PREP2 Advanced: Predictions

 

Obtaining predictions

Obtaining a prediction always starts with obtaining a SAFE score from the patient each day until you are able to determine a prediction category, or up to and including Day 3 post-stroke.

If the patient has a SAFE score less than 5 on Day 3 after stroke, you need to obtain their NIHSS score on Day 3 and carry out TMS testing between Day 3 and Day 7.

 


TMS is used to stimulate the motor cortex on the stroke-affected side of the brain, to see whether a message can get through to the hand (First Dorsal Interosseous) and arm (Extensor Carpi Radialis) muscles of the paretic upper limb.

    • If motor evoked potentials are observed using surface EMG (i.e. MEP+) this means that the motor cortex and its descending motor pathways are still working and the patient has potential for a Good functional outcome for the upper limb.
    • If MEPs are not observed (MEP-) this means that the motor cortex and its descending motor pathways are not working at that time. The NIHSS score from Day 3 is then used to determine whether the patient is most likely to have a Limited (NIHSS score < 7) or Poor (NIHSS score ≥ 7) functional outcome for the upper limb.

It is worth noting that:

    • Patients with a SAFE score as low as zero can be MEP+, and therefore are likely to have a Good functional outcome for their upper limb even though they might have great difficulty activating their hand and arm muscles themselves at the time of testing.
    • Patients with a SAFE score as high as 4 can be MEP-, and therefore have a Limited or Poor upper limb functional outcome despite traces of muscle activation.

 

Delivering predictions

You can see a video on delivering predictions here.

When delivering predictions remember:

Predictions are for the hand and arm only
Predictions relate to the functional outcome of the hand and arm at 3 months after stroke, and they are not for the whole person, or their whole life. It is important to keep this in perspective. People who have a SAFE score less than 5 on Day 3 who have a Good prediction because they are MEP+ have more severe initial motor impairment, that also be affecting their lower limb and trunk. However, the Good prediction is only for their upper limb. People with Limited and Poor predictions for their upper limb are likely to have lots of other things to work on in rehabilitation such as their walking, communication and swallowing. It’s also important to use your judgement when considering the patient’s overall situation. For example, if the patient is not expected to survive their stroke, then it would probably be better not to provide them with a prediction, until you see whether they recover.


Predictions are not provided in absolute terms
For the Limited and Poor predictions we use phrases like ‘most likely’ ‘may’ and ‘unlikely’. The information also clearly identifies the focus of the upper limb rehabilitation and reminds patients of their responsibility for practising. 


It’s good to avoid labels
It’s important to avoid ‘labelling’ patients and using terms like Excellent, Good, Limited and Poor in conversations with patients and families. Instead, it’s better to give them and their families a verbal and written description of what they can expect. You will notice that the written information given to patients and families avoids using these terms too. 


Choose an appropriate time and place
If you are the one to deliver the PREP2 prediction, you need to consider where you might deliver the information, and the level of privacy and support available. You can also consider having a colleague present.

For patients with a SAFE score of less than 5, TMS is needed to make a prediction. This test can be done in a separate space, such as a procedure room. Family may be invited to be present if this is what the patient wants.  This can provide an opportunity to share the prediction in a private space, with family present.


Start with what the patient thinks, then forecast your message
It can be helpful to start by asking the patient what their understanding of the situation is, and using that as a way into your message. For example, “I’m here to talk about what you can expect for your hand and arm. What’s your understanding of how it’s doing and how it might recover?” You listen to their response and build on it to forecast your message.

If the patient has a Good prediction, but an overly pessimistic understanding, you can forecast your message with:

    • “I realise things don’t look too good at the moment, but I have some good news for you”
    • “I can understand why you’re feeling down about what’s happened, however I have some good news for you”
    • “There’s good reason to be optimistic about your hand and arm recovery”
    • “Most patients in your situation actually recover quite good use of their hand and arm”

If the patient has a Limited or Poor prediction, but an overly optimistic understanding, you can forecast your message with phrases such as:

    • “I wish I could share your optimism”
    • “I’m concerned about the results of the TMS test we did with you”
    • “I’m sorry I have to tell you this”
    • “I wish I had better news”

After delivering the prediction gauge the patient’s emotions and reaction. Surprise and relief are common when people hear more positive news than they were expecting. Sadness, disappointment, and anger are common when people hear more negative news than they were expecting. Empathetic statements can help, such as:

    • “How are you feeling about this news?”
    • “I understand if you’re feeling disappointed about this”
    • “This is really hard to hear”
    • “I’m sure you were hoping for better news than this”

It may then help the patient to develop a clear plan for the future, but first ask if they are ready for this discussion.  All PREP2 predictions, including Limited and Poor, have a clear rehabilitation focus and discussing these can be very helpful.

