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Clinical Perspectives on Wheelchair Selection

An Overview . with ReflectionsPast and Presen of a Consumer

by Lynn Phillips and Angelo Nicosia

Mr. Nicosia is Hospital Liaison Director to the VA for the Eastern Paralyzed Veterans Association . He is a memberof the American Society for Testing and Materials (ASTM) and has been a wheelchair consultant for the VA.

Ms. Phillips, formerly National Research Director of the Paralyzed Veterans of America, is president of RehabTechAssociates, Inc ., in Columbia, MD. She serves as Administrator of the RESNA/ANSI Technical Advisory Group(TAG) on wheelchair standards.

INTRODUCTION

An estimated 1 .2 million Americans use wheel-chairs as their primary source of mobility,

including nearly 300,000 people with spinal cordinjuries, close to a half-million nursing home resi-dents, and those with other mobility-limiting condi-tions such as muscular dystrophy, multiple sclerosis,and cerebral palsy . To someone who uses a wheel-chair all the time, comfort, proper fit, and ease ofuse is essential and contributes significantly to asense of independence and the ability to participateas fully as possible in the activities of daily living . Ifthe wheelchair is uncomfortable, is poorly fit to theindividual, or is cumbersome to use, it can haveserious negative effects on the user's health, mobil-ity, and overall quality of life . In view of the presentday variety of options, a wheelchair also can make adistinctly personal statement about the user . Just aspeople define themselves to others by the clothesthey wear or the car they drive, the kind ofwheelchair one uses often says something about thatperson's interests, tastes, and self-image. A wheel-chair is not "just" a means for mobility. It is ahighly personal device that should be chosen withthe utmost care and precision .

WHEELCHAIR SELECTION IN DAYS PAST

The changes in looks and operation of wheel-chairs over the past few decades represent a

revolution in engineering design . To illustrate thisadvancement, one only need contrast what it waslike for the disabled veterans of World War II.Angelo Nicosia is one of those veterans and shareshis first experiences with wheelchairs in the follow-ing reflections.

"I recall, back in 1946, the first time I was toget into a wheelchair . My primary physician at theArmy hospital where I was brought after my injurywas on morning rounds one day after I'd been in thehospital about 2 months and said to all around, `It'stime this patient was out of bed and in a wheel-chair .'

"This was good news to me . Either a nurse or aphysical therapist then scurried around the wardlooking for a patient who was not going to get outof bed that day so I could borrow his wheelchair.They put a pillow on the chair and then picked meup and put me in the wheelchair . Since I didn't havevery good balance, they secured me to the chair witha bed sheet.

1

2

JRRD Clinical Supplement No . 2 : Choosing a Wheelchair System

Figures la and lb.The front and side views of a wicker wheelchair representative of those used by veterans injured in World War II . The chairs weredesigned primarily to be pushed by an attendant and were not sized individually for each patient . (Photos courtesy of AngeloNicosia)

3

PHILLIPS and NICOSIA : An Overview . . . with Reflections

"Some of you younger people may not beaware of the type of wheelchair that was commonlyused by the military in those days . It had a wickerseat and back and sometimes was called a `canechair.' It had two large wheels in the front—24-inchwheels, I think—and two casters in the rear (Figuresla and lb) . It was extremely difficult even for astrong paraplegic to propel this kind of chair . I am aC6-7 incomplete quadriplegic, and I could notpropel the chair without literally falling out or goingover backward.

"It took 3 months for me to receive mynew Everest and Jennings 18-inch-width wheelchair.It was all shiny and chrome plated, and I felt

like someone had given me a new Cadillac con-vertible. Propelling it was a pleasure comparedto that old high back wicker chair that I had usedin the hospital . Even in my new chair, though,I noticed that my elbows and upper arms gotbruised by the armrests as I pushed just the300 yards to get to therapy . Something obviouslywasn't right with that chair if I kept hurting myarms just by pushing 300 yards, but I didn'tknow any better then because I had never used anyother regular wheelchair. What I now know is thatthe chair I was given was too wide for me—at thattime I was 5 feet 10 inches tall but weighed only 100pounds .

4

JRRD Clinical Supplement No. 2 : Choosing a Wheelchair System

"After I was discharged from the Army hospi-tal, I passed on to another branch of the govern-ment medical system, the Veterans Administration . Iwas impressed by all the hustle and bustle at theregional office in New York City : 16 floors ofpeople all working for the benefit of veterans and,since I was a veteran now, they were working forme!

