STRIVE Study Centers Patient and Caregiver Outcomes in Stroke Survival Research

STRIVE Study Centers Patient and Caregiver Outcomes in Stroke Survival Research.

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A nurse talks with a patient and her husband.

STRIVE is a first-of-its-kind longitudinal prospective cohort study of patient- and caregiver-focused outcomes in stroke survivorship.


For more than 7 million people in the U.S. who have survived a stroke, recovery can be a long and challenging process. Survivors can lose the ability to work, causing financial hardship, and family dynamics can change overnight when loved ones become caregivers. For people from historically minoritized communities, social factors and experiences with bias can add even more obstacles.

In a first-of-its-kind study, MedStar Health Research Institute and MedStar Georgetown University Hospital places stroke survivors and their caregivers at the center of a long-term study of stroke outcomes. STRIVE: Stroke Research Initiative to adVance Equity is led by a community advisory board of stroke survivors and caregivers. 

This research was funded by a MedStar Health “K-Award” Research Development Award, a part of the MedStar Health Academic Investment awards,  and examines how social determinants of health (SDOH)—like where people live and their access to healthcare—and lived experiences of discrimination impact stroke survivorship. Racial and ethnic disparities in stroke are well-documented:

Stroke is a leading cause of long-term disability in the U.S., but data are usually limited to when people have strokes and whether they die. STRIVE is uniquely designed to include outcomes that are important to patients, and it takes a long-term view of recovery from the perspective of both the stroke survivor and the caregiver. 

Related reading: Advanced Treatments for Carotid Artery Stenosis, a Common Cause of Stroke.

Studying the experience of survivors and caregivers.

Stroke research has been largely focused on two primary outcomes: whether patients live or die (mortality) and a primary measure of physical function called the Modified Rankin Scale for Neurologic Disability. These are necessary measurements, but they don’t tell us much about what it’s like to survive a stroke. 

For STRIVE, we’ve assembled a 12-member community advisory board (CAB) of stroke survivors and their caregivers. They’ve helped us understand what we should study to have the most impact—our patient-centered outcomes (PCOs). 

We’ll send participants a survey every three months for the first year and one every year after that. The survey will ask questions about survivors’ and caregivers’ quality of life during recovery, including how SDOH and experiences of discrimination impact their outcomes. The CAB selected the Stroke Impact Scale to assess outcomes such as:

  • Ability to return to work
  • Mental health challenges
  • Quality of life measures, such as communication, memory, and social functioning

Stroke affects the whole family—caregiver burnout is a genuine health concern as families are challenged to adjust to changing roles, financial strain, and interpersonal conflicts. To understand the impact of stroke on families, the CAB selected the Modified Caregiver Strain Index. It measures financial, physical, psychological, social, and personal domains. 

Improving equity at the forefront.

MedStar Health Research Institute’s focus on centering our patients in research places us at the forefront of community-engaged research, where we can make a tangible impact. By shifting the power from researchers to patients, we’re helping to create more equitable care.

Studying how bias and SDOH impact our patients’ health will reveal opportunities for MedStar Health to craft new solutions to problems like food and housing insecurity that impact so many of our patients. This challenge can seem overwhelming, but exciting research like STRIVE allows us to develop a new understanding that makes a difference in our patient’s lives.

Want more information about this study?

Learn more about eligibility criteria and how to enroll.

Call 301-744-8028 or Email

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