"Comprehensive" stroke centers don't necessarily offer comprehensive rehabilitation. They don't have to.
Will I walk again? Speak fluently? Be able to dress myself?
During National Stroke Month each May, professionals working with stroke
survivors are reminded of a paradox. On the one hand, the postacute stroke phase – the period following acute care and medical stabilization – occupies the rest of the clients’ lives. The postacute population – seven million in the United States alone and tens of millions of stroke survivors worldwide – is exponentially larger than the 795,000 incident strokes encountered annually during the acute phase of care in the United States. Moreover, a multitude of secondary sequelae proliferate postacutely, and can last a lifetime. Accordingly, the costs associated with stroke-induced impairments and their care during the postacute stroke phaseCitation1 – and the sheer number of survivors exhibiting the above deficitsCitation2 – exceed those of other conditions often garnering more attention. Survivors justifiably ask the above questions because most retain devastating, lifelong, residual, impairments.Citation3
Despite this phenomenon, our society remains relatively unaware of the burdens encumbered by the 25-million stroke survivors worldwide.Citation1,Citation2 It is unlikely that one will find celebrities wearing “stroke survivor” ribbons, nor are there widespread campaigns directed toward the medical, therapy, and equipment needs of this rapidly-increasing population.Citation2 Similarly, given their intensive focus on early care, acute stroke clinicians often lack knowledge of the component parts, importance, and legitimate efficacy of postacute rehabilitation. Likewise, our experience is that family physicians – who usually encounter survivors postacutely – may lack formal training or knowledge of common practices in postacute rehabilitation. Accordingly, education regarding stroke recovery and rehabilitation should be a core component of stroke center organization.Citation4 Such efforts would surely foster a greater understanding of the critical importance of these topics, and of the team members that constitute a postacute stroke team. Currently, primary and comprehensive stroke center accreditation standards only include education of all providers, as well as education of other providers and the community relative to acute services.
Evidence of this reduced emphasis on postacute stroke care extends beyond a paucity of public and clinician knowledge. Hospitals accredited as “stroke centers,” receive this designation based solely on the infrastructure available to support care during the acute stroke phase. Admittedly, this constitutes an important
However, diminishing mortality trends have produced a rapidly-growing survivor population. Postacute neurological deficits are common, and their economic impact is immense, approximating $59,000-$230,000 per patient.Citation6 Based on this burden, it would seem that stroke centers would be ideally situated to assure high-quality acute care, which would also serve to mitigate postacute personal societal costs. But, as the stroke center accreditation requirements are currently stated, a patient could be admitted to an accredited stroke center and receive outstanding acute care, yet have no assurance of optimized, postacute, evaluation, treatment, and/or follow-up during the period in which the largest impairments and expenses are encountered.
Concerns about the care contrasts between acute and postacute phases extend beyond the care provided at “comprehensive” or “primary” stroke centers. For example, the Centers for Disease Control, professional organizations, and/or state health organizations often facilitate large acute stroke databases. Ostensibly, these databases are advantageous in that collection of the same variables across multiple acute centers enables research questions regarding optimal acute care to be addressed. These programs report that their missions are to “ … measure, track, and improve the quality of care and access to care for stroke patients from onset of stroke symptoms through rehabilitation and recovery.”Citation7
However, such claims are unattainable, as patient outcomes are sparsely followed postacutely by these programs. Specifically, accredited stroke centers are required to follow stroke survivors at 90 days, but do not typically obtain data further out (i.e., 6 months, 1 year) when substantial adjustments to community life, secondary sequelae, and other stroke-related consequences are likely to occur. Without tracking outcomes longitudinally, ascertainment of the contributions of acutely based treatments and patient variables (e.g., demographics; etiology) “ … through rehabilitation and recovery” is implausible. These shortfalls are compounded by the application of acute measures (e.g., National Institutes of Health Stroke Scale) that are poorly correlated with – and/or not sensitive to – relevant postacute care outcomes.Citation8 Other stroke-specific measures (e.g., the Fugl–Meyer) should be applied longitudinally (e.g., at 3, 6, 9, and 12 months postictus) to truly characterize the trajectory of stroke and its consequences on survivors, their care partners, and their communities.
In short, programs that are built on the assumption that stroke is strictly an acute event, attributable to poor risk factor management and/or access to acute interventions do little to mitigate impairments experienced by the majority of stroke survivors. We must better address the immense postacute burdens encountered by patients, care partners and society.
