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A Survey of Amputees: Functional Level and Life Satisfaction, Information Needs, and the Prosthetist's Role

Caroline C. Nielsen, Ph.D.

Introduction

The objective of this research was to obtain descriptive data on the concerns of amputees. An earlier in-depth exploratory study of 22 amputees indicated several areas of concern: functional level and life satisfaction; information needs; and the role of the prosthetist (1). These areas were addressed in this national survey of 109 amputees.

Rapid advances in the profession of prosthetics, in new materials and applications, have raised questions and concerns for amputees and have led to an expanding role for the prosthetist. Increasingly, consumers are taking a greater interest in their healthcare, learning and acting as partners with the health professional in obtaining necessary healthcare (2,3). The rapid growth in the number of amputee support groups reflects this trend among amputees. Presently more than 50 groups in the U.S. support new amputees, sharing experiences and information, and expressing united concerns and interest in prosthetic services. These changes in the healthcare system, and particularly in prosthetics, directly affect the role of the prosthetist. These data will assist the prosthetist, during a period of rapid technological and role change, to effectively address the needs of amputees.

Method

Data Acquisition

A 29-item questionnaire was designed to obtain information from amputees on the following issues:

1. Demographic variables including age, education, occupation, amputation site.
2. Function of prosthesis including work and leisure activities, life satisfaction, level of pain and aesthetics.
3. Information needs related to amputation, prosthesis and rehabilitation.
4. Role of the prosthetist including provision of information and interaction.

Subjects

The questionnaire was sent to 50 support groups throughout the United States. Completed surveys were returned by 109 amputees.

Sixty-seven males and 42 females with a mean age of 51 responded. Years of education completed ranged from elementary school to post-graduate degrees, with 34 percent college graduates. Forty-seven percent were employed part- or full-time, and 71 percent had an income below $40,000. Fifty-six percent had been amputees longer than five years (Table 1) . Geographic location was well distributed throughout the country (Table 2) . Below-knee was the predominant site of amputation in the sample (Table 3) .

Results

Functional Level and Life Satisfaction

Previous research (4,5,6) among amputees indicates that function and comfort are the most important concerns of amputees with their prostheses. Fifty-two percent of amputees surveyed in this study cited comfort as their most important concern, and 38 percent cited function as most important (Table 4) . Sixty-seven percent of the participants reported wearing their prosthesis nine or more hours a day, yet 57 percent reported moderate to severe pain most of the time while wearing the prosthesis. A similarly high incidence of residual pain has been reported in other studies (7,8). These results suggest that amputees may expect some level of pain, that they may not fully report these concerns, and they will continue to wear a prosthesis as many hours as possible.

Reported life satisfaction was high with 77 percent of the respondents reporting moderate or high levels of life satisfaction. Similar studies have found high life satisfaction, but low expectations, particularly among older amputees who felt "fortunate to be alive" (9,10). Younger adults have been found to be more assertive in obtaining desired prosthetic services to increase their functional levels.

Surveyed amputees reported participating in a wide variety and level of leisure activities ranging from watching TV to swimming and golf (Table 5) . The respondents who were employed part- or full-time reported significantly higher levels of life satisfaction (p<.04), with those who had full-time employment reporting the highest levels (p<.02). Companionship was also an important factor in life satisfaction with married respondents reporting significantly higher levels of life satisfaction (<.04).

Information Needs

Healthcare research in a variety of areas indicates that patients who feel prepared and informed are more likely to comply with treatment and have an improved health outcome (11,12,13). Increasingly amputees are concerned with the lack of available information on new technologies and the role of the prosthetist (14). This research addressed the role of information and sources of information used by the amputee.

Provision of information ideally begins at the time of amputation. However, amputees report that information was scarce at this crucial time (15). Fifty-three percent of this sample reported that they received little information before or immediately following amputation. New amputees may sometimes be caught in an information gap between surgery and the initial process of fitting a prosthesis. In this sample, when information was provided, the professionals most frequently cited as providers were the physical therapist (25%) and the physician (23%) (Table 6) . The prosthetist most commonly does not appear until the fitting of a prosthesis begins. After amputation, the health professional reported to be most helpful was the prosthetist (65%), (Table 7) , whereas the professionals reported least helpful were the surgeon (42%) and the family doctor (28%) (Table 8) .

The lack of information allowing patients to make informed decisions about their care is a frequently cited concern of amputees. In this study, 44 percent of the amputees reported that not enough information was available. The most frequently cited sources of information used by these amputees were the prosthetist (76%), the support group (64%) and pamphlets (39%) (Table 9) . These data indicate the importance of the role of the prosthetist in providing information to amputees.

Role of the Prosthetist

As the practice and process of prosthetics has become increasingly dependent on technology, the role of the prosthetist has become less clear. The prosthetist is expected to be a master technician, a member of an interdisciplinary rehabilitation team and a healthcare professional. The concerns of amputees reflect the diversity of these roles.

The prosthetist was clearly an important health professional for these amputees. Forty-one percent of the respondents had five or more appointments with their prosthetist during the last year. Most amputees reported satisfaction with their current prosthetist with 68 percent reporting that the prosthetist took a sufficient amount of time to address their needs, and 48 percent felt that the prosthetist was interested in their concerns (Table 10) . However, 56 percent of the sampled amputees had changed prosthetists. Not surprisingly, respondents reporting moderate to severe pain from their prosthesis were significantly more likely to have changed prosthetists (<.02). Of those who had changed prosthetists, 58 percent did so because they were dissatisfied with professional skills and/or the way in which they were treated (Table 11) . Amputees who changed prosthetists commented "I felt there was bound to be something better"; "I wanted to get the best and most qualified". This data suggests that amputees may be increasingly active in searching for a prosthetist who meets their needs.

Conclusions

The results of this research have significant implications for the prosthetist. Amputees have indicated a desire to plan treatment in "partnership" with their prosthetist and to have more information provided. Addressing amputee concerns with information and communication presents an opportunity for prosthetists to expand their roles.

Amputees have reported that it is necessary to "blindly trust" the prosthetist, because information for decision-making is unavailable. This research indicates that the prosthetist, support groups and pamphlets are important resources for information. Although much current information is provided by manufacturers, prosthetists might provide more objective materials which could be discussed with amputees. The ideal situation of interdisciplinary team involvement usually occurs only briefly following amputation (19). The prosthetist rarely becomes involved with patients before amputation, and yet amputees report the desire for information at this time. Increased communication with an interdisciplinary healthcare team might improve the likelihood of prosthetist involvement at this early stage.

These data from amputees throughout the country demonstrate concern with obtaining highly qualified technical care from a professional who communicates a real interest in their needs. This period of rapid technological change and advancement in prosthetics presents a challenge for the prosthetist to play an increasingly significant role in providing the most effective care to the amputee population.

Caroline C. Nielsen, Ph.D. is an associate professor in the Graduate Program, School of Allied Health Professions, 358 Mansfield Road, University of Connecticut, Storrs, Conn. 06269-2101, (203) 486-2834.

References:

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4. Nielsen CC. Op. Cit.
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10. Nielsen CC. Op. Cit. 1989.
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14. Chadderton HC. Consumer concerns in prosthetics. Prosthetics and Orthotics International 1983; 7:15-16.
15. Nielsen CC. Op. Cit. 1989.
16. Chadderton HC. Op. Cit. 1983.
17. LeBlanc MA Op. Cit. 1985.
18. Chadderton HC. Op. Cit. 1983.
19. Melendez D, LeBlanc, MA. Op. Cit. 1988.