Abstract
Background: Around one in three strokes are experienced by people living with disability or dementia (PLWD), yet there is currently no consensus to guide physicians in evaluating baseline status in this patient population and determining goals of care. We sought to understand how physicians currently approach this complex issue and what challenges they encounter as a critical step towards informing evidence-based best practices for PLWD. Methods: Through separate recruitment strategies, we invited physicians involved in stroke care to participate in semi-structured, in-depth interviews and an online survey, inquiring into perspectives on evaluation and management of PLWD. Interviews were recorded, transcribed, and analyzed applying an interpretive grounded theory approach, using constant comparison throughout the coding process to establish themes and subthemes. Results were triangulated with findings from a descriptive analysis of survey responses. Results: Twenty-eight physicians participated in interviews, while 134 provided survey data, representing 17 countries and 10 medical specialties. Among factors most frequently rated as extremely important in stroke care decision-making (by ≥40% of respondents) were severity of pre-existing dementia/disability and baseline quality of life. Concurrently, interviews highlighted considerable challenges in assessing these factors given time constraints in the acute setting and crudeness of popular screening measures, which fail to capture relevant nuances in patients’ baseline status. Participants further spoke to uncertainties in determining goals of care that align with patients’ best interest. Here, emphasis was placed on the inappropriateness of a mainstream conceptualization of a favorable outcome as maintaining independence, and the need to consider variability in personal and cultural values, support networks, and the broader socioeconomic context. In navigating the complexities of patient-centric care for PLWD who are often unable to voice their wishes, family input and advanced care directives were identified as key facilitators. Conclusions: This mixed-methods study highlights the need for creating evidence-based, tailored strategies for assessing pre-stroke status and defining favourable outcomes for PLWD. Achieving these goals relies on future research co-production with PLWD and their families, ensuring integration of patient priorities and appropriate operationalization of relevant post-stroke outcomes.
Published Version
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