Long-Term Stroke Care

Anne Forster

Stroke is an ancient disease, recognized since the time of Hippocrates, when the term apoplexy was used to describe someone being suddenly struck down. The lay term stroke emerged in the seventeenth century, and this term has only more recently replaced apoplexy in the medical literature.¹

Despite centuries of reports of this condition and early understanding of its cause, rigorous scientific exploration was slow to gain momentum. However, in the past 50 years, an acceleration in stroke research has had an impact on the care of people with this common condition worldwide. The journal Stroke was first published in the 1970s. The first addition of the UK Clinical Guidelines for Stroke (1997) was the forerunner for other national guidelines. These in turn led to the development of audit tools to support a continued cycle of service improvements. Other developments have been more recent: stroke research only began to flourish in China in the early twenty-first century,² the World Stroke Organization was established in 2006, and the European Stroke Organisation came into existence in 2007.

Methodologic and technologic advances have underpinned this more dynamic approach to stroke care. The methods of trial evaluation, including health economic analysis, have been massively refined and enhanced and a supportive infrastructure has been developed. The Cochrane Library, founded in 1993, created a platform for worldwide dissemination of research.³ The Stroke Review Group was among the first to be registered in the library, which, as of 2015, contained 176 active reviews.

Despite advances in identification and reduction of risk, stroke remains a major illness. Annually, 15 million people worldwide suffer a stroke. Of these, 5 million die and another 5 million are left permanently disabled, placing a burden on family and community.⁴ At least 900,000 people living in England have had a stroke, of whom 300,000 live with moderate to severe disability.⁵ Stroke is the leading cause of serious, long-term disability in the United States.⁶ Stroke is an age-related condition, although people of any age can be affected; approximately 25% of strokes occur in people younger than age 65,⁷ and 5 in 100,000 children suffer a stroke.⁸

The burden of stroke is considerable at a population, societal, and individual level. Costs are estimated at £7 billion a year in the United Kingdom, with £2.8 billion direct costs to the National Health Service (NHS) in the United Kingdom, £2.4 billion in informal care costs, and £1.8 billion in income lost to productivity and disability.⁵ Unplanned visits from the doctor and hospital readmissions contribute to the economic burden and cause stress and discomfort to the patient. Poststroke hospitalization rates are significantly higher than for a matched nonstroke cohort.⁹ One study reported that less than 15% of surviving stroke patients had not been readmitted to hospital in 5 years.¹⁰ Cumulative risk of recurrent stroke at 10 years is 39%.¹¹

Stroke Care Pathway

The achievements in stroke research have clarified the stroke care pathway. Stroke must be treated as a medical emergency and requires rapid screening and assessment in order to instigate appropriate treatment strategies within the hyperacute stage of onset. This should be followed by assessment by the multidisciplinary team (occupational therapists, physiotherapists, speech therapists, and nurses) and transfer, if required, to a stroke rehabilitation unit.¹² For patients with mild to moderate disability, discharge home with the support of an early supported discharge team is recommended.¹³ The robust evidence that rehabilitation in a stroke rehabilitation unit saved lives and reduced disability was a game-changer in terms of the care provided to stroke patients and their caregivers.¹⁴ With the recent advent of perhaps more glamorous treatment options in the acute stage of stroke, the crucial importance of appropriate rehabilitation must not be overlooked. The benefits of treatment in a stroke rehabilitation unit are retained for up to 10 years after the stroke incident.¹⁵ This treatment option should be provided to all people, as benefits are reported regardless of age, sex, and disability levels.

Long-Term Recovery

Despite these advances, long-term recovery can be poor. Many stroke survivors and their caregivers feel abandoned as service support (if provided) is gradually withdrawn in the weeks following the event.¹⁶ Although some information is available from long-term cohort studies, this lack of routine follow-up for all stroke survivors also limits the generalizable data available to inform our understanding of the long-term consequences of stroke.

