Social determinants of health impact recovery after hemorrhagic stroke

As clinicians working with patients who have sustained an acute brain injury, we are naturally focused on caring for the injury itself. Until recent years, the clinical severity of brain injury was regarded as the main driver of prognosis and outcomes [1, 2]. However, we are beginning to understand how non-clinical factors, including the social determinants of health (SDOH), contribute to differential risk for all brain injuries including hemorrhagic stroke, and continue to impact our patients’ recovery even after injury.

Understanding the complex interplay between clinical and social determinants of health is crucial for clinicians caring for hemorrhagic stroke survivors, not only for recovery and secondary prevention, but also to effectively counsel families on primary prevention. Current methods of assessing patients’ SDOH are often limited to collecting and analyzing information focused on individual SDOH, such as race, ethnicity, primary preferred language, household income, zip code, marital status, and educational attainment. These individual-level SDOH, as well as community-level SDOH such as geographic region, air pollution, and food security, have also been shown to impact access to care, knowledge of health related-behaviors, and healthcare policy [3]. Recognizing the impact of these factors and their potential role in health disparities is a first step in addressing inequities. However, simply describing the existence of health disparities does not improve health equity nor the quality of care we provide to our patients. We must also develop innovative approaches that investigate how SDOH influences our patients’ healthcare, enabling practice and policy changes that specifically address inequity.

Innovation for intervention development is crucial

A fundamental pitfall in measuring individual-level social determinant data from the medical record is that these measures often do not provide actionable steps forward. For instance, some studies have shown that a patient’s zip code can impact various health outcomes, including time to arrival to ED when experiencing an ischemic stroke [4]. While useful to understand where disparities originate, there are limitations to developing interventions at an individual or community level.

A novel approach to improve patient-centered care is speaking with patients directly to understand how social and structural determinants, such as geographic location, impacts their healthcare access and healthcare decision making. This practice requires a paradigm shift from our traditional models of extracting large, computational data to incorporating patient and family perspectives and utilizing qualitative research methodology, along with quantitative data analytics approaches.

Qualitative research methods as a vehicle for patient engagement

We have proposed a novel model to engage patients, families, and caregivers to be our partners in research to improve health equity and outcomes after hemorrhagic stroke. With these partnerships, we hope to better understand the facilitators and barriers that impact our patients’ recovery, through a lens of SDOH. With support from the American Heart Association’s Henrietta B. and Frederick H. Bugher Foundation, we have established a multicenter network dedicated to using qualitative research methods to understand the impact of SDOH on recovery after hemorrhagic stroke. Our three centers- Massachusetts General/ Brigham and Women’s Hospital (MGB), Yale, and University of California, San Francisco (UCSF) are committed to working with patients and their families to establish patient-centered outcomes across the lifespan for hemorrhagic stroke survivors.  

Using focus groups and individual interviews, our objective is to uncover the downstream impacts of various SDOH on recovery. This methodology allows us to hear the lived experiences of patients, identify gaps in the current health system, understand how SDOH impact healthcare decision making, and discover novel targets for interventions to promote recovery and secondary prevention after hemorrhagic stroke that traditional research approaches may not capture. Our recruitment methods have included traditional approaches using fliers and advertising in our clinics. However, to engage a broader audience, we have recruited participants through online portals, stroke survivorship organizations, and through engaging community-based organizations. We have also leveraged using virtual visits for all our participants to maximize diverse representation and minimize travel and time off work. The flexibility of our study design has allowed us to connect with stroke survivors nationally, in addition to those in our hospital catchment areas.

In parallel to our first aim of taking a patient-centered approach to better understanding SDOH and recovery, we will also examine the structural determinants that impact recovery at the health systems level.  We are convening multidisciplinary stakeholders in the intensive care units across our three centers to perform a systematic assessment of provider communication to identify gaps in how we facilitate stroke education and recovery. Understanding the downstream impacts of social determinants from our patients’ perspective and matching structural gaps in the health system together will be crucial to making a lasting impact in improving health equity.

Building upon shared expertise

Importantly, our three centers have already been working to engage patients and communities and are now unifying our shared expertise through our AHA-Bugher initiative. Yale University has embraced this notion of learning from our patient’s lived experience and has also started a Patient Advisory Board in October 2023, comprised of 12 diverse stroke survivors recruited through stroke clinics and the inpatient stroke service. The focus of the board, which meets every two months, is to understand their experience interfacing with the healthcare system, potential barriers to blood pressure management, and their opinions on various blood pressure interventions. Through early engagement and partnership with our community of stroke survivors, we hope to develop a desired and realistic blood pressure intervention together as partners. For instance, the concept of mistrust of medical providers has already emerged as a theme that is a barrier to care for a number of patients. Members have already expressed interest in the idea of peer and group support.

At UCSF, we are building on a prior qualitative research study that looked at life after pediatric hemorrhagic stroke in the context of home, school, and community. As a next step, will be conducting interviews with teenage stroke survivors and parents of children who have sustained a hemorrhagic stroke to ask about the physical, mental, and social aspects of their recovery. We will analyze these discussions for themes of health and wellbeing that are not captured in traditional stroke outcome scales. By listening to their stories, we hope to create better, more patient-centered measures of stroke outcomes that can be used clinically or in research.

At MGB, a systematic assessment of communication practices and standards has led to an implementation study of physical models to promote patient and family education in the ICU for improved shared decision making. First, we convened of a group of stakeholders who routinely work in the Neurosciences ICU to understand current practices and have identified several targets for intervention. From this qualitative assessment, we are studying the impact of a physical model for tracheostomy education and its impact on clinician communication and healthcare outcomes.

Our overall goal is to use qualitative research methods to better understand the facilitators and barriers that shape our patients’ recovery after hemorrhagic stroke, using a lens of social determinants of health. We hope to show the feasibility and utility of partnering with our patients and families as a powerful research framework to improve health equity.

If you know any stroke survivors who may be interested in participating in our focus groups, note that everything is virtual and we are able to recruit remotely. Please e-mail nyechoor@mgh.harvard.edu or Rachel.forman@yale.edu for more information.