal risk tools or biomarkers predictive of VTE in cancer patients initiating immunotherapy. We have identified candidate cellular and plasma biomarkers that associate with thrombotic risk in this population and provide potential insight into its pathophysiology. Prospective and mechanistic studies are underway to validate and further expand these findings. Disclosures Khorana: Janssen: Consultancy; Bayer: Consultancy; Pfizer: Consultancy; Sanofi: Consultancy. McCrae:Sanofi Pharmaceuticals: Membership on an entity's Board of Directors or advisory committees; Rigel Pharmaceutical: Membership on an entity's Board of Directors or advisory committees; Pfizer Pharmaceutical: Membership on an entity's Board of Directors or advisory committees; Dova Pharmaceuticals: Membership on an entity's Board of Directors or advisory committees.

Background Women with recurrent ovarian cancer depend on their physicians to provide them with information about their diagnosis and available treatment options if they wish to participate in the process of choosing the treatment. There is no information on how oncologists give information to women during the physician–patient encounter at the time the disease recurs. Objectives To explore from the oncologists' perspective (i) the extent to which oncologists provide their own patients who are experiencing their first recurrence of ovarian cancer with the same information about management options, and (ii) any explicit or implicit criteria they use to decide whether and how to tailor the information to individual patients. Methods We adopted a qualitative, exploratory descriptive approach to begin to understand oncologists' perspectives on how they gave information to patients within the context of their clinical practice. Individual interviews were used to identify themes related to the study objectives. Results Fifteen gynaecologic and five medical oncologists participated. Theme 1 describes the extent to which oncologists give information to their patients in the same way or in different ways. This section describes how the same oncologist may modify the depth of information transfer based on several factors. Theme 2 focuses on the factors that influence what information is given. For example, the amount and type of information given is based on the oncologist's on-going assessment of how the patient is assimilating the information shared during the medical encounter, the oncologists' perception of their relationship with the patient and the oncologist's assessment of what role they should take in decision making. Theme 3 involves the factors that influenced how information is given. For example, the information shared may vary based on the oncologist's perception of the patient's vitality, the patient's comprehension of the information, the patient's emotional well-being. In addition, the oncologist may make the information relevant for the patient by using analogies. Different types of information may be shared based on the oncologist's perception of patient- or family-initiated question. The information relay may be curtailed based on competing demands for the oncologist. Discussion and Conclusions Oncologists provide women with information on their disease status, their treatment options and the side effects of treatment. The oncologists use perceptions to determine what information and how to provide information. The question this paper raises is whether the oncologist's perceptions reflect the individual patient's information and decision-making needs.

Objective To systematically review quantitative and qualitative studies exploring physician–adult patient–adult companion (triadic) communication and/or decision-making within all medical encounters. Methods Studies were identified via database searches and reference lists. One author assessed eligibility of studies, verified by two co-authors. Data were extracted by one author and cross-checked for accuracy. Two authors assessed the quality of included articles using standardized criteria. Results Of the 8409 titles identified, 52 studies were included. Summary statements and tables were developed for each of five identified themes. Results indicated companions regularly attended consultations, were frequently perceived as helpful, and assumed a variety of roles. However, their involvement often raised challenges. Patients with increased need were more often accompanied. Some companion behaviours were felt to be more helpful (e.g. informational support) and less helpful (e.g. dominating/demanding behaviours), and preferences for involvement varied widely. Conclusion Triadic communication in medical encounters can be helpful but challenging. Based on analysis of included studies, preliminary strategies for health professionals are proposed. Practice implications Preliminary strategies for health professionals include (i) encourage/involve companions, (ii) highlight helpful companion behaviours, (iii) clarify and agree upon role preferences of patient/companions. Future studies should develop and evaluate specific strategies for optimizing triadic consultations.

