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Problems Experienced and Perceived by Prosthetic Patients

John J. Nicholas, MD
Lawrence R. Robinson, MD
Richard Schulz, PhD
Carol Blair, RN
Richard Aliota, MD
Gerri Hairston, MSW, LSW

ABSTRACT

Ninety-four patients from two amputee clinics completed a 123-item questionnaire. Results were tabulated and subjected to statistical analysis by computer. Results indicate patients feel decreased ability to defend themselves, a sense of difficulty with appearances, and perceive they did not receive rehabilitation care in transfers, tub baths, driving, etc. Tests for depression were more strongly positive in patients who most recently had undergone amputation.

Key Words: Amputees, ADL activities, patients' perceptions.

Introduction

"No one thanks a surgeon for cutting off an arm or a leg" (1). Nonetheless, amputation surgery has been practiced widely and described as a standard procedure in early textbooks of surgery (2). Once amputation has saved a patient's life, his feelings about the procedure and his situation will influence the subsequent course of his life, rehabilitation, personal relationships, income, health and spirit.

Previous investigators have compared the loss of a limb with the loss of a spouse and studied the progression of psychological responses, patients' feelings after an amputation, depression among amputees, psychiatric symptoms, social and psychological adjustment following amputation, psychosocial factors affecting rehabilitation outcome, the effects of age and time, the effects of activities of daily living (ADL) changes, the effects of depression on phantom pain and reasons for psychiatric consultation following amputation (3-11). One of us (JJN) attended a support group session, Help Amputees Rehabilitate Themselves (HART), and listened to a multitude of patients' practical problems, perceived wrongs and criticisms, and many difficulties relating to work, personal relations, physician relations, etc. We undertook this study by questionnaire to see if the troubles reported in the HART session were widespread or limited. We discovered many problems and issues that are important to a significant proportion of amputees and therefore should be understood by the health professionals caring for these patients.

Methods

A questionnaire was designed to elicit pertinent information regarding patients' perceptions, problems and feelings related to their prostheses and their lives as amputees. In addition, standardized tests were administered to assess depression and ADL. Ten of these questionnaires were distributed on a pilot basis, and it was observed patients would answer them quickly and completely.

The questionnaires were then distributed by a physicians' assistant (PA) to 94 consecutive patients with amputations who attended the prosthetic clinic of either the Harmarville Rehabilitation Center or the Presbyterian University Hospital/University of Pittsburgh from September 1987 through October 1988. The PA offered to read the questions and explain the intent of questions in case any patients were illiterate, had vision problems or did not grasp the meaning of the questions. Questionnaires were completed at the clinic visit, and the PA collected them.

The information obtained from the questionnaires was entered into computer files, verified and analyzed using Statistical Package for the Social Sciences (SPSS-X). Although 94 questionnaires were returned, not every subject answered every item, and therefore some items have fewer than 94 responses. Informed consent was obtained from each patient according to guidelines of the Institutional Review Board of the School of Medicine, University of Pittsburgh and the Harmarville Rehabilitation Center Inc.

Results

Demographic Characteristics of the Population

Ninety-four patients completed the questionnaire (63 males, 31 females). The mean patient age was 57 (SD - 19.5) (range 19-91). The age distribution was more skewed toward the younger population than expected (see Figure 1 ).

There were 75 white, 14 black and five "other" patients. Thirty-seven subjects had undergone amputation before 1983 and 57 since 1983. Causes of amputation included a significant incidence of trauma (see Figure 2 ).

Amputations included one above-elbow, three below-elbow, one hip disarticulation and one Syme's amputation but most were above-knee or below-knee (left AK, 11; right AK, 14; left BK, 35; right BK, 28).

The social situation of patients was not unusual. The largest percentage were married (41 percent). Twenty-three percent were widowed and 17 percent never married.

The education level was relatively high with a median level of high school graduation or greater. Thirty-two percent had attended "some college," 5 percent graduated from college and 8 percent completed a professional school.

Most patients were unemployed. At the time of the interviews, six were housewives, 14 were employed fully, four were employed part-time; 38 were retired; eight were unemployed, and 24 were disabled from working. Those who were employed had a higher level of education (chi-square, Pearson coefficient = 68.63; P = .006).

Forty-six patients said they did not lose their jobs because of their amputation, but 13 did. There was no difference in education level between these two groups; however, those with above-knee amputations were more likely to have lost their jobs than those with below-knee amputations (chisquare = 7.51; P = .006). The median income was low, between $10,000 and $14,999.

Public transportation was avoided by most patients (see Figure 3 ).

