THE NEED FOR AN ORGANIZED SYSTEM OF STROKE CARE
Stroke is a major health problem in the United States and around the world.1,2 Rehabilitation has the potential to save many people from disability after stroke.3,4 While organized delivery of stroke care often exists within institutions5–8 that provide care at various stages of the rehabilitation process, it does not often exist across institutions, as patients move from one institution to another and then to home. Rehabilitation outcomes assessments direct critical decisions at many points along the continuum of care. Decisions such as admittance to inpatient rehabilitation, length of stay/services, and the selection of specific interventions are all dependent upon results of these assessments. Results from assessments are also a critical component of communication with patients, caregivers, other health care providers, and third-party payers.
Despite persistent calls for consistency, validity, and standardization,5,9,10 assessment tools vary across and within institutions and therapy assessment results are not routinely transmitted to later points of service. The lack of consistency and continuity results in barriers to efficient and effective care delivery such as difficulty communicating results within a facility, lack of awareness of assessment done at previous facilities, and the inability to determine individual progress due to use of different assessment tools. Given that initial severity of impairments and the rate of change of those impairments are key prognostic indicators after stroke,11–17 making clinical decisions without the full complement of assessment data is problematic and inefficient.
GOAL AND PURPOSE OF THE ORGANIZED SYSTEM
The Brain Recovery Core (BRC) team is a multidisciplinary, interinstitutional partnership between a university medical school including the departments of physical therapy, occupational therapy, neurology, biostatistics, and psychiatry (Washington University School of Medicine), an acute care hospital (Barnes Jewish Hospital), and a rehabilitation center (the Rehabilitation Institute of Saint Louis). Detailed information on the acute and rehabilitation care facilities is given in Table 1. The major goal of the BRC system is to build and sustain a system of organized stroke rehabilitation across the continuum of care, from the acute stroke service to return to home and community life. Our efforts are focused on the large cohort of people who are admitted with stroke to our acute facility, are sent to inpatient and/or outpatient rehabilitation at our free-standing facility, and are then discharged to the community. The purpose of the system is to support the clinical services and the research team by providing: (1) individual patient data across the continuum of care to make better prognostic clinical decisions, (2) population data on outcomes within and across services, disciplines, and individual therapists, (3) a common set of measurements that lay the foundation for within and across service efforts to improve rehabilitation management, and (4) outcome data from new clinical programs or research interventions. The 2 key ingredients of this system are (1) a systematic assessment battery (covering motor, language, and cognitive domains) that builds across the continuum of care and meets the needs of each service, and (2) a database to collect, store, and search assessment, treatment, and follow-up data that it is accessible to rehabilitation clinicians, administrators, and researchers. An example of the clinical utility of the system is as follows: therapy staff often identify a specific need or desire to improve service delivery, such as creating a group exercise program to improve the mobility of their patients. With this system, we are now able to determine whether or not a new program produced the desired outcomes, for example, “did mobility improve as anticipated?” and “was it worth the effort to create a new program?”
FROM CONCEPTUAL IDEA TO IMPLEMENTING THE BRAIN RECOVERY CORE SYSTEM
The idea of the BRC system first arose in 2008 within a group of rehabilitation researchers and then with representatives from the clinical facilities. It took nearly 14 months to complete the process of agreeing to create the system, determining the specifics of how it would operate, obtaining pilot funds, hiring a coordinator to run the project, and starting implementation efforts. Three important features of the team and environment facilitated the development of this project. First, there were already numerous research and clinical contacts between the partners. Second, there was a 10-year history of consenting and tracking patients into a clinical stroke registry at the acute stroke facility. Third, the researchers had access to and secured commitments from the administrative officials at each facility. The positive history of interactions between partners and, perhaps more importantly, the support from administrative officials18–20 were critical in implementing the BRC system.
BUILDING A STANDARDIZED ASSESSMENT BATTERY
The first component of the BRC system is an assessment battery, covering motor, language, and cognitive domains, which builds across the continuum of care and meets the needs of each service. Here we provide details on the motor portions of the battery that are the responsibility of physical therapy. Criteria for selection of measurement tools were that the tools must have published reliability, validity, and responsiveness (preferably in people with stroke) and the tools must meet the clinical needs and constraints of each service. While the first criterion is a necessity for collecting uniform patient information,9,21 the second criterion was essential for convincing therapists to routinely use the battery.
The 3 physical therapy services and the specific needs and constraints that the assessment battery had to address are shown in Table 2. These needs and constraints were determined from discussions with therapists, administrators, and BRC team members. Because our goal was to use the battery across the points of care, the needs and constraints of one service had to be balanced with those of the other services. Consequently, we had to select tools that could consistently be used across services and still provide sufficient information for clinical decision-making and outcome measurement within each service. The population of people served by our facilities spans the range from life-threatening strokes causing severe disability to very mild strokes causing no disability. Thus, we had to select tests that could measure the full range of impairments and disability. Systemwide rules for test administration are used to avoid problems associated with performing assessments in a nonstandardized manner. Rules for the Berg Balance Scale are described later as an example:
If a person receives a 0 on the first 5 items, the rest of the items are not administered and are assigned scores of 0. Brain Recovery Core data indicate that the scale is readily capturing changes at the low end (eg, moving from a 0 to a 10). On the upper end, preliminary BRC data indicate that 5% and 8% of persons on the inpatient and outpatient services, respectively, achieve top scores (defined as a score of 55 or 56). If a person achieves a score of 55 or 56, then the treating therapist can either chose a different way to assess higher-level or job-specific balance (eg, walking on ladders for a roofer) or can choose not to evaluate balance further (ie, no additional balance needs).
