Carroll, V. Susan
Questions or comments about this article may be directed to V. Susan Carroll, MS RN-BC, at email@example.com. She is the Editor-in-Chief of Journal of Neuroscience Nursing.
The author has no financial or other interests in Segway or Johnson & Johnson.
Multiple sclerosis (MS) is a chronic autoimmune neurologic disorder that affects myelin, the protective sheath that encases nerve fibers in the central nervous system. Lesions resulting from the loss of myelin cause disruption of nerve impulses in both the brain and spinal cord. Symptoms are myriad and can include fatigue; pain; visual changes; loss of function or sensation in the lower extremities; loss of balance and coordination; changes in speech, cognition, and emotions; and bladder, bowel, and/or sexual dysfunction. The constellations of physical symptoms vary widely among individuals but often cause problems with mobility that require the use of assistive technology (AT). As the disease progresses, affected individuals experience new or worsening symptoms that may further limit mobility and potentially their participation in daily life. An estimated 25% to as many as 80% of persons with MS experience activity impairments that limit walking and standing, the ability to access and use public transportation, and the ability to complete self-care activities within 10–15 years of disease onset (Souza et al., 2010).
In 1988, the Technology Related Assistance Act for People With Disabilities (Public Law 100-407) defined AT as “any item, piece of equipment, or product system, whether acquired commercially off-the-shelf, modified or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities” (Blake & Bodine, 2002, p. 301). Individuals with MS have long used canes, walkers, wheelchairs (manual or motorized), and scooters as AT. Each device has its own set of limitations and presents functional and social challenges to the affected individual. For example, uneven terrain or stairs may limit use; loss of balance, coordination, or strength may limit useful options; and the psychosocial experience of stigmatization associated with an AT device may change quality of life. Blake and Bodine (2002) argue that the definition of AT includes a broader range of devices than those typically prescribed for use. They also state that although the limited studies available underscore the importance of AT as one element in the plan of care for people with MS, very few studies examine costs and benefits, outcome measures, and standardized needs assessment relative to AT (Blake & Bodine, 2002).
Segway for People With Disabilities:
Introduced in 2001, the Segway Personal Transporter is a self-balancing, electric-powered transportation device. A small platform is supported 20 cm off the ground by two parallel wheels. A twist grip on the left side of the handlebars steers the Segway, leaning forward moves it forward, and leaning back moves it backward or stops the device. Balancing is possible because gyroscopes and other monitors sense the rider’s center of gravity and make minute adjustments to assure a balanced, upright posture (see http://www.segway.com). The Segway has not been marketed directly to persons with disabilities as AT nor has it been approved to date as AT by the U.S. Food and Drug Administration.
Limited research studies have been conducted specifically related to Segway use as new AT in individuals with MS and other disabilities. Safe, effective Segway use was tested in 2004 in a prospective, open-label study set in subjects’ homes and community environments (Uustal & Minkel, 2004). Twenty subjects tested the device for 2 weeks; outcome measures included the number of falls and changes in daily mobility activities. All 20 participants reported increased levels of independence and decreased levels of exertion. Three falls were reported, none with injuries and none related to equipment failure.
Although their work does not address Segway use specifically, a group of Italian researchers asked whether the approach used in evaluating and prescribing AT could reduce abandonment of the equipment; the secondary aim was to assess the types of AT being abandoned by people with MS and their reasons for discontinuing use (Verza, Lopes-Carvalho, Battaglia, & Uccelli, 2006). Fifty-four individuals with MS were prescribed AT based on decisions by the physician and therapist or by the physician, therapist, and patient. Fewer AT devices were abandoned when patients themselves were included in the evaluation and prescription process; however, abandonment still occurred as a result of nonacceptance of the device. An AT device may be perceived as a “symbol of disability, a validation of illness, a loss of independence and a diminished self-image” (Verza et al., 2006, p. 92). One might extrapolate that a device like the Segway could limit negative perceptions and decrease the potential to abandon the device.
