Helping Patients Understand Life after TIA and Stroke

Survivors of stroke and their caregivers want help and guidance in understanding stroke, how to live post-stroke, and how to achieve the best quality of life. Ensuring patients and their caregivers know all the facts in addition to the ins and outs of what to expect from each treatment during their recovery process is essential to maximizing patient experience and quality of life.

Stroke ranks as the leading cause of serious long-term and preventable disability in the U.S.1,2,3 Each year approximately 795,000 people experience a new or recurrent stroke, of which 80% are considered preventable.1,2,4 Ischemic attacks account for 87% of these cerebrovascular events while 13% are hemorrhagic.5 About one in three ischemic strokes are classified as cryptogenic.3

Of the 185,000 people who survive and live with complications resulting from a stroke each year, the majority are predicted to experience a second one within five years.5 Data shows those who experience ischemic attack are more likely to have another stroke within 90 days.3

With nearly seven million stroke survivors in the U.S., the right approach to patient education (what is shared) and communication (how it is shared) is essential to transmitting a large volume of accurate and complete information from one treatment setting to the next to ensure continuity of care.4,6,7

Adding to stroke patient education and communication challenges is the frequency of complications with the individual’s own ability to communicate.8 About one-third of survivors experience problems with speaking, reading, writing, and understanding what other people, including their medical care team, say to them.8

Multidisciplinary rehabilitation

Stroke rehabilitation requires a sustained and coordinated effort, sometimes for many years, from a large multidisciplinary team with the patient and their goals at the center.7 In addition to the patient, the team may include family and friends, other caregivers, physicians, nurses, physical and occupational therapists, speech pathologists, psychologists, and social workers, among others. Communication and coordination among these team members should be a top priority in maximizing the effectiveness and efficiency of rehabilitation for long-term recovery.7


Knowing where to turn for rehabilitation and support after a stroke can be overwhelming for patients and their families or other caregivers but it is important that the process begins as soon as possible to maximize recovery.9 Since this often means rehab is initiated while patients are still in the hospital, decisions must be made quickly and families should be advised to check with their insurance plan for coverage and a list of facilities.9 Depending on the type of rehabilitation and how long it will continue after discharge from the hospital, they will also need to know how to choose and evaluate facilities.9

The goals of stroke rehabilitation are to help survivors live as independently as possible while adjusting to new limitations.9 Patients or their caregivers will need to be prepared to make quick decisions about rehabilitation given it often begins once the patient is stable, or within a day or two of the stroke.9 Rehab may continue for months or even years after leaving the hospital.9 The types of therapy will depend on what parts of the brain were damaged during the stroke.9

Patients need to be aware they may have to change or relearn how they live day to day after a stroke and that sticking to their rehabilitation program is the best way to reverse some of the effects.10 It is important for patients and their caregivers to understand that the goals of rehab are to increase independence, improve physical functioning, and help them maximize their quality of life after stroke.10

Avoiding the other drug problem

According to the National Council on Patient Information and Education, “Lack of medication adherence is America’s other drug problem.”11 When it comes to compliance, 12 percent of people in the United States don’t take their medication at all after they fill/buy the prescription.11

Along with rehabilitation, patients benefit from receiving information and education on the critical need to both adhere to filling and refilling prescriptions on time as well as complying with the dosage schedules of post-stroke medication regimens.11 Ensuring patients understand that following their drug regimens is a primary component of their immediate and long-term recovery and recurrent stroke prevention program.11

Explaining the consequences of poor adherence and compliance, including unnecessary disease progression and complications that reduce quality of life, increased costs and physician visits, hospital stays, and the need for expensive specialized medical resources may help in motivating patients to comply.11

On the other hand, understanding the many reasons non-adherence and non-compliance are so common among patients can provide useful insights for suggestions and solutions that can prevent problems ahead of time.11 These include socioeconomic (age, race), survivor-related (forgetfulness, anxiety, depression, severity of condition), and medication-related (cost, complexity, side effects, addictiveness), among others.11

Recommending organizational tips and reminder tricks or providing resources and tools, such as medication tracker sheets, for remembering each one and what it does can help with confusion and overwhelm.11 Encourage patients to develop a relationship with one pharmacy and to be vocal and communicate their experiences while on medications to help when adjustments are needed.11 Financial burdens may be reduced with generics, drug manufacturer Patient Assistance Programs, and value-based insurance design that address copays.11

Disease management

A comprehensive long-term stroke patient management program for screening and monitoring is an essential key to preventing not just complications but reoccurrence.12 This can be accomplished by helping patients identify and modify risk factors in conjunction with a schedule for regular testing and assessment.12