Be clear, consistent and confident when delivering the prediction, consider your body language and show empathy. Summarise the main message and check for understanding.

Please refer to the downloadable information sheet for phrases that may be useful when sharing PREP2 predictions with patients and their families.


Provide verbal information and written information
It might be helpful to review the Using and Supporting PREP2 section in the PREP2 Basic module regarding supporting and using all four prediction categories. This provides more detail on communicating predictions. Reinforce your discussions with patients (and their families) by providing written information on their PREP2 prediction category: PREP2 Prediction Information


More than one discussion might be needed
You need to be willing to have an ongoing dialogue with the patient and their family. They are going to think about what you have said and may want to talk about it again to check their understanding and ask new questions. It is also important that the wider clinical team can reinforce the PREP2 prediction and answer patients’ questions too. Education and training for staff who support PREP2 predictions is essential.


Things can change
It is important to remember that a new stroke or progression of stroke symptoms which results in worsening upper limb weakness means that the PREP2 prediction tool should be started again. Count the day of the new stroke or progression as Day 0. If the patient’s prediction category changes, you will need to convey the new prediction to the patient, their family and the clinical team.


Expectations of recovery can change over time
Patients often have unrealistic expectations initially, thinking they will be back to normal in a few days. As they move through rehabilitation they come to understand it will take longer than this, but many patients continue to expect a full recovery eventually. In the context of PREP2 it’s important to remember that the predictions are for upper limb function at 3 months after stroke. This means that patients might expect to continue improving past this point, and some will.


A consistent, coordinated approach is needed
Ensure that current and future clinical staff (including inpatient, outpatient and GP) are aware of the PREP2 prediction that has been shared with the patient. Staff may need to reinforce the PREP2 prediction, and support focussed rehabilitation. Clear documentation of a patient’s PREP2 prediction should be placed in the clinical notes. Download PREP2 Prediction Information for help with each PREP2 prediction category. It also may be useful to discuss PREP2 predictions at multidisciplinary team meetings etc. Ongoing education to staff, and other stakeholders, about PREP2 is important to allow a consistent and coordinated approach.


Referral for psychological support should be considered
It is important at the time of giving any PREP2 prediction to be conscious of the effect this new information might have on a person’s expectations for their recovery. Referral for psychological support should be considered for any patient who is having emotional/adjustment difficulties following a stroke. This is particularly important for patients with a Limited or Poor prediction. You may wish to have an automatic referral to psychology for these patients.


Cultural and spiritual support can be helpful
Patients and families might find it helpful to talk about the prediction and what it means for them with people who can provide appropriate cultural and spiritual support. This is particularly important for patients with a Limited or Poor prediction. You may wish to suggest or facilitate getting in touch with cultural and spiritual support staff available in your setting, or in the patient’s community.

 

PREDICTIONS

The following information below can be downloaded here.

Delivering a Good prediction

Discussing a Good prediction is still usually a positive experience. Some patients might be disappointed that their hand and arm are likely to still have some problems in 3 months, whereas other patients might be pleasantly surprised.

These patients are:

    • 80+ years old with a Day 3 SAFE score of 5, 6 or 7 
    • Any age with a Day 3 SAFE score < 5 and MEP+ on TMS testing at Day 3 – 7 post-stroke. Good predictions for these patients will usually be shared after TMS testing by a staff member with PREP2 Advanced training. When delivering their prediction it is important to remember that they have had TMS testing to obtain their prediction, and that they can start from a position of profound weakness. A ‘guarded’ Good prediction might be more appropriate when the patient has significant other impairments such as sensory loss, vision loss, and apraxia. These other factors might make it more difficult for them to use their hand and arm in daily activities 3 months after stroke, resulting in a Good outcome at the lower end of the range of ARAT scores for this category. In this situation, it’s important to focus on providing upper limb rehabilitation that maximises the patient’s function despite these impairments.

