In modern health care facilities, clinical governance requires measuring performance against agreed standards and implementing a solution-focused approach to improving any identified shortfalls. Auditing a service such as counseling can involve monitoring the range of problems presented by the clients. This aids the task of identifying the issues within the particular client group that may be appropriately dealt with by the counselor and enables the possibility of measuring improvement.1
Despite claims of a similarity between grief at loss of a body part and grief caused by the death of a loved person,2 the use of standardized measures of emotional distress has shown that emotional disruption is not universal after amputation. Recent studies have shown that because depression (measured by a suitable instrument designed to avoid confounding mood and disability) occurs in a minority of patients, it is difficult to substantiate the hypothesis of a bereavement reaction.3 In addition, Gallagher and MacClachlan4 report that focusing on presumed negative reactions to surgery prevents the expression of realistic outcomes, such as finding positive meaning. Whyte and Niven5 report that only 15% of their sample of individuals with amputations scored significantly on a depression measure, and this was not related to the experience of phantom pain. They also note that, quite apart from phantom pain being a somatized form of emotional distress as reported by Schoenberg and Carr,6 the depression items that were endorsed were related to disability, rather than pain.
A similar conclusion was reached by Wetterhahn et al.,7 who found a significant positive relationship between physical activity levels and body image, suggesting that body image disruption is associated more with physical disability than emotional problems and should be addressed with increased physical exercise in rehabilitation.
Nevertheless, Dougherty8 suggests that severity of injury, especially if it is associated with trauma, has implications for the need for psychological services. Thus, it seems important to identify patients who could most benefit from counseling in terms of level, cause, and time from amputation.
Two previous attempts9,10 addressed the embryonic problem of empirical evaluation of the counseling service at the Disablement Services Centre in Stanmore. In the first of these,9 which evaluated the emotional effects of limb amputation on 100 patients who attended counseling sessions after amputation, confidential records were kept of the points raised spontaneously by patients during the course of the sessions. These records were used to assess the emotional impact. We concluded, as did Dougherty,8 that individuals who had lost limbs as a result of trauma or tumor and those with upper limb amputations appeared to be the most vulnerable to emotional disruption. In addition, we found that the main emotional impact of amputation may emerge some months after surgery. The second study confirmed some of these findings with the use of standardized assessment of emotional distress.10
The first purpose of the current studies was to replicate the review of the problems presented by patients with different kinds and causes of amputation (lower or upper limb; proximal or distal, trauma or illness related), to see if the original pattern of emotional disruption is consistent across cohorts of patients. Second, the hypothesis that patients are more likely to notice the emotional impact of the amputation, and thus wish to engage in counseling some months after surgery, was tested by inviting clients who had recently experienced amputation to attend counseling 6 months after amputation and monitoring the numbers who accepted.
This study covers an assessment of an additional 55 patients who were counseled at the Centre after amputation that is similar to that of the first study9 and compares the results with those previously reported.
Between 1999 and 2002, 87 patients were seen for counseling. Of these, 70 were amputees, and the rest were relatives of amputees, people with congenital deficiencies, and patients seen before amputation. Of the 70 amputees, those who raised only practical issues numbered 15 (21%), leaving 55 (79%) with emotional problems. The current study relates to those 55 patients.
Of the study participants, 35 were men (64%) and 20 women (36%). The mean age was 53 years (range, 21–91 years). Forty (73%) had lower limb amputations, and 23 (42%) had vascular illness. The remainder had their amputations because of trauma, tumors, or infection. In the earlier studies, which covered 100 amputees, 58% of the participants were men; the group had a mean age of 57 years; 86% had lower limb amputations; and 56% of the participants had vascular illness. Although in the case of site and cause of amputation, the percentage difference between the two studies is 13 and 14 points, respectively, the components of the samples are broadly similar between the two studies.
Table 1 shows the number of patients who raised each main emotional issue and the average number of citings per patient; the corresponding figures from the earlier study covering 100 patients are shown for comparison.
Of the 55 patients with emotional problems (Table 2), 24 (44%) returned for additional counseling after the first session, compared with 37% in the earlier studies. In the current study, no patient who raised only practical issues returned for additional counseling, whereas the earlier sample showed a figure of 6%.