Objective Family caregivers are regularly involved in cancer consultations and treatment decision-making (DM). Yet there is limited conceptual description of caregiver influence/involvement in DM. To address this, an empirically-grounded conceptual framework of triadic DM (TRIO Framework) and corresponding graphical aid (TRIO Triangle) were developed. Methods Jabareen’s model for conceptual framework development informed multiple phases of development/validation, incorporation of empirical research and theory, and iterative revisions by an expert advisory group. Results Findings coalesced into six empirically-grounded conceptual insights: i) Caregiver influence over a decision is variable amongst different groups; ii) Caregiver influence is variable within the one triad over time; iii) Caregivers are involved in various ways in the wider DM process; iv) DM is not only amongst three, but can occur among wider social networks; v) Many factors may affect the form and extent of caregiver involvement in DM; vi) Caregiver influence over, and involvement in, DM is linked to their everyday involvement in illness care/management. Conclusion The TRIO Framework/Triangle may serve as a useful guide for future empirical, ethical and/or theoretical work. Practice implications This Framework can deepen clinicians’s and researcher’s understanding of the diverse and varying scope of caregiver involvement and influence in DM.

Shared decision making is now making inroads in health care professionals' continuing education curriculum, but there is no consensus on what core competencies are required by clinicians for effectively involving patients in health-related decisions. Ready-made programs for training clinicians in shared decision making are in high demand, but existing programs vary widely in their theoretical foundations, length, and content. An international, interdisciplinary group of 25 individuals met in 2012 to discuss theoretical approaches to making health-related decisions, compare notes on existing programs, take stock of stakeholders concerns, and deliberate on core competencies. This article summarizes the results of those discussions. Some participants believed that existing models already provide a sufficient conceptual basis for developing and implementing shared decision making competency-based training programs on a wide scale. Others argued that this would be premature as there is still no consensus on the definition of shared decision making or sufficient evidence to recommend specific competencies for implementing shared decision making. However, all participants agreed that there were 2 broad types of competencies that clinicians need for implementing shared decision making: relational competencies and risk communication competencies. Further multidisciplinary research could broaden and deepen our understanding of core competencies for shared decision making training.

The pan-Canadian Oncology Drug Review (pCODR) makes recommendations to Canada’s provinces and territories (except Quebec) to guide their cancer drug funding decisions. The objective of this paper is to explore, using an economic perspective and the pCODR as an example, the challenges associated with striving to simultaneously achieve the goals of maximizing health benefits with available resources and improving access to a more consistent standard of care across Canada. The first challenge concerns how to interpret the goals in order to determine how resources should be allocated to achieve each goal. The second challenge relates to whether, if pursued simultaneously, both goals can be achieved to the same extent that each goal could have been achieved alone with the same available resources. Regarding the first challenge, we illustrate that, due to a lack of definitional clarity, it is difficult to determine exactly how resources should be allocated in order to achieve the goal of improving access to a more consistent standard of care across Canada. Regarding the second challenge, we illustrate that choosing to strive for both of the pCODR goals simultaneously will likely be associated with tradeoffs in the extent to which one or both goals can be achieved (relative to what could have been achieved for each goal alone with the same available resources). We suggest that, if the pCODR and the provincial drug plan decision-makers it supports want to strive for both goals simultaneously, they must prioritize the goals and explicitly identify the tradeoffs associated with the prioritization. This will ensure that the consequences of striving to simultaneously achieve both goals are explicit, transparent, and predictable for provincial drug plan decision-makers, physicians, patients, caregivers, and society as a whole. Keywords: resource allocation; health technology assessment; oncology; cancer; pan-Canadian oncology drug review (pCODR); drug reimbursement; drug funding; health policy (Published: 21 July 2016) Citation: Journal of Market Access & Health Policy 2016, 4 : 31463 - http://dx.doi.org/10.3402/jmahp.v4.31463