Amputation Experience and Rehabilitation Training

Eighty patients (84 percent) perceived they had no choice regarding prescription of their initial artificial limb; only 14 said they had. Fifty-nine (63 percent) were either somewhat satisfied or very satisfied with the comfort of the prosthesis while 24 reported dissatisfaction. Eighty-six (92 percent) said they perceived their surgeon as sensitive, and five did not. However, 74 (79 percent) said the surgeon did not speak to them prior to surgery, and 20 said he or she did. Fifty-five (59 percent) of the patients reported no discussion with their surgeon following surgery, while 30 (32 percent) did. Of those who had a discussion with the surgeon prior to surgery, 20 said it was helpful, and two said it was not. As for discussions with the surgeon following surgery, 35 (37 percent) said it was helpful, and four said it was not.

Most patients reported they received appropriate rehabilitation training (see Figure 4 ). Vehicle transfers were taught the least (55 percent only), and a significant number of patients reported never having been taught transfers (36 percent), bathing (40 percent), stair climbing (19 percent), walking on an inclined plane (26 percent) or care of the prosthesis (27 percent).

Practical Experience with Prostheses

Most patients (66 of 89 or 74 percent) wore their prostheses eight or more hours a day (see Figure 5 ). Education level did not affect the hours of wear; however, those who wore their prostheses for longer periods of time had been amputees longer (R = 0.29; P = .003), found their prostheses more comfortable (R = .19, P = .04) and were less depressed (R = .23, P = .02) than those who wore them for shorter periods. There was a negative correlation between time since amputation and depression (R = .25, P = .01). Below-knee prosthesis wearers wore their prostheses for more hours during the day than above-knee prosthesis wearers. Most (46 of 84 or 55 percent) received their prostheses after a period of three months postoperatively, and most (57 of 90 or 63 percent) said they were not familiar with the various options available in prostheses at that time.

Many daily activities were affected by wearing a prosthesis. Outstanding among tthe changes resulting from amputation were the perceptions of a patient's lessened ability to defend him or herself (72 percent) and the limitation on activities by inclement weather (66 percent) (see Figure 6 ). Patients were almost universally satisfied with their rehabilitation physician (84 of 86 or 98 percent) and limb company (87 of 90 or 97 percent). Only a few (14 of 94 or 15 percent) attended a support group.

The ability to defend oneself did not vary significantly with age. Younger patients were more likely to feel their choice of apparel was affected (chisquare, Pearson = 2.23; P = 0.029) as were women (chi-square, Pearson = 4.77, P = 0.029). The more highly educated were also more likely to perceive their choice of apparel was affected (T = -3.35, P = .001).

Discussion

Our patients were not unusual regarding etiology, site of amputation, gender, race or employment status. Although most patients were unemployed, a small number lost or changed their jobs because of amputation. Most felt they had little choice regarding their amputation or selection of a prosthesis yet more than two-thirds wore their prosthesis eight or more hours per day. Lack of communication with the surgeon was almost universal, but it did not alter the patients' perceptions that surgeons were "sensitive" to their needs. It appears therefore that patients did not resent the lack of communication with their surgeons.

Quite striking was the number of patients who felt the selection of clothing, choice of transportation, mobility during inclement weather and other activities of daily living, including their ability to defend themselves, were altered for the worse by their amputations. Also impressive is the number of patients who reported they did not receive some aspect of mobility training (transfers, bathing, etc.). We cannot be sure whether this represents a lack of training or just a lack of memory for the training. Health professionals should be aware of these feelings of conspicuousness and vulnerability.

Regarding depression, it is encouraging to see a negative correlation between the time since amputation and depression, suggesting that affect improves over time after this surgery. Moreover, those who wore their prostheses for longer periods of time were less depressed.

Several authors have previously studied various psychological, social and personal responses of patients following limb amputations; however, none has discussed pertinent practical problems in detail.

Parkes (1975) compared the results of interviews from 21 British widows and 48 recent amputees. He found amputees had a stronger sense of their limb's presence and a lesser sense of approval for grieving over their loss. MacBride et al. (1980) interviewed 50 amputees and found elevated stress levels and fear of falling, financial failure and ability to perform ADLs. Stress was greater later rather than immediately following amputation (4). Froggatt and Mawby (1981) found 35 British amputees they interviewed to be ADL independent and rarely complaining of isolation (5).

