PATIENT-CENTERED RESEARCH INTO OUTCOMES STROKE PATIENTS PREFER AND EFFECTIVENESS RESEARCH

What is PCORI? PROSPER is funded by PCORI PCORI =Patient Centered Outcomes Research Institute Nonprofit organization established by the Affordable Care Act in 2010 PCORI’s Mission To fund research that offers patients and caregivers the information they need to make important healthcare decisions

What is PROSPER? Patient-centered Research into Outcomes Stroke Patients prefer and Effectiveness Research Above all, PROSPER is a research collaboration  Patients  Doctors  Caregivers  Researchers Multiple perspectives and experiences = better understanding!

Why are we doing PROSPER? Stroke is a major public health problem  800,000 each year in the US: that’s 1 every 40 seconds!  4 th leading cause of death  Leading cause of disability What we don’t know:  Common therapies like statins and blood thinners help avoid another stroke, but how do they affect functional status, time at home, quality of life?  Certain therapies may be effective for certain patients, but what about for less well-studied patient groups like women, minorities, and the elderly?

A Few Questions… Are statins as beneficial for older adults as for younger adults? What are the tradeoffs between long-term health and potential negative effects of my medications? How well do these therapies work over the long-term? How do the new anticoagulants affect my likelihood of having another stroke? Can antidepressants improve my quality of life after stroke?

How do we plan to answer these questions? Clinical data sources  Get With the Guidelines (GWTG) – Stroke  National registry of over 2 million acute stroke patients  Measures the medical treatment received during hospitalization  Can use this data to see where doctors and hospitals can improve their stroke care  Medicare-CMS  Use of healthcare services by people enrolled in Medicare  Information about rehospitalizations after the initial stroke and how much time is spent at home during the year after discharge

Patient questionnaire  Days alive and at home (“home- time”)  Any fatigue or depression experienced as a result of the stroke  Quality of life  Mobility  Whether patient can complete normal activities like dressing, eating, shopping  How well patients are tolerating their medications/any side effects they are experiencing Patient data source: phone interviews at 3 and 6 months after discharge to assess:

How do we think this will help patients? Use results to develop patient tools available on an interactive online portal  Stroke warning signs/symptoms  How to reduce risk of having another stroke  What therapies are associated with more time at home and better quality of life Provide results back to providers  Unique data on treatments that are preferred by patients  Promote shared decision-making Generate scientific knowledge  Build a research platform so that additional questions prioritized by stroke survivors can be answered in the future

How can patients help? Ideas  Volunteer with AHA/ASA  Join local stroke support group  Send us your feedback

Investigative Team DCRI Adrian Hernandez, Ying Xian, Emily O’Brien, Melissa Greiner, Jingjing Wu, Tina Harding, Laura Drew, Eric Peterson, Michael Pencina Patient Co-Investigators Lesley Maisch, Deidre Hanna, Brianna Lindholm Steering Committee Gregg Fonarow (UCLA), Lee Schwamm (MGH), Daiwai Olson (UTSW) GWTG Stroke Science Liaisons Eric Smith (Alberta), Deepak Bhatt (BWH)