Rose, Dorian K. PT, PhD; Schafer, Julie MPH, CPH, MCHES; Conroy, Christy MSPT
Stroke affects 795 000 Americans every year, with nearly one quarter of these strokes recurrent.1 Individuals poststroke either have or are at risk for cardiovascular disease.2,3 Recurrent stroke and cardiac disease are the leading causes of mortality in stroke survivors.4 Consequently, the American Heart Association/American Stroke Association (AHA/ASA) recommends increased physical activity for stroke survivors to reduce their risk of a second stroke.1 Exercise interventions in those with subacute and chronic stroke have demonstrated improvements in peak
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O2,5–7 blood pressure (BP),8 walking speed,9 and endurance8,9 as well as quality of life.9–11
Despite these known benefits of physical activity, except for primary care visits, there is often little else afforded to those who desire to maintain or improve their health once formal rehabilitation has ended. Although stroke mortality has decreased as a result of public education and awareness,12 emergency care has improved through the establishment of primary stroke centers,13 and some form of postacute rehabilitation is available to most stroke survivors, exercise opportunities to maintain a long-term healthy lifestyle in the presence of disability remain limited. Continued mobility deficits limit physical activity leading to a chronic cycle of subsequent physical deconditioning, further disability, and a sedentary lifestyle, putting these individuals at risk for recurrent stroke and worsening cardiovascular disease.4 When surveyed regarding barriers to continued exercise, individuals poststroke report these barriers to be “external” (ie, no knowledge of where to exercise or no knowledge of how to exercise) rather than “internal” (ie, lack of interest or lack of time).14
Therefore, the challenge for those working within stroke systems of care is to strategize how to move beyond existing barriers and to provide individuals poststroke with a safe therapeutic exercise environment. The purpose of this report is 2-fold: (1) to describe the development of a community-based stroke wellness program (SWP) through partnership between a rehabilitation health system and a local fitness center and (2) to outline the basic operations of such a program.
DEVELOPMENT OF AN SWP
Creation of a Partnership
To promote community integration and “wellness” for individuals poststroke, a not-for-profit health care organization with a mission to advance the health and well-being of persons requiring rehabilitation, Brooks Rehabilitation (Brooks; healthcare organization) recognized that a fitness program to meet these goals would require 2 essential components: (1) to be located in a place of wellness and (2) to be community-based. The YMCA of Florida's First Coast (YMCA; community wellness organization), an association of 13 regional facilities, was identified as an optimal partner. A Manager of Healthy Living Programs position was created at the health care organization to serve as a liaison to the YMCA administration and staff and initiated discussions with their leadership to form a planning team. This position was funded through Brooks Community Health Foundation, a philanthropic entity separate from the hospital's operating costs whose mission is to promote healthy living in the surrounding geographic area. In addition to this liaison, essential members of the team included Brooks Stroke Team physician, Brooks Executive Director of New Business Development, a physical therapist with experience in stroke rehabilitation research, education and clinical practice, a Brooks Stroke Team physical therapist, and the YMCA Wellness Director.
Operationalizing the Partnership
A strategic planning process drove the development and implementation of the SWP. The team met biweekly for 6 months to develop and implement the mission, goals, and objectives of the SWP (see Appendix). Key features of the proposed program were guided by the AHA's Physical Activity and Exercise Recommendations for Stroke Survivors, which includes strengthening, aerobic exercise, flexibility, and balance activities.4 Obstacles encountered and solved during program development concerned (1) space availability and (2) staff education. To “create” space, the planning committee met with the staff of the community wellness organization to determine “off hours”—hours when the facility was less populated. This time, 1:00–4:00 PM, became designated SWP hours, capitalizing on this available space. The YMCA Wellness Director identified staff that embodied qualities important when working with those with physical disability (compassion, patience, and good listening skills, as well as an interest in or knowledge of physical rehabilitation). A required training program was developed for all staff to complete before joining the SWP team. The planning team physical therapist created training videos: (1) “How to Exercise a Stroke Survivor,” (2) “Transfer Training,” and (3) “Establishing and Progressing an Exercise Program” to supplement in-person training. Ongoing training consists of quarterly education or “refresher” sessions led by a Brooks physical therapist allowed SWP staff to ask general or participant-specific questions about exercise prescription and/or progression. In addition, the stroke team physician and a team of physical therapists were available as needed for questions.