CAUSE OF AMPUTATION
The causes of amputation remained broadly the same in the two studies. The percentages of patients with tumor who returned were the highest, although both samples were small. The current study had a high proportion of patients who had experienced trauma (47% of the total, compared with 32% in the earlier study), but the percentages returning for additional counseling were close: 50% and 45%, respectively. The percentage return for those with vascular illness remained constant at 30%, the lowest figure in each study. Overall, the pattern of percentage returns was similar in both studies.
SITE OF AMPUTATION
In the current study sample, patients with upper limb amputations represented 27% of the total 55 amputees, compared with 14% in the original 100. However, the percentage of patients with upper limb amputation who returned for additional counseling was similar in both studies (40% compared with 43% in Study 1), suggesting a similar need in the current cohort. The number of returning patients who had lost one leg was higher in the current study (51% compared with 37%) and exceeded the percentage of those who had lost upper limbs. There were no patients in the current study who had lost both legs, so a comparison cannot be made.
TIME SINCE AMPUTATION
The samples in the current study for those seeking counseling after 2 years were so small as to give no reliable result. However, the percentage of patients who returned within 2 years of surgery showed a similar pattern in each study, with a higher percentage of patients returning during the 6-month to 2-year period than during the first 6 months.
Here the two studies show different patterns: the slight preponderance in the earlier study in the percentage of patients younger than 31 years who returned is replaced in the current study by the percentage of patients in the 31- to 59-year age group.
The figures on gender show a higher proportion of women returning in both studies, although to a greater extent in the current study.
STUDY B: SIX MONTHS FOLLOW-UP
The two previously published studies relating to the emotional impact of amputation9,10 found, among other results, that there was a strong indication that the main emotional impact on amputees occurred between 6 months and 2 years after surgery. This was confirmed by the results of the study reported above. Additional study was undertaken to see what proportions of patients with which levels and causes of amputation would respond to an invitation to attend counseling about 6 months after surgery.
PATIENTS AND MATERIALS
The clinic lists of patients who made their first visit to the Disablement Services Centre at Stanmore were scrutinized. Thirty patients were identified whose amputations had occurred 6 to 24 months previously and who had no other surgical needs. Letters were sent to these 30 patients about 6 months after their first visit to the Centre, drawing attention to the counseling service and enclosing an application form for a counseling session if the patient wished to take advantage of it. An additional assessment was made of the patients who fell within the initial field but who had already been counseled when the date for follow-up arrived. Three of these fell within the 6-month to 2-year period after amputation, and an additional two patients came for counseling after 5 months. Thus, the total sample numbered 35.
Of these 35 patients, 25 were men and 10 women. All but one had lower limb amputations. The only patient with upper limb amputation had lost fingers. The average age was 68 years. About two thirds of the amputations resulted from vascular illness, including diabetes. The average period since amputation was 8.6 months, and the range 5 to 18 months.
Of the 35 patients meeting the criteria, 5 (14%) presented spontaneously and 5 (14%) responded to the invitation, with 2 declining and 3 accepting. This gave a total uptake rate of 8 of 35 (23%), all of whom had lower limb amputations. Of the patients with diabetes and vascular disease, four (17%) agreed to counseling, compared with three (75%) of the trauma group (which includes a patient with congenital deformity, for whom adapting to an amputation to improve a dysfunctional limb was perceived as more difficult than predicted). No patients who had experienced tumor presented themselves, and the remaining patient had experienced intractable infection. The mean time from amputation was 9 months, with a range of 5 to 18 months, and the average age was 63 years (range, 22–85 years). All but one of the patients were male. Inspection of the record of subjects raised by those who were counseled shows no clear pattern, although three patients expressed concern about the prosthesis. Three patients reported loneliness/depression and a need for alternative activities. Two had phantom pain. The one patient younger than 25 years had a number of problems, including body image disruption and employment.