Kashani et al. (1983) interviewed 65 amputees and found depression prevalent soon after amputation (6). Shukla et al. (1982) found psychiatric symptoms acutely common in 72 amputees interviewed after amputation in India (7). Thompson and Haren (1983) interviewed 134 British amputees and found little depression but much social isolation following amputation (8). Gerhards, Florin and Knapp interviewed 178 German war veterans and found the wives reported performing increased physical work, and the amputees reported vocational satisfaction and participation in sports activities (9).

Frank et al. (1984) studied 66 amputees by questionnaire and found depression decreased with time after amputation (10). O'Toole et al. (1985) studied 60 amputees and found the Barthel Index rose (improved), the PULSES Profile fell (worsened) and the ESCROW Scale rose (indicating a decrease in social supports) following amputation (11).

These studies describe many facets of the amputee experience but do not describe the area of personal concerns and practical problems in which we were interested.

Conclusion

We believe our patients' sense of defenselessness and altered appearance in the eyes of the non-amputee world, and their reduced mobility during inclement weather, should be appreciated more by those professionally involved in their care. These patient perceptions may be unique to amputee patients. Practical suggestions can be offered for dressing and mobility problems. In addition, while many rehabilitation training procedures were taught to our patients, a significant minority in each category denied ever having received the training. Perhaps a checklist should be included with the physical therapy schedule of these patients and items initialed by the therapist so they are not forgotten. Health professionals should take inventory to see whether ADL transfers and automobile transfers are taught in their programs.

Most of our patients were recent amputees. Apparently, more experienced amputees have learned to obtain access to prosthetic devices without attending prosthetic clinics. Our review suggests patients are more depressed acutely following their amputation than when assessed months or years later. It may be that amputee patients require a period of mourning for their loss before they can get on with the daily business of prosthetic wear.

John J. Nicholas, MD, is professor and chairman, Rush University School of Medicine, Department of Physical Medicine and Rehabilitation, 1653 W. Congress Parkway, Chicago, IL 60612; (312) 942-8905

Lawrence R. Robinson, MD, is assistant professor, Department of Rehabilitation Medicine, University of Washington.

Richard Schulz, PhD, is professor of qsychiatry, Departmentof Psychiatry, and director of Center for Social and Urban Research, University of Pitsburgh.

Carol Blair, RN, works in the Division of Rheumatology and Clinical Immunology, Departmentof Medicine, School of Medicine, University of Pittsburgh.

Righard Aliota, MD, is a resident in the Deparment of Orthopedic Surgery, School of Medicine, University of Rochester Medical Center, Box 665, Rochester, NY 14642.

Gerri Hairston, MSW, LSW, works in the Social Work Department, Presbyterian University Hospital, DeSoto at O'Hara St., Pittsburgh, PA 15213.

References:

1. Scott Nettrour MD, initial lecturer in course for residents, "Introduction to Contemporary Prosthetics," 1983. (Division of Rehabilitation Medicine, Department of Orthopedic Surgery, School of Medicine, University of Pittsburgh, 1983-1988). Personal Communication.
2. Bedington T. The first lines of the practice of surgery being an elementary work for students and a concise reference for practitioners. Boston: S.A. Cooper. 1828:382-91.
3. Parkes CM. Psychosocial transitions: comparison between reactions to loss of a limb and loss of a spouse. Brit J Psychiat 1975; 127:204-10.
4. MacBride A, Rogers 1, Whylie B. Freeman SJJ. Psychosocial factors in the rehabilitation of elderly amputees. Psychosomatics 1980; 21:258-65.
5. Froggatt D, Mawby R. Surviving an amputation. Soc Sci Med 1981; 15E:123-8.
6. Kashani JH, Frank RG, Kashani SR. Wonderlich SA, Reid JC. Depression among amputees. J Clin Psychiatry 1983: 44:256-8.
7. Shukla GD, Sahu SC, Tripathi RP. Gupta DK. A psychiatric study of amputees. Brit J Psychiat 1982; 141:50-3.
8. Thompson DM, Haren D. Living with an amputation: the patient. Int Rehabil Med 1983; 5:165-9.
9. Gerhards F, Florin I, Knapp T. The impact of medical, reeducational, psychological variables on rehabilitation outcome in amputees. Int J Rehab Research 1984; 7:379-88.
10. Frank RG, Kashani JH, Kashani SR, Wonderlich SA, Umlauf RL, Ashkanazi GS. Psychological response to amputation as a function of age and time since amputation. Brit J Psyciat 1984; 144:493-7.
11. O'Toole DM, Goldberg RT, Ryan B. Functional changes in vascular amputee patients: evaluation by Barthel Index, PULSES Profile and ESCROW Scale. Arch Phys Med & Rehabil 1985; 66:508.