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Background: Alzheimer's disease (AD) is recognized as one of the greatest global public health challenges. There is increasing consensus that optimal disease modification using pharmaceuticals may best be achieved earlier in the disease continuum before symptoms occur. However, more needs to be understood about what outcomes are meaningful to potential participants in clinical trials within this preventative paradigm and how people make trade‐offs between risks and benefits. The Electronic Person‐Specific Outcome Measure (ePSOM) programme is developing an app to capture person‐specific outcomes and preferences in clinical trials. Objective: As one phase in the ePSOM programme, this study explored what matters when developing new treatments to prevent AD and how trade‐offs are made between risks and benefits, from three perspectives. Design: Focus groups were conducted with people living with memory problems (n = 21) and healthy volunteers (n = 10), and telephone interviews with health and social care professionals (n = 10). Differences and overlap between the three groups were explored. Results: Outcomes that matter lie in five key domains in relation to what matters in everyday life: Everyday Functioning; Relationships and Social Connections; Enjoying Life; Sense of Identity; and Alleviating  Symptoms. Insights were gained into the significance of reducing the risk of developing dementia with drugs and the processes of weighing up risks versus benefits. Discussion and conclusions: The key domains identified are being used to inform the next stage of the ePSOM programme which is to develop a survey to be distributed nationally in the UK to explore these issues further. [ABSTRACT FROM AUTHOR]

Introduction Radiotherapy ( RT) is an essential and cost-effective cancer treatment. It is underutilised in Australia. Bridging the gap between actual and optimal RT utilisation requires not only provision of adequate RT infrastructure but also an understanding of the factors that influence the extent to which this opportunity for RT is utilised. This study explored factors perceived to affect RT-related decision making by consumers and health professionals ( HPs). Methods Six semi-structured focus groups ( FGs) and 13 interviews were conducted at three geographical locations in NSW, Australia ( n = 26 consumers and 30 HPs). Audio recordings of FGs and interviews were transcribed verbatim and analysed thematically. Results An exhaustive list of issues perceived to affect consumer and HP RT decisions was identified. There were common themes across participant groups and locations. Perceptions of RT and its benefits, as well as accurate communication of the expected benefits and risks of RT, were highlighted as important to decision making. Perceived factors relating to 'inconvenience' of RT were multifaceted and included travel, relocation, accommodation, time away from work and financial challenges. Perceived potential barriers to RT referral included knowledge of RT and RT services, availability of a local or visiting RT service, referrer bias, and the low profile of RT. Conclusions Important drivers during RT decisions appear to include the perceived benefit, risks and inconvenience of RT. Underutilisation of RT may also result from multiple barriers at the referrer level. Further research into whether these factors influence actual RT decisions is needed. [ABSTRACT FROM AUTHOR]

The article focuses on the findings of a survey on the perception of health professionals and consumers on involving breast cancer patients in the multidisciplinary discussion (MD) of their disease and treatment plan in Australia. The survey found that the majority of the respondents support shared decision-making. It cites that the common reasons for advocating patient involvement included providing patients with more information and an opportunity to ask questions. Patient advocates support the inclusion of women in the MD meeting.