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.
References
1. Institute of Medicine.
1990: Clinical Practice Guidelines: Directions for a New Program. Washington,
DC: The National Academy Press.
2. Institute of Medicine.
2011. Clinical Practice Guidelines We Can Trust. Washington, DC: The National
Academies Press.
3. Duncan PW, Zorowitz R,
Bates B, et al. 2005. Management of Adult Stroke Rehabilitation Care: A
Clinical Practice Guideline. Stroke.36:e100-e143.
4. Winstein CJ, Stein J,
Arena R, Bates B, Cherney LR, Cramer SC, Deruyter F, Eng JJ, Fisher B, Harvey
RL, Lang CE, MacKay-Lyons M, Ottenbacher KJ, Pugh S, Reeves MJ, Richards LG,
Stiers W, Zorowitz RD; on behalf of the American Heart Association Stroke
Council, Council on Cardiovascular and Stroke Nursing, Council on Clinical
Cardiology, and Council on Quality of Care and Outcomes Research. Guidelines
for adult stroke rehabilitation and recovery: a guideline for healthcare
professionals from the American Heart Association/American Stroke Association.
Stroke. 2016;47:XXX–XXX. DOI: 10.1161/STR.0000000000000098.
5. Gresham GE, Duncan PW,
Stason WB, et al. Post-Stroke Rehabilitation Clinical Practice Guideline. No.
16. Rockville, MD: US Department of Health and Human Services. Public Health
Service. Agency for Health Care Policy and Research. AHCPR Publication No.
95-0662. May 1995.
6. Department of Veterans
Affairs, Department of Defense, and American Heart Association/ American Stroke
Association’s The Management of Stroke Rehabilitation Working Group. 2010.
VA/DoD Clinical Practice Guideline for the Management of Stroke Rehabilitation,
Version 2.0 VA/DoD Clinical Practice Guideline for the October, 2010 Management
of Stroke Rehabilitation. Washington, DC: Department of Veterans Affairs and
Department of Defense.
7. National Stroke
Foundation. 2005. Clinical Guidelines for Stroke Rehabilitation and Recovery.
Melbourne, Victoria, Australia: National Stroke Foundation.
8. Intercollegiate Stroke
Working Party. 2012. National Clinical Guideline for Stroke, 4th edition.
London: Royal College of Physicians.
9. Dawson AS, Knox J,
McClure A, et al and the Stroke Rehabilitation Best Practices Writing Group.
2013. Chapter 5. Stroke Rehabilitation (Update 2013). In: Lindsay MP, Gubitz G,
Bayley M, Phillips S (Editors) and the Canadian Stroke Best Practices and
Standards Working Group: Canadian Best Practice Recommendations for Stroke
Care, 4th edition. Toronto, Ontario, Canada: Heart and Stroke Foundation.
Disclosure: Dr. Roth has nothing to
disclose.
Pub Date: Wednesday, May 4, 2016
Authors: Elliot J. Roth, MD
Affiliation: Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine and Rehabilitation Institute of Chicago
Pub Date: Wednesday, May 4, 2016
Authors: Elliot J. Roth, MD
Affiliation: Department of Physical Medicine and Rehabilitation, Northwestern University Feinberg School of Medicine and Rehabilitation Institute of Chicago
Citation
Winstein CJ, Stein J,
Arena R, Bates B, Cherney LR, Cramer SC, Deruyter F, Eng JJ, Fisher B, Harvey
RL, Lang CE, MacKay-Lyons M, Ottenbacher KJ, Pugh S, Reeves MJ, Richards LG,
Stiers W, Zorowitz RD; on behalf of the American Heart Association Stroke
Council, Council on Cardiovascular and Stroke Nursing, Council on Clinical
Cardiology, and Council on Quality of Care and Outcomes Research. Guidelines for adult stroke rehabilitation and recovery:
a guideline for healthcare professionals from the American Heart
Association/American Stroke Association [published online ahead
of print May 4, 2016]. Stroke. doi: 10.1161/STR.0000000000000098.
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