PREP2 Support: Advice
When supporting predictions and focused rehabilitation, it is important to remember a few points about the predictions, therapy, and communication.
Predictions
What does PREP2 predict?
PREP2 predicts one of four categories of upper limb outcome at 3 months post-stroke based on the Action Research Arm Test (ARAT) score. It predicts the patient’s capacity to complete tasks such as those in the ARAT. It does not predict the extent to which the patient will use their hand and arm to complete these types of tasks in their daily living. While PREP2 doesn’t directly predict the extent of real-world upper limb use, the four categories do relate to the amount and quality of real-world upper limb use reported by patients. So it appears that the prediction categories do map on to different levels of real-world performance. It’s also important to note that people with high impairment can still achieve high levels of functional independence and participation in meaningful activities, through adaptation and compensation for any ongoing impairments they experience.
Predictions are for the arm and hand only
Predictions relate to the functional capacity 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.
Predictions are based on the patient’s current status, and are not a guarantee, as some people recover more or less than expected
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.
There can be a range of factors that mean a patient recovers less than expected, and therefore doesn’t achieve their predicted upper limb outcome. For example, their functional capacity might be limited by problems with cognition, vision, 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. There is also a responsibility on the patient for practicing, and it is possible that a patient’s ‘potential’ may not be met if a patient chooses not to engage in their therapy. These factors might also mean that some patients take a little longer than 3 months to achieve their predicted outcome. It is worth considering further rehabilitation if a patient is continuing to experience meaningful upper limb recovery at 3 months.
Therapy
Everyone needs therapy
The role of rehabilitation is to help patients define and achieve a rewarding life after stroke. The aims of therapy lie on a continuum. At one end therapy helps the patient to recover what they have lost, and at the other end it helps them adapt and compensate for what can’t be recovered. Therapy for each patient will lie somewhere on this continuum, usually with a mixture of recovery and adaptation, so they are enabled to participate in the activities that are important to them. The predicted upper limb outcome will influence where upper limb therapy lies on the continuum. People with an Excellent or Good prediction will benefit from therapy weighted towards recovery, whereas people with a Limited or Poor prediction will benefit from therapy weighted towards adaptation and compensation.
Patients with a Good prediction can start from a position of profound weakness
About half of patients who need TMS are MEP+. This means that if a patient has a Day 3 SAFE score less than 5, they have a 50/50 chance of being MEP+ and the potential for a Good upper limb outcome. Therapy will need to accommodate this, and progress appropriately. Rehabilitation can initially focus on assisting the return of voluntary muscle activity, then progress to include interventions to improve strength, coordination, and fine control. Incorporating practice of everyday tasks should be encouraged and supported when possible. There are two versions of the written information for patients and families. One for patients who have a Good prediction based on their SAFE score and age, and another for patients who have a Good predicted based on the TMS test showing they are MEP+.
The therapist determines the type of therapy
PREP2 helps patients and therapists to focus on appropriate rehabilitation goals, but it can’t prescribe the best types of upper limb therapies to use with each patient. It is up to the therapist to decide, based on the patient’s current status, the skills and experience of the therapist, and the available resources. It is important that the patient is regularly reassessed using appropriate measures to monitor changes in their upper limb functional capacity over time, and to ensure that their therapy and goals are continuously updated in response to these changes. It might be helpful to give the patient several opportunities to discuss their progress throughout rehabilitation to ensure that everyone’s expectations of recovery remain aligned.
Treat what you see
A small proportion of people do better than expected. It is important to use objective assessment and your clinical judgment, and continue to progress a person who is still improving despite having met their predicted upper limb functional outcome. Consider a person with a Good prediction who is using their upper limb for most activities of daily living with some slowness, weakness and/or clumsiness. If they are continuing to show improvements in function and control it may be appropriate to engage them in further challenging therapy. Likewise, patients with Limited and Poor predictions who are showing return of movement in the hand or arm should be guided to adapt daily activities to incorporate these movements, wherever possible. Further intervention and education may help maximise independence.
Communication
What about hope?
It’s important to support your patient’s hope. Early after stroke, most people hope to be living independently and returning to the rewarding roles and activities they enjoyed before the stroke. The role of rehabilitation is to help patients define and achieve a rewarding life after stroke, and this is an ongoing process. One part of helping people re-establish their life after stroke is providing them with appropriate expectations for their hand and arm recovery. In giving people information about this, we might be able to help them recalibrate what they’re hoping for and how they hope to achieve it. This can be done with kindness, compassion, and patience, as they work through the process of constructing their new sense of self. We can always support our patient’s hopes for the future, and their process of defining and establishing their new life, regardless of their upper limb prediction.
If we avoid the difficult conversations about the patient’s predicted upper limb outcome, we leave the patient to work it out for themselves. It can be upsetting for people to realise that their outcome is less than they had hoped for. If this occurs after they’ve left our care they have to make sense of this realisation without our support. Having the difficult conversations near the beginning of rehabilitation allows you to provide your patient with the support and guidance they need. It also means you have time to talk with your patient about the possibilities for their future, as they start to redefine themselves with a sense of hope. This will involve multiple conversations over time, as they and their family adjust to life after stroke.
People adjust at different rates
Patients and their family and friends go through a period of adjustment and recalibration after stroke. And this process occurs at different speeds for different people. A patient might move towards redefining themselves quite quickly, while a person close to them spends a bit longer hoping for a return to their life before stroke. This can sometimes create tension and challenges within relationships. It’s good to remember that PREP2 predictions are likely to influence this process of adjustment not just for the patient, but for all those close to them as well. You might need to have several discussions about the future with the patient and their loved ones, as they each make these adjustments in their own ways and in their own time.
It’s good to avoid labels
Notice that the written information given to patients and families avoids using the words Excellent, Good, Limited, or Poor as this might create the impression the prediction is for their whole recovery instead of just their hand and arm. It’s important to avoid ‘labeling’ patients and using these terms 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.
Share PREP2 information
It is important that as a patient moves through different services (inpatient, outpatient, community, GP) that PREP2 information travels with them. Clear documentation of a patient’s PREP2 prediction in the clinical notes, discharge summaries, and handover documentation will allow a consistent and coordinated approach to the upper limb management, and avoid confusion around the patient’s expectations for their recovery of upper limb function. Sharing PREP2 information at MDTs and ward rounds etc. will be useful. It is also important to make sure that all other people working with the patient are aware of the PREP2 prediction tool, and what the prediction means, so that they are able to support the patient with the prediction whilst working with them.
Referral for psychological input might be appropriate
It is important to be conscious of the effect that prognostic 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.
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.
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.