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Specialist rehabilitation service What are the key components of an effective specialist

General approach to searching evidence

3. Specialist rehabilitation service What are the key components of an effective specialist

rehabilitation service?

Given the emergent evidence that specialist rehabilitation is effective [12–19], a key goal of research has been to deter-mine just exactly what components of those services are crucial for achieving better outcomes. It is perhaps unsur-prising that there has therefore been a growth in focus on this ‘black box’ of neurorehabilitation [55–64]. This section considers in particular whether patients (with acute stroke) benefit from any one aspect of the rehabilitation ‘black box’

in terms of decreased impairment and/or improved func-tion, participation or QoL?

Recent steps to more fully identify, define and operational-ize these components in stroke [63–66] have been under-taken in the Post-Stroke Rehabilitation Outcomes Project (PSROP)3with findings recently published in a special issue of the Archives of Physical Medicine and Rehabilitation [67–75].

The key goal of PSROP is to determine the impact that each stroke rehabilitation ‘activity or intervention’ of itself and col-lectively has on patient outcomes on discharge [65]. This is of course no small endeavour given the complexity of rehabilita-tion popularehabilita-tions, intervenrehabilita-tions, control groups and outcome measures (i.e. each level of the PICO format [76,77]). However, the framework proposed and the methodological develop-ments undertaken show very real potential for leading to a better understanding of separate and interdependent compo-nents/attributes of successful rehabilitation. DeJong highlights a number of cautions in interpreting the findings of PSROP [65], in particular the limited follow-up into the community and the observational/clinical practice improvement (CPI) rather than experimental nature of the work (meaning asso-ciation but not causation is examined). However, the second criticism (concerning a CPI methodology) must sit alongside the fact that the randomized clinical trial format has fallen short in answering some of the important questions in neu-rorehabilitation [22,66].

A very real strength of PSROP is that it has proposed and validated a taxonomy concerning what goes on in rehabilita-tion after stroke. Whilst individual professions have proposed

checklists of input (e.g. physiotherapists [78]), there has been little consensus about the nature of contributions between and across the different disciplines. The clear specification of both interventions and activities (the purpose for which inter-ventions are delivered) is an advance in the specification of rehabilitation. As a result, there seems very real potential to determine the patterns of delivery of rehabilitation services across different settings and countries, and to find out the pro-portional effects of the various components of what is by def-inition, an interdisciplinary and holistic process. In their commentaries about PSROP, Ottenbacher [79] and Jette [80]

reiterate that caution is needed in interpreting and acting on findings prior to replication and hopefully in studies where bias and confounding are more controlled. However, they too acknowledge the black box of rehabilitation has been at least partially illuminated by PRSOP with such findings as:

• Fewer days from stroke symptom onset to rehabilitation admission being associated with better functional outcomes at discharge and shorter length of stay [74].

• Despite recognition that the environment influences task performance, little time was spent in community mobility activities by physiotherapists before discharge [73].

• More occupational therapy time spent on higher-level activ-ities such as community integration, functional mobility, home management, and leisure activities and greater use of high level and complex speech and language therapy activities linked with better functional outcome at discharge. However, in both instances, these tend to be the least common activities focused on during inpatient rehabilitation [69,75].

• The nature, duration and intensity of rehabilitation inter-ventions and actions varied across sites [68,69,72–75,81]. In particular, poorer outcome were found in the site where greater time was spent on administrative versus treatment/

therapeutic activities [81].

As noted by DeJong [65], there are aspects of rehabilitation that were not fully evaluated in the PRSOP study. Such processes include team coherence and organizational milieu and whilst other research would suggest they too are part of the ‘black box’ of effective rehabilitation [21,82,83]. There is undoubtedly more work to be done in this area if the crucial components of specialist rehabilitation are to be determined and prioritized.

