We found an overall 21.5% (95% CI 18.2-24.9) mortality rate in 1 year and a statistically significant SMR of 1,080 (95% CI 794-1450) and 512.8 (95% CI 366.4-698.3) for the first two periods, 1-30 days and 31-90 days after hospital admission, respectively. For the last period the SMR displayed a statistically nonsignificant trend of 137 (95% CI 99-183). Even in the first 15 days after the index hospital admission, most deaths (55.1%) occurred after hospital discharge, reinforcing the importance of linking hospital mortality databases with general population mortality information systems. The leading three basic causes of death, as reported in death certificates, were cardiovascular events, falls, and infections. This study represents an example of the application of PRL methodology to produce relevant data on hip fracture, a subject of rising epidemiological importance in developing countries.
If the association estimated in our study is causal, our results provide evidence that some hip fracture-related deaths could be prevented by improved patient access to appropriate and timely hospital care in the context of a developing country.
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.
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.
This report provides a basis for future cross-cultural adaptations of POLST to other countries. The authors hope such new adaptations will broaden the possibilities of research using POLST and also may promote wider provision of care at the end of life that is consistent with patients' preferences.
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).
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