The driving force underlying development of the SWP was to benefit and provide opportunity for stroke survivors in the surrounding community to exercise. In parallel, the development team was charged to outline benefits to the institutions investing in the SWP: health care organization and the community wellness organization. The health care organization would benefit as it would increase visibility in the community and realize the opportunity to broaden the continuum of care for clients served through its well-respected inpatient and outpatient programs. The benefit to the community wellness organization would arise from their association with a highly regarded, established center of rehabilitative care as well as recognition as an organization proactively serving those with disability, and encouraging healthy living for all. The SWP launched at the initial flagship site in May 2009, culminating a successful partnership effort between the health care organization (Brooks) and the community wellness organization (YMCA).
Marketing the Program
A personal letter from the medical and administrative directors of the stroke program at the health care organization introduced the SWP to 1500 former clients. An SWP flyer and fact sheet was distributed to appropriate physicians (ie, family practitioners, neurologists) in the community by provider relations specialists of the health care organization. Education of the Brooks central intake unit team and front desk coordinators at outpatient centers ensured that all poststroke individuals entering their health system were aware of the SWP. The program was also featured in the systemwide newsletter sent to all outpatient center staff to introduce this new community resource.
Both the health care organization and the community wellness organization acted in accordance with the rules governing nonprofit entities to develop the SWP budget. Expenses: Salary expenses covered by the health care organization consisted of (1) 0.5 FTE Manager of Healthy Living Programs, (2) 1.0 FTE Program Assistant, (3) 0.50 FTE Program Assistant, and (4) pro re nata 0.50 FTE Program Assistant. The Program Assistant hourly rate was commensurate with a college degree in a health-related field. The Manager of Healthy Living Program was a salaried position commensurate with a master's degree-level education. These salaries were supported by Brooks Community Health Foundation, a separate entity dedicated to special programs for the community, rather than from the operations budget of the health care organization. Salary expenses of the community wellness organization included one Wellness Associate during SWP hours. Community wellness facility costs were minimal as the SWP occurred within regular hours of operation and program participants used available equipment. The health care organization and the community wellness organization divided the adaptive equipment costs purchased specifically for the program, that is, a recumbent cross-trainer and arm ergometer (NuStep, NuStep, Inc, Ann Arbor, Michigan). The annual costs for the program included a $1000 equipment budget and the salaries of the health care organization and community wellness organization employees. Revenue: SWP participation fees were $15/month for YMCA members and $30/month for non-YMCA members. The YMCA financial assistance program subsidized the monthly fee on a sliding scale if a potential participant was unable to pay the total cost.
Entry Into the SWP
Poststroke survivors enter the SWP through 3 primary referral sources: (1) Brooks outpatient physical therapists, (2) community primary care providers (PCP), and (3) directly contacting the SWP. Physician approval is required for program participation to ensure that there are no medical comorbidities that would contradict community wellness participation. Once the referral is received, a physical therapy evaluation, specifically designed to provide recommendations for SWP participation (Figure 1), is scheduled. In addition to physician approval, 2 additional SWP requirements are (1) heart rate and BP within American College of Sports Medicine guidelines15 (resting heart rate < 100 and >50 beats per minute, resting systolic BP < 200 mmHg and > 90 mmHg, resting diastolic BP < 110 mmHg), and (2) ability to transfer to/from gymnasium equipment with minimal assistance or a caregiver present to assist with transfers.
Physical Therapy Evaluation
The comprehensive examination, billed to the participants' third party payer, includes the 10-meter walk test (10MWT),16 Berg Balance Scale,17 Six-Minute Walk Test,18 Five Times Sit-to-Stand test (5xSTST),19 portions of the Fugl-Meyer Motor Assessment20 and the Dynamic Gait Index21 (for those who score > 46 on the Berg Balance Scale). If a participant does not have insurance, he or she could apply for the one-time cost to be covered by the Brooks Charity Program. On the occasion that the examining physical therapist recognizes that the client's current status will not permit him or her to participate in the SWP, a recommendation for individual physical therapy services prior to SWP enrollment is given.
