Stroke Rehabilitation Clinical Practice Guidelines: More to Do, More to Learn

The national celebration of the 25th anniversary of the Americans with Disabilities Act last year gave us the opportunity to simultaneously recognize how far we have come in our societal efforts to reduce discrimination of people who are disabled by stroke and also how little we have done to enable full reintegration into the community. This event coincided with the 25th anniversary of the publication of the Institute of Medicine (IOM) statement that defined and described clinical practice guidelines as a means of improving medical care. In this context we can recognize the duality of how far we have come but how little we have done to enable and advance the development, dissemination, and especially implementation, of clinical practice guidelines.

In its seminal description in 1990, the IOM defined clinical practice guidelines as "…statements that include recommendations, intended to optimize patient care, that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options".1 The 2 major components of guidelines were noted to be: a systematic review of the research evidence regarding a specific clinical question, condition, or intervention, together with statements of the strength of the evidence on which clinical decision-making is based; and an explicit set of practice recommendations addressing how patients with the specific condition should be managed, based on both scientific evidence and value judgments regarding benefits and risks of care options. More recently, in 2011, IOM2 created a set of standards designed to improve the “trustworthiness” of clinical practice guidelines. In addition to providing specific suggestions for the conduct of the systematic literature review, articulation of the practice recommendation, and the need for external review, a heavy focus was placed on suggestions governing the creation of the guideline development panel, including specific recommendations regarding composition, dealing with conflict of interest, and transparency. Also emphasized was the need for follow-up and updating.

It is in this context that the outcome of the American Heart Association/American Stroke Association (AHA/ASA) effort to comprehensively update existing Clinical Practice Guidelines for Stroke Rehabilitation,3 reported in its entirety in this issue,4 should be viewed. Clearly, an update is justified since practice and knowledge have advanced sufficiently since the release of earlier rehabilitation guidelines.

The rationale and benefits of clinical practice guidelines have been widely recognized; these include: enhancing quality of care, increasing consistency of practices across settings, serving as educational tools, providing credible resources for patients and practitioners, minimizing the extent to which personal gain by professionals is a basis on which to select interventions, serving as measures against which quality of care can be judged, and providing more predictability regarding utilization of resources. Some guidelines might reduce costs of care, while others might increase costs, but the goal of most guidelines is to improve the value of care processes, i.e. quality and effectiveness of care relative to the cost and amount of resources used. Ultimately, however, it is the impact on practice stimulated by these statements that makes the development and utilization of guidelines most compelling. Exerting this impact is a complicated undertaking that requires adoption of the guidelines by practitioners, many of whom may be actively or passively resistant to changing practice behaviors. Surprisingly absent from the 2011 statement, but present in the original 1990 description, was a discussion of methods for dissemination, utilization, and implementation of practice guidelines.

The American Stroke Association (ASA) and the American Heart Association (AHA) serve as not only long time exemplars of how to develop and disseminate clinical practice guidelines, but also as fervent advocates for the creation and use of these statements. It is to the Associations’ credit that they have undertaken to develop and update Stroke Rehabilitation Guidelines, employing their usual extensive and rigorous process of review, writing, editing, and vetting. Guidelines for clinical rehabilitation practices are notoriously difficult to conduct, for many reasons, including: the variability and the multiplicity of the confounding factors that likely influence outcomes; inconsistency in the use of outcome measurement tools and parameters; complexity and variability of the interventions studied; the limited number and quality of studies in the field; and the inherent bias and lack of scientific rigor in many of the existing studies. Stroke rehabilitation is a discipline that has suffered from a lack of large-scale rigorous clinical trials, leading to significant gaps in the evidence base. Therefore, most rehabilitation guideline efforts rely on combinations of the findings derived from combinations of a few scientific studies and consensus opinion. The ASA and AHA were not the first stroke rehabilitation guideline developers; the Agency for Healthcare Policy and Research (now Agency for Healthcare Research and Quality) developed Stroke Rehabilitation Clinical Practice Guidelines in 1995.5 Similar efforts have been undertaken by the Department of Defense in collaboration with the Department of Veterans Affairs,6 and agencies in Australia,7 United Kingdom,8 Canada,9 and others.

The AHA/ASA Guideline, developed through an elaborate and rigorous effort by an interdisciplinary team led by Drs. Carolee Winstein and Joel Stein and published in this issue, is thorough, thoughtful, comprehensive, highly organized, well-referenced, and well written. Its content is both evidence-based and practical. This document can be expected to serve as an excellent educational resource and a useful practice support tool.

