The Official Post-Stroke Checklist

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A Post-Stroke Checklist developed by the Global Stroke Community Advisory Panel can help stroke survivors navigate the ups and downs of stroke recovery.

The effects of a stroke are diverse, impacting several aspects of daily life. Most stroke survivors are not familiar with the effects and complications of a stroke and do not know what to expect. When post-stroke complications are left to worsen, this can lead to major disability, causing a considerable decline in independence in the year after a stroke.

To help prevent worsening disability during stroke recovery, the Global Stroke Community Advisory Panel developed a new 11-item Post Stroke Checklist to be used by health care teams who take care of stroke survivors. This carefully constructed Post Stroke Checklist has been internationally recognized as beneficial and practical by the world’s leading stroke organizations, including The World Stroke Organization, which has endorsed the Post-Stroke Checklist.

How Can I Use the Post-Stroke Checklist? 

The purpose of the Post-Stroke Checklist is to provide an easily accessible list of the most common problems that can happen after a stroke. This can help stroke survivors, their caregivers and their health care providers recognize and respond to stroke-related health issues, such as depression and incontinence (accidental urination.) 

There are several ways for a stroke survivor to use the Post-Stroke Checklist.

These include regularly scheduling appointments to check in with your health care team regarding the 11 items on the list. The health care team can then keep track of how the 11 items on the list improve or worsen over time and intervene as necessary. 

Patients and caregivers have a lot to gain from the Post-Stroke Checklist.

All of the items on the checklist are common consequences of stroke, but, if you are not familiar with strokes, then most of them might not intuitively appear to be obviously related to stroke. That is why just being familiar with the Post-Stroke Checklist helps alert stroke survivors and caregivers to early signs of any of the 11 problems. And, when these stroke complications are recognized early, they can be managed before they have the opportunity to grow into bigger issues. 

On the Post-Stroke Checklist

Relationship with Caregiver 

After a stroke, problems between a stroke survivor and caregiver (usually the spouse or adult children) can suffer. There are a number of negative consequences when this important relationship suffers. Loved ones might withdraw emotionally from each other as they become less supportive and communicative. The extended family, including siblings, could experience bickering and interpersonal tension. Everyone involved feels the stress, while the problems snowball, growing bigger and bigger until they are almost unmanageable.

 

Aside from the fact that a stroke often causes obvious physical disabilities, some stroke survivors experience personality changes such as lack of empathy, loss of sense of humor and even irrational jealousy, as a result of the stroke-induced brain injury. These personality changes often jeopardize relationships, especially with close loved-ones. 

Once these relationship issues are recognized and addressed by the stroke care team, everyone can work together to improve the connection between the stroke survivors and caregivers as much as possible.

Communication

Speech problems are a frequent consequence of stroke. Difficulty understanding speech and producing speech is called aphasia, and it typically results from left-sided parietal and temporal lobe strokes. Communication problems can result from aphasia, but they can also result from weakness of the muscles of the face or mouth, which produces slurred speech, garbled speech, and drooling. 

It is important for stroke survivors, loved ones, friends and colleagues to be aware of communication problems in order to avoid unnecessary frustration. You should inform your health care team about communication problems so that you can get help to improve your muscle strength and/ or get effective aphasia therapy. 

Spasticity

Most people know that a stroke causes muscle weakness. But, often, weakened muscles also become rigid, stiff and even erratically jumpy. This problem is called spasticity. Spasticity interferes with muscle control and causes pain. Most of the time, weak muscles begin to develop spasticity within a few weeks after a stroke, and the spasticity worsens over time if it is untreated.

The best way to prevent spasticity is by moving the muscles weakened by the stroke, even if the muscles are completely paralyzed. A therapist or family member can move the weak or paralyzed muscles following a fixed schedule in order to prevent spasticity. If spasticity becomes much worse, prescription medications or injections such as botulinum toxin can help release the muscles, while pain pills or injections are used to relieve the pain of spasticity. 

Pain 

Seventy percent of stroke survivors experience pain that begins after the stroke. Muscle pain and head pain are the most common types of post-stroke pain. Most of the time, stroke survivors do not realize that pain is related to the stroke. And the majority of stroke survivors do not try to get help for pain symptoms, usually suffering silently or talking large amounts of over-the-counter pain medication, often with side effects. 