Stroke patients demonstrate a high probability for reducing or discontinuing their medications and screening assessments by self-determination.13 This leads to a high probability for recurrent strokes.13 In one ongoing clinical trial, researchers are developing and evaluating disease management programs based on clinical practice guidelines that can that can serve as methods for implementing early interventions for each stroke risk factor such as hypertension, diabetes, dyslipidemia, sleep-disordered breathing, and atrial fibrillation.12,13

Another team of researchers is addressing stroke survivor long-term management by developing a theory- and evidence-based chronic disease management program using intervention mapping to improve control of both lifestyle behavior and risk factors.14 Their paradigm, Stroke Coach, is a patient-centered, community-based, telehealth intervention to promote healthy lifestyles after stroke.14

Over six months, stroke survivors receive seven 30 to 60-minute telephone sessions with a lifestyle coach.14 The coach provides education, manuals, and a self-monitoring kit designed to empower patients to self-manage their stroke risk factors and make lifestyle modifications.14

Social Cognitive Theory was the underlying premise for behavior change, while Control Theory methods were directed towards sustaining the changes to ensure long-term health benefits.14 Practical evidence-based strategies were linked to behavioral determinants to improve stroke risk factor control.14 If empirical evaluation produces positive results, the next step will be to develop an implementation intervention to ensure successful uptake and delivery of the program in community and outpatient settings.14

An important component of the long-term treatment of patients who have suffered a stroke is managing non-cardiovascular conditions, including swallowing difficulties, depression, spasticity, dry mouth, and excessive saliva production.15

Wearable sensors that stick to the throat could soon help track the long-term recovery of stroke survivors as well.18 Researchers have developed adhesive strips containing motion sensors that detect muscle movement and vocal cord vibrations to help physicians diagnose and monitor the effectiveness of certain treatments for post-stroke conditions like difficulty swallowing or talking.18  Up to 65 percent of stroke survivors have trouble swallowing, and about a third of survivors have trouble carrying on conversations.18

The devices can monitor speech patterns more reliably than microphones by sensing tissue movement rather than recording sound.16 Motion data is continually streamed to a smartphone and are being tested with real stroke patients to improve their user-friendliness.16 These kinds of sensors could also track the recovery of neck cancer patients, who commonly develop swallowing and speaking problems caused by radiation therapy and surgery, in addition to measuring breathing and heart rates to monitor sleep quality and help diagnose sleep apnea.16

Patient experience will only become more and more important over time and by embracing effective communication tools that maximize limited resources, providers could easily see benefits to patient outcomes.6 When providers communicate clearly and educate patients in a meaningful way, well-being, wellness, and a trustful, caring relationship between patient and clinician leads to better outcomes for both.6,17


  1. Stroke Statistics 2018. American Heart Association. Accessed 9/6/2018
  2. Stroke: A Public Health Issue 2015. American Stroke Association / AHA. Accessed 9/5/2018
  3. Stroke Facts 2016. American Stroke Association. Accessed 9/5/2018
  4. Stroke Facts - Myth vs Fact. National Stroke Association. Accessed 9/5/2018
  5. How many people are affected by/at risk for stroke? U.S. Department of Health & Human Services NIH. Accessed 9/5/2018
  6. Patient Communication Vs. Patient Education: How To Fill In The Gaps. Health IT Outcomes. Accessed 9/5/2018
  7. Transitions in Care and Community Interventions. American Stroke Association. Accessed 9/5/2018
  8. Communication Problems. Stroke Association UK. Accessed 9/5/2018
  9. Stroke Recovery Resources. American Stroke Association. Accessed 9/5/2018
  10. Let’s talk about Stroke and Rehabilitation. American Stroke Association. Accessed 9/5/2018
  11. Medication adherence and compliance. National Stroke Association. Accessed 9/5/2018
  12. Post-discharge nursing care of stroke patients. American Nurse Today. Accessed 9/5/2018
  13. The Effects of Disease Management Programs for Prevention of Recurrent Ischemic Stroke. Accessed 9/5/2018
  14. Development of a Chronic Disease Management Program for Stroke Survivors Using Intervention Mapping. The Stroke Coach. Archives of physical medicine and rehabilitation. Accessed 9/5/2018
  15. Stroke: long-term management. The Pharmaceutical Journal. Accessed 9/5/2018
  16. This stick-on patch could keep tabs on stroke patients at home. ScienceNews Accessed 9/5/2018
  17. Time to Start Using Evidence-Based Approaches to Patient Engagement. New England Journal of Medicine. Accessed 9/5/2018