Survey of Arm Amputees Not Wearing Prostheses: Implications for Research and Service
DIANE MELENDEZ, OTR, MPH ANDMAURICE LEBLANC, MSME, CP
In 1984, the "Improvement of Body-Powered Upper-Limb Prostheses Project" was launched with funding from the National Institute on Disability and Rehabilitation Research.1 The project aimed to improve the state of the art of conventional body-operated arm prostheses, which have not changed significantly since the post-World War 11 developments. Recently, many prosthetists and amputees have gravitated toward use of myoelectric prostheses which offer better appearance, improved comfort with reduced harnessing, and a high-tech image. Nevertheless, most amputees still use body-powered prostheses because they are simpler, more reliable, and less expensive.2-5
A previous survey of amputees using a prosthesis identified the most liked and disliked features of body-powered prostheses. Suggestions for design improvements have been translated into research projects.7 Surveys generally have been conducted through prosthetic facilities and centers.2,8-10 While these investigations included wearers and non-wearers of prostheses, they were limited to people who at one time were fitted with a prosthesis. The current study assumed that there is an "invisible" population of amputees who never wore or no longer wear a prosthesis and so are not involved in the usual prosthetic service networks. These people traditionally have not been included as a source of information on amputee desires and needs.
Twenty-five subjects participated in the study. Criteria for inclusion were: age over 12 years, ability to answer questions by telephone independently, and currently not wearing a prosthesis. Amputees in the study fairly well represent the general population of arm amputees.6 The authors recognize that amputation level has been correlated with prosthetic use previously.10,11 Because the current study was intended to elicit reasons for non-wear other than amputation level, it was not considered necessary to confine the survey to a single amputation type.
Respondents were identified through clinicians providing services to amputees, hospital-based occupational therapy departments, California Children's Services (CCS) regional child amputee clinics, private prosthetists, Veterans Administration prosthetic service, University of California at Los Angeles Prosthetic-Orthotic Program, and most effectively through amputee support groups and sports organizations. Subjects included 14 males. The age range was 14.5 to 76 years. Ten subjects had congenital limb deficiencies; all amputations were unilateral (Table 1 ). Seven people had never been fitted with a prosthesis.
A questionnaire was devised based on the 1984 survey of prosthetic users. Respondents were asked to describe their previous prosthetic experience, to evaluate specific prosthetic components as satisfactory or unsatisfactory, to rate prosthetic factors in importance, and to suggest design improvements.
Persons agreeing to participate were contacted by telephone to complete the questionnaire. The purpose of the study was explained and the subject's consent to be interviewed was confirmed. Confidentiality has been maintained.
The survey consisted of 18 closed- and open-ended questions. Responses to selected survey questions are listed and compared with the previous survey of prosthetic users (Table 2 ).
Most acquired amputees did not perceive dominance or non-dominance of the amputated side as affecting the decision to wear a prosthesis. Persons who had worn a prosthesis gave strong praise for the superior function of voluntary-closing terminal devices.
Several significant themes emerged: Of the total group of 25,
- 14 felt they had not been given sufficient information on available prosthetic options, or adaptive aids and one-handed techniques.
- 14 did not try to obtain information independently.
- 18 described their dream prosthesis as looking like their sound arm and hand, even though they rated appearance as least important compared to function, comfort, and control.
- 20 expressed dissatisfaction with the state of the art of upper-limb prostheses, the lack of available resources, and the prohibitive cost of myoelectric prostheses.
- 18 would reconsider using a prosthesis if certain design improvements were made and the cost was not excessive.
Of the 18 who had worn a prosthesis,
- 16 felt they were as functional, or more so without it.
- *8 felt they had not received adequate preparation or training.
Wearers vs. Previous Wearers and Non-wearers
Wearers are persons currently using a prosthesis; previous wearers are those interviewed for this survey who had at some time in the past used a prosthesis; non-wearers are all persons in present survey. The non-wearer group differs from prosthetic users in several respects. Three-fourths of wearers rated the most Red feature of their prosthesis as function, while only half of previous wearers did so. Surprisingly, wearers were more critical of prosthetic function and appearance than previous wearers. Only 12 percent of wearers and 6 percent of previous wearers reported their prosthesis as reliable. Sixty-one percent of previous wearers complained of poor or inhibited function when wearing a prosthesis, while no wearers cited this as a problem. Non-wearers specifically described their dream prosthesis as being a duplication of their sound arm. This contrasts with wearers who desire a prosthesis which is pleasing in appearance, but not necessarily anthropomorphic.
Availability of Information
The youngest amputees who had been seen in child amputee clinics had received the most information; the oldest amputees had received relatively little or none at the time of amputation and did not have the current sources for prosthetic information. Few amputees are aware of the complete range of prosthetic technology available, including those people who have had regular or recent contacts with a prosthetic facility. No respondents had been provided information on non-prosthetic options, e.g. one-hand adaptive aids, or training in one-handed techniques.
Amputee Support Groups and Networks
Many amputee groups have been formed and are active in offering peer support. Clinicians who work with amputees can help greatly by providing information on such groups to new patients and in assisting to establish contacts. The importance of support groups has been well established within child amputee centers.10,12-17 The opportunity to share common experiences, and to learn from other members has proven invaluable.
A recent development among amputees is self-advocacy in selecting and receiving services. Amputee support groups and sports organizations are creating national networks for information exchange. Such groups are now represented at national prosthetic-orthotic conferences. Amputees are moving from being passive recipients of services to active participants, critiquing the services they receive. Amputee group networks are poised to be a major source of information dissemination on prosthetic developments.