There is currently no validated tool to directly translate physical therapy assessment results to appropriate exercise equipment use in a community-based exercise program. To meet this need, a 3-tier categorization scheme was created to translate the participants' abilities on standardized assessments into an exercise program specifically tailored to the client in the SWP setting. The upper and lower extremities could be categorized either together or separately, depending upon the participant's presentation.
Category 1: (1) Participant moved extremities only within obligatory synergistic patterns or demonstrates isolated movements through less than one-half range of motion, unable to raise paretic upper extremity (UE) overhead against gravity, (2) 10MWT > 23.0 seconds, and (3) 5xSTST > 30 seconds or requires use of arms to stand.
Category 2: (1) Participant demonstrated isolated movements throughout the limbs, (2) participant able to hold 2 lb weight at 90 degrees of shoulder flexion with elbow extension for 5 seconds and then maintain shoulder flexion greater than 90° for an additional 5 seconds, (3) 10MWT ≤ 23.0 seconds, and (4) 5xSTST ≤ 30 but >20 seconds without use of arms.
Category 3: (1) Participant was able to perform rows (10 repetitions) and bicep curls (10 repetitions) with 6 lb weight without fatigue, (2) 10MWT ≤ 15.0 seconds, and (3) 5xSTST ≤ 20 seconds.
The completed physical therapy evaluation, entered as an electronic medical record, is accessed by the Program Assistant. The Program Assistant uses the category-based suggested exercises (Table 1) as a guide to develop an individually designed exercise program. The examining physical therapist also indicates specific stretches and/or balance exercises to be included in the SWP. As an employee of the health care organization, the Program Assistant had completed patient confidentiality and HIPAA (Health Insurance Portability and Accountability Act of 1996) training and is permitted access to participants' electronic medical record. The referred participant is contacted and an initial appointment for orientation to the most geographically convenient SWP is scheduled (Figure 1).
The Brooks Program Assistant orients participants (and their family/caregiver if applicable) on their first day to days and hours of operation, types of exercise available, program benefits, and transportation options. The participant completes a YMCA enrollment form and Waiver of Liability and purchases a membership. The participant is instructed in the use of the exercise equipment, including how to safely mount and dismount. An important component of the orientation is formal introduction to other SWP participants, as this provided new enrollees an immediate sense of camaraderie and community.
Stroke Wellness Exercise Program
Flexibility, strength, and cardiovascular exercise are the cornerstones of the SWP. If the physical therapy evaluation indicated that the participant is at risk for falls, then balance exercises are also included. A file is created for each participant for documentation of vital signs and of exercise progression. Vital signs are taken pre- and postexercise at each visit. If BP and/or heart rate are outside the American College of Sports Medicine guidelines,15 the participant is not permitted to exercise and appropriate follow-up is provided. The follow-up may consist of (1) determination if participant has taken his or her BP medication, (2) facilitation of obtaining prescription refills if participant is out of BP medication, or (3) referral to PCP for BP management. Vitals are taken on an as-needed basis throughout the session if initial measurements are borderline or if the participant reports not feeling well. Exercises completed during each session (including parameters of repetitions, duration, resistance) are entered into the participant's exercise log, which is reviewed at the beginning of each session to ensure progression.
Resistance exercises include movements against gravity, resistance bands, pulleys, and circuit-style strength-training weight machines that address the major muscle groups of both the upper and lower extremities (ie, knee extensors, knee flexors, back extensors, shoulder extensors, and elbow extensors). Using the recommended exercises from the physical therapy evaluation as a guide (Table 1), the Program Assistant considers the participant's preferences and recommends an appropriate resistance exercise, determining the load the participant can complete 8 to 12 repetitions with appropriate form. Cardiovascular exercise is provided via an upright or recumbent bicycle ergometer, a treadmill, a recumbent cross-trainer (NuStep), and upper body ergometer. Using the recommended exercises from the physical therapy evaluation as a guide (Table 1), the Program Assistant considers the participant's preferences and recommends an appropriate cardiovascular exercise. Participants are educated on the Borg CR10 Scale22 with a Target Borg Range of 3 to 4 used to determine the duration/speed/resistance of the exercise with the goal of a 20-minute duration bout. Given the combination of comorbidities and neurological deficits that are unique to each stroke survivor, the SWP follows the principle that intensity, frequency, and duration of exercise depend on each individual client's level of fitness.4 Participants' affect is monitored and exercise is stopped in the event of warning signs or symptoms such as dizziness, unusual shortness of breath, and/or angina discomfort.15
New participants are introduced to 2 to 3 pieces of equipment on their first visit with additional exercises introduced in subsequent visits until they are trained on all available and appropriate equipment.