Lastly, selection of specific measurement tools was informed by the idea that health care changes are easier to accept and make when the change is not too different from current practice.22,23 Thus, when given a choice, we selected measurement tools that were already in use on one or more services.
The physical therapy battery, the rationale for each tool, and the points of service where it is used are outlined in Table 3.12,14,24–56 Some tools are used for diagnostic decisions (ie, what are the main impairments contributing to limited mobility?), some are used for evaluating outcomes, and some are used for both these purposes. How the tools are used determines when they were administered (eg admission only vs admission and discharge or monthly). The selected battery is a reasonable, but not perfect solution to the needs, constraints, and challenges discussed earlier. The battery is the minimal requirement for all patients admitted with stroke on each service. It is intended to provide sufficient information for clinical decision-making on the majority of patients seen on each service. Therapists may administer additional tools for individual patients as appropriate (eg, ataxia rating scale for persons with cerebellar stroke). As sufficient data are collected, the battery is assessed from clinical and statistical perspectives and revised accordingly.
IMPLEMENTING AND MONITORING THE STANDARDIZED BATTERY
The battery was implemented first on the acute service, followed by the inpatient, and then the outpatient services. From health care change literature, a multifaceted implementation approach was selected.18,20,23,57–61 Components of the multifaceted approach included (1) clear administrative and supervisory support, (2) a clinical “champion” on each service, (3) distribution of educational materials about the battery that included each tool, the rationale for selecting it, how to administer it, and where to record scores, (4) educational and interactive meetings with staff, and (5) feedback to staff and administration. For each service, the BRC coordinator and a team member with content expertise first met with the lead therapist and a supervisor to discuss the details of the battery, service-specific needs, and the implementation process. The lead therapist served as the champion of the project—the person who would advocate for using the battery and would answer specific questions about how to administer the tools. This first meeting was used to review educational materials to be provided to staff, plan the implementation time points for that service, determine equipment needs, and problem-solve potential barriers to implementation.
The second step was to have educational, interactive meetings with therapy staff. Meetings were used to orient staff to the BRC system and goals, disseminate and discuss educational materials, and answer questions. After the staff meeting, a 2- to 3-month trial period began. During the trial period, staff participated in in-services to learn to use unfamiliar assessment tools and to problem-solve process issues. Common process-related issues were insufficient forms or equipment, lack of knowledge regarding where forms or equipment were kept, and how to include forms as part of the medical record. Therapists identified barriers to implementation and generated feasible solutions. The BRC coordinator shared solutions from one service with other services. For example, staff on all 3 physical therapy services independently identified the lack of a consistent, reliably measured space as a barrier to completing the 10-Meter Walk Test. The acute hospital arranged to have wall tiles changed to a contrasting color at the beginning and end of a 10-meter distance as a permanent solution. This solution was shared with the inpatient and outpatient services and similar changes were made there. The BRC coordinator also observed and provided feedback to staff performing assessments.
The trial period ended when the lead therapist indicated the staff was familiar with battery administration and using battery scores for clinical decision-making. Another meeting was held with therapy staff to answer final questions, communicate additional details, and move from the trial period to live implementation. Live implementation meant that all therapists on the service were expected to use the BRC battery for evaluations of all patients with stroke admitted to that service.
Our target is to consistently achieve 90% or more completion rates on each service. Several steps are followed to monitor and improve compliance. First, the BRC coordinator observes assessments on each service monthly to ensure correct administration and provide feedback to therapists. Second, review of rehabilitation records is done monthly to quantify compliance. Monitoring and providing specific feedback are important aspects of successful health care implementation strategies.20,60–63 Compliance data are provided to supervisors, who then share data with staff. The review of records helped identify staff who had not been educated about the BRC battery, such as per-diem therapists. Administrators now include education about the BRC project and the battery into orientation for new hires and the annual competencies for all therapists.
BUILDING AND IMPLEMENTING A PROCESS TO CAPTURE LONGER-TERM OUTCOMES AFTER STROKE
The BRC team is interested in understanding the longer-term outcomes of people with stroke who receive services at our institutions. There is a lack of routine clinical procedures for assessing functional outcomes later in the stroke rehabilitation process or after rehabilitation services have ended, particularly in the United States. Many institutions, including ours, use follow-up mail surveys to measure the quality of care received (eg, professionalism of staff, patient satisfaction), but the survey questions are distinctly different from outcome assessment. In the absence of real data on how well patients are coping in the context of their own lives, our health care institutions have no way of knowing if the stroke rehabilitation services they are delivering are sufficient and/or effective.