Information for the patient and their family when TMS was used to obtain the prediction:

    • The TMS assessment shows that the pathways between your brain and your arm are working
    • This means your hand and arm have the potential to regain fairly good movement within the next 3 months
    • You can expect to be able to use your hand and arm for most day to day activities, although it may still be affected by slowness, weakness or clumsiness
    • The focus of your rehabilitation will shift from helping you regain movement to improving your strength, coordination, and fine control
    • You will need to practice using your hand and arm to help it improve
    • It’s important to avoid using your other hand to compensate
    • This prediction is based on your current status, and is not a guarantee, as some people recover more or less than expected

Information for the clinical team:

    • This patient is most likely to have a Good upper limb outcome within the next 3 months
    • They can expect to be using their upper limb for most activities of daily living, though function may remain affected by slowness, weakness or clumsiness
    • Upper limb rehabilitation can focus on promoting normal function by improving strength, coordination and fine control, and minimising compensation
    • If patients have an initial SAFE score < 5, rehabilitation can initially focus on assisting the return of voluntary muscle activity
    • This prediction is based on the patient’s current status, and is not a guarantee, as some people recover more or less than expected

 

Delivering a Limited prediction

Discussing the Limited prediction with the patient is about identifying that they will regain some movement (positive statement), but that fine finger control is unlikely. These patients are usually quite impaired at this stage (SAFE score < 5). They will have had TMS testing and probably as part of this would have been told, or come to understand, that the connections to their hand and arm aren’t working very well. So, it might not be completely unexpected to hear that their recovery will be limited, though it is always a disappointment. The good news is that their stroke is at the moderate to milder end of the NIHSS scale and they will be able to regain some movement, possibly including grasp function.

These patients:

    • are any age
    • have a Day 3 SAFE score less than 5
    • are MEP- on TMS testing at 3 – 7 days post-stroke
    • have a Day 3 NIHSS score < 7

Information for the patient and their family:

    • The TMS assessment shows that the pathways between your brain and your arm have been damaged
    • You can expect to regain some limited arm movement within the next 3 months
    • You might also regain some hand opening and closing, though fine finger control is unlikely
    • You will probably need to use the other hand to help with some activities
    • The focus of your rehabilitation will be on maintaining and improving the strength and flexibility of your hand and arm, and helping you to adapt activities to incorporate this hand and arm wherever possible
    • You will need to practice using your hand and arm to help it improve.
    • This prediction is based on your current status, and is not a guarantee, as some people recover more or less than expected

Information for the clinical team:

    • This patient is most likely to have a Limited upper limb outcome within the next 3 months
    • They can expect to regain some movement and possibly grasp function, though recovery of dextrous hand function is unlikely
    • Upper limb rehabilitation can focus on improving strength, active range of motion, and joint flexibility, and adapting daily activities to incorporate both upper limbs when necessary to achieve a task
    • This prediction is based on the patient’s current status, and is not a guarantee, as some people recover more or less than expected

 

Delivering a Poor prediction

Note that just as for all other predictions the patient is told what the focus of the rehabilitation will be. This makes it clear that they will be treated, and hopefully allays their concerns that their Poor prediction means we might give up on them. We are not giving up it’s just that the goals need to change so they are realistic and worthwhile. Therapy can focus on learning to compensate well with the non-affected hand and arm so they can manage everyday tasks (such as tying shoelaces with one hand, single-handed buttons, unscrewing jars etc). This will minimise their disability and help them to live as independently as possible, despite their upper limb impairment. It is possible that they do better than expected, but this means a limited recovery (not good or excellent).