The Manager of Healthy Living Programs (a certified health education specialist with a bachelor's degree in exercise science and a master's degree in public health) and the Program Assistants (individuals with a bachelor's degrees in exercise science or exercise physiology) are employees of the health care organization. They provide, respectively, oversight across the 9 SWP sites and oversight of the SWP at their respective sites. A Wellness Associate at the community wellness organization teams with the Program Assistant of the health care organization to assist participants (Figure 1). This structure creates an employee-to-participant ratio of 1:4.
The SWP is available for clients 2 (Tuesday/Thursday) or 3 (Monday/Wednesday/Friday) days per week, 2 to 3 hours per day. These hours are nonpeak hours at community fitness facilities–-when equipment is more readily available. The SWP runs concurrently and in the same physical space accessed by able-bodied individuals, providing informal education and exchange across these populations. Exercising alongside those without physical disability instills in the stroke survivors a sense of societal reintegration, the confidence that they can do what others do and a sense of participation in society. In addition, this “common space” arrangement enhances critical community awareness for individuals without disabilities as they interact with and share equipment and space with individuals poststroke.
On average, participants attend the SWP each day it is available (2-3 times per week) and exercise for approximately 1 hour each visit. Many participants remain for an additional hour, socializing with other participants. Participants continue with the program indefinitely with no predefined endpoint.
Referrals Outside the SWP
As alluded to in the “Introduction”, because chronic stroke survivors are not regularly seen by health care providers, the SWP staff may be first to observe or be alerted by the wellness participant that a change in health status has occurred. There is not a formal relationship between the SWP and area PCPs. However, the SWP staff, on the front lines with frequent participant contact are uniquely situated to educate participants on the importance of seeing their PCP if a change in health status occurs. The SWP staff will recommend a participant to see his or her PCP if a situation warrants, but it is the ultimate responsibility of the participant to do so. In addition, SWP staff provides participants with their most recent BP readings to take to PCP appointments for evaluation.
As there is currently not a formal reevaluation procedure, SWP staff closely monitors participants' progress. When noticeable endurance for activity has improved or a breakthrough in a previous functional plateau has occurred, a participant may be referred to his or her physician to obtain a prescription for additional physical therapy, an example of how this partnership has led to improved and continued care for individuals poststroke.
If a potentially life-threatening event occurs during SWP participation, the SWP staff member calls 911 and follows facility operating procedures. The SWP staff member follows up with the participant and/or family member at the hospital. If a non–life-threatening adverse event occurs, the event is documented with risk management and the participant is managed accordingly. If a change in medical status arises, the participant is referred to his or her PCP, who then determines when the participant is cleared for resumption of the SWP.
Once the flagship site was operational and experienced steady enrollment, the team investigated program expansion to serve a larger geographical area. A formal needs assessment by “Health Zone”23 identified the geographic areas with the highest prevalence of individuals poststroke discharged from the health care organization. One of the program's “benchmarks for success” was to provide an affordable SWP in each of the geographic locations to which a large number of poststroke individuals were discharged following inpatient rehabilitation. The closest respective community wellness facilities and outpatient health care clinics were identified to collaborate and serve as SWP sites to realize this goal of 8 (4 in 2011, 4 in 2012) additional SWP sites across 4 counties, serving different socioeconomic areas. We were interested in determining the transferability of the original SWP into both more rural and urban settings than the flagship site and we have successfully achieved that goal. The flagship SWP team trained the new SWP team members to ensure consistency across sites. Since the program's 2009 launch, approximately 130 stroke survivors have participated in the program, many of whom have been active for 3 consecutive years. The flagship SWP has met its daily census goal of 20 to 30 active participants with good retention. Of the 8 expansion sites, 50% have reached their daily census goal.
Currently there is not a formal, periodic reevaluation included in the SWP, an area identified for development that will strengthen the program. Although not comprehensive evaluations, examples from 2 separate participants demonstrate progress regarding body composition (Table 2) and exercise endurance (Table 3) following 3 months of participation in the program.
