November 15, 2014

Doctors who work with stroke survivors should acknowledge uncertainties and empower their patients with positive communication about stroke recovery, according to stroke survivors who participated in a study published in Circulation: Cardiovascular Quality and Outcomes this week.

“Healthcare providers often measure our recovery with functional status assessments and activity scales, but what these metrics cannot quantify is the tremendous loss felt by the driven career women, the supermom and super wife or the free-willed adults that we all used to be,” said stroke survivor Lesley Maisch. “Our strokes have not only changed how we live, but who we are. As we grieve these losses, healthcare providers need to support us by acknowledging that the future is uncertain and empower us to shift our focus from what we cannot do, to what we can do.”

Maisch and two other stroke survivors – Brianna Lindholm and Deidre Hannah, are three of the new “patient investigators” for the Patient-centered Research into Outcomes Stroke Patients Prefer and Effectiveness Research led by Dr. Adrian F. Hernandez of the Duke Clinical Research Institute in collaboration with the American Heart Association/American Stroke Association’s Get With The Guidelines-Stroke program.

“Certain Uncertainty: Life after Stroke from the Patient’s Perspective,” describes how healthcare providers can best support stroke survivors by:

  • Managing the balance of hope and expectations;
  • Acknowledging that a stroke “changes not just what we can do, but who we are; and
  • Making the most of communication opportunities with patients and caregivers.


“On each of our individual paths to recovery, we have learned that the only thing certain is uncertainty,” Maisch said. “Medications that are supposed to help sometimes do not. Patients with seemingly similar prognosis recover in different ways, at different paces. We encourage physicians to join us in accepting that the future is unpredictable and to work alongside us, as we navigate the recovery together.”

Some specific recommendations on how healthcare providers can improve care for stroke patients include:

  • Be careful of giving out predictions in absolute certain terms. “Each of us has been told at least once by a medical professional that we would never walk, talk, or eat again,” Maisch said. “Had we taken those predictions to heart, we would have been too discouraged to devote any serious effort to rehabilitation, and we may not have been able to do any of these things today. “Look at opportunities to improve patient communication. Slow down when speaking. Show results visually to help them “see what you see.” Be transparent.
  • Involve the patient in medical research and clinical trials to gain new perspectives on follow-up care and recovery. The PROSPER study, which is a Patient-Centered Outcomes Research Institute initiative examining stroke outcomes, is one such step. “As co-investigators for PROSPER, we are working alongside doctors and scientists to answer key questions about quality of life, depression, and fatigue that have often been neglected in clinical trials,” Maisch said. “While some answers may elude our collective efforts, we are certain that we are progressing toward a new type of medical research that is centered on patient values and needs.”

Those interested in joining AHA Quality and Health IT Research projects please contact ASPIRE@heart.org.

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