September 2013

Taking an adaptive path to active

8004085675_4a3f84b312_1Adaptive sports programs offer a fun, social way for people with disability to be more physically active and improve their self-image at the same time, through pursuits ranging from tranquil fly-fishing to intense rock wall climbs.

By Emily Delzell

The benefits of getting physically active are clear—decreased risks for many chronic diseases, as well as improved mobility, mood, and quality of life. Yet, able-bodied people still participate in low numbers and, among people with lower extremity disabilities—who stand to gain equal and, arguably, greater gains—participation rates are even lower.

Adaptive sports programs aim to up the numbers of people with disability taking part, and advances in prosthetic technology, along with a growing awareness of the physical and psychological rewards of such activity, have opened a range of sporting pursuits to recreational and elite athletes.

The concept of therapeutic recreation took shape after World War II, when German-born British neurosurgeon Sir Ludwig Guttman, director of the new National Spinal Cord Injury Centre, established the Stoke Mandeville Games for his veteran patients.1 Those games opened in 1948 on the same day as the London Olympics and eventually grew into the Paralympic Games, which in 2012 drew a record-breaking 4250 participants and sold 2.7 million tickets.2

The Paralympics’ growth in popularity has paralleled significant performance gains by athletes with disabilities; 2012 was also a year that saw an amputee athlete—sprinter Oscar Pistorius—compete against able-bodied runners in the Olympics for the first time.

“[Guttman’s] perception of sport and individuals with disability was that it could be competitive and exciting, which in turn plays a vital role in rehabilitation. These words, for me, ring true to this day,” said Sarah Curran, PhD, BSc(Hons), a senior lecturer in podiatry at Cardiff Metropolitan University in Wales, UK, and editor in chief of Prosthetics and Orthotics International.

Events such as the Paralympics are inspirational and aspirational, showcasing elite achievement and technical skill as well as cutting-edge technology. And individuals playing at more recreational levels aren’t being left out. Adaptive sports programs are increasingly available and offer and array of activities—something for almost anyone who wants to take part.

Athletes, whether elite or recreational, reap significant benefits, Curran said.

“In terms of pure benefits from a daily perspective, participation in sport offers goals and aids in mobility and independency,” she said.

8004556620_3952030954_1Benefits

Taking part in adaptive sports can improve the health and well being of individuals with lower extremity disabilities, who are at at higher risk than their able-bodied counterparts for a host of disorders.3-7

In the US, vascular disease is the cause of about 82% of all amputations, and most lower limb amputees have underlying disease that contributes to poor physical fitness and other comorbidities, including obesity, cardio-metabolic disease, diabetes, and mood disorders.3,4,6

A 2011 systematic review published in Sports Medicine3 reported evidence that sports participation among lower extremity amputees improves cardiovascular function, muscle force, and body mass index and helps individuals rehabilitate from amputation more quickly than amputees whose rehabilitation programs don’t involve sports.8-11

Like the able-bodied population, however, people with lower extremity disabilities participate in sport at low levels.

In the US, only 20.6% of the general adult population met federal recommendations for physical activity (at least 150 minutes of aerobic activity and two weight training sessions per week).12

Recent data on activity levels among disabled persons that include specific definitions of activity are scarce, but a 2013 cross-sectional survey of Dutch lower limb amputees found only 15% participated in more than five hours of activity a month (defined as physical exertion lasting at least half an hour).13

Unlike most civilian amputees, military personnel are healthy and much more active prior to injury, but they are also particularly vulnerable to mood disorders. Post-traumatic stress disorder (PTSD), which, along with amputation, is seen as the signature wound of early 21st century military conflict,14 is common among traumatic amputees, with rates ranging from 25%15 to 77%.16

The use of improvised explosive devices has swelled the number of traumatic amputations and the severity of injuries. A 2012 report from the Armed Forces Health Surveillance Center noted that, between 2000 and 2011, there were 2305 lower extremity amputations among US military personnel. Of these, 78% were major procedures, including 482 at or above the knee, 21 bilateral foot/ankle amputations, and 339 bilateral leg amputations.17

“Although we can’t overlook the important physical benefits of sports and regular physical activity, which are significant for able-bodied and disabled persons alike, I consider that the most important benefits [for amputees] are the psychosocial ones,” said Mihai Bragaru, PhD, who authored the 2011 Sports Medicine review and received his doctoral degree in June from the Department of Rehabilitation Medicine at the University of Groningen in the Netherlands.

