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Background: Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs). To achieve optimal health outcomes in MS, it is important to understand factors that contribute to positive or negative healthcare experiences. Previous studies have shown that PwMS want clear communication and in‐depth relationships with their HCPs. However, many studies have lacked qualitative feedback from HCPs. Objective: This study aimed to investigate healthcare experiences of PwMS and HCPs and identify areas that are working well and areas that could be improved. Methods: Semistructured interviews with 15 PwMS and 11 HCPs (seven neurologists, four MS nurses) from across Australia were conducted. Interviews were transcribed verbatim and analysed thematically. Results: Both PwMS and HCPs valued clear communication, recognized uncertainties associated with MS and highlighted the importance of rapport. PwMS focused on decision‐making, understanding roles and expectations, self‐directed management and their needs for support. HCPs discussed issues related to medical management, providing hope and reassurance, barriers to healthcare and multidisciplinary care. Conclusion: Greater transparency and communication, particularly around the approach to care and the roles played by HCPs, is likely to enhance healthcare experiences and contribute to better health outcomes for PwMS. Public Contribution: PwMS and HCPs volunteered to be interviewed, and PwMS assisted with the development of interview content and structure. [ABSTRACT FROM AUTHOR]

Within medical and bioethical discourse, there are many models depicting the relationships between, and roles of, physician and patient in medical decision making. Contestation similarly exists over the roles of physician and patient with regard to the decision not to provide cardiopulmonary resuscitation (CPR) following cardiac arrest [the do-not-resuscitate or do-not-resuscitate (DNR) decision], but there is little analysis of patient perspectives. Analyse what patients with cancer within weeks before dying say about the decision to forego CPR and the roles of patient and physician in this decision. Discursive analysis of qualitative data gathered during semi-structured interviews with 28 adult cancer patients close to death and attending palliative or oncology clinics of an Australian teaching hospital. Participants' descriptions of appropriate patient or physician roles in decisions about CPR appeared related to how they conceptualized the decision: as a personal or a medical issue, with patient and doctor respectively identified as appropriate decision makers; or alternatively, both medical and personal, with various roles assigned embodying different versions of a shared decision-making process. Participants' endorsement of physicians as decision makers rested upon physicians' enactment of the rational, knowledgeable and compassionate expert, which legitimized entrusting them to make the DNR decision. Where this was called into question, physicians were positioned as inappropriate decision makers. When patients' and physicians' understandings of the best decision, or of the preferred role of either party, diverge, conflict may ensue. In order to elicit and negotiate with patient preferences, flexibility is required during clinical interactions about decision making. [ABSTRACT FROM AUTHOR]

Shared Decision Making (SDM) is widely accepted as the preferred method for reaching treatment decisions in the oncology setting including those about clinical trial participation: however, there is some disagreement between researchers over the components of SDM. Specific standardized coding systems are needed to help overcome this difficulty. The first objective was to describe the development of an oncology specific SDM coding system, the DAS-O. The second objective was to provide reliability and validity data supporting the DAS-O. Consultation data were available from tertiary cancer center out patient oncology clinics in: Australia, New Zealand (ANZ), Switzerland, Germany and Austria (SGA). Patients were women with a confirmed diagnosis of early stage breast cancer. Reliability data were from 18 randomly selected coded transcripts drawn from ANZ and SGA. Concurrent validity data are from 55 (ANZ) consultations. Inter and Intra rater reliability data was evaluated using Kappa correlation statistics and correlation coefficients. Correlation coefficients were used to assess concurrent validity between the DAS-O and two other SDM coding systems, OPTION and DSAT. Inter and Intra rater reliability for the system were high with average Kappas of 0.58 and 0.65 respectively. Correlation coefficients between DAS-O and OPTION was 0.73 and >0.5 for DSAT. We have developed a reliable and valid coding system for identifying and rating the quality of SDM in breast cancer consultations. [ABSTRACT FROM AUTHOR]