E-17 Tailoring rehabilitation
Personalised medicine is now the next goal for biomedical healthcare, based on genomics and better analysis of health data which will allow the best treatment to be selected and the best dose to be used. Rehabilitation has been personalising its management for many years; the importance of setting individual goals was understood by 1968 when Kiresuk and Sherman introduced goal attainment scaling, which I have argued is an excellent way to establish goals but not to measure outcomes. However, we have not extensively researched how to achieve tailoring, which means to “make or adapt for a particular purpose or person.” [Oxford English Dictionary.] We are committed to person-centred care, though Nicola Kayes and Christina Papadimitriou suggest we may not be good at achieving it. This page introduces some ideas and articles about tailoring rehabilitation to help you achieve good tailoring.
Table of Contents
The competency.
The expert rehabilitation professional should be “Able to identify and tailor specific interventions for a patient, including, if necessary, an evaluation at a suitable point to determine effectiveness.” This will be particularly concerned with specific interventions within the expertise of the professional. Still, they should be familiar with general principles and must consider their choices in the context of all other plans and choices. A document outlining indicative behaviours, knowledge, and skills needed for tailoring rehabilitation, and giving some references, can be downloaded.
Introduction
The challenge in all healthcare is to use evidence from studies on large groups of patients and apply it to the person you are seeing. The evidence usually gives a probability that the outcome will be better and an estimate of the size of the benefit and any risks. The evidence can never predict with certainty what will happen to your patient. In biomedical healthcare, most decisions concern single actions, giving a specific drug, or undertaking a specific test, though this is increasingly becoming more complex.
In rehabilitation, multiple actions and interventions apply to almost every patient and, in most cases, one intervention may affect other actions and be affected by other interactions. Further, they are often mutually dependent. These features add to the pre-existing complexity that is part of the biopsychosocial model of illness.
Despite this, in most situations, a professional can give a reasonable estimate of benefits and risks for most of their actions, provided they are aware of a complete formulation and of all other current or planned actions.
Context and tailoring rehabilitation treatment
An action can only be selected and adjusted for an individual if the professional has all the necessary information. For example, it would be wasteful to consider making a personal ankle-foot orthosis for someone with weak ankle dorsiflexion one week after a stroke because it will improve quickly and not need the orthosis. On the other hand, if the person has motor neurone disease, planning for what might be needed would be appropriate.
The example is obvious, but the principle is universal. A complete formulation of the person’s situation is crucial before making significant decisions. The formulation must allow the professional to be confident that the decision is likely the best.
Next, the selection must consider other actions already planned or happening. If someone else is already treating the same problem, adding a second intervention is wasteful and potentially harmful. An intervention with a different primary goal may additionally influence the target of the selected action, which may be wasteful or harmful.
Third, the planned intervention may have additional effects which interact with other interventions. The most straightforward example is using a drug to control spasms and spasticity; the side effects may influence cognition, arousal, and swallowing and have a more significant adverse effect than benefit.
Thus, tailoring should only occur in a rehabilitation planning meeting or by knowing the existing plan and considering its place, contacting any other professional if an interaction is possible.
The person’s wishes, values, priorities, and opinions must be sought; this is the vital third contextual influence. For example, one person may prioritise the benefit over the side effects, and another not, or the person may not be concerned about the problem being treated.
How to tailor rehabilitation treatment.
Most articles on personalised medicine are about biomedical treatments based on genetic or other biological information, such as pharmacology, better to estimate a person’s response to the treatment.
NHS England has a web page introducing a personalised care model that links to various related pages. It is mainly concerned with care rather than treatment, as seen in their personalised care operating model. However, the page emphasises that shared decision-making is central to personalised care and provides a guide.
Thus the first step in providing tailored rehabilitation must be to discuss matters with the patient.
Shared decision-making has been advocated for many years. In 1997, Cathy Charles and colleagues emphasised, “It takes at least two to tango.” They set out four key characteristics:
- There must be at least two participants, the professional and the patient.
- Both parties must share information actively.
- Both parties must work to reach a consensus decision.
- They must agree on the decision.
The MAGIC programme (Making Good Decisions in Collaboration) was developed by the NHS and evaluated by Natalie Joseph-Williams and colleagues, who found five challenges to full implementation:
- We already do. People did not recognise the need to change.
- We don’t have the right tools. Professionals believed it could only occur if they received a formal decision aid.
- Patients don’t want shared decision-making. Patients may indeed want different degrees of involvement, but their interest is often ignored.
- How can we measure it? The professionals want to know how they could measure the benefits.
- We have too many other priorities. The perceived effort needed is rated too much for the perceived benefits.
Alice Rose and colleagues reviewed shared decision-making within rehabilitation goal-setting meetings and found that few studies reported truly person-centred practice; they recommended more education. More recently, Mary Beach and Jeremy Sugarman have advised on improving shared decision-making, particularly suggesting selecting significant decisions, using aids when available, and being egalitarian and respectful.
Evaluation of selected treatment.
It would be best to consider how you and the patient will know that the chosen treatment is helpful; most decisions in rehabilitation are made on minimal evidence. It is unrealistic to think that a standardised measure used by an independent observer can be used.
The most straightforward approach is to find a simple measure the patient or a relative can use. If the outcome is an alteration in an activity, then a simple timed or counted measure of performance should be used, preferably one that can be used weekly to give a better estimate. Examples include the time to walk to the nearest shop, the number of mistakes in writing a sentence, a relative’s numerical rating of speech clarity using the same sentence, and the time taken to get dressed.
You should also ask the person to rate side effects if expected.
Patient control.
A vital part of tailoring treatment can be to allow the patient to control it. This primarily applies to external treatments like drugs or electrical stimulation. In these instances, the person or a relative should be given information on how long to wait before altering something, how large any increment or decrement should be, and upper and lower dose limits.
For treatments that involve practice, patients will often benefit from guidance on how and when to increase the duration or complexity of the activity being practised. Again, encouraging patients and their families to control their work increases their engagement and often leads to better outcomes.
In both these circumstances, suggesting a simple measure will allow the person to make a more informed judgement and may motivate them.
Conclusion.
Tailoring rehabilitation treatment for a patient depends upon many other processes. First, one must have a suitable formulation of the clinical situation so that options for treatment are identified correctly. Next, one should either be part of a rehabilitation planning meeting or, more usually, be aware of other treatments and decisions so that one can discuss any interactions that might arise. Third, the patient must be involved in deciding as an equal partner to the extent they wish. Next, a short, simple measure of the desired outcome should be identified, one the patient or family member can use regularly, usually weekly. In many cases, the patient and family should be guided on how to alter the treatment and encouraged to make these decisions independently. This uses your skills in patient education and encouraging self-management.
