Losses Beyond the Limb

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By Phil Stevens, MEd, CPO, FAAOP
An analysis of the co-morbidities and challenges associated with upper-limb loss.

In working with patients who have suffered an upper-limb amputation, prosthetists must be aware that the limb loss represents only one of several morbidities with which the individual will need to contend. Other frequently encountered challenges include phantom-limb pain; pain within the residual limb; additional pain symptoms affecting the neck, shoulders, back, and sound-side limb; overuse syndromes; elevated anxiety rates and depression; and a compromised quality of life. This article will introduce and discuss these challenges as identified and reported in current literature.

Pain

Physical pain following the amputation of a limb is hardly surprising. Yet pain is a complex phenomenon with many contributing factors. Is it reported with greater severity or frequency following an upper- or lower-limb amputation? In the case of upper-limb amputation, the greater loss of sensory nerves might lead to greater pain. On the other hand, in the case of lower-limb amputation, the residual limb must regularly bear the weight of the body through a socket interface. This question has received scrutiny from a team of Australian researchers who surveyed individuals with upper- and lower-limb amputations who attended their outpatient amputee clinic.1

Table 1

Table 1: Pain Following Upper-Limb vs Lower-Limb Amputation

Their findings suggest that post-amputation pain, across its many forms, represents a greater challenge to those with upper-limb loss (Table 1). For example, among the 39 lower-limb amputees who completed the survey, 14 (36 percent) described themselves as pain free. By contrast, only one of the 17 upper-limb amputees who completed the survey (six percent) made a similar assertion. Ultimately, the authors reported that individuals with upper-limb amputations were 1.5 times more likely to experience persistent post-amputation pain. In addition, the severity and frequency of this pain appeared to be much greater with upper-limb loss. Sixty-four percent of upper-limb amputees described their pain as "moderate" to "severe," with the remaining 35 percent reporting "no pain" or "mild pain." In lower-limb amputees, this trend was reversed, with 28 percent describing their pain as "moderate" to "severe" and 72 percent reporting "mild" to "no pain." All but one upper-limb amputee reported pain frequency of "most days" to "every day" (94 percent). By contrast, this frequency of pain symptoms was reported by only 33 percent of lower-limb amputees, with 68 percent reporting their pain frequency as "once a week" to "no pain." Accordingly, the researchers found that upper-limb amputees were 2.3 times more likely to experience moderate to severe pain, and 2.8 times more likely to suffer constant pain than their peers with lower-limb amputations.

Coping with Phantoms

Reporting on findings from a much larger cohort that completed mailed surveys, Hanley et al. confirmed an extremely high pain prevalence of 90 percent among 104 respondents with upper-limb loss.2 In addition, participants were asked to identify both the types and locations of their pain syndromes, the intensity of their pain, and the level of interference their pain caused, as well as disability days and temporal patterns. Consistent with previous studies, respondents identified