Truly "comprehensive" stroke care begins with marketing and training
Efforts to bridge this gap must begin by clarifying the types of services that are required to maintain a stroke center designation This is important since accredited stroke centers do not disclose that their accreditations are almost entirely based on availability and quality of approachesFootnote1 administered to a small, briefly-encountered (≈5.3 days)Citation9 group. Admittedly, comprehensive stroke centers are required to have physical therapy, occupational therapy, and speech-language pathology, and again need to have downstream resources (IRFs, SNFs, home health, outpatient) to which they may refer their patients. Nonetheless, in our experiences, the stroke center designation misleads patients who often anticipate high-quality care throughout the continuum, but may not receive it. The addition of the word “acute” to center designations would be a first step toward facilitating a greater understanding of the emphases of these centers. Beyond these nominal changes, stroke centers should also maintain close ties with downstream clinical destinations (i.e., inpatient rehabilitation facilities, skilled nursing facilities, long-term acute care hospitals). This would be a first step in ensuring that stroke survivors receive quality care throughout the continuum. Stroke systems should also be incentivized to monitor patient's discharge dispositions and ensure they are matriculating to the appropriate destination. Concurrently, “comprehensive” stroke systems should assure qualified physicians, nurses, and therapists are available who have expertise in the treatment of stroke survivors. Any substantive stroke certification not only assures that appropriate personnel are in place but that they have requisite skills to assure competent care. The requirements for these personnel could be stipulated in revised certification criteria. Finally, access to care is essential, meaning that there need to be facilities to treat these patients in urban and rural settings, as well as reimbursement for such services.
The foundation of any strong care continuum is the deployment of effective measurements and treatments, at critical timepoints. In addition to hundreds of studies showing efficacy of postacute rehabilitative care, rehabilitative stroke units yield better outcomes than either aspirin or thrombolyticsCitation10,Citation11 Surely, stroke centers would be strengthened by adopting validated, postacute measurement approaches that would identify the best periods to incorporate such interventions, and that would track meaningful changes as different interventions and stages of care occur. Longitudinal databases like those mentioned previously would likewise be strengthened by administering measures well into the postacute phase, when community reintegration, stroke-related sequelae, care partner burden, and other variables are pronounced. As individuals venture into the postacute phase, measures of quality of life, participation in valued activities, and functional limitation would be beneficial in ascertaining the long-term value of acute interventions, as well as constituting a mechanism of monitoring patient progress.
Lastly, we must conceptualize stroke as a chronic disease. Like other diseases with a chronic trajectory (e.g., cancer), stroke has a discernible starting point, a period necessitating more intensive care, subacute stages where care may change or be lessened, followed by a focus on community reintegration, prevention of “relapses” (the rate of recurrent stroke is ≈15% over 5 yearsCitation12), and treatment of sequelae that develop and/or persist after subacute care has concluded. Physicians, nurses, and therapists need to be oriented to stroke as a chronic condition during their educations, and stroke survivors should receive lifetime care as needed. Primary care physicians – who most often treat stroke survivors postacutely – also need to be sensitized to the needs of the stroke survivor, and must develop their own care pathways when stroke survivors require treatment for secondary complications.
While continuing to provide acute care at current levels, we must also extend the provision of postacute services and supports with the same veracity as acute care resources, to address the unmet, long-term needs of the rapidly-increasing, stroke survivor population. Such services are likely to contribute to improved outcomes, reduced hospital readmissions and associated costs, and enablement of longitudinal monitoring of patients across the recovery continuum to optimize outcomes. As one example, attempts are being made to emphasize risk factors that lead to stroke. More aggressive measures could be taken to publicize the treatable risk factors of stroke (e.g., hypertension, diabetes, coronary artery disease, obesity), and to assure that these factors are addressed postacutely to mitigate acute stroke risk. The educational backgrounds, quality, and quantity of time spent with postacute survivors situate occupational and physical therapists to be key providers of any educational, support, and interventions needed to assure that secondary sequelae and re-hospitalizations are prevented.
Conclusion
Comprehensive stroke centers undoubtedly reduce mortality and improve certain outcomes. Yet, most stroke survivors – including those who pass through these systems of care – continue to exhibit discernible impairments that undermine community re-integration and quality of life. These impairments are usually lifelong, significantly increasing the burden of care on others and on society. For stroke centers to truly be considered “comprehensive,” they must monitor the outcomes – and serve the needs of – postacute stroke survivors. These needs include assuring the provision of quality, evidence-based, care in the weeks and months poststroke; not just during the 5–7 days when patients are typically situated in the acute care hospital. Stroke centers that are truly “comprehensive” must also monitor outcomes of their survivors well into the postacute period, when community integration and secondary sequelae frequently emerge, and assure that quality rehabilitative personnel are in place to assure optimal outcomes.
Acknowledgement: This is an ‘Original Manuscript’ of an article published by Taylor & Francis Group in Topics in Stroke Rehabilitation on 2019, available online: https://doi.org/10.1080/10749357.2019.1691806