Conclusion

Implications for health service organization and policy

The need for neurorehabilitation provision is escalating and evidence that more targeted and timely rehabilitation is the most appropriate provision is also accumulating. However, for health policy, a number of pieces in the jigsaw puzzle are still missing. When is the timeliest provision for people with con-ditions such as multiple sclerosis and Parkinson’s disease?

What is the best approach to utilizing goals in rehabilitation?

Chapter 12: Background to neurorehabilitation 105

3The study involved seven centres and 1291 patients where stroke rehabilitation practice was documented in a standardized format, and its relationship to inpatient outcomes investigated.

A European study investigating similar issues is currently running – The Collaborative Evaluation of Rehabilitation in Stroke Across Europe (CERISE).

106 Part 2: Neurological symptoms/problems

Is the provision of one rehabilitation strategy compared to another (or no treatment) cost effective? We have few answers to these questions and until we do, evidence based policy in rehabilitation will probably remain a rare beast. The knowledge base gained from stroke research is a real warning that inadequate rehabilitation results in preventable death, deterioration and harm [84]. These are not inconsequential findings. For society to manage prioritization in provision of services, it is clear that investment in research is crucial.

Whilst calls for this are frequent [85] and increasingly soci-eties appears cognizant of this need, without an increase in good rehabilitation research answering the important ques-tions, decisions will be made on the absence of evidence and that is unlikely to be in patient’s best interests.

Implications for research

There is certainly no shortage of research that needs to be done in rehabilitation. Despite the advances that have been noted, we need to facilitate research that:

• Has better specification of experimental and alternate interventions.

• Utilizes, and where required develops, more robust meas-ures of outcome appropriate to those interventions and to what matters most to patients (in particular ‘participation’

or role fulfilment).

• Adopts more rigorous approaches to research method-ology including appropriate power in studies so that defini-tive results are determined when they actually do exist along with appropriate blinding and randomization in RCTs.

• Is not deterred from developing and utilizing appropriate methodologies to answer important questions, not all of which will be answered by trial data.

It is also important to note in considering and devising reha-bilitation research, that lifelong neurological conditions pose a number of challenges for traditional research methods including [22]:

(a) The effects of a long-term condition unfold over many years – a time scale beyond the scope of most clinical trials.

(b) Interventions are complex and played out over a long period, changing progressively in the light of the individual’s response to what has gone before. They are frequently mul-tidisciplinary in nature, and any one intervention will often overlap and interact with others.

(c) The effect of any clinical intervention must be assessed not only in the context of other clinical care, but also against a complex background of social and environmental factors, which are not adequately described by existing quantitative techniques. To control properly for these ‘unseen con-founders’ potentially requires a much larger sample than the total affected population. This may be particularly so for the less common conditions.

(d) By definition, in the context of a long-term condition,

‘cure’ or reversal of pathology is rarely a goal for treatment.

Instead, the intended outcomes focus on reducing the impact

of the disease – for example on QoL or societal participation.

Whilst a variety of standardized ‘measures’ have been develop-ed to evaluate these issues, many appear to provide a less than satisfactory reflection of real life experiences in chronic conditions [28,86].

(e) Response shift is likely to occur throughout the trajec-tory of a long-term condition and may confound evaluative efforts [87].

These issues are not small but they are ones we need to con-front and respond to. Without doing so, it is likely that patients and their families will get less than they should from rehabili-tation despite the efforts of those doing their best to deliver evidence-based, high-quality interventions/services.

In conclusion recent advances in neurorehabilitation are exciting and the evidence base to inform decision making in practice is growing. Less than 10 years ago, rehabilitation was arguably a ‘Cinderella’ of medicine and of research [88]. This is no longer the case with it increasingly recognized as an important area of management in neurology, and as making a difference. There is much to learn from the gains made in stroke rehabilitation where much hard work, focused atten-tion and collaboraatten-tion between leading clinicians and researchers across a range of medical and non-medical dis-ciplines has seen clear answers emerging in response to a number of important questions. Such gains are vital for those patients with other neurological conditions where disability is frequent, but definitive answers less so.