These patients:

    • are any age
    • have a Day 3 SAFE score < 5
    • are MEP- on TMS testing at 3 – 7 days post-stroke
    • have a Day 3 NIHSS score of ≥ 7

Information for the patient and their family:

    • The TMS assessment shows that the pathways between your brain and your arm have been damaged
    • You may regain some movement in your arm within the next 3 months
    • You might be able to use your weaker hand to stabilise objects, but fine finger control is unlikely
    • The focus of your rehabilitation will be on maintaining the flexibility of your hand and arm, preventing shoulder instability or pain, and helping you learn to perform day to day activities with your other hand or both hands where possible
    • This prediction is based on your current status, and is not a guarantee, as some people recover more or less than expected

Information for the clinical team:

    • This patient is most likely to have a Poor upper limb outcome within the next 3 months
    • They are unlikely to recover useful upper limb function, though may be able to use their weaker hand as a stabiliser in bimanual tasks
    • Upper limb rehabilitation can focus on preventing secondary complications such as pain, spasticity, and shoulder instability, and reducing disability by helping the patient learn to compensate with their other upper limb for activities of daily living
    • This prediction is based on the patient’s current status, and is not a guarantee, as some people recover more or less than expected

 

Essential reading

Watch Basic and Advanced Delivering PREP2 Predictions for how to deliver PREP2 predictions.


Frequently asked questions

When and how do I share the PREP2 prediction with the patient?
You can share the prediction once it has been determined. This is usually within the first 3 days for an Excellent prediction, and usually between Days 3 – 7 for the remaining predictions. You need to consider where you might deliver the information, and the level of privacy and support available. You can consider having a colleague present. It is helpful to determine the patient’s perceptions/expectations of their recovery, and how they might like to receive the information (what level of detail). Be clear, consistent and confident when delivering the prediction, consider your body language and show empathy. Summarise the main message and check for understanding. The patient should be given written information to support the verbal information.

Make sure the rest of the clinical team is aware of the prediction, and that it has been shared, to ensure there can be a coordinated, consistent approach. A copy of any written information given to the patient, and information for the clinical team, should be placed in the clinical notes. Following this, all effort should be made to share the prediction information at multidisciplinary team meetings and prediction information should be included in handover on to any future clinical teams.


Is sharing a prediction any different after TMS testing?
The prediction can be shared as soon as it’s known, usually by the TMS trained therapist who carries out the test. But occasionally, patients don’t feel ready to hear their prediction straight away. It’s important to discuss this with the patient and their family at the time of TMS safety screening. If they would rather wait, then their prediction can be recorded in their clinical notes, ready for when the patient and their family ask for it. The screening checklist also prompts you to decide who is the best person to deliver the prediction – perhaps the therapist carrying out the test with a member of the patient’s medical team. The staff involved should have training or experience in delivering life altering information. It can also be helpful to mention the two possible outcomes (i.e. MEP+ or MEP-) of the TMS test beforehand, during TMS screening.  This could help the patient and their family to consider each outcome and its implications before a prediction is delivered.


Are there differences in the way a Good prediction is delivered, depending on whether TMS was needed to obtain the prediction?
Yes, there are some key differences.

For patients with a Day 3 SAFE score ≥ 5 their Good prediction will usually be given on Day 3. For patients with a Day 3 SAFE score < 5 their Good predictions will usually be delivered sometime between Days 3 to 7, after TMS testing. As such some patients have had longer with the uncertainty of not knowing how their hand and arm might recover and this might influence their response to hearing their prediction.

Patients who have TMS testing to reach their Good prediction are usually given some information about all possible outcomes, which includes Good, and Limited or Poor predictions. Having this information before TMS testing can be a useful forecast for patients, who can then be better prepared for the prediction they are given.

The amount of weakness present at the time of delivering the Good prediction is different. Patients with Day 3 SAFE score ≥ 5 will already have some movement of their affected shoulder and hand when their prediction is delivered. This may help them to understand their potential for recovery of Good hand and arm function, though they may still be disappointed that they are likely to be left with some slowness, weakness, or clumsiness. Patients with a SAFE score of < 5 will usually have moderate to severe weakness at the time their prediction is delivered. Their Good prediction may seem ‘unbelieveable’, particularly if there is no visible movement of their hand and arm at the time of TMS testing. Careful explanation, supported with tangible evidence from TMS recordings, might help a person to better understand their prediction.  The amount of weakness present may also influence how the rehabilitation plan is discussed. For example, if patients have an initial SAFE score < 5, upper limb rehabilitation can start by focussing on assisting the return of voluntary muscle activity before progressing onto improving strength, coordination and fine control.