Context Promoting patient participation in treatment decision making is of increasing interest to researchers, clinicians and policy makers. Decision aids (DAs) are advocated as one way to help achieve this goal. Despite their proliferation, there has been little agreement on criteria or standards for evaluating these tools. To fill this gap, an international collaboration of researchers and others interested in the development, content and quality of DAs have worked over the past several years to develop a checklist and, based on this checklist, an instrument for determining whether any given DA meets a defined set of quality criteria. Objective/Methods In this paper, we offer a framework for assessing the conceptual clarity and evidence base used to support the development of quality criteria/standards for evaluating DAs. We then apply this framework to assess the conceptual clarity and evidence base underlying the International Patient Decision Aids Standards (IPDAS) checklist criteria for one of the checklist domains: how best to present in DAs probability information to patients on treatment benefits and risks. Conclusion We found that some of the central concepts underlying the presenting probabilities domain were not defined. We also found gaps in the empirical evidence and theoretical support for this domain and criteria within this domain. Finally, we offer suggestions for steps that should be undertaken for further development and refinement of quality standards for DAs in the future.

Rationale Evidence-based medicine (EBM) is commonly advocated as a ‘gold standard’ of clinical practice. A prominent definition of EBM is: the integration of best research evidence with clinical expertise and patient values. Over time, various versions of a conceptual model or framework for implementing EBM (i.e. how to practice EBM) have been developed. Aims and objectives This paper (i) traces the evolution of the different versions of the conceptual model; (ii) tries to make explicit the underlying goals, assumptions and logic of the various versions by exploring the definitions and meaning of the components identified in each model, and the methods suggested for integrating these into clinical practice; and (iii) offers an analytic critique of the various model iterations. Methods A literature review was undertaken to identify, summarize, and compare the content of articles and books discussing EBM as a conceptual model to guide physicians in clinical practice. Results Our findings suggest that the EBM model of clinical practice, as it has evolved over time, is largely belief-based, because it is lacking in empirical evidence and theoretical support. The model is not well developed and articulated in terms of defining model components, justifying their inclusion and suggesting ways to integrate these in clinical practice. Conclusion These findings are significant because without a model that clearly defines what constitutes an EBM approach to clinical practice we cannot (i) consistently teach clinicians how to do it and (ii) evaluate whether it is being done.

Purpose Modern neuraxial labour analgesia reflects a shift in obstetrical anesthesia thinking – away from a simple focus on pain relief towards a focus on the overall quality of analgesia. However, advances in the methods used to measure outcomes have not kept pace with clinical progress, and these approaches must evolve to facilitate meaningful assessment of the advances provided towards the quality of analgesia. Developing a tool to measure the quality of neuraxial labour analgesia that research has achieved is best guided by women’s perspectives. As the initial step in developing an instrument to quantitatively measure quality neuraxial labour analgesia, this qualitative descriptive study explored childbearing women’s experiences and perspectives regarding this subject.

Aims Decision aids in practice may affect patient trust in the clinician, a requirement for optimal diabetes care. We sought to determine the impact of a decision aid to help patients with diabetes decide about statins (Statin Choice) on patients’ trust in the clinician. Methods We randomized 16 diabetologists and 98 patients with type 2 diabetes referred to a subspecialty diabetes clinic to use the Statin Choice decision aid or a patient pamphlet about dyslipidaemia, and then to receive these materials from either the clinician during the visit or a researcher prior to the visit. Providers and patients were blinded to the study hypothesis. Immediately after the clinical encounter, patients completed a survey including questions on trust (range 0 to total trust = 100), knowledge, and decisional conflict. Researchers reviewed videotaped encounters and assessed patient participation (using the OPTION scale) and visit length. Results Overall mean trust score was 91 (median 97.2, IQR 86, 100). After adjustment for patient characteristics, results suggested greater total trust (trust = 100) with the decision aid [odds ratio (OR) 1.77, 95% CI 0.94, 3.35]. Total trust was associated with knowledge (for each additional knowledge point, OR 1.3, 95% CI 1.1, 1.6), patient participation (for each additional point in the OPTION scale, OR 1.1, 95% CI 1.1, 1.2), and decisional conflict (for every 5-point decrease in conflict, OR 1.5, 95% CI 1.2, 1.9). Total trust was not associated with visit length, which the decision aid did not significantly affect. There was no significant effect interaction across the trial factors. Conclusions Preliminary evidence suggests that decision aids do not have a large negative impact on trust in the physician and may increase trust through improvements in the decision-making process.