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PA RT 3

Neurological diseases

Background

Stroke refers to the clinical syndrome of sudden onset of focal or global disturbance of central nervous system function, with no apparent cause other than a vascular one [1]. Ischaemic stroke is responsible for about 80% of all strokes, intracerebral haem-orrhage for 15%, and subarachnoid haemhaem-orrhage for 5%. A transient ischaemic attack (or TIA), has the same symptom com-plex as a stroke, but with a resolution of these symptoms within 24 h [2]. Most TIAs resolve within 1 h. It is increasingly understood that TIAs and minor strokes represent a continuum of disease; some now suggest that the time-based definition of TIA yield to a tissue-based definition, as approximately one third of people with clinically diagnosed TIAs will actually have structural changes visible on neuroimaging, such as diffusion-weighted MRI scanning (DWI) [3,4]. Other terms used in the past to describe stroke and TIA, such as cerebrovascular accident (CVA) and reversible ischaemic neurological deficit (RIND), lack specificity, and have generally fallen out of common use.

Mechanism and pathophysiology

Strokes and TIAs occur when the blood supply to the brain is disrupted, usually for one of the following reasons:

• Occlusion of the lumen of an artery by a blood clot that develops as a local thrombus, often in relation to atheroscle-rotic plaque rupture and endothelial injury, with activation of the local coagulation cascade.

• Distal occlusion of the lumen of an artery by a blood clot that has embolized from the heart (atrial fibrillation), aortic arch or arterial system.

• Local or embolic blood clots related to hypercoagulable states (hereditary or, secondary to systemic disease or malignancy).

• Occlusion of the arterial lumen following the dissection of an arterial wall.

• Narrowing of smaller arteries due to arteriosclerosis.

• Rupture of a blood vessel wall (artery or vein), leading to haemorrhage.

• Hypotension secondary to cardiac arrest or decreased cir-culating blood volume.

During stroke or TIA, normal cellular function is lost in the affected area of the brain, leading to the presenting symptoms.

If normal blood flow is not restored quickly, a infarct core of dead cells will form; these cells do not recover. In many cases of stroke, there also exists an area of tissue around the infarct core (the ischaemic penumbra), which is metabolically threat-ened, but theoretically viable [5]. If blood flow can be restored quickly, this penumbral tissue may be salvagable, hopefully resulting in a better clinical outcome for the patient.

Epidemiology

Each year, about 15 million people around the world experi-ence a stroke; of these, 5 million die and 5 million are left per-manently disabled [6]. In developed countries stroke is a leading cause of death and dementia, and is the number one cause of adult disability [6]. In general, stroke is a disease of the elderly, and so these trends will increase over the next several decades as the result of an aging population combined with the disturbing persistence of many well understood

‘modifiable’ risk factors, including hypertension, dyslipi-demia, smoking, diabetes, obesity, physical inactivity, exces-sive alcohol intake and diets high in saturated fats and low in fruits and vegetables.

Clinical scenario

A 67-year-old woman is brought to your local emergency room by ambulance. Her family, who accompany her, tell you that exactly 1 h and 15 min ago, she experienced a sudden onset of complete paralysis of her left arm and leg, with an associated facial droop, while having her evening meal. There was no associated loss of consciousness, and the patient is not aware that anything in particular is the matter, apart from a slight headache. Her physical examination confirms a dense left sided hemiparesis, with associated neglect phenomena, including a left visual field cut. You have been able to ascer-tain that she has hypertension, dyslipidemia, and normally smokes one package of cigarettes per day. She is not taking aspirin; her only medication is a diuretic. An emergency com-puted tomography (CT) head scan does not demonstrate any obvious abnormality. An electrocardiograph (ECG) shows her to be in atrial fibrillation.

C H A P T E R 1 3

Acute stroke management and prevention of recurrences

Gord Gubitz

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