The pattern of subjects raised by the 55 amputees during counseling sessions is broadly similar to that relating to the earlier study9 of 100 amputees, thus confirming that depression (including distress, sleeplessness, and anxiety, although not necessarily at clinical levels) is by far the most common problem. In the current study, the percentage of patients raising this issue was higher than in the earlier study (53% compared with 42%) but shows that just more than half of amputees who experienced some emotional problems raised this issue. Thus, it can be concluded that depression, although significant, is by no means an inevitable corollary of amputation, in contrast to the bereavement hypothesis.2 Body image was once more the second significant issue, experienced by 31% of the sample but again reported by a minority of patients.
The order of the number of patients raising old problems and those experiencing difficulties with relatives and friends was reversed in the later study, but the difference was not significant. As in the earlier study, the comparatively few patients who raised the subjects of relationships/sex and anger/resentment cited these issues comparatively frequently, thus indicating that although less common, these problems may be more persistent.
On the premise that patients who return for additional counseling are the more emotionally vulnerable, the current study confirms the finding of Study 1 that patients who lost their limbs through tumor are the most affected, although in both studies the sample of patients with tumor was small. The next most vulnerable group, in terms of cause of amputation, was the trauma group. The proportion of patients who had experienced trauma in the current study was comparatively large, but the closeness of the percentage of patients returning for additional counseling in this category in both studies seems to confirm a return rate of approximately 45 to 50%. The percentage of patients with dysvascular disease who returned was constant at 30% in both studies, indicating that patients whose amputations are caused by chronic illness are less emotionally vulnerable.
The preponderance of patients with upper limb amputation who returned for counseling that was apparent in Study 1 was not replicated in the current study, despite that there was a higher proportion of patients with arm amputations in the current study than patients with lower limb amputations.
This study supported the earlier conclusion that emotional distress in amputees occurs most frequently in the period between 6 months and 2 years after surgery by again showing a 50% return rate in this time span. Unfortunately the number of amputees in the current study who were counseled more than 2 years after amputation was too small to enable a valid conclusion to be drawn. The figures on the age of patients also make it difficult to draw conclusions. The later study shows an increased preponderance of women returning for additional counseling.
In general, the percentages of patients who returned for additional counseling were higher in the later study. This may possibly reflect a greater awareness of, and confidence in, counseling facilities.
The results of this study give some support to the earlier finding that the period between 6 and 24 months is relevant to the emotional impact of amputation and, thus, to the need for counseling. The patients within this period showed no consistent pattern of problems, although mood difficulties were present in about half the sample, as were prosthetic problems. The patient who was most affected by body image disruption was in the youngest age range.
However, the uptake rate was less than expected, and the critical period hypothesis might have been more convincingly demonstrated but for the following factors:
- The study concentrated largely on the lower end of the critical period (ie, patients were approached after roughly 6 months, rather than spread across the 6- to 24-month range).
- Earlier studies showed patients with upper limb amputations to be the more emotionally vulnerable, but only one such patient was in the current sample (and she had lost only fingers), reducing the chances of response from this group.
- Most patients in the sample of 35 were elderly people with vascular illness, a group who previously were found9 to be in less need of counseling than were other diagnostic groups.
- The earlier studies related to people who had opted for counseling and then presented emotional problems, whereas the current study applied to all patients attending the Centre. It could be argued that a proportion of these patients were inappropriately targeted and therefore less likely to respond.
This study may be regarded as a first attempt to assess the usefulness of inviting amputees for counseling within the previously identified period of 6 to 24 months after surgery. It probably would have been more satisfactory to have raised again the opportunity of counseling closer to the 12- or 24-month period and to have concentrated on the previously identified more vulnerable groups of patients. This was not done initially because the study, intended to establish whether the hypothesis that patients with upper limb amputations and those who had experienced trauma or tumor were more distressed, was substantiated. However, additional studies repeating the invitation at 6-month intervals throughout the first 2 years could be targeted more efficiently.
From all the work undertaken so far, the general conclusion is that after amputation, although a significant number of patients may benefit from a counseling service, difficulties with adjustment are by no means universal. The most vulnerable groups seem to be younger (younger than 60 years) and those with traumatic amputations and tumors. Where services are limited, the results of our studies would indicate that such patients consistently are the most likely to benefit if the opportunity for counseling is available at the appropriate postoperative period.