Purpose Decision aids (DAs) have been developed to improve communication between health professionals and patients, and to involve patients in decisions about their health care. Cancer-related decisions can be difficult due to problems in communicating complex information about prognosis and the modest benefits of available treatments. We conducted a systematic review of cancer-related DAs. Methods Randomized controlled trials (RCTs) of cancer-related DAs about screening, prevention, and treatment decision making were included. We completed a comprehensive literature search and conducted both qualitative and quantitative analyses. We also conducted a meta regression to explore heterogeneity of effect estimates. Results We identified 34 RCTs of DAs in a screening (n = 22 trials) or preventive/treatment (n = 12 trials) context. DAs significantly improved knowledge about screening options when compared to usual practice (weighted average effect size, 0.50; 95% CI, 0.27 to 0.73; P < .0001). A similar effect on knowledge was also found for preventive/treatment options (weighted average effect size, 0.50; 95% CI, 0.31 to 0.70; P < .0001). Overall, general anxiety was not increased in most trials and was significantly reduced in a screening context. Decisional conflict was reduced overall but not when screening and preventive/treatment studies were analyzed separately. There were few differences between different types of DAs. Conclusion Cancer-related DAs are effective in increasing patient knowledge compared with usual practice without increasing anxiety particularly in the area of cancer screening. Further research is needed to determine the effectiveness of DAs in the prevention and treatment context.

Objective There is limited understanding about what treatment decision making (TDM) means to patients. The study objective was to identify any processes or stages of TDM as perceived by women with early stage breast cancer (ESBC). Methods Initial consultations with a surgeon or medical oncologist were videotaped. Subsequently, women viewed their consultation using a qualitative approach with video-stimulated recall (VSR) interviews. Interviews were taped, transcribed, and analyzed. Results There were 6 surgical and 15 medical oncology (MO) consultations. Most women described TDM as beginning soon after diagnosis and involving several processes including gathering information from informal and formal networks and identifying preferred treatment options before the specialist consultation. Many women wanted more information from their surgeon so they could engage in subsequent TDM with their medical oncologist. Conclusion In this study, women with ESBC began TDM soon after diagnosis and used several iterative processes to arrive at a decision about their cancer treatment. VSR interviews can be useful to investigate TDM occurring during the consultation. Practice implications Women with ESBC rely on information provided by their surgeons and family physicians to make treatment decisions about surgery and also to prepare them for subsequent discussions with medical oncologists about chemotherapy.

Objectives: This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research. Design: The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada. Measurements: We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one's own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data. Results: Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income. Conclusions: Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one's health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.

The authors used a transcendental phenomenological approach to describe adolescent mothers' satisfactory and unsatisfactory inpatient postpartum nursing care experiences. They analyzed data from 14 in-depth interviews and found that adolescent mothers' satisfaction is dependent on their perceptions of the nurse's ability to place them “at ease.” Nursing care qualities that contributed to satisfactory experiences included nurses' sharing information about themselves, being calm, demonstrating confidence in mothers, speaking to adolescent and adult mothers in the same way, and anticipating unstated needs. Nursing care was perceived to be unsatisfactory when it was too serious, limited to the job required, or different from care to adult mothers, or when nurses failed to recognize individual needs. In extreme cases, unsatisfactory experiences hindered development of an effective nurse-client relationship. These findings illustrate the value of qualitative inquiry for understanding patients' satisfaction with care, can be used for self-reflection, and have implications for nursing education programs.