On semiannual satisfaction surveys (an example provided in Table 4), 95% of respondents consistently indicate that the program “met” or “exceeded” their expectations regarding both program logistics (ie, staff, location) as well as personal benefit (ie, their physical and emotional well-being, social interaction, quality of life). Comments provided by participants offer specific examples of how SWP participation has improved their quality of life. One participant wrote: “As a stroke victim I had developed a lot of uncertainty and fear toward everyday tasks and situations. This program has greatly helped me improve that mindset. Last weekend I went sailing to relax for the first time in 2 years. Thanks for giving me my life back.” Another participant wrote:
The benefits of participating in this program have gradually improved my ability to perform my daily activities with little difficulty. Nevertheless, I still need to improve in some areas. That is why it is important for me to continue in this program. It is worth my time and effort to participate to continue to improve a healthy lifestyle and help to prevent another stroke. Without this program, I do not know what my lifestyle and health would be like at this time. Thank you for thinking about us stroke survivors. It means a world of difference to us.
Although not currently objectively measured, 2 additional areas of observed outcomes are the social participation benefits and the extension of care participation in the program provides.
Social Participation Benefits
Benefits of SWP participation extend beyond the physical. Many participants remain following their exercise program to socialize with other participants. The onset of poststroke depression is reported in more than 33% of stroke survivors24 and is particularly prevalent in those who have lost the ability to drive and/or who live alone. The program gives participants a social environment to engage with other community members living with some of the same physical, communication, and emotional challenges, and they are often able to offer one another companionship, understanding, and solutions to common challenges. In addition, caregivers use the SWP to create an informal support group. Caregivers of persons living poststroke often experience fatigue and burnout.25 The program gives them an avenue to meet other caregivers, an opportunity to relax, and improve their own well-being. An added benefit, the partnership with the community wellness organization allows caregivers to exercise at no additional cost when they accompany the stroke survivor to the SWP.
Extension of Care
As intended, the SWP extends the continuum of care provided by the health care organization to community stroke survivors, realizing the goal of a medical facility partnering with a community facility. Client and caregiver needs often not apparent during outpatient or home health services such as transportation, finances, and emotional distress, are observed by staff of the health care organization as a result of this lengthened, ongoing relationship. This extended continuum of care allows the staff to connect stroke survivors to services provided by Brooks or other venues within the community such as psychological or counseling services as well as advocating for expanded transportation services by local companies.
Anecdotally participants report improvements in their BP, body composition (weight), physical mobility, strength, and endurance as a result of SWP participation. Institution of routine, objective reassessments of participants' progress would ensure that their program creates a sufficient challenge and that they are exercising at an optimum level. We plan to write a proposal to investigate the effect of a community-based SWP on strength, endurance, and health-related quality of life. The success of the SWP has created interest to expand the program to others who would benefit from an opportunity for continued exercise. Wellness programs for those with brain injury and Parkinson disease are currently in development.
We have demonstrated that a health care organization and a community wellness organization can strategize to form a partnership, capitalizing on the strengths of each, to provide an opportunity for individuals poststroke to remain healthy in the presence of disability. The success of this program, currently measured in terms of geographical expansion, the increased number of clients served by the program, retention of clients, and anecdotal reports of improved health, demonstrates the fulfillment of a need within the poststroke community. Objective measurement of improved client health, including decreased rehospitalization and decrease in recurrent stroke, will serve to corroborate this initial assessment of success.
The authors thank the administration at Brooks and the YMCA, Brooks/YMCA Stroke Wellness Program staff at the SWP sites, Brooks Medical Director, Trevor Paris, MD, and Brooks' marketing and audiovisual department. We also thank Mary Thigpen, PT, PhD, for review of an earlier draft of this manuscript. Funding was provided by the Brooks Community Health Foundation.
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Mission: To improve the health of stroke survivors in the greater Jacksonville, Florida, community.
Goal: To improve the overall quality of life for stroke survivors through the partnership of Brooks Rehabilitation and the Florida First Coast YMCA.
Objectives for program participants:
1. To change attitudes, perceptions, and knowledge regarding the need for and benefit of exercise following stroke
2. To decrease the number of second stroke occurrences
3. To improve level of physical function
4. To improve overall quality of life
community-based programs; exercise; exercise models; health promotion; rehabilitation; stroke