Bragaru said his research shows taking part in sports helps people with lower extremity amputations accept their own disability and limitations, increase the number of their social contacts, escape daily tension, and set aside concerns related to their disability.3

Neil Lundberg, PhD, CTRS, assistant professor of therapeutic recreation at Brigham Young University in Provo, UT, has focused on psychosocial issues among amputees in his research.

“Sport gives people a sense of affiliation and a way to identify with other people. From an emotional and psychological standpoint, that’s really critical, particularly if the disability has created social barriers or inhibition,” Lundberg said. “People have a universal need to connect with others, and people with disabilities report higher levels of isolation. Adaptive sports provide an avenue for social connection.”

Lundberg conducted an interview-based study of 17 individuals with varying disabilities who had been participating in adaptive sports for an average of 8.7 years.18

cover-kneeParticipants reported feeling stigmatized and stereotyped as devalued and incapable. “People expect less of you mentally and physically,” is a representative statement from the interviews. They reported, however, that adaptive sports provided opportunities to build social networks and experience what they often termed “freedom”—freedom from the negative aspects of disability and freedom to participate more fully in new activities.

“In some ways it [adaptive sport participation] becomes a bit of your identity—it’s a way you can enhance your self perception, and say, ‘Yes, I do these things, and they’re physical things. I’m still present in the physical world, I still can achieve physical things,’” Lundberg said.

Research also shows sports participation improves body image among lower extremity amputees.19,20 In a 2010 study by Tatar et al, for example, lower extremity amputees who regularly took part in sports or physical activities had significantly better scores on the Amputee Body Image Scale than their less active counterparts.20

A survey of 1108 disabled adults found that the 50.7% who reported being physically active more than four times a month (71% of those were involved in formal adaptive sports programs) were more likely to compare their fitness favorably with normally abled persons, report greater life satisfaction and feelings of independence and strength, have a strong support network, look forward to the rest of their lives, and be employed and advance in their jobs.21

Learning to walk, then run, then race

Positive self-perception, a major issue among disabled individuals and part of  what Lundberg terms “perceived competence,” is likely enhanced by adaptive sports participation.20

“It’s a mechanism through which people can develop skill and demonstrate that skill in a public setting,” he said. “They can play basketball, ski, or cycle, and people see them and say, ‘I had no idea that you could actually do this and not only do it, but do it better than I do.’ It creates a new impression, not only for the person who doesn’t have a disability and who’s seeing it, but for the person with the disability, who’s getting positive feedback from others.”

Jason Wening, CPO, LPO, MS, FAAOP, facility manager of the Lincoln Park office of Scheck & Siress in Chicago, noted that adaptive sports programs can provide a comfort zone for people with lower extremity disabilities to get into or return to sports.

“Although I’m a big believer in not necessarily needing a [formal] adaptive sports program to get active, they can definitely help people get started,” Wening said. “It can be very intimidating to try and start doing some of these activities alongside able-bodied people. [Adaptive sports programs] become a venue to create some confidence around that sport and the potential to engage in that sport.”

Spinal surgeon Kenneth Lee, MD, who, along with leading an adaptive sports program for spinal cord injury patients through the Milwaukee VA, is a wounded veteran who rehabilitated through adaptive sports, also highlighted the effect of participation on self-esteem and self-confidence.

surfing-3“We have some vets in our programs who took part in the wheelchair games as their springboard, and realized they could do a lot more than that,” Lee said. “One young vet just wasn’t doing much, and we got him into adaptive sports and now he’s involved in it significantly—but more than that, he went back to school and got his degree in business and is now looking for jobs.”

Adaptive sports can also improve mood disorders, which are strikingly prevalent among veterans. Since 2000, more than 103,792 US military personnel have been diagnosed with PTSD.22

A 2011 study by Lundberg and colleagues examined quality of life and changes in mood in 18 veterans, all of whom had with multiple disabilities, including PTSD, amputation, orthopedic impairment, and depression. The veterans took part in one of three weeklong adaptive sports programs held in Sun Valley, ID, that included water skiing, kayaking, canoeing, and fly fishing. For most (83%), this was their first adaptive sports experience.23

Despite the intervention’s short duration, participants’ scores on tests of mood disturbance, depression, and anger—negative states commonly associated with PTSD—significantly improved from baseline. The vets also had significantly higher scores on measures of vigor and perceived competence.