The South London Stroke Register, established in 1995, is the largest stroke register in the United Kingdom. Although their data should be considered in the context of the services available and the demographic profile of participants included, useful insights into the scale of the challenges following stroke is provided. From a cohort of 3373 stroke survivors, 20% to 30% had poor outcomes over a range of physical, social, and psychological domains.¹⁷ Rates of inactivity remained stable until year 8, when they increased. Rates of cognitive impairment fluctuated until year 8, when they also increased. Similar levels of anxiety and depression were reported in a smaller, 10-year cohort of 416 patients in Sweden, but their levels of physical activity were more positive, with over 50% reporting the same level of physical activity as prestroke.¹⁸

It is reported that up to 40% of stroke survivors have loss of function of the upper limb at 1 year post stroke, 80% have reduced mobility, 40% have problems with swallowing, and 33% have aphasia.¹² Deficits in memory, attention and concentration, perception, spatial awareness (neglect), apraxia, and executive functioning are also consequences of stroke. Prevalence is difficult to estimate as their presentations may overlap; studies have used a range of outcome measures, which makes summarization difficult; and subtle cognitive problems (e.g., difficulty in scanning a page) may be missed by commonly used screening tools. Each impairment may have a considerable effect on a stroke survivor’s recovery, adversely influencing their ability to engage in physical and social activities. It is important to consider such impairments and appropriately assess, even if reviewed some months or even years after stroke, as they may have been overshadowed by more obvious physical disabilities in the acute stages. Visual field defects should also be considered.¹⁹ There are consistent reports that approximately one third of stroke survivors experienced some anxiety and depression at any one time.²⁰

Predictive Models

The domains of The World Health Organization’s International Classification of Functioning, Disability and Health (ICF) can provide a meaningful way of understanding these poststroke needs and inform development of service models.²¹ Numerous published studies have highlighted the relationships between these domains on the poststroke outcomes of mood disability and quality of life,²²^–²⁵ but no definitive predictive models have been created to inform service delivery. Reduction in walking ability may lead to loss of independence in personal activities of daily living, as well as causing social isolation, and is strongly associated with psychological and cognitive factors.²⁴ Resumption of valued activities (as identified by the person who has experienced the stroke) positively influences health-related quality of life, which may not necessarily relate to level of functional recovery.²⁶ The caregivers of patients with poor physical and emotional states are likely to have poorer emotional outcomes themselves.²⁷

Unmet Needs

The range of problems experienced by stroke survivors and their caregivers often translates into unmet needs defined as “expressed needs that are not satisfied by current service provision.”²⁸ The needs are multifaceted and influenced by a range of social and environmental factors. A survey of more than 1250 participants investigated the prevalence of unmet needs in community-dwelling stroke survivors 1 to 5 years after stroke in the United Kingdom. Nearly half of respondents had one or more unmet long-term need. These needs related to information provision (54%), mobility problems (25%), falls (21%), incontinence (21%), and pain (15%).²⁹ Over half reported a reduction in leisure activities. Similar patterns of need have been reported in younger and older stroke survivors, more and less disabled, and different geographic settings.³⁰ Level of need may not necessarily be related to level of functional recovery.³¹ Although the level of need is generally high, it is important to recognize that some stroke survivors report no needs. Whether this is because they genuinely have no needs, or because they have accepted their current situation, or because they have no realistic expectation that any identified needs will be successfully met has not been fully explored.

Information Needs

The most commonly reported unmet need is for information, even months or years after the event.³² A Cochrane review indicates that active involvement of participants, for example, through opportunity to ask questions in a more educational format, is beneficial.³³ The needs of stroke survivors and their caregivers may differ. For the latter, a trajectory of information needs has been proposed with information on stroke and practical training skills provided in the early stages, to a focus on their own needs to participate in social activities, followed by support for planning for the future in the later adaption phases.³⁴ It is important to consider a strategy for information and educational provision for survivors of stroke and their families across the stroke care pathway and ensure that this is clearly documented and delivered rather than rely on opportunistic delivery.

Views of Patients and Their Caregivers

Many qualitative reports have highlighted the daily struggle for stroke patients and their caregivers. A systematic review and synthesis of 40 qualitative studies on adjusting after stroke from stroke survivors’ and caregivers’ perspectives presents a detailed and complex picture of fluctuating adjustment and acceptance, influenced by personal, interpersonal, and structural issues (e.g., interaction with health professionals, public awareness of the consequences of stroke).³⁵ Trajectories of recovery have been identified, indicating some survivors progress though disruption to adjustment and acceptance, whereas others experience cycles of disruption, adjustment, and acceptance, and others continue to experience disruption and decline. This can be exacerbated by a mismatch of the expectations and understandings between the health and social care professionals involved in the delivery of care and the stroke survivors and their caregivers. Realignment of a sense of self and undertaking and contributing to meaningful activity are of importance in the adjustment process, which may continue for years.³⁶