To capture longer-term outcomes at the end of the continuum of stroke rehabilitation care, we developed a process for 6- and 12-month telephone or e-mail follow-up contact. We chose to measure functional outcomes at specific time points after stroke instead of at individualized time points, such as at the end of therapy services. The reason for this was that variability in the need for services, treatment interventions, length of stay, and third-party reimbursements make comparisons using individualized time points only minimally useful.64 The 6-month time point was chosen because neurological recovery poststroke has reached a plateau and physical function is typically stable by this time.11,64,65 The 12-month time point was chosen because cognitive and language function and participation in social roles may take up to 1 year to stabilize after stroke.66–69
Follow-up contact via telephone and e-mail were selected as economical methods to obtain the data. In-person assessments were rejected because of the associated costs. We could not rely solely on e-mail-based methods because approximately one-half of our patient population does not have access and/or experience with computers. Telephone follow-up contacts are being completed in 20 to 25 minutes per call by staff trained on-the-job. For those patients providing e-mail addresses, e-mails are distributed and responses are returned via our secure database (see later). Three assessment tools and 2 multilevel questions are being administered (Table 4).
COLLECTING, MANAGING, AND SHARING REHABILITATION DATA
The second component of the BRC system is a database to collect, store, and search assessment, treatment, and follow-up data that it is accessible to rehabilitation clinicians, administrators, and researchers. Because data would be accessible across facilities and to researchers, approval of institutional review board (IRB) was required. The approval of IRB and a systematic verbal informed consent process have been in place for 10 years at the acute facility, where the informed consent process is managed by the stroke team nurse coordinators. The approval of IRB and a systematic informed consent process had to be established at the inpatient and outpatient rehabilitation facility. Approval had to be provided by 3 separate committees; this took approximately 7 months. Case managers were chosen to handle the consenting process on the inpatient and outpatient rehabilitation services because of their educational background. The same general process, described earlier, was used to implement and monitor the consent process. Our target is to consent 90% or more of all individuals with stroke admitted to acute hospital, and the inpatient and outpatient rehabilitation services.
Paralleling the development of the consent process was the construction of a database to collect and store patient information. Data are collected and managed using REDCap (Research Electronic Data Capture) hosted by Washington University.70 REDCap is a secure, Web-based application designed to support large projects, providing an intuitive interface for validated data entry, audit trails for tracking data manipulation and export procedures, automated export procedures for seamless data downloads to common statistical packages, and procedures for importing data from external sources. The database allows for both data transfer from the electronic medical records at the acute hospital and manual data entry from the paper medical record at the other services. In addition, REDCap has a survey feature, which is used to collect 6- and 12-month follow-up information via e-mail or via manual entry during telephone calls with the patients.
The final step in building the database is providing access to collected data to our BRC constituents. This is achieved via a password-protected, BRC Web page with data queries for the 3 main groups of constituents. Through this system clinicians can access stored data from individual patients, administrators and therapy supervisors, the BRC coordinator can access data related to compliance and outcomes (such as completion rates), and researchers can access de-identified rehabilitation data to conduct retrospective analyses.
2010 COMPLIANCE AND BENEFITS TO DATE
The efforts of the BRC team, therapy staff, and administrators have resulted in a system of organized stroke rehabilitation across the continuum of care. Physical therapy compliance rates for April to December 2010 are shown in Figure 1A. Compliance fluctuates and therapists report the greatest difficulty with administering discharge (inpatient) and monthly (outpatient) assessments. In general, these compliance rates are better than those reported for other health care change efforts (mean compliance with 143 clinical recommendations = 54%).71 We note that intra- and interrater reliability of individual battery tools are not being evaluated as part of this project. While this may be considered a flaw of the project, our intent was to take evidence from the literature (ie, selection of tools already shown to be reliable) and implement a system to use them in routine clinical practice. The percentage of patients consented to have their data stored in the database, from April to December 2010 are shown in Figure 1B. As discussed earlier, the consent process was required because of need for separate facilities to access private health information. Multiple efforts are being pursued to increase the percentage of people who agree to have their information stored, because this type of system is most valuable with maximum inclusion.
A brief summary of benefits realized thus far include the following: (1) provision of ongoing evidence-based education on evaluation and outcome measurement for stroke rehabilitation to therapy staff, (2) a “common language” of objective assessment results with which therapists are now engaging in discussion about exactly how they are making clinical decisions, (3) a perceived reduction in the time to complete assessments, and (4) improvement of numerous service delivery processes (eg, regular availability of assessment kits, consistency in reevaluations across staff). Continued efforts are needed to improve the BRC system, sustain it over time, and adapt it to meet the needs of the constituents.
The authors thank the staff and administrators of Barnes Jewish Hospital, the Rehabilitation Institute of Saint Louis, and Washington University for their enthusiasm, support, and efforts on this project. Funding was provided by HealthSouth Corporation and the Washington University McDonnell Center for Systems Neuroscience.
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measurement; outcome; stroke; rehabilitation