"I met my prosthetic representative, who was avery nice man, as were all people I met at theVeterans Administration. The first thing he askedme was, `What can I do for you?' I asked for awheelchair to replace the hand-me-down I had beenusing for a year . He took out his 18-inch ruler,measured my chair sideways, backways, and I thinkupside down, and ordered the exact same chair thatI had been using.

"When I got my third wheelchair—not until 15years after my injury—I made some inquiries tobioengineers, a physical therapist, and an occupa-tional therapist about the proper size for mywheelchair . The consensus was that I did have theright size wheelchair . However, by this time I hadgone up in weight from 100 to 135 pounds, my necksize had increased from 14 to 17 inches, and I hadan enviable 32-inch waist, 40-inch chest, and 33-inchhips . Somehow, though, I still felt that the 18-inchseat was too wide for me.

"On a trip back to my prosthetic representa-tive, I asked if he would allow me to read some ofhis catalogs on wheelchairs. I found out that at noextra charge I could order a chair with the dimen-sions that I felt I needed—once I practically signedmy life away and that I would accept the order whenit arrived! I did it, and I have been using a16-inch-width chair ever since.

"Those 2 inches have made a tremendousdifference: no more sliding around in a chair that'stoo wide for me; no more black-and-blue marks onmy arms, or pain in my shoulders from holding myarms too far out and up . I am far more comfortablesince the wheels are closer to me, and I can propelthe chair much more efficiently.

"Thus, I am living proof of some of theproblems that can come about when both medicalprofessionals and patients lack the proper knowl-edge and training to order an appropriate wheel-chair ."

WHEELCHAIR SELECTION TODAY

Although wheelchairs today look a lot differentfrom the cane back chairs used in military

hospitals just after the second world war, in manycases wheelchair selection is still made by peoplewho have inadequate knowledge about the scope ofproducts and options available to provide for anoptimal choice for the user . This is happening forseveral reasons . In the first place, newly disabledpeople generally have been thrust very quickly intothe population of wheelchair users . Consequently,their knowledge of what kind of chairs are availableis limited to whatever they already know aboutwheelchairs and what they can learn from theirtherapists and physicians . And, while there are a fairnumber of knowledgeable people around who doknow the wheelchair market, there is no guaranteethat a person being prescribed his or her firstwheelchair will encounter one of these experts.

It is generally agreed that few practicing thera-pists and even fewer physicians have had adequateformal preparation in assisting an individual inselecting and then fitting that person with anappropriate wheelchair . For many physical andoccupational therapists, training in wheelchair selec-tion and fit has consisted of a single lecture in acourse during their schooling . Moreover, because ofthe rapidly changing nature of the wheelchairmarket, information in textbooks often is woefullyoutdated and instructors are ill-prepared to supple-ment the text with updated information.

In many cases, the most knowledgeable personavailable on the subject is a salesperson for aparticular wheelchair company. However, while thisindividual may have access to the most up-to-dateinformation, he or she quite naturally will empha-size the philosophy—and products—of his or herown company . And, objectively, it really is not theirjob to inform and educate consumers about allcurrently available wheelchairs.

Another difficulty with wheelchair selectiontoday is that, although a wheelchair must beprescribed soon after an individual has becomeinjured—when he/she is still in a hospital setting—itwill be used primarily in a home and communityenvironment . As a hospital liaison for EasternParalyzed Veterans Associations (EPVA), Mr .

5

PHILLIPS and NICOSIA : An Overview . . . with Reflections

Nicosia sees every day the problems created by thispractice combined with the lack of adequate infor-mation on the part of prescribers and new users.

"Let me give you a general idea of what hashappened to some wheelchair users . A doctor justtells his patient, `You're going to get a wheelchair,'and writes up a consult for the patient to beevaluated . The doctor is supposed to write theprescription, but frequently he just does not knowenough about the individual to do it . So, at least inthe VA, the patient will go to a wheelchair evalua-tion clinic where he is able to discuss what his needsare with a clinician.

"Since the person is usually newly injured andknows little about the subject of wheelchairs, heusually looks at the therapist as the epitome ofknowledge . Unfortunately, in many cases, the thera-pists aren't very familiar with the new productscoming out.

