Prediction Groundwork
Delivering predictions
Delivering a PREP2 prediction can be challenging for clinicians, and it can also be a difficult moment for patients and their families. This module is designed to equip you with the practical knowledge needed to make prediction delivery a better experience for everyone. Being prepared and practicing prediction delivery is critical before providing life‑altering PREP2 predictions to people recovering from stroke.
Before you start
Is the patient ready for a prediction?
Some patients may not feel ready to receive their PREP2 prediction straight away. This should be explored during TMS safety screening, where you can ask how they prefer to receive information and whether they want the prediction immediately or at a later time. If the patient chooses to wait, record the prediction in the clinical notes and make it available when they ask for it. Staff should also decide who is best placed to deliver the prediction. Ideally this will be someone trained or experienced in communicating life‑altering information. Briefly describing the two possible outcomes (Good or Limited/Poor) during screening can help patients and families consider each possibility ahead of time.
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 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.
Communicating PREP2 predictions
Explore the following topics:
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For patients with a SAFE score of less than 5, TMS is needed to make a prediction. Before agreeing to TMS, patients and their families should understand the two possible outcomes of the test and when they can expect to hear the results.
The TMS 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.
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.
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Begin by asking what the patient thinks is happening with their hand and arm. Their answer gives you a starting point and helps you tailor your message.
Examples of opening questions:
“What’s your understanding of how your hand and arm are doing?”
“How do you think recovery is going so far?”
This sets the tone and helps you forecast your message.
Before delivering the prediction, you can also check the patient’s expectations and how much detail they want.
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If the prediction is Good, but the patient is pessimistic:
“I realise things don’t look too good at the moment, but 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 prediction is Limited or Poor, but the patient is overly optimistic:
“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.”
Forecasting helps patients emotionally prepare for what comes next.
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Deliver the information clearly and confidently, using supportive body language.
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 when the patient is ready.
Be clear, consistent and confident when delivering the prediction, consider your body language and show empathy. Summarise the main message and check for understanding.
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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 usually have more severe initial motor impairment that may 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.
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For the Limited and Poor predictions, we use phrases like ‘most likely’, ‘may’, and ‘unlikely’. The information also clearly identifies the focus of upper limb rehabilitation and reminds patients of their responsibility to practise.
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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.
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Provide written information to reinforce the discussion. Ensure the wider clinical team knows the prediction has been shared, and place copies of written material in the clinical notes. Prediction information should be reinforced at MDT meetings and included in handover to future teams.
FAQs
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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.
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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”?
What 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.
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.