Giving PREP2 Predictions

Purpose
Giving PREP2 predictions to patients and their family can be challenging conversations. These conversations are more likely to go well if you are well-prepared. The purpose of this section is to provide information for how to deliver PREP2 predictions, including strategies and phrases that might be helpful.

If you are currently implementing PREP2 with a phased approach, then you may not need to read all of the material below just yet. Phase 1 of implementing PREP2 involves obtaining and using Excellent and Good predictions. Phase 2 of implementing PREP2 involves obtaining and using all four predictions.

Overview
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 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.

Good news may be bad news
Bad news is any news that drastically and negatively alters the patient’s view of their future. For many patients, recovery means a return to their normal life with a resumption of their previous activities. Sometimes anything less than back to normal is a disappointment. In the context of the PREP2 prediction tool this means that even a good prognosis can be bad news.

Predictions are not provided in absolute terms
For the Excellent and Good predictions we use phrases like ‘most likely’ ‘fairly normally’ and ‘most’. 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 practicing.

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 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”

If the patient has an overly pessimistic understanding, you can forecast your message with phrases such as:

“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”

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
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 an Excellent prediction

As you might expect delivering an Excellent prediction is relatively straightforward. The difficulty in this situation is not that you are giving them negative information but that they might not think it is credible information. You can help to overcome this difficulty by being confident in the way you provide the prediction.

These patients are:

- - <80 years old with a Day 3 SAFE score of 5 or more
  - 80+ years old with a Day 3 SAFE score of 8 or more

Information for the patient and their family:

- - Based on our assessments, your hand and arm have the potential to regain very good movement.
  - You can expect to be able to use your hand fairly normally for most day to day activities within the next 3 months.
  - The focus of your rehabilitation will be on 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 an excellent upper limb outcome within the next 3 months.
  - They can expect to be using their upper limb fairly normally for most activities of daily living.
  - Upper limb rehabilitation can focus on promoting normal function by improving strength, coordination and fine control, and avoiding compensation.
  - A programme of self-directed upper limb activities may be beneficial.
  - 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 Good prediction (based on SAFE score)

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 (Phase 1)

Information for the patient and their family:

- - Based on our assessments, your hand and arm have the potential to regain fairly good movement.
  - You can expect to be able to use your hand and arm for most day to day activities within the next 3 months.
  - Your hand may still be affected by slowness, weakness or clumsiness.
  - The focus of your rehabilitation will be on 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 hand for most activities of daily living, though function may remain affected by slowness, weakness or clumsiness.
  - Upper limb rehabilitation can focus on promoting function by improving strength, coordination and fine control, and minimising compensation.
  - 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 Good prediction (based on being MEP+ from TMS )

These patients are any age with a Day 3 SAFE score < 5 and MEP+ on TMS testing at Day 3 – 7 post-stroke (Phase 2)

Information for the patient and their family:

- - 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.

*TMS stands for Transcranial Magnetic Stimulation. This assessment involves holding a device against the side of your head, which makes a click when it activates the area of the brain that controls muscles on the opposite side of the body. More basic information about TMS can be found here.

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 hand for most activities of daily living, though function may remain affected by slowness, weakness or clumsiness.
  - Upper limb rehabilitation can focus on promoting function by improving strength, coordination and fine control, and minimising compensation.
  - 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 their abilities will remain limited. 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 make some limited improvements in upper limb function.

These patients have a SAFE score less than 5 at 3 days post-stroke, and TMS cannot elicit MEPs in their paretic upper limb 3 – 7 days post-stroke. However, their total NIHSS score 3 days post-stroke was less than 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 use 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 have a SAFE score less than 5 at 3 days post-stroke, TMS cannot elicit MEPs in their paretic upper limb, and their total NIHSS score was 7 or more 3 days post-stroke.

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 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 giving and 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.

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, 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. 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 Stewart (38 y)
Clinical information: Left hemisphere PACI
PREP2 information: SAFE score = 5
PREP2 prediction: Excellent
Additional information: Mr Stewart works in a call centre. He enjoys going to the gym. He has a toddler that lives with him on weekends. He is right-handed.

Mrs Booker (87 y)
Clinical information: Left hemisphere LACI
PREP2 information: SAFE score = 6
PREP2 prediction: Excellent
Additional information: Mrs Booker lives in an independent unit at a retirement village and enjoys playing the piano and bowls. She is right-handed.

Mr Leong (80 y)
Clinical information: Right hemisphere LACI
PREP2 information: SAFE score = 7
PREP2 prediction: Good
Additional information: Mr Leong lives with his wife. He enjoys fishing and reading. He is right-handed.

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.