Highlight
- Physicians prioritize severity of prestroke disability or dementia and quality of life when determining stroke care goals for these vulnerable patients.
- Significant uncertainty exists due to limited baseline information and sparse evidence specific to stroke management in patients living with disability or dementia (PLWD).
- This uncertainty drives highly individualized, nuanced decision-making but also raises concerns about potential bias and care variability.
- Routine documentation of patients’ prior well-being and advance directives, alongside inclusion of PLWD in research, are key strategies to improve equity and evidence-based care.
Study Background
Stroke remains a leading cause of morbidity and mortality worldwide. Advances in acute stroke management have improved outcomes for many patients; however, approximately one-third of people who suffer strokes already live with disabilities or dementia (PLWD). These comorbid conditions complicate clinical decision-making, as physicians must balance potential benefits and burdens of interventions within the context of patients’ preexisting impairments and cognitive status. Despite this clinical reality, evidence guiding stroke care specifically tailored for PLWD is notably lacking. This gap leaves physicians navigating complex ethical and clinical terrain with limited data, leading to variable approaches to goals of care determination. Understanding how physicians approach these challenges is critical to developing best practices that optimize both clinical outcomes and quality of life for PLWD after stroke.
Study Design
The SEED study employed a mixed-methods design combining qualitative and quantitative data to investigate physicians’ perspectives on stroke management for PLWD. Physicians actively involved in stroke care were recruited for semistructured interviews and an online survey. Interview transcripts were analyzed using interpretive grounded theory to uncover themes related to decision-making processes and perceived challenges. Survey responses underwent descriptive statistical analysis to quantify the importance attributed to various factors influencing care goals. The participant pool comprised 30 interviewees (43% from North America, predominantly neurologists with ≥10 years of experience) and 132 survey completers (37% North American, 56% neurologists, half with ≥10 years’ experience), ensuring both depth and breadth of insight.
Key Findings
Survey data demonstrated strong consensus that both the severity of the prestroke disability/dementia and the patient’s quality of life before stroke were considered very or extremely important in guiding care decisions—reported by 87%-89% and 87%-88% of respondents respectively. Other factors such as patients’ wishes, prognosis, and family input were also acknowledged but with greater variability.
The qualitative interviews revealed profound uncertainty underpinning these decisions. Physicians frequently highlighted challenges in reliably assessing patients’ baseline functional and cognitive status and lacked access to clear advance directives or detailed histories reflecting patients’ values and preferences. Furthermore, the paucity of stroke-specific evidence tailored to PLWD constrained physicians’ confidence about prognosis and treatment appropriateness. This ambiguity necessitated highly individualized approaches, where clinical judgment balanced patient context, likely outcomes, and ethical considerations.
However, this individualized complexity introduced risks of unconscious bias, unequal treatment, and variability in clinical decisions. Some physicians expressed concern that decisions might be unduly influenced by subjective impressions or systemic inequities rather than objective criteria.
To mitigate these issues, physicians supported routine, systematic documentation of patients’ prior well-being and advance healthcare directives to inform acute stroke care decisions. Moreover, they emphasized the imperative for research inclusion of PLWD to generate evidence that reflects this population’s specific needs and outcomes, incorporating patient and family perspectives on quality of life and valued recovery milestones.
Expert Commentary
The SEED study sheds light on an underexplored yet critical facet of stroke care—decision-making for patients with preexisting disability or dementia. The findings align with literature emphasizing the need for personalized care and shared decision-making but underscore a gap in robust evidence guiding best practices. Neurologists and stroke specialists must navigate an ethical landscape where prognostic uncertainty is compounded by limited baseline data and varying stakeholder expectations. Incorporating structured advance care planning, multidisciplinary input, and objective outcome measures can reduce variability and potential biases.
Notably, the study’s mixed-method design offers a comprehensive view but relies on self-reported physician perspectives, which might be subject to social desirability or recall bias. Further observational studies capturing real-time clinical decisions and outcomes in PLWD post-stroke would be valuable. Additionally, broader international representation and inclusion of non-neurologist clinicians involved in stroke care could enhance generalizability.
Conclusion
Physicians face complex, multifactorial uncertainty in determining goals of stroke care for patients living with disability or dementia. The interplay of limited baseline information, scant PLWD-specific evidence, and ethically charged decisions necessitates individualized, context-sensitive approaches that are vulnerable to bias and care heterogeneity. To advance equitable care, routine documentation of patients’ prior functioning and preferences should become standard practice. Simultaneously, research efforts must prioritize inclusion of PLWD to generate actionable evidence that honors patient-centered definitions of quality of life and favorable outcomes. These steps promise to improve decision-making quality, consistency, and ultimately, outcomes for this vulnerable patient population.
Funding and ClinicalTrials.gov
Details regarding study funding and trial registration were not specified in the abstract. Interested readers should consult the original publication for this information.
References
Drozdowska BA, Betzner W, Cristall N, et al. Physician Approaches to Determining Goals of Stroke Care for Patients Living With Disability or Dementia: Results from the SEED Mixed-Methods Study. Stroke. 2026;[Epub ahead of print]. PMID: 42339544.
Additional relevant literature:
1. Towfighi A, Ovbiagele B. Stroke in women: disparities and outcomes. J Neurol Sci. 2009;285(1-2):137-141. doi:10.1016/j.jns.2009.06.006
2. Howard VJ, Wagenknecht LE, et al. Prestroke Disability and Poststroke Outcomes Among Older Adults. Stroke. 2014;45(8):2325-2329. doi:10.1161/STROKEAHA.114.005120
3. Wong AA, Symons SP, et al. Care Approaches and Outcomes in Patients with Dementia and Stroke: A Review. Curr Geriatr Rep. 2018;7(1):1-10. doi:10.1007/s13670-018-0233-x
4. Smith EE, Shobha N, et al. Decision Making and Treatments in Stroke Patients With Preexisting Disability. Stroke. 2020;51(2):601-608. doi:10.1161/STROKEAHA.119.027228