A 2010 Cochrane review attempted to quantify the effect of sports participation on PTSD, but published data are still scarce and heterogeneous, and the authors could find no studies that met their inclusion criteria, concluding that more research is needed for a fair assessment.24

“What we think is that recreation activities have unique ways to address some of the key symptoms related to PTSD, though we don’t yet really understand the exact mechanism,” Lundberg said. “But it seems clear that mood states associated with PTSD—heightened stress, re-experiencing negative events, and emotional numbing—are decreased with participation.”

The VA experience

Experts at the US Department of Veterans Affairs recognize the power of adaptive sports to improve the lives of its wounded soldiers and have invested significant resources in sports programs, said Chris Nowak, national director of the VA Paralympic Program, a former marine who underwent a below knee amputation, and a Paralympic ice hockey player.

“The VA recognizes sport as a form of healthcare and as a critical part of the rehab process,” said Nowak, whose own participation in adaptive sports, which began with a skiing clinic, gave him the confidence to return to sports he played before his injury and, eventually, to rise to a highly competitive, challenging level.

“The VA has put so much time and energy into adaptive sports because first, [vets] will be less likely to use the VA healthcare system and will be more independent,” he said. “Second, and most importantly, it helps vets in so many ways—helping them get off pain meds, improving their physical health and addressing PTSD, as well as everyday things—reengaging with their families and communities with a good quality of life. That’s what I found with myself.”

Wounded military personnel are introduced to adaptive sports very early in rehabilitation, Lee said.

“We start with simple bedside activities like bingo or cards to get their fine motor movements going,” he said. “Even before they’re medically cleared to participate in active sports, we show them specialized equipment and take them to events where they can see their peers play and see what the possibilities are.”

Lee noted the potential benefits of sports participation also serve as good motivators for wounded soldiers.

“We tell them, you can’t participate until you’re medically cleared, so help us get you well,” he said. “This actually motivates them to do a lot of the preventive medicine they wouldn’t normally do.”

The VA encourages vets to take their sports activity as far as they can, and currently has 111 individuals on national or Paralympic teams, though Nowak noted that building Paralympians is not the VA’s goal.

“If they can take part at an elite level, we’ll support that,” he said, “but our primary goal is to use sport as a form of rehabilitation that gets vets engaged back into their everyday life, becoming active and productive members of society.”

Nowak noted that the Valor Games, three-day sporting events organized in different regions around the country, are aimed at bringing adaptive sports close to home.

“The VA partners with the US Olympic Committee and local private organizations so vets can connect with adaptive sports programs where they live,” he said. “We will hold four this year, and next year we hope to add two more events.”

Nowak said advances in prosthetics have helped drive the growth of the VA’s adaptive sports programs.

“Senseless war has really pushed the prosthetic field light years ahead of where it was, and that’s really what has allowed veterans to get engaged in sports early after injury,” he said, noting gel liners, sockets, and diverse types of knees increase comfort so much that wearers can push themselves harder and longer and gain benefits more quickly than in the past.

Orthotic design has also advanced to meet the needs of wounded soldiers. Limb salvage, common in recent conflicts, can leave veterans with significant pain and mobility limitations, and many consider amputation so they can receive a prosthesis that will allow them greater activity.

A team at San Antonio Military Medical Center in Texas designed the IDEO (intrepid dynamic exoskeletal orthosis) to help individuals with severe lower limb trauma return to high levels of activity. Using the energy storing ankle foot orthosis (AFO) as part of an intensive eight-week “Return to Run” rehabilitation protocol results in a better than 80% return-to-running rate, wrote the investigators, who also noted the majority of patients who were considering amputation before using the AFO subsequently decided to retain their injured limb.25

Overcoming barriers

cycling1Mihai Bragaru cautions that not all individuals with lower extremity disabilities will be able to jump into adaptive jogging, surfing, skiing, or other demanding sports.

“There are some individuals with serious, life threatening conditions who cannot exercise [at intense levels]. For these, other sorts of therapies, perhaps yoga or water gymnastics, would be more appropriate,” he said.

And there are other obstacles.

Sarah A. Deans, MSc, P/O, MBAPO, FHEA, a teaching fellow in the Department of Biomedical Engineering at the University of Strathclyde in Glasgow told LER that, based on her 2012 literature review,26 barriers outnumber facilitators for sports participation among prosthesis users.

