PREP2 Support: FAQs

 

When and how is the PREP2 prediction shared with the patient in the first place?
The prediction is shared 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. Consideration is given to who and where is best to deliver the information, and the level of privacy and support available. Time is given to help the patient to understand the prediction, and there is a check for understanding. The patient is given written information to support the verbal information. A copy of any written information given to the patient, and information for the clinical team, should be placed in the clinical notes by the staff member who delivered the prediction. 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.

If someone asks “I am having TMS testing soon, could you remind me what it is testing and what it might feel like?” what should I say?
It may be best to get a staff member trained in using or supporting TMS to answer this question for the patient. But in general terms, you could cover the following main points: 

• TMS provides a safe way of testing whether the movement pathways from your brain to your affected hand and arm are working or not at this time.
• TMS is a comfortable experience for most people.
• During testing the TMS operator will hold a coil against the side of your head, over your hair.
• The main things you’ll notice are a click noise each time the device it is activated, and they a light tap on their scalp, but this won’t be painful.

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.

The patient is aphasic, how was the prediction shared?
It is most likely that the prediction was shared in consultation with the patient’s speech language therapist, so that strategies for effective communication could be used. If the patient’s understanding of their upper limb prediction or rehabilitation focus seems unclear to you, then you could discuss this with the patient’s treating therapists.

The patient does not speak English, how was the prediction shared?
An interpreter or family member should have been used to translate the prediction information into the patient’s first language.

How does prediction information travel with the patient?
Your organisation should have a method to formally document PREP2 predictions. Most often predictions are recorded in the clinical notes, but there may also be other methods on electronic records systems. Ask a colleague or a member of your PREP2 implementation team if you are unsure. It is important for PREP2 prediction information to be handed over to ongoing services, and discussed with the appropriate new staff.

Is it possible for the hand and arm to recover better than predicted?
Yes. The predictions made by PREP2 are accurate for 75% of patients at 3 months post-stroke. For the remaining 25%, the prediction tool is too optimistic for about two-thirds of people. Most of these patients are people with an Excellent prediction who actually have a Good outcome. We think that erring on the side of optimism is preferable to the alternative, to avoid reducing patient motivation. Note that patients with a Limited or Poor prediction are not able to have a Good or Excellent outcome, as the damage to their motor pathways prevents them from regaining fine motor control. PREP2 predictions are most accurate for these groups, with 85% accuracy for Limited predictions, and 90% accuracy for Poor predictions. The remaining 15% of patients with a Limited prediction don’t do as well as expected, and have a Poor outcome. The remaining 10% of patients with a Poor prediction do a little better than expected and have a Limited outcome. PREP2 predictions are correct for 80% of patients at 2 years post-stroke, which is very reassuring.

Can the hand and arm keep improving beyond 12 weeks after stroke?
Yes. The brain can continue to change in response to practice and experience, throughout life. Therefore it’s possible for improvements to be made beyond 12 weeks after stroke. However, most people make most of their recovery of movement within the first 12 weeks after stroke. This is because of the unique biological conditions in the brain during this time. Improvements can be made after this time, however they are usually smaller, slower to develop, and require more effort.

Why do some people not recover hand and arm function as well as predicted?
There can be a range of reasons why some people don’t reach their predicted upper limb functional outcome. For example, their function might be limited by problems with their cognition, attention, and communication. They may also have other health problems that make it difficult to engage in rehabilitation. We are continuing to explore these factors with our research.

I’m part of the community rehabilitation team, and my patient is coming up to 3 months post-stroke. They want to know if they’ve achieved their predicted outcome. What should I say?
The only way to really know is by doing the Action Research Arm Test, and seeing whether their score lies in the range for their predicted outcome. However, this test isn’t part of routine clinical practice in many settings. If it’s unavailable, then it may help to consider whether their current upper limb functional capacity fits the overall description of that prediction. If their function is less than expected, and they are still experiencing meaningful improvements in their hand and arm, it would be worth considering further upper limb therapy to see if they can achieve their predicted outcome. A small number of patients simply take a little longer to get there. If their function is less than expected, but they are not experiencing any further improvements, it will be important to remind the patient that the prediction was not a guarantee, and that they may not achieve the outcome that was predicted. Unfortunately some patients don’t do as well as expected, and this might be related to other factors that limit their upper limb capacity, such as sensory loss, vision loss, apraxia, and musculoskeletal conditions. In this case, this patient’s goals might need to be reconsidered, and therapy might need to be reoriented towards finding ways to optimise functional independence within the limits of the impairment the patient is experiencing.

What do I do if I can’t answer a patient’s question?
You could discuss their question with, or direct it to, a member of the patient’s therapy team.