Journal of pain and symptom management
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J Pain Symptom Manage · Jul 2022
ReviewThe Design of a Data Management System for a Multicenter Palliative Care Cohort Study.
Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. ⋯ Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.
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J Pain Symptom Manage · Jul 2022
ReviewA Decade of Studying Drivers of Disparities in End-of-Life care for Black Americans: Using the NIMHD Framework for Health Disparities Research to Map the Path Ahead.
The purpose of this paper is to provide a review of the existing literature on racial disparities in quality of palliative and end-of-life care and to demonstrate gaps in the exploration of underlying mechanisms that produce these disparities. ⋯ The sociocultural environment, physical/built environment, behavioral and biological domains remain understudied areas of potential causal mechanisms for racial disparities in end-of-life care. In the Healthcare System domain, social influences including healthcare policy and law are understudied. In the sociocultural domain, the majority of the studies still focused on the individual level of influence, missing key areas of research in interpersonal discrimination and local and societal structural discrimination. Studies that focus on individual factors should be better screened to ensure that they are of high quality and avoid stigmatizing Black communities.