"Sometimes, though, the user will have anotion of the kind of chair he wants from talkingwith other wheelchair users or from an article he hasread . For example, a person may see a new chair orcushion in Paraplegia News or Sports 'n Spokes andbring the ad in to show the therapist or physician.But if the therapist doesn't know about it, in a lot ofcases he just won't consider it and might refuse toorder it . Or maybe the user says he'd like one of theactive or `sports' chairs, but the therapist tries totalk him out of it . In such cases, it's hard for theindividual with little experience with wheelchairs toknow what to do.

"I know of still other cases where the physicianor therapist will decide something about a patient's`needs' even if the patient doesn't agree . Forinstance, one person I know, a quad who wanted apowered chair that could go at fairly high speeds,was not able to get what he wanted . His physicianrefused to order it because she felt it was too fastand therefore unsafe . But, what is too fast for oneperson may be the best pace for another; it's a verypersonal, individual decision.

"Such therapists and physicians need to under-stand that the people who are their patients todayare going to have to be, and want to be, independentindividuals in a few weeks or months . It can be hardto see a newly injured person that way, but it's

essential both for proper rehabilitation and formaking sure that person gets the right wheelchair ."

Few physicians and therapists are themselveswheelchair users, and therein lies a major problemin wheelchair prescription. It is extremely difficultfor a nonuser to understand the nuances of dailywheelchair usage that a user understands intrinsi-cally by being in a chair most of every day. Thisunderscores the need for therapists to listen to andtake into account the user's point of view whenmaking decisions about wheelchair style, specialfeatures (such as high speed capabilities on apowered chair), and possible advantages of newerproducts . (Not coincidentally, many newer productsare being developed and marketed by wheelchairusers themselves .)

No place, though, is the perspective of the useras important as in the decisions about "proper" fit.For many individuals the standard measurementsand fitting practices are not going to be appropriate.The rules that a therapist or physician learns abouthow high a back "should" be, or whether or not achair "should" have armrests, or how high off thefloor a wheelchair "should stand, often need to bemodified or even discarded completely in order tobest meet individual needs . The only way to gainthis kind of specific knowledge that meet the varietyof a patient's needs and abilities is to listen to himexpressing them and by paying attention to what issaid by experienced wheelchair users.

For many years the standard wheelchair was 18inches wide for an adult; yet as Mr. Nicosiadescribed earlier, he found it more comfortable andefficient to use a chair with a seat 16 inches wide,even though no one seeing him would describe hisbuild as slight or small . From the "standard" pointof view Mr . Nicosia's chair would be considered toonarrow; but, in fact, the narrower seat means he canpropel the chair more easily because he does nothave to reach out so far for the wheels.

It is also common practice to allow for an extrainch on each side of the buttocks "for bulkyclothing," or because the therapists assume that theindividual will be gaining weight once he or she getshome, or for any one of several other imaginedreasons. For many individuals, however, those extra2 inches mean that they will have to hold their arms

6

JRRD Clinical Supplement No . 2 : Choosing a Wheelchair System

out farther than necessary to propel the chair . Insome cases it will increase the tendency to lean overto one side, which can lead eventually to curvatureof the spine. It is necessary to fit the user for thewheelchair he needs at the present time, not for theone he "might" need in the future.

Mr. Nicosia has noticed other areas in whichcommon prescribing practices actually serve to limitfunction, and has made the following observations.

"Even though I'm a quad, I don't use armrests.Almost every therapist I know includes armrestsautomatically when ordering a chair for a quadriple-gic patient, but for me they just get in the way.What are armrests for, anyway? I can rest my handsin my lap or on a table, and I can get closer to thetable when I don't have armrests getting in the way.A lot of people do `push-ups' on armrests, butmanufacturers say you shouldn't put that muchweight on them ; and, anyway, I do push-ups fromthe seat of my chair with no difficulty . So I reallywish people who are prescribing wheelchairs wouldreconsider why they are including armrests withalmost every one they prescribe.

Another thing that I personally like is a lowback. Most books on prescribing chairs say that theback should come to about the level of your armpit,but mine comes up only 14 inches from my seat.With the lower back I can turn around in my chair,reach for things behind me, and in general have a lotmore freedom to maneuver than I did when I hadthe standard highback chair . While it's generallytrue that most quads will probably need the higherbacks, as in my case, there are going to beexceptions, and people prescribing chairs have tobecome more aware of these exceptions ."

