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Background: The Surprise Question ('Would I be surprised if this patient died within 12 months?') identifies patients in the last year of life. It is unclear if 'surprised' means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries ('vignettes'). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently 'no') and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries (p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries (p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted. [ABSTRACT FROM AUTHOR]

Objectives: The MEETINGDEM research project aimed to implement the combined Dutch Meeting Centre Support Programme (MCSP) for community-dwelling people with dementia and caregivers within Italy, Poland and UK and to assess whether comparable benefits were found in these countries as in the Netherlands. Method: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared to usual care (UC) on caregiver outcomes measuring competence (SSCQ), mental health (GHQ-12), emotional distress (NPI-Q) and loneliness (UCLA) analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. Interviews using standardised measures were completed with caregivers. Results: Pre/post data were collected for 93 caregivers receiving MCSP and 74 receiving UC. No statistically significant differences on the outcome measures were found overall. At a country level MC caregivers in Italy showed significant better general mental health (p = 0.04, d = 0.55) and less caregiver distress (p = 0.02, d = 0.62) at post-test than the UC group. Caregiver satisfaction was rated on a sample at 3 months (n = 81) and 6 months (n = 84). The majority of caregivers reported feeling less burdened and more supported by participating in MCSP. Conclusion: The moderate positive effect on sense of competence and the greater mental health benefit for lonely caregivers using the MCSP compared to UC as found in the original Dutch studies were not replicated. However, subject to study limitations, caregivers in Italy using MCSP benefitted more regarding their mental health and emotional distress than caregivers using UC. Further evaluation of the benefits of MCSP within these countries in larger study samples is recommended. [ABSTRACT FROM AUTHOR]

Background: Shared decision-making (SDM) is a means of allowing people with dementia to take part in making choices, be autonomous and participate in social activities. Involving them in SDM is an important way of promoting social health. However, including families and dementia residents in decision-making can be challenging for care staff working in nursing homes. The objective of this study was to identify barriers and facilitators regarding the implementation of an SDM framework for care planning in two nursing homes, one in Italy and one in the Netherlands. Methods: Focus group interviews were conducted with healthcare professionals who, after being trained, applied the SDM framework. Content analysis was used to analyze the data. Results: Six months after the feasibility trial, focus group interviews with healthcare professionals (n = 10 in Italy; n = 9 in the Netherlands) were held. We found 6 themes and 15 categories. Within these themes, facilitators and barriers were identified. The categories of team collaboration, communication skills and nursing home policy were found to be facilitators to the implementation process, whereas regulations, lack of funding and of involvement of family caregivers were the main barriers. Family attitudes towards SDM could be both. The main difference between countries concerned the residents' cognitive status that influenced their degree of involvement. Conclusion: Communication skills training for professionals, training of family caregivers, and involvement of the management in the implementation process seem to be crucial factors in successfully implementing SDM in nursing homes, and increasing the involvement of families and dementia residents in decision-making. [ABSTRACT FROM AUTHOR]

Background There is a wide gap between knowledge about palliative care and its application in everyday clinical practice, affecting many patients in our ageing population. However, changing health care practice is a complex and challenging process. Therefore, the EU funded IMplementation of quality indicators in PAlliative Care sTudy (IMPACT) project aims to develop optimal implementation strategies to improve the organization of palliative care for people with cancer or with dementia in Europe. Methods and design The organization of palliative care in Europe will be mapped to develop and prepare strategies to improve it, and an overview of barriers and incentives regarding successful organizational changes in palliative care will be undertaken. A pre-test with a set of quality indicators (QIs), developed within the project, will be used to identify aspects of the organization of palliative care requiring change in hospitals, nursing homes, hospices, and primary care in five European countries. Based on the results of the pre-test, each setting will be invited to prioritise and improve aspects of their organization that appeared weak. The improvement objective they choose will be tailored to national and setting-specific barriers. Finally, a post-test with the same QIs will determine the effectiveness of the strategies used. An extensive process analysis will be conducted throughout the entire study. Discussion It is expected that the IMPACT project will provide professionals and policy makers useful tools to facilitate effective implementation of high-quality palliative cancer and dementia care in different settings in Europe. [ABSTRACT FROM AUTHOR]

Background: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community., Methods: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme - Neurodegenerative Disease Research (JPND) - MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months., Results: The percentage of people with dementia who were very satisfied with the programme increased significantly over time ( p  = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% ( p  = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance., Conclusions: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.

Background: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions., Methods: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance., Discussion: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice., Trial Registration: Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered.

ABSTRACTBackground:The "pathway to care" concept offers a helpful framework for preparing national dementia plans and strategies and provides a structure to explore the availability and accessibility of timely and effective care for people with dementia and support for their informal carers. Within the framework of the JPND-MEETINGDEM implementation project the pathways to regular day-care activities and the Meeting Centers Support Programme (MCSP), an innovative combined support form for people with dementia and carers, was explored., Methods: An exploratory, descriptive, qualitative, cross-country design was applied to investigate the pathways to day care in several regions in four European countries (Italy, Poland, United Kingdom, and the Netherlands)., Results: Before implementation of MCSP, of the four countries the United Kingdom had the most structured pathway to post-diagnostic support for people with dementia. MCSP introduction had a positive impact on the pathways to day-care activities in all countries. MCSP filled an important gap in post-diagnostic care, increasing the accessibility to support for both people with dementia and carers. Key elements such as program of activities, target group, and collaboration between healthcare and social services were recognized as success factors., Conclusions: This study shows that MCSP fills (part of) the gap between diagnosis and residential care and can therefore be seen as a pillar of post-diagnostic care and support. Further dissemination of Meeting Centers in Europe may have a multiple impact on the structure of dementia services in European countries and the pathways to day care for people with dementia and their carer(s).

Background: Shared decision-making (SDM) can be a way for staff to adopt international recommendations advocating the involvement of nursing home residents and their family members in care planning and the development of personalized care plans., Objective: The main aim was to analyze the effects of training nursing home staff in the implementation of SDM on agreement of residents' 'life-and-care plans' with the recommendations (primary outcome) and on family caregivers' quality of life and sense of competence, and staff's job satisfaction (secondary outcomes)., Methods: In the intervention condition, staff attended a training program on the use of SDM with residents and family caregivers in the care planning process. In the control condition, care planning as usual took place. For the primary outcome, in-depth qualitative and quantitative analyses of the care plans were performed. Multivariate Permutation Tests were applied to assess the impact on secondary outcomes., Results: Forty-nine residents and family caregivers and 34 professionals were involved. Overall, many of the care plans developed during the intervention showed a high level of agreement with the care planning recommendations. Both Italian and Dutch care plans showed improvement in the number of clear problem statements (p < 0.001). In Italy, significant improvements (p < 0.05) were also found regarding specific care objectives, documentation of objectives met, and of residents and families' involvement. No impact was found on secondary outcomes., Conclusion: The involvement of residents and family caregivers in care planning contributed to an improvement of the residents' care plans, but it did not have an effect on family caregivers and staff outcomes.