What happens if the patient has another stroke during their admission?
A new stroke or progression of stroke symptoms which results in worsening upper limb weakness means that the PREP2 prediction tool should be started again. Count the day of the new stroke or progression as Day 0. If the patient’s prediction category changes, you will need to convey the new prediction to the patient, their family, and the clinical team.


Should we be giving patients negative predictions?
Negative predictions can be difficult for patients and families to hear. But patients deserve the opportunity to know what to expect so they can manage themselves and their time and their energy. For this reason, time and effort should be invested in training and preparing staff to have these conversations, so they have the necessary skills to provide predictions safely. Patients should have the necessary support, and referral to psychology when appropriate. Your organisation may need to put in place new guidelines regarding the required level of training for people giving these predictions, and appropriate referral pathways for additional support.


What if I give a Limited or Poor prediction and it is wrong?
The PREP2 prediction tool is correct for 75% of patients at 3 months post-stroke and 80% at 2 years post-stroke, and when the PREP2 prediction tool is wrong it is not wrong by much. The research has shown that we don’t see people with a Limited or Poor prediction who have a Good or Excellent outcome by 3 months or even by 2 years. The predictions are delivered using careful language, with phrases such as “most likely” and “unlikely”, rather than talking in absolute terms. This can help a patient understand that it is a prediction and not a guarantee. It is worthwhile noting that therapists are advised to use their clinical judgment and continue to progress a person who is still improving despite having met their predicted upper limb functional outcome.


What do I say if I give a patient a Limited or Poor prediction and they say, “I don’t think you’re right, I think my hand will get 100% better”?
Our responsibility is to be respectful of the patient and their views, without compromising the validity or credibility of information that is being provided. If they are being far too optimistic you could respond with something “I wish that were the case and I’m sorry I don’t have better news for you. If anything changes and you do better than expected we can update the plan”. Our responsibility is to compassionately and respectfully provide information in a way that the patient and their family can understand if they choose to. It is not our responsibility to make them believe us.


What do I do if the patient is aphasic?
Consult the patient’s speech language therapist to discuss the best strategies for effective communication with your patient. If a patient is severely aphasic, and this limits their ability to understand the tests involved, then delivering PREP2 predictions may not be appropriate, although the information will still be of value to their family and the therapy team.


What do I do if the patient doesn’t speak English?
It is possible that family may be able to assist with translation, but using an interpreter may be required. Using an interpreter is regarded as best practice as it is possible that family may not directly translate the information as it is intended, potentially leading to misunderstanding.


Is referral for psychological support necessary when giving predictions?
It is important at the time of giving any PREP2 prediction to be conscious of the effect this new information might have on a person’s expectations for their recovery. Referral for psychological support should be considered for any patient who you believe is having emotional difficulties following a stroke. It is particularly important to consider this for those receiving the Limited or Poor prediction.

 

Case Examples
Here are some case examples. Think about how you’d approach discussing the PREP2 prediction with each patient and their family, and discuss with a colleague.

Mr Sharma (56 y)
Clinical information: Left hemisphere LACI
PREP2 information: SAFE score = 0, MEP+
PREP2 prediction: Good
Additional information: Mr Sharma works as an engineer in a large company. He regularly travels overseas. He is right-handed.


Mr Fisher (64 y)
Clinical information: Left hemisphere PACI
PREP2 information: SAFE score = 0, MEP-, NIHSS = 5
PREP2 prediction: Limited
Additional information: Mr Fisher has some word finding difficulties. He has a supportive wife, and together they own and operate a small business. He is keen to return to work.


Mrs Parata (58 y)
Clinical information: Left hemisphere TACI
PREP2 information: SAFE score = 0, MEP-, NIHSS = 9
PREP2 prediction: Poor
Additional information: Mrs Parata is currently unable to walk and her communication is impaired by dysarthria. She lives alone, and has a supportive daughter who lives nearby. She is right-handed.


Quiz

Click here for a quiz to assess your learning on the PREP2 Advanced: Obtaining and Delivering PREP2 Predictions section.

Once the practice quiz has been completed with at least 70% correct you will be emailed a link to the final quiz for this section.

If you pass the final quiz with at least 80% correct you will be emailed a certificate of completion for the PREP2 Advanced: Obtaining and Delivering PREP2 Predictions section. There is no limit to the number of attempts for the practice or final quiz.