16 research outputs found

    Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study

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    Background Systemic sclerosis is a heterogenous disease in which little is known about patterns of patient-reported symptom clusters. We aimed to identify classes of individuals with similar anxiety, depression, fatigue, sleep disturbance, and pain symptoms and to evaluate associated sociodemographic and disease-related characteristics. Methods This multi-centre cross-sectional study used baseline data from Scleroderma Patient-centered Intervention Network Cohort participants enrolled from 2014 to 2020. Eligible participants completed the PROMIS-29 v2.0 measure. Latent profile analysis was used to identify homogeneous classes of participants based on patterns of anxiety, depression, fatigue, sleep disturbance, and pain scores. Sociodemographic and disease-related characteristics were compared across classes. Findings Among 2212 participants, we identified five classes, including four classes with “Low” (565 participants, 26%), “Normal” (651 participants, 29%), “High” (569 participants, 26%), or “Very High” (193 participants, 9%) symptom levels across all symptoms. Participants in a fifth class, “High Fatigue/Sleep/Pain and Low Anxiety/Depression” (234 participants, 11%) had similar levels of fatigue, sleep disturbance, and pain as in the “High” class but low anxiety and depression symptoms. There were significant and substantive trends in sociodemographic characteristics (age, education, race or ethnicity, marital or partner status) and increasing disease severity (diffuse disease, tendon friction rubs, joint contractures, gastrointestinal symptoms) across severity-based classes. Disease severity and sociodemographic characteristics of “High Fatigue/Sleep/Pain and Low Anxiety/Depression” class participants were similar to the “High” severity class. Interpretation Most people with systemic sclerosis can be classified by levels of patient-reported symptoms, which are consistent across symptoms and highly associated with sociodemographic and disease-related variables, except for one group which reports low mental health symptoms despite high levels of other symptoms and substantial disease burden. Studies are needed to better understand resilience in systemic sclerosis and to identify and facilitate implementation of cognitive and behavioural strategies to improve coping and overall quality of life

    The 'redefinition of death' debate: western concepts and western bioethics.

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    Biomedicine is a global enterprise constructed upon the belief in the universality of scientific truths. However, despite huge scientific advances over recent decades it has not been able to formulate a specific and universal definition of death: In fact, in its attempt to redefine death, the concept of death appears to have become immersed in ever increasing vagueness and ambiguity. Even more worrisome is that bioethics, in the form of principlism, is also endeavouring to become a global enterprise by claiming neutrality. It appears that the discourse within both disciplines have similarly manipulated the boundaries of death to include the "dying". This paper argues that the redefinition of death debate in biomedicine reveals a concept of personhood which is profoundly western in origin and which is in accordance to the concept adhered to within principlism. Biomedicine and bioethics do not appear to acknowledge the limitations of their own world view and hence lack an understanding of their applicability and appropriateness in diverse social and cultural contexts; a situation which adds credence to claims as to the hegemonic and imperialistic nature of all such global enterprises
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