In 2007, Sawatzky and colleagues published the results of a pilot study to determine the functional measures that best correlate with the skill levels of people with disabilities who operate a Segway Personal Transporter, and they used a qualitative analysis to explore subjects’ experience with the Segway. In this prospective study, 23 subjects with a variety of neurologic disorders, including MS, were first taught to use the Segway and then evaluated with the following tools: Segway Task Assessment, Berg Balance Scale (Berg, 1989), and Timed Get Up & Go Test (Mathias, Nayak, & Isaacs, 1986). All participants successfully completed the Segway Task Assessment; consequently, the researchers concluded that the Segway is a useful device for those individuals with functional disabilities, and subjects were excited about its potential use in their communities.
In 2009, Canadian researchers designed a trial to determine how the Segway compared to individuals’ current method of mobility in meeting specific mobility goal (Sawatzky, Denison, & Tawashy, 2009, p. 487). Although the sample was small (N = 10), the average Wheelchair Outcome Measure scores were significantly greater than the scores obtained with the subjects’ current mobility methods (p < .01; power > 0.9). This study also included a test of the Segway on an indoor agility course that was designed to present obstacles commonly encountered in daily community living. For example, the course included speed bumps, carpet, rumble strips, and curb drops. Course completion times were slightly faster with the Segway but were not statistically significant. This work addressed not only functional and mobility needs but also the repetitive use injuries associated with other AT devices and psychological benefits as well. Participants commented that they felt “less disabled” when riding the Segway.
Souza and colleagues (2010) published a systematic review of the literature focused on MS and mobility related to AT. They concluded that higher levels of evidence were not readily available; 37 of the articles included in their review had levels of evidence of either IV or V. This group of researchers concluded that strong, quantitative studies are needed to better understand the relationship(s) between mobility related to AT choices, individuals’ quality of life, and the cost-benefit ratio of a particular AT device. Segway use in MS was also among the topics presented at an international conference targeting rehabilitation and mobility across diagnoses, populations, and countries (Van Der Woude, Hoekstra, DeGroot, Bijler, & Dekker, 2010).
Information about Segway use worldwide among individuals with disabilities is, however, readily available online. Individuals with impaired mobility can search the Internet (a Google search of the keywords “Segway” and “multiple sclerosis” returned more than 100,000 hits) and find that the Segway is classified in Germany as an “electronic mobility aid” and that in the Netherlands certain handicapped people are allowed to use the Segway on sidewalks only. The Segway is classified as a mobility device like scooters and electric wheelchairs in New Zealand and must be ridden on sidewalks. In the United States, Segs4Vets is a non-profit organization that provides Segways to military veterans whose service resulted in difficulty walking and/or permanent disability. In 2011, the U.S. Department of Justice amended Title II of the Americans With Disabilities Act when it ruled that the Segway is “Other power-driven mobility devices” and must be permitted as long as its operation meets legitimate safety requirements (see http://www.ada.gov/regs2010/factsheets/title2_factsheet.html). Individuals with MS and other mobility-limiting disorders use online blogs to tout the advantages of the Segway as an AT device.
The paucity of research directly examining AT and MS, as well as a small number of controlled trials of Segway use in people with MS, limits the possibilities for formal recommendations advocating Segway use in this group. Carefully designed outcome studies might strengthen the evidence from earlier studies and add support to the anecdotal reports from patients themselves. Additional research may also be needed to provide evidence that definitively links Segway use to increased community (vocational, recreational, social) participation and functional independence. More research that matches person and technology during the assessment of mobility, like that conducted by Verza and colleagues (2006), could help practitioners better understand the many factors that influence an individual’s choice or preference for a particular AT device (Scherer & Glueckauf, 2005). Finally, research studies that link costs of AT to functional improvement, increased independence, safety, and better quality of life could provide the evidence needed to change U.S. Food and Drug Administration restrictions on Segway use.
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