Proper seating is an essential consideration inwheelchair selection . This is one area, too, where thepotential user is at a disadvantage . Although wheel-chairs and seating systems are actually distinctproducts with different purposes, they work as aunit in providing the user with a method ofmobility . Unfortunately, oftentimes the wheelchairis selected first and separate from the seatingsystem—or vice versa . However, if they are notselected at the same time the height at which the useractually will be sitting can be adversely affected,i .e., by a seat that is too low for a cushion that is

relatively thin, or by a high rigid cushion combinedwith a high seat.

Although a user can determine fairly quicklywhether or not a particular cushion provides ade-quate postural support and comfort, he has virtuallyno concept of what kinds of cushions will mostadequately relieve pressure on the buttocks . How-ever, he is not alone in this matter because there islittle agreement among clinicians and researchers onthe "best" way to relieve pressure . The majorcushion types—ROHO, VASIO-PARA, Foam-In-Place, Jay, and the standard polyurethane foam orgel cushions—emphasize different properties anddifferent designs for relief of pressure . For aconsumer, this is confusing and most often leavesthe full responsibility for this decision on theprescribing physician or clinician . Thus, it is veryimportant that practitioners become familiar with allthe available seating systems in order to make thebest possible choice for each individual wheelchairprescription.

TOWARD WHEELCHAIR SELECTION IN THEFUTURE

D espite improvements over the years and anincreasing number of options, there still is a

significant need for improvement in the processof selecting mobility systems both for newly in-jured and experienced users. The most seriousproblem with the process of selection today stillseems to be the lack of active involvement of theuser himself in the selection process . The individualwho will be using the wheelchair on a day-to-daybasis outside the hospital is the only person whoknows what kind of life he will be leading, what hisown personal likes and dislikes about wheelchairsmight be, and what he wants the chair to say abouthimself . As therapists and physicians become moreaware of the importance of involving the user inmaking decisions about what kind of chair is mostappropriate, the rate of successful prescriptions willincrease.

Another difficulty with current practice is thetendency to prescribe chairs generically, using oneset of standard rules that do not necessarily fit everyindividual . It is imperative to remember that peoplecome in all shapes and sizes, and that the emphasis

7

PHILLIPS and NICOSIA: An Overview . . with Reflections

should be on fitting the wheelchair to the person,not the other way around.

It makes sense that wheelchairs and seatingsystems should be selected in a coordinated process,since they must function as a unit for the user.Clinicians need to become more aware of the varietyof products and combinations available . To remaincurrent in this field, it is important to keep informedabout new product development and research evalu-ating the products on the market . Excellent sourcesof information are experienced users and periodicalsaimed toward users, such as Paraplegia News,Accent on Living, and Sports 'N Spokes.

CONCLUSION

Clinicians and users alike need to be made awarethat the solution to the problem of developing a

better process for prescribing a wheelchair systeminvolves attention to a number of related issues . Inwheelchair conferences and other meetings we haveheard many people advocate the need for a "trainedwheelchairist," a designation that would certifythose who assist individuals in choosing wheelchairswith a certain standard of knowledge and compe-tence in the field . Ideally, a certification process forwheelchair selection personnel would lead to anincrease in the number of properly fitted andproperly prescribed wheelchairs.

In the meantime, it is essential that physicianswho prescribe chairs and therapists who fit andselect chairs for their patients become better in-formed about the options available and about theintricacies of proper measurement for individual

users. This might be accomplished by organizedtraining teams who present workshops on wheel-chair selection throughout the country . Such teamswould include at least one person who is a wheel-chair user to emphasize the value of listening to theuser's perspective when selecting a wheelchair.

Standardizing methods for describing and dis-seminating information on current wheelchair prod-ucts is also important . The RESNA/ANSI TechnicalAdvisory Group (TAG) on wheelchair standards hasdeveloped standard methods for disclosing informa-tion about wheelchairs, while working on domesticand international standards for wheelchairs . Wheel-chair manufacturers are encouraged to discloseinformation about their products in the formats thatare being developed so that product-by-productcomparison will become less subjective and moreeasily accomplished. We also hope that the informa-tion on these products can then be put into acomputer program accessible to prescribers through-out the country . Such standardization should enableevery facility that prescribes wheelchairs to haveup-to-date, balanced information about the currentwheelchair market.

Finally, we hope to see continuing improvementin the range and quality of options available towheelchair users . Over the past 5 to 10 years, thewheelchair market has become much more com-petitive and dynamic . This has encouraged newcompanies to introduce lighter, faster, and lessexpensive chairs . Moreover, many wheelchair usershave marketed products on their own . This trendhas significantly expanded the choices available towheelchair users, and we can only hope that itcontinues .