An important consideration in the development of stroke rehabilitation clinical practice guidelines is the multidimensional nature of the post-stroke disability and recovery experience. Onset of stroke carries with it multidimensional implications in medical, physical, cognitive, emotional, social, economic and other domains. For this reason, it is noteworthy that the present Guideline emphasizes the efforts of “a sustained and coordinated effort from a team, including the patient and his or her goals, family, friends, and other caregivers...” The effectiveness of the rehabilitation program therefore also relies heavily upon coordination and communication across team members, and this is underscored in the Guideline. Thus, the “system of care” and associated resources are major themes of this document.

Accordingly, this present clinical practice guideline appropriately and fairly extensively describes the organization of rehabilitation programs and services at the macro level (including examples and descriptions of each individual level of the care continuum) with as much detail as it does the specific patient-specific assessment and intervention techniques at the more micro level. Interestingly, a sizeable number of the recommendations in the Guideline that are specifically related to the organization of rehabilitation care are based on evidence that is ranked relatively highly.

Additionally the Guideline provides a useful resource to understand and review prevention and management of various comorbidities. Of note, evidence to support these preventive actions are rated predominantly B and C, except for venous thromboprophylaxis, fall prevention techniques, and osteoporosis reduction interventions, all of which are rated at stronger levels, generally A to B.

Detailed and comprehensive sections are provided to describe various clinical patient assessments, impairments that result from the stroke, and interventions. While much of the discussion focuses on the application of traditional sensorimotor therapies, exercise programs, and assistive devices, it is significant that newer techniques and technologies such as virtual reality, robotics, and computer-based gaming, are also included. Considerable emphasis is placed on the role of repetitive practice, and it is pointed out “exercise intensity is the most challenging parameter to determine but also the most critical to ensure a dosage that is safe, attainable, and adequate to elicit a training effect”. Explicit declaration of this statement is important, because of the overwhelming evidence of the value of measuring intensity and practicing with increased intensity and the simultaneous limited adoption of the implications of this practice.

The roles of long-term management and transitions to improve and insure activities and participation in the home and community are also noted stated explicitly, and interestingly, with generally very strong evidence ratings. Sadly, an exception to the presence of strong evidence ratings is in the area of return to work, in which evidence for effectiveness of interventions is limited. Employment of people with stroke remains a critical understudied and inadequately addressed domain in the post-stroke recovery process.

Clearly, the content of this Guideline is not sufficient to constitute a singular tool on which to base practice and education in stroke rehabilitation; one cannot provide high-quality rehabilitation simply by reading this document and following its recipes as in a “cookbook”. However, the statements and recommendations do provide guidance to clinicians to support effective care and importantly, also provide a core of evidence on which to base the care. Ultimately, it is the implementation and utilization of the evidence-based practice recommendations that will enable the Guidelines to have their biggest impact. For many reasons, translation of knowledge gained through research often fails to be applied in practice, and widespread utilization of evidence-based practices often seems to be an elusive goal. Successful adoption of guidelines-specified practices draws on principles and techniques used in the fields of education, psychology, and even marketing and public relations. Often, Guideline documents are lacking an explicit plan for implementation and utilization of the recommendations that result from the otherwise extensive and detailed guideline development process. This means that we as clinicians and scientists must address dissemination and implementation on our own with as much vigor and rigor as we address the guideline development process.

An additional favorable outcome of the guideline process is identification of what we DON’T know, i.e. research and practice gaps. In the case of stroke rehabilitation, the list of gaps is extensive. There is a particular interest in determining whether evidence exists for many of our prevailing clinical practices. Also important, however, is the development of new and innovative approaches to practice. It should be noted that although developing and implementing clinical practice guidelines do not by themselves facilitate the creation of novel interventions directly, they may indirectly drive the formation of novel insights and effective interventions.

These guidelines will be most useful as practice aids, decision support tools, and educational resources for clinicians who practice rehabilitation. However, it is critical that all of us go beyond simply viewing these documents as a basis for understanding the present state of rehabilitation practices; we should also use them as a basis on which to measure and improve the effectiveness of our care, influence public policy, plan for future research, and innovate and test novel practices. In this way, these Guidelines will exert their maximum impact.