Discussing uncertainty and risk in primary care: recommendations of a multi-disciplinary panel regarding communication around prostate cancer screening.

BackgroundShared decision making improves value-concordant decision-making around prostate cancer screening (PrCS). Yet, PrCS discussions remain complex, challenging and often emotional for physicians and average-risk men.ObjectiveIn July 2011, the Centers for Disease Control and Prevention convened a multidisciplinary expert panel to identify priorities for funding agencies and development groups to promote evidence-based, value-concordant decisions between men at average risk for prostate cancer and their physicians.DesignTwo-day multidisciplinary expert panel in Atlanta, Georgia, with structured discussions and formal consensus processes.ParticipantsSixteen panelists represented diverse specialties (primary care, medical oncology, urology), disciplines (sociology, communication, medical education, clinical epidemiology) and market sectors (patient advocacy groups, Federal funding agencies, guideline-development organizations).Main measuresPanelists used guiding interactional and evaluation models to identify and rate strategies that might improve PrCS discussions and decisions for physicians, patients and health systems/society. Efficacy was defined as the likelihood of each strategy to impact outcomes. Effort was defined as the relative amount of effort to develop, implement and sustain the strategy. Each strategy was rated (1-7 scale; 7 = maximum) using group process software (ThinkTank(TM)). For each group, intervention strategies were grouped as financial/regulatory, educational, communication or attitudinal levers. For each strategy, barriers were identified.Key resultsHighly ranked strategies to improve value-concordant shared decision-making (SDM) included: changing outpatient clinic visit reimbursement to reward SDM; development of evidence-based, technology-assisted, point-of-service tools for physicians and patients; reframing confusing prostate cancer screening messages; providing pre-visit decision support interventions; utilizing electronic health records to promote benchmarking/best practices; providing additional training for physicians around value-concordant decision-making; and using re-accreditation to promote training.ConclusionsConference outcomes present an expert consensus of strategies likely to improve value-concordant prostate cancer screening decisions. In addition, the methodology used to obtain agreement provides a model of successful collaboration around this and future controversial cancer screening issues, which may be of interest to funding agencies, educators and policy makers

Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)

Background: This paper reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. Method: The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. Results: Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. Conclusions: The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however its limitations must be recognised

Exploring the Relationship between Callous-Unemotional Traits, Empathy Processing and Affective Valence in a General Population

Callous-Unemotional (CU) traits are personality attributes, which are associated with a deficit of affective valence and reduced empathetic responding in high CU trait clinical populations (Guay, Ruscio, Knight, & Hare, 2007). The aim of the research was to explore whether a similar pattern of empathy and emotional responding correlated with CU trait manifestation in the general population. A total of 124 participants completed the Inventory of Callous-Unemotional Traits (Frick, 2004), the Interpersonal Reactivity Index (Davis, 1983), the Empathy Quotient (Baron-Cohen & Wheelwright, 2004), an expression recognition task, and a measure of affective response. Negative correlations with CU trait score were observed for both cognitive empathy and emotional empathy. Accuracy in the identification of fearful expressions presented a negative association with CU trait score. Self-rating of affective valence, when viewing both positive and negative images, indicates a universal reduction in emotional response associated with increased CU trait manifestation

I felt that I deserved it - experiences and implications of disability hate crime

Purpose – The purpose of this paper is to summarise key findings and recommendations from the “Living in Fear” research project focusing on the experiences of people with learning disabilities and autism related to disability hate crime and the experience of the police in dealing with such incidents. Design/methodology/approach – Methods included: first, a postal survey with 255 people with learning disabilities or autism (or their carers for people with more severe disabilities), of whom 24 also took part in semi-structured interviews; and second, an electronic survey of the knowledge and experience of 459 police officers or support staff. Findings – Just under half of participants had experienced some form of victimisation. The Police reported problems with the definition of disability hate crime and challenges to responding effectively. Social implications – A case study from the research highlights some of the key findings and is linked to implications for people with learning disabilities and autism, carers, police and other agencies. Originality/value – Previous research has highlighted that victimisation is an issue for this group of people, but has never explored the prevalence and nature of such experiences in a representative sample. Neither has previous research brought together the perspectives of so many different agencies to offer recommendations that go across many sectors. The paper will be of interest to people with disabilities and their carers, professionals in health, social care and the Criminal Justice system

A new approach to generating research-quality data through citizen science: The USA National Phenology Monitoring System

Phenology is one of the most sensitive biological responses to climate change, and recent changes in phenology have the potential to shake up ecosystems. In some cases, it appears they already are. Thus, for ecological reasons it is critical that we improve our understanding of species’ phenologies and how these phenologies are responding to recent, rapid climate change. Phenological events like flowering and bird migrations are easy to observe, culturally important, and, at a fundamental level, naturally inspire human curiosity— thus providing an excellent opportunity to engage citizen scientists. The USA National Phenology Network has recently initiated a national effort to encourage people at different levels of expertise—from backyard naturalists to professional scientists—to observe phenological events and contribute to a national database that will be used to greatly improve our understanding of spatio-temporal variation in phenology and associated phenological responses to climate change.