The explanation for why so many stroke survivors are plagued with pain is still not completely clear from a medical science standpoint. It is important, however, to recognize that while the discomfort can be difficult to bear, the pain is manageable with the right medications and therapy. You should also rest assured that post-stroke pain does not in itself pose any danger to your health. 

Cognition

Cognition means thinking skills. Stroke survivors often have to deal with a decline in thinking skills. This can mean difficulty with remembering things, struggling to solve complex problems and even trouble understanding concepts. The best way to prevent a decline in cognitive skills is to make sure to participate in social activities and cognitive exercises. Community support and social relationships have been shown to help in stroke recovery. Video games are a form of cognitive therapy that can be tailored to 'exercise' thinking skills in a manner similar to the way that physical exercise strengthens physical skills. 

If you have a problem with cognitive skills after a stroke, you should definitely report this to your healthcare team. In fact, post stroke care includes cognitive testing that examines skills such as memory, recall, and naming. This can identify a decline in cognition, which is an important step in designing appropriate cognitive therapy.

Mood

A stroke impacts mood for obvious reasons. The reality of illness and the fear of death often lead to anxiety and depression, the most commonly reported emotions after a stroke. But a stroke also may damage areas of the brain that control emotions, leading to unexpected and distressing mood changes. Counseling and medication are effective means of managing sadness, anxiety, and fear. 

Incontinence 

Incontinence and difficulty urinating are both common after a stroke. In fact, while they seem to be opposite problems, you may experience both issues after a stroke. You can avoid embarrassing accidents by using discrete pads. And you probably did not know that there are safe and effective prescription medications to help you avoid accidents and to help you urinate if you are having trouble with urinary retention (can’t produce urine easily.)

Life After Stroke 

The quality of life and satisfaction with life are important issues that you should not neglect after a stroke. It may sound vague, but ‘Life After Stroke,’ has a place on the Post-Stroke Checklist because your quality of life and your feelings about your quality of life are important, even if that cannot be as easily measured as some of the other items on the checklist.

Activities of Daily Living 

Your ability to independently take care of your basic everyday needs can change after a stroke. Activities of daily living include feeding yourself, dressing yourself, taking care of personal hygiene, bathing, brushing teeth, and caring for hair. If you need help with your activities of daily living, this can be tough on your caregiver. It can also be challenging for you from an emotional and psychological standpoint. You should discuss your ability to manage your activities of daily living with your health care team. Your occupational therapist can help you with crafting day-to-day agendas and obtaining devices or kits to help you safely take care of your activities of daily living. 

Mobility

Mobility describes your ability to get around. Your mobility may decline after a stroke due to weakness, balance problems, loss of sensation or vision impairment. While this sounds discouraging, most mobility problems can be managed once they are properly identified. For example, if you feel that walking is a challenge, your physical therapist can figure out if it is your balance or your muscle strength that is causing the problem. A cane could make a world of difference for your mobility. If your therapist identifies a sensory problem in your foot, then a special shoe can give you the extra support you need to regain some of the mobility you lost after a stroke. With professional attention, you can maximize your mobility, even if you are dealing with a stroke-induced handicap. 

Secondary Prevention

Preventing another stroke is the most effective way to maintain your health and avoid disability after a stroke. Preventing a repeat stroke is called secondary prevention. After a stroke, a number of stroke risk factors are usually identified, and these risk factors can be managed to reduce the chance of having another stroke. 

The Post-Stroke Checklist in Action

A study evaluating the usefulness of the Post Stroke Checklist looked at patients in two very different locations- Singapore and the United Kingdom. Results were overwhelmingly positive, with stroke survivors and their health care providers reporting that the Post Stroke Checklist is both useful and easy to use.

Sources:

Philp I, Brainin M, Walker MF, et al. Development of a poststroke checklist to standardize follow-up care for stroke survivors. J Stroke Cerebrovasc Dis. 2013;22(7):e173-80.

Ward AB, Chen C, Norrving B, et al. Evaluation of the Post Stroke Checklist: a pilot study in the United Kingdom and Singapore. Int J Stroke. 2014;9 Suppl A100:76-84.

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