Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

BACKGROUND: Research on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. METHODS: We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. RESULTS: Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. CONCLUSIONS: The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. TRIAL REGISTRATION: The Graduate School and Faculty of Medicine Kyoto University (R1924-1).

Comparing objective and self-reported measures of adherence in haemophilia.

AIM: To compare subjective and objective measures of adherence to prophylaxis in haemophilia. METHODS: In this cross-sectional study, we compared participants' self-perceived adherence and their estimate of the number of clotting factor concentrates (CFCs) that had been missed over the last period of CFC dispensation with an objective measure of adherence based on counts of CFC vials returned by participants. RESULTS: We included 29 out of 31 eligible patients in the study. There was no significant correlation between self-perceived degree of adherence and the objective classification of adherence (Rho: 0.10, 95% CI: -028 to 0.46, P: 0.61) and between the classification of adherence based on the proportion of missed CFC doses assessed by participants' self-report and objectively (Rho: 0.32, 95% CI: -0.01 to 0.59, P: 0.11). Conversely, we found evidence of moderate correlation between the proportion of missed CFC doses as assessed by participants' self-report and objectively (Rho: 0.56, 95% CI: 0.24 to 0.77, P: 0.003). Participants' self-perceived adherence was 3 times more likely to be rated as very good or good than it was for the objective assessment to be classified as adherent or suboptimally adherent. CONCLUSION: Our results showed significant discrepancies between subjective and objective measures of adherence, which likely reflect the influence of social desirability bias in self-reported measures and different concepts of adherence between patients/caregivers and haemophilia experts. Additionally, our results allow us to hypothesize that studies on adherence to prophylaxis in haemophilia relying exclusively on information from self-reports and questionnaires may substantially overestimate adherence levels.

Why medical schools are tolerant of unethical behavior.

The exposure to unethical and unprofessional behavior is thought to play a major role in the declining empathy experienced by medical students during their training. We reflect on the reasons why medical schools are tolerant of unethical behavior of faculty. First, there are barriers to reporting unprofessional behavior within medical schools including fear of retaliation and lack of mechanisms to ensure anonymity. Second, deans and directors do not want to look for unethical behavior in their colleagues. Third, most of us have learned to take disrespectful circumstances in health care institutions for granted. Fourth, the accreditation of medical schools around the world does not usually cover the processes or outcomes associated with fostering ethical behavior in students. Several initiatives promise to change that picture.

Dry needling, trigger point electroacupuncture and motor point electroacupuncture for the treatment of myofascial pain syndrome involving the trapezius: a randomised clinical trial.

OBJECTIVE: The objective of this study was to compare trigger point (TrP) dry needling, TrP electroacupuncture and motor point electroacupuncture of the trapezius muscle for the treatment of myofascial pain syndrome (MPS). METHODS: This randomised clinical trial included 90 patients divided into three groups. Group 1 was treated with dry needling of TrPs, group 2 with intramuscular electrical stimulation of TrPs, and group 3 with electroacupuncture of motor points and/or the spinal accessory nerve. Each group received seven treatment sessions. The outcomes were the pain score measured by visual analogue scale (VAS) and quality of life evaluated by the 12-item short form (SF-12) health questionnaire. We compared the pain outcome over serial time points using growth curve analysis methods. RESULTS: Participants in the three groups experienced significant improvements in pain scores over time. The average pain level of participants in group 3 across the repeated assessments was 0.98 units lower than in group 1 (mean difference (95% confidence interval (CI) = 1.74-0.23)), p = 0.012). There were no significant differences in pain scores between participants in groups 1 and 2, and there were no significant differences in quality of life across the three groups at the end of the treatment period. CONCLUSION: Our results provide evidence that electrical stimulation of motor points and/or of the spinal accessory nerve may be superior in terms of pain relief (but not quality of life) to dry needling and possibly electrical stimulation of trigger points for the management of MPS involving the trapezius. TRIAL REGISTRATION NUMBER: TRIAL-RBR-43R7RF (Brazilian Clinical Trials Registry).

Advance Care Planning in Brazil.