Traditional phenological observation protocols identify specific dates at which individual phenological events are observed. The scientific usefulness of long-term phenological observations could be improved with a more carefully structured protocol. At the USA-NPN we have developed a new approach that directs observers to record each day that they observe an individual plant, and to assess and report the state of specific life stages (or phenophases) as occurring or not occurring on that plant for each observation date. Evaluation is phrased in terms of simple, easy-to-understand, questions (e.g. “Do you see open flowers?”), which makes it very appropriate for a citizen science audience. From this method, a rich dataset of phenological metrics can be extracted, including the duration of a phenophase (e.g. open flowers), the beginning and end points of a phenophase (e.g. traditional phenological events such as first flower and last flower), multiple distinct occurrences of phenophases within a single growing season (e.g multiple flowering events, common in drought-prone regions), as well as quantification of sampling frequency and observational uncertainties. These features greatly enhance the utility of the resulting data for statistical analyses addressing questions such as how phenological events vary in time and space, and in response to global change. This new protocol is an important step forward, and its widespread adoption will increase the scientific value of data collected by citizen scientists.
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The Student Experience with Success Coaching as a Retention initiative

Community colleges have recently begun supplementing nonacademic support services with student success coaching to increase retention. While preliminary research indicates that coaching may positively influence student retention, little is known about the student experience with coaching. The objective of this dissertation was to understand how students perceive participating in a structured coaching relationship in the Coach2Success (C2S, a pseudonym) program as influencing their persistence at Midwest Community College (MCC, a pseudonym). Data for this qualitative case study was collected via semi-structured interviews and document analysis. Interviews were conducted with 11 student participants in the success coaching program who had been retained one or more semesters at MCC. Documents analyzed were the C2S program’s annual reports, which included participant and collegewide retention data as well as participant responses from annual surveys on C2S participant experience and satisfaction. Findings provided insight on the importance of the student-coach relationship as influencing student persistence. Specifically, students highlighted the importance of coaches fostering relationship development, goal-setting, and motivation with participants. These findings provide insights for practitioners interested in creating coaching programs, revamping existing programs, and/or adding a coaching element to other student support strategies

Country differences in the diagnosis and management of coronary heart disease : a comparison between the US, the UK and Germany

Background The way patients with coronary heart disease (CHD) are treated is partly determined by non-medical factors. There is a solid body of evidence that patient and physician characteristics influence doctors' management decisions. Relatively little is known about the role of structural issues in the decision making process. This study focuses on the question whether doctors' diagnostic and therapeutic decisions are influenced by the health care system in which they take place. This non-medical determinant of medical decision-making was investigated in an international research project in the US, the UK and Germany. Methods Videotaped patients within an experimental study design were used. Experienced actors played the role of patients with symptoms of CHD. Several alternative versions were taped featuring the same script with patients of different sex, age and social status. The videotapes were shown to 384 randomly selected primary care physicians in the three countries under study. The sample was stratified on gender and duration of professional experience. Physicians were asked how they would diagnose and manage the patient after watching the video vignette using a questionnaire with standardised and open-ended questions. Results Results show only small differences in decision making between British and American physicians in essential aspects of care. About 90% of the UK and US doctors identified CHD as one of the possible diagnoses. Further similarities were found in test ordering and lifestyle advice. Some differences between the US and UK were found in the certainty of the diagnoses, prescribed medications and referral behaviour. There are numerous significant differences between Germany and the other two countries. German physicians would ask fewer questions, they would order fewer tests, prescribe fewer medications and give less lifestyle advice. Conclusion Although all physicians in the three countries under study were presented exactly the same patient, some disparities in the diagnostic and patient management decisions were evident. Since other possible influences on doctors treatment decisions are controlled within the experimental design, characteristics of the health care system seem to be a crucial factor within the decision making process