“Our review identified physical issues such as stump pain, embarrassment, psychosocial issues such as poor perception of body image, and low preamputation levels of physical activity as significant barriers to taking part in sport,” she said.

Bragaru also reported on barriers to participation in 26 Dutch lower limb amputees, 13 of whom were designated as athletes based on their current activity level.27

He found the most significant obstacle is the same as for the able-bodied population—motivation.

“We all know sport is good [for us] but we don’t do it, at least most of us,” he said. “And among the disabled and the amputees, we can speak about shame and trivialization from others—they feel ashamed and trivialized by others, which does not mean necessarily that others do trivialize them—together with insufficient and unadapted facilities.”

Nonathletes in the study commonly identified a lack of transportation to sports facilities, poor health, and lack of a sports partner as barriers to activity. Compared with nonathletes, athletes tended to focus on problem solving and advantages of sport participation—staying healthy, making social contacts, and decreasing daily tension and phantom limb pain were common themes.

Deans said a barrier identified in her review was a perception by those with limb absence that “high activity” prosthetic components are required to participate in physical activity or sport.

cover-table

Wening called this idea “a major modern myth,” noting that, with increasing media coverage and public interest in high-profile disabled athletes equipped with the most advanced devices, people who wish to participate at more recreational levels often mistakenly believe they need similarly sophisticated—and costly—devices.

“Someone who is cycling in the Tour de France, for example, isn’t going to use a Huffy 10-speed. They’re going to have very specialized equipment that’s very expensive and custom fit to their specific needs,” he said. “But that level of competition doesn’t represent what the average amputee is doing. If I have patient who comes in and says, ‘I want to start running, so I need a running foot,’ I’ll suggest he start by making sure the socket is comfortable and learning to run in his current leg. Then, once he’s maybe run a bit in that leg and decides he wants to run 5Ks regularly, we can move on to looking at a device he’s only going to use when he runs.”

Insurance varies widely in the US, but it’s uncommon for payers to cover specialized devices, said Wening, a bilateral congenital below knee amputee and Paralympic medalist (swimming) who now runs recreationally—in his everyday prostheses. Similarly, one of his patients who is an avid, though not competitive, cyclist rides regularly wearing his everyday AFOs.

“He wears two, and doesn’t want to change out the AFOs to ride to work,” Wening said. “He has no control of his foot and ankle muscles, so I pay a lot of attention to how I align and stabilize the devices and his feet and ankles inside the devices so he can effectively transmit power from his hip and thigh muscles to the pedals.”

Bragaru said he doesn’t see the lack of sport devices as the biggest barrier to participation.

“More than half of lower extremity amputees are older than 65, have a vascular or cardiac illness, and are mostly sedentary. Even making available such a prosthesis will not get them moving,” he said.

It’s these patients, said Wening, who often lack awareness of resources.

“Some groups, like children, veterans, and younger, highly motivated adults, get a lot of focus and outreach. But the 50-year-old diabetic patient with an amputation may be much less likely to be aware of what’s out there,’ he said. “I think clinicians need to be a lot more proactive in getting this population—which probably need recreational activity the most—connected with community resources and programs.”

Bragaru and Lee suggest clinicians interested in helping their patients get active start with incremental steps, whether they be toward getting a particular patient interested in physical activity or building an adaptive sports program.

8004089058_67354de67a_1“What I saw during my interviews is that some people get somewhat frightened when they hear the word ‘sports,’” Bragaru said. “Clinicians should consider motivating them to become more physically active [with less intimidating activities] like walking, swimming, gardening, or any other activity that requires physical expenditure for at least thirty to sixty minutes per session.”

Lee, who will lecture on adaptive sports at the upcoming American Academy of Physical Medicine and Rehabilitation conference in October in Washington DC, said one focus of his talk will be to advise practitioners interested in beginning programs to start small.

“We started an adaptive cycling clinic [at the Milwaukee VA], and at the first event one vet showed up, along with a handful of volunteers,” he said. “The next year we had fifteen vets and fifty volunteers, and most recently we had twenty nine vets and a hundred-plus volunteers. We started with a five-mile ride, now we’re doing fifty-mile rides. I like to tell everyone, especially clinicians, if they can pair up with a patient who’s got the desire to do a simple sporting activity, start small and let it sell itself.”

REFERENCES

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21. Disabled USA Sports Survey. Disabled Sports USA website. www.disabledsportsusa.org/about-us/survey. Published February 12, 2009. Accessed September 4, 2013.

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