ObjectivesThe treatment decision-making (TDM) process in the medical encounter in ovarian cancer (OC) is directed by oncologists. There is little information on oncologists’ perceptions of this process. Our objectives were to explore oncologists’ perceptions concerning (1) patients’ preference for involvement in TDM, (2) factors that affect when to introduce this discussion, and (3) strategies used for engaging women in TDM.MethodsWe adopted a qualitative descriptive approach. Individual in-person interviews were used to collect data; themes were identified.ResultsFifteen gynecologic and 5 medical oncologists from Ontario, Canada, participated. We found that oncologists made the assumption that women with recurrent OC were interested in being involved in TDM but rarely reported attempting to validate this assumption. The oncologists timed the initiation of the TDM discussion based on their degree of certainty of recurrent OC and their perception of the patient’s readiness to be involved in TDM. Oncologists reported using strategies to engage women such as getting the women to take ownership of the decision, verbalize their priorities, lead the discussions, and giving the opportunity to gather information.ConclusionsOncologists need to listen to each patient rather than make assumptions about the person based on her disease.

Objective Little is known about how family are involved in cancer treatment decision-making. This study aimed to qualitatively explore Australian oncology clinicians’, patients’, and family members’ attitudes towards, and experiences of, family involvement in decision-making. Methods Semi-structured interviews were conducted with 30 cancer patients, 33 family members, 10 oncology nurses and 11 oncologists. Framework analysis methods were used. Results Three main themes were uncovered: (i) how family are involved in the decision-making process: specific behaviours of family across 5 (extended) decision-making stages; (ii) attitudes towards family involvement in the decision-making process: balancing patient authority with the rights of the family; and (iii) factors influencing family involvement: patient, family, cultural, relationship, and decision. Conclusion This study highlighted many specific behaviours of family throughout the decision-making process, the complex participant attitudes toward retaining patient authority whilst including the family, and insight into influencing factors. These findings will inform a conceptual framework describing family involvement in decision-making. Practice implications Clinicians could ascertain participant preferences and remain open to the varying forms of family involvement in decision-making. Given the important role of family in the decision-making process, family inclusive consultation strategies are needed.

Objective In this paper we discuss the influence of culture on the process of treatment decision-making, and in particular, shared treatment decision-making in the physician–patient encounter. We explore two key issues: (1) the meaning of culture and the ways that it can affect treatment decision-making; (2) cultural issues and assumptions underlying the development and use of treatment decision aids. Methods This is a conceptual paper. Based on our knowledge and reading of the key literature in the treatment decision-making field, we looked for written examples where cultural influences were taken into account when discussing the physician–patient encounter and when designing instruments (decision aids) to help patients participate in making decisions. Results Our assessment of the situation is that to date, and with some recent exceptions, research in the above areas has not been culturally sensitive. Conclusion We suggest that more research attention should be focused on exploring potential cultural variations in the meaning of and preferences for shared decision-making as well as on the applicability across cultural groups of decision aids developed to facilitate patient participation in treatment decision-making with physicians. Practice implications Both patients and physicians need to be aware of the cultural assumptions underlying the development and use of decision aids and assess their cultural sensitivity to the needs and preferences of patients in diverse cultural groups.

Objective To explore the application of the original Charles et al. model of shared treatment decision-making [Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681–92; Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 1999;49:651–61] in the context of general practice, and to determine whether the model needs tailoring for use in this clinical context. Methods Conceptual paper, presenting the defining characteristics of general practice compared to the original clinical context for which the model was developed (i.e. life threatening disease with different treatment options), and exploring how the model can be tailored for use in the context of general practice. Results We identify two areas where the original model requires tailoring: sharing the decision-making around agreeing on an agenda for each consultation; and adapting the information transfer component of the model to acknowledge that doctors may not be the only, or even the main, source of technical information for patients. Finally, we explore the importance of shared decision-making in the context of chronic disease. Conclusion The Charles et al. model can be tailored for use in general practice. Practice implications Tailoring the model for use in general practice has implications for research, in terms of identifying the additional physician competencies needed for implementation. Policy makers who wish to promote shared decision-making need to ensure that incentives which prioritize access and health outcomes do not militate against shared decision-making in general practice.