Brazil is a country of continental size marked by extreme social inequalities. Its regulation of Advance Directives (AD) was not enacted by law but within the scope of the norms that govern the relationships between patients and physicians, as a resolution of the Federal Medical Council without any specific requirement for notarization. Despite this innovative starting point, most of the debate regarding Advance Care Planning (ACP) in Brazil has been dominated by a legal transactional approach focused on making decisions in advance and the creation of AD. Yet, other novel ACP models have recently emerged in the country with a focus on the creation of a specific quality of relationship between patients, families, and physicians aiming at the facilitating future decision-making. Most of the education on ACP in Brazil happens in the context of palliative care courses. As such, most ACP conversations are performed within palliative care services or by healthcare professionals with training in that area. Hence, the scarce access to palliative care services in the country means that ACP is still rare and that those conversations usually happen late in the course of disease. The authors posit that the existing paternalistic healthcare culture is one of the most important barriers to ACP in Brazil and envision with great concern the risk that its combination with extreme health inequalities and the lack of healthcare professionals' education on shared decision-making could lead to the misuse of ACP as a form of coercive practice to reduce healthcare use by vulnerable populations.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Use of artificial intelligence as an instrument of evaluation after stroke: a scoping review based on international classification of functioning, disability and health concept.

INTRODUCTION: To understand the current practices in stroke evaluation, the main clinical decision support system and artificial intelligence (AI) technologies need to be understood to assist the therapist in obtaining better insights about impairments and level of activity and participation in persons with stroke during rehabilitation. METHODS: This scoping review maps the use of AI for the functional evaluation of persons with stroke; the context involves any setting of rehabilitation. Data were extracted from CENTRAL, MEDLINE, EMBASE, LILACS, CINAHL, PEDRO Web of Science, IEEE Xplore, AAAI Publications, ACM Digital Library, MathSciNet, and arXiv up to January 2021. The data obtained from the literature review were summarized in a single dataset in which each reference paper was considered as an instance, and the study characteristics were considered as attributes. The attributes used for the multiple correspondence analysis were publication year, study type, sample size, age, stroke phase, stroke type, functional status, AI type, and AI function. RESULTS: Forty-four studies were included. The analysis showed that spasticity analysis based on ML techniques was used for the cases of stroke with moderate functional status. The techniques of deep learning and pressure sensors were used for gait analysis. Machine learning techniques and algorithms were used for upper limb and reaching analyses. The inertial measurement unit technique was applied in studies where the functional status was between mild and severe. The fuzzy logic technique was used for activity classifiers. CONCLUSION: The prevailing research themes demonstrated the growing utility of AI algorithms for stroke evaluation.

Systematic reviews showed insufficient evidence for clinical practice in 2004: what about in 2011? The next appeal for the evidence-based medicine age.

RATIONALE AND AIM: The aims of the Cochrane systematic reviews are to make readily available and up-to-date information for clinical practice, offering consistent evidence and straightforward recommendations. In 2004, we evaluated the conclusions from Cochrane systematic reviews of randomized controlled trials in terms of their recommendations for clinical practice and found that 47.83% of them had insufficient evidence for use in clinical practice. We proposed to reanalyze the reviews to evaluate whether this percentage had significantly decreased. METHODS: A cross-sectional study of systematic reviews published in the Cochrane Library (Issue 7, 2011) was conducted. We randomly selected reviews across all 52 Cochrane Collaborative Review Groups. RESULTS: We analyzed 1128 completed systematic reviews. Of these, 45.30% concluded that the interventions studied were likely to be beneficial, of which only 2.04% recommended no further research. In total, 45.04% of the reviews reported that the evidence did not support either benefit or harm, of which 0.8% did not recommend further studies and 44.24% recommended additional studies; the latter has decreased from our previous study with a difference of 3.59%. CONCLUSION: Only a small number of the Cochrane collaboration's systematic reviews support clinical interventions with no need for additional research. A larger number of high-quality randomized clinical trials are necessary to change the 'insufficient evidence' scenario for clinical practice illustrated by the Cochrane database. It is recommended that we should produce higher-quality primary studies in active collaboration and consultation with global scholars and societies so that this can represent a major component of methodological advance in this context.