Implications for Service Delivery
It is commonly recognized that interdisciplinary support for the amputee, usually including a physician, prosthetist, occupational and/or physical therapist, and social worker is optimal. 10,18.19In actuality this is often not the case for people seen outside of referral centers or rehabilitation facilities. Frequently, acquired amputees were referred by their surgeon to a private prosthetist; rarely were respondents directed to other rehabilitation services.
The ideal situation of interdisciplinary team involvement will usually occur for only brief post-amputation period. For those people who continue to wear prostheses, contact is usually limited to the prosthetist. Thus, the role of the prosthetist becomes much more than providing technical services.19 The prosthetist is responsible, not only for providing an appliance, but for liaison with other health service providers and, therefore, should be able to refer clients appropriately. Unfortunately, reimbursement for prosthetic services covers only costs directly associated with providing the prosthesis. Funding for proper implementation and follow-up would doubtless improve prosthetic success and lower the rejection rates, as has been found with other rehabilitation technology.20
Many amputees wanting prostheses have not been given complete information on the variety of prosthetic components and options available. "Some prosthetists are not fully informing amputees of their options or including them in the decision-making process." 1A continuum of information provision exists to allow amputees the opportunity to make an informed choice. The lowest level is when the prosthetist decides unilaterally for the client what type of prosthesis will be provided. The next step involves discussion of available options with the amputee. A higher level may include audio-visual presentations or actual components to examine. The optimal situation would be that in which amputees could select and "try out" different components before making a final decision. The use of modular prostheses could facilitate this process, by allowing interchange of wrist units and terminal devices .21,22 Amputees could assess what components would best meet their needs. It might also be possible to determine if a prosthesis is not suitable, for whatever reason, for a particular person. It is ironic that while few people would consider buying an automobile that they had not test driven, amputees are often forced to accept prosthetic components they have not been able to try before final fabrication.
Private prosthetists and small centers may not have the resources or interest to maintain a substantial inventory of prosthetic components. This is an area that amputee groups may be especially well suited to address. Many members of amputee groups are already prosthetic wearers and can serve as readily available models for particular prosthetic components. A data base could be created of amputee groups, including which members are prosthetic users and might contain detailed information on types of prostheses and components.
Children through age 21 may receive funds for prostheses from Crippled Children's Services in many states. This, however, requires families to demonstrate financial eligibility, and coverage may not extend to myoelectric prostheses. Service clubs have also provided funding for myoelectric prostheses.2 Past age 21, and for persons who acquire an amputation as an adult, funding for prostheses is not uniform.23 Some amputees have been inhibited from investigating prosthetic options because of lack of financial resources.
The survey of non-wearers has reinforced the need for specific prosthetic design research. The most commonly cited needs were for increasing comfort of the socket and harness, or eliminating the harness altogether; more durable cosmetic gloves; decreasing weight and increasing ventilation; and particularly, improving the appearance of functional prostheses.
The importance of prosthetic appearance deserves further investigation. It was assumed that previous prosthetic wearers would evaluate prosthetic appearance more negatively than current wearers. Seventy-one percent of previous wearers reported they were pleased with the appearance of prostheses, while only 47 percent of wearers were. Also, all wearers stated prosthetic appearance needs improvement as compared with two thirds of the previous wearers.
Unilateral arm amputees who have opted not to wear a prosthesis usually consider themselves functional and independent. Strong evidence, however, exists that the choice not to wear a prosthesis has been made with a dearth of information and resources. The current survey of non-wearers suggests that amputees are unfamiliar with available technology, have not received state-of-the-art care, or been given information on non-prosthetic options. A first step is to enable amputees to be informed fully. While availability of and access to information cannot be equated with behavioral change, no real choice can exist in its absence. Most non-wearers surveyed expressed a willingness to reconsider prosthetic use if certain modifications were made, some of which are already available.
As with all types of medical and health care, a strong need exists for improving equitable access to available technology. A major stumbling block is financing of prostheses, as there is wide variation in insurance coverage. Use of modular, trial prostheses would improve the effectiveness of prosthetic match and may screen unsuitable candidates for prosthetic fitting. This approach could increase acceptance rates and thereby help contain costs.
The need to promote active participation of each amputee in the entire process of prosthetic fitting cannot be overemphasized. A dependent patient relationship with service providers clearly has a deleterious effect on the success of prosthetic fitting or the general adjustment of the amputee to limb deficiency. 10,24,21
Interdisciplinary service provision for amputees has been shown to be the most effective approach. It is important to consider all options for promoting function, and not to confine intervention to prosthetic fitting alone. Occupational therapists are particularly well suited to educate amputees regarding a variety of aids and techniques that can be used with or without a prosthesis. The goal is maximizing adaptation and function, the methods should be tailored to each individual.
The authors wish to thank Harold Sears, Ph.D. of Motion Control, Inc. for suggesting that the current survey be conducted, and to Diane Atkins, OTR of The Institute for Rehabilitation and Research and Mary Point Novotny, RN, MS, of the Orthotics and Prosthetics Information Center, Northwestern University for their generous assistance in completing this project.
This work is supported by Field Initiated Grant #GO08535123 from the National Institute on Disability and Rehabilitation, U.S. Department of Education.
Rehabilitation Engineering Center, Children's Hospital at Stanford, 520 Sand Hill Road, Palo Alto, CA 94304. Address correspondence to Mr. LeBlanc.
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