Aim. To test the validity of The Newcastle Satisfaction with Nursing Scales as measures of patient satisfaction with nursing care in an inpatient postpartum unit. Background. The Newcastle Satisfaction with Nursing Scales (Experience of Nursing Care Scale and Satisfaction with Nursing Care Scale) were developed to measure the satisfaction of medical-surgical inpatients with nursing care. Methods. The Newcastle Satisfaction with Nursing Scales were administered by interviewers to 189 postpartum women prior to hospital discharge. We tested the construct validity of the scales by making five a priori predictions: mothers who were more satisfied would be more likely to have one nurse caring for them and to recommend the postpartum unit to a friend. We also predicted that the Experience of Nursing Care and Satisfaction with Nursing Care Scales would be positively correlated with each other, with a global question about satisfaction with nursing care, and with a global question about satisfaction with overall postpartum stay. Results. Four of the five a priori predictions were supported by the data. The mean Newcastle Satisfaction with Nursing Scale scores of mothers who would recommend the unit to a friend were higher (more satisfied) than those who would not (P

Purpose: Physicians are urged to practice shared treatment decision making (STDM), yet this concept is poorly understood. We developed a conceptual framework describing essential characteristics of a shared approach. This study assessed the degree of congruence in the meanings of STDM as described in the framework and as perceived by practicing physicians. Methods: A cross-sectional survey questionnaire was mailed to eligible Ontario medical and radiation oncologists and surgeons treating women with early-stage breast cancer. Open-ended and structured questions elicited physicians’ perceptions of shared decision making. Results: Most study physicians spontaneously described STDM using characteristics identified in the framework as essential to this concept. When presented with clinical examples in which the decision-making roles of physicians and patients were systematically varied, study physicians overwhelmingly identified example 4 as illustrating a shared approach. This example was deliberately constructed to depict STDM as defined in the framework. In addition, more than 85.0% of physicians identified as important to STDM specific patient and physician roles derived from the framework. These included the following: the physician gives information to the patient on treatment benefits and risks; the patient gives information to the physician about her values; the patient and physician discuss treatment options; both agree on the treatment to implement. Conclusion: Substantial congruence was found between the meaning of STDM as described in the framework and as perceived by study physicians. This supports use of the framework as a conceptual tool to guide research, compare different treatment decision-making approaches, clarify the meaning of STDM, and enhance its translation into practice.

Objectives To identify in women with advanced epithelial ovarian cancer who had just undergone surgery the extent to which they (1) perceived that they had treatment options, (2) understood the treatment related risks and benefits, and (3) preferred to participate in the treatment decision-making process. Methods This qualitative study included women who underwent initial surgery for stage 3 or 4 ovarian cancer and who had received less than two cycles of chemotherapy. In depth semistructured interviews were conducted with 21 patients between June 1999 and February 2001. The interviews were content analyzed according to the themes that arose in the interview. Results Five themes were identified. (1) Knowledge of treatment benefits and risks . Women understood that the treatment had both survival and quality of life benefits. Women could clearly articulate the risks of chemotherapy. (2) Readiness to make a decision . When making treatment decisions, women described being overwhelmed by the effects of concurrent drugs like analgesics, the severity of the illness, unexpected diagnosis of cancer and grief, and feeling pressured into a decision. (3) Perception of a treatment choice . Most women felt that they made their treatment decision; however, most women did not perceive that they had a treatment choice. Thus, treatment decision making is really a process of coming to terms with the disease and the recommended treatment. (4) Physician–patient relationship . All women suggest that their doctor knew the right treatment for them and they felt confident in their cancer physician. (5) Social supports . Women described supports through decision-making processes that included individuals who advocated for them, faith, and past experience with the cancer system. Hindrances to decision making included people who were negative, the cancer label, and employers. Conclusions Women with advanced epithelial ovarian cancer did not describe the treatment decision-making process as shared; rather they described an interaction that was directed largely by the physician. These women attribute this form of decision-making to their advanced age, severity of illness, immediate ramification of treatment choices, and lack of advocacy for a different model of interaction. Thus, the onus is on the physician to ensure that there is an environment for shared decision-making in the event that the patient is interested in such an interaction.