Evidence Base

There is a relatively small evidence base for interventions delivered to stroke survivors and their caregivers in the long term, with most evidence focused on the early stages of poststroke recovery. To identify components of an intervention that could be feasibly delivered in the community, an overview of stroke reviews in the Cochrane library was undertaken.³⁷ The focus was on participants who were at least 6 months post stroke at the start of intervention delivery. Outcomes of interest were those of importance to stroke survivors and their caregivers: perceived health status, participation, quality of life, and mood. Interventions were noninvasive and feasible for delivery in the community without medication or highly specialized equipment. Where there were statistically significant effects across the measures used in a domain, and these were derived from many trials with many participants with no serious risk of bias, the intervention was considered effective on this outcome. Where there was a statistically significant effect but with limitations due to number of participants, differences between measures of the same domain, or serious risk of bias, this was qualified as limited evidence of an effect.

Twenty-eight reviews were identified (which included 352 studies). Ten reviews reported a perceived health status outcome with information provision, inspiratory muscle training, fitness training, and tele-rehabilitation and qualified as limited evidence of an effect. Nine reviews reported mood, with limited evidence of improvements found for information provision and fitness training. Only one of the included reviews (information provision) recorded participation as an outcome with no evidence of effect. The same review reported a small effect on quality of life. Limited evidence from one study reported in two reviews suggested teaching procedural knowledge could reduce caregivers’ depressive symptoms and improve perceived health status. However, this intervention, which was tested in single-center study, has recently been evaluated in a large, multicenter trial in which the positive results were not replicated.³⁸

A comprehensive review of community-based interventions aiming to reduce depression and/or improve participation and health-related quality of life was undertaken by Graven and colleagues. Of 54 studies identified, less than half were aimed at participants over a year after stroke.³⁹ These reported evidence for the effectiveness of exercise and physical training⁴⁰^–⁴⁴ and some short-term benefits of physiotherapy.⁴⁵^–⁴⁶ Analysis of nine randomized controlled trials produced insufficient evidence of benefits of gait training for chronic stroke patients.⁴⁵^–⁴⁷ It seems more appropriate to use scarce therapy resources for targeted interventions (e.g., for fall prevention) rather than create a therapy-dependent service.

The importance of maintaining fitness is increasingly emphasized. A Cochrane review based on 45 randomized controlled trials showed that physical fitness (cardiorespiratory) training after stroke has beneficial effects on disability, walking endurance and speed, with minimal adverse events.⁴⁸ Another systematic review summarized 28 studies, which included 920 participants who were predominantly mild to moderately disabled, able to walk, and at least 1 year after their stroke. This review concluded that interventions that are aerobic, or have an aerobic component, can improve fitness even though the interventions provided did not meet the guidance of 30 minutes of moderate intensity physical activity most days of the week.⁴⁹ Increased physical activity is also beneficial.⁵⁰^–⁵¹

There are purposely developed courses available (e.g., www.exerciseafterstroke.org.uk and www.laterlifetraining.co.uk ), but rollout is limited. This may be due to apprehension of patients because of fear of risks, or lack of knowledge of benefits, or limited awareness of health professionals.⁵² Similarly, weekly exercise classes and circuit classes report some benefits in enhancing walking capacity (distance walked in 6 minutes).⁵³

Psychological and Emotional Support

The psychosocial consequences of stroke have been highlighted, yet successful models for the provision of psychological support remain elusive. Provision of psychological support involving routine assessment of patients and then input gradated according to need is recommended, but evidence for effectiveness is limited.¹² Such a model does, however, provide the flexibility to assess and address specific problems (e.g., cognitive disorders) within an overarching framework. For some cognitive disorders (e.g., memory problems), compensatory strategies such as pager systems, diaries, and electronic organizers may be helpful.¹² A recent synthesis of six Cochrane reviews (1550 patients) relating to rehabilitation for poststroke cognitive impairment (attention deficits, memory deficits, spatial neglect, perceptual disorders, executive dysfunction, and motor apraxia) concluded insufficient research evidence, or evidence of insufficient quality, to support clear recommendations for clinical practice.⁵⁴

Only gold members can continue reading. Log In or Register to continue