In Canada, there are two separate review processes for the public reimbursement of drugs: one for cancer drugs (originally called the Joint Oncology Drug Review [JODR] and now called the pan-Canadian Oncology Drug Review [pCODR]) and one for drugs in all other disease areas (called the Common Drug Review). We explore whether a justification that is derived from an economic perspective has been provided, in Canada or elsewhere, for cancer drugs to have a separate reimbursement review process (i.e. to be ‘treated separately’) relative to drugs in all other disease areas. Literature reviews and internet searches were undertaken to identify, collect and analyze relevant documents that would provide information regarding whether an economic rationale has been provided for cancer drugs to be treated separately for resource allocation purposes. Although a number of reasons for cancer drugs to be treated separately were cited both by the JODR and pCODR and in the peer-reviewed literature, a rationale derived from an economic perspective did not appear to be documented. From an economic perspective, separating cancer drugs for resource allocation purposes is likely to impede drug plan decision makers’ ability to allocate resources in a manner that maximizes the total aggregate health benefit for the population from available resources. While we acknowledge the challenges that cancer drugs pose to drug reimbursement decision makers, we suggest that separating the reimbursement review of cancer drugs requires further scrutiny.

Background For early stage breast cancer, randomized controlled trials (RCTs) have shown that patient decision aids (PtDAs), when used by surgeons, result in increased patient knowledge about options and different patient treatment choices as compared to standard care. Yet, recent data suggests that PtDAs are used by less than 25% of Canadian cancer physicians. We conducted a study to explore breast cancer surgeons’ views on enablers and barriers to the use of PtDAs in their practice. Methods Purposeful sampling was used to select breast cancer surgeons in three Ontario health regions to participate in semi-structured interviews. Inductive coding and the constant comparative method were used to identify the main themes. Results Twenty-two surgeons (79%) agreed to participate (median age, 50 years; 9 (40%) female). Surgeons practiced in academic (n = 7, 32%) or community (n = 15, 68%) hospitals. Fourteen surgeons were aware of PtDAs, nine had used a PtDA with patients as part of an RCT, and six had developed their own informal PtDA for use in their practice. Enablers of informal PtDA use included surgeon exposure during training and surgeon perceived need for a systematic approach when communicating risks and benefits of surgical treatments with patients. Barriers to formal PtDA use included high surgeon confidence in their verbal communication skills, surgeon belief that patients understood conveyed information, and difficulties embedding such tools in practice routines. Conclusions Surgeons in this study valued systematic communication with patients. Several surgeons changed their practice to include formal or informal PtDAs provided they perceived there was a clear benefit to themselves or to patients. However, high surgeon confidence in their personal communications skills coupled with beliefs that patients understand conveyed information may be key barriers to PtDA uptake once surgeons have established communication routines.

One session of the conference was devoted to the presentation of different types of decision aids. This paper reports the experience and lessons learned through the development and use of the Decision Board. This is a uniquely interactive decision aid administered by the clinician during the medical consultation. The instrument has been developed in a number of clinical contexts, primarily regarding treatment options for cancer patients. Studies have shown the instrument to improve patient understanding and facilitate the shared decision-making process. Randomized trials are ongoing, evaluating the addition of the Decision Board to the traditional medical consultation. The instrument continues to evolve to meet patients' need for information and flexibility in presentation. Computer-based versions of the Decision Board are currently being developed.

In this paper we revisit and add elements to our earlier conceptual framework on shared treatment decision-making within the context of different decision-making approaches in the medical encounter (Charles, C., Gafni, A., Whelan, T., 1997. Shared decision-making in the medical encounter: what does it mean? (or, it takes at least two to tango). Social Science & Medicine 44, 681 692.). This revised framework (1) explicitly identifies different analytic steps in the treatment decision-making process; (2) provides a dynamic view of treatment decision-making by recognizing that the approach adopted at the outset of a medical encounter may change as the interaction evolves; (3) identifies decision-making approaches which lie between the three predominant models (paternalistic, shared and informed) and (4) has practical applications for clinical practice, research and medical education. Rather than advocating a particular approach, we emphasize the importance of flexibility in the way that physicians structure the decision-making process so that individual differences in patient preferences can be respected.

In creating and performing music, musicians can experience health problems from the high physical and psychological demands of their profession. Musculoskeletal disorders related to playing are painful, chronic and disabling conditions which are prevalent among classical musicians. The widespread study of the prevalence, etiology, and management of playing-related musculoskeletal disorders (PRMDs) is a recent development known as performing arts medicine. Despite the rapid development of this new field, it is unclear how musicians identify themselves as injured, and how they make decisions about what, if anything, to do about these disabling injuries. The aims of our study were two-fold. First, we aimed to provide musicians with the opportunity to define a PRMD in their own words. Second, we sought to understand the subjective meaning of the PRMD experience to musicians. Two key informants identified 30 study participants in Ontario and Quebec, Canada. As a form of data triangulation, participants included 27 musicians and three health professionals. Data were collected in semi-structured interviews which lasted, on average, 40 min. Data were transcribed, and were manually coded and analyzed. Participants defined a PRMD as pain and other symptoms which are chronic, are beyond their control, and which interfere with their ability to play their instrument at their usual level. Participants distinguished between "normal", mild everyday aches and pains, and a PRMD. Although a PRMD is not a medically serious or life-threatening illness, it is devastating to musicians physically, emotionally, socially, and financially. The overall theme of suffering captures the meaning of these problems which threaten the identity of the musician. The findings of this study are consistent with other studies of the experience of work-related musculoskeletal disorders, and other illnesses.

Assuming a goal of arriving at a treatment decision which is based on the physician's knowledge and the patient's preferences, we discuss the feasibility of implementing two treatment decision-making models: (1) the physician as a perfect agent for the patient, and (2) the informed treatment decision-making models. Both models fall under the rubric of agency models, however, the requirements from the physician and the patient are different. An important distinction between the two models is that in the former the patient delegates authority to her doctor to make medical decisions and thus the challenge is to encourage the physician to find out the patient's preferences. In the latter, the patient retains the authority to make medical decisions and the physician role is that of information transfer. The challenge here is to encourage the physician to transfer the knowledge in a clear and nonbiased way. We argue that the choice of model depends among other things on the ease of implementation (e.g., is it simpler to transfer patient's preferences to doctors or to transfer technical knowledge to patients?). Also the choice of treatment decision-making model is likely to have an impact on the type of incentives or regulations (i.e., contracts) needed to promote the chosen model. We show that in theory both models result in the same outcome. We argue that the approach of transferring information to the patient is easier (but not easy) and, hence, more feasible than transferring each patient's preferences to the physician in each medical encounter. We also argue that because better "technology" exists to transfer medical information to patients and time costs are involved in both tasks (i.e. transferring preferences or information), it is more feasible to design contracts to motivate physicians to transfer information to patients than to design contracts to motivate physicians to find out their patients' utility functions. We illustrate our arguments using a clinical example of the choice of adjuvant chemotherapy versus no adjuvant chemotherapy for women with early stage breast cancer. We also discuss issues relating to the current realities of clinical practice and their potential implications for the way that economists model physician-patient clinical encounters.

Open-ended personal interviews were conducted with 20 women with early stage breast cancer attending a regional cancer centre in Southwestern Ontario. We explored three related issues: (1) the extent to which these women perceived that they had treatment options; (2) their understanding of treatment benefits and risks; and (3) the role they wanted for themselves and their oncologists in treatment decision-making. We found, first, that many women who were presented with the choice to undergo some form of adjuvant treatment versus no treatment felt that ‘doing nothing was no choice’. Second, when interpreting probabilistic information on treatment benefits and risks, some women retained the idea of probability but thought that they personally would beat the odds. Others transformed the information to make it more personally meaningful, and still others assessed their risk status by comparing themselves with friends or relatives having the same disease. Third, many women preferred some form of shared treatment decision-making process with their oncologists. Women perceived treatment decisions as either ‘right’ or ‘wrong’ which raised the issue of blame for a ‘bad’ decision should the cancer return. Implications of these findings for clinical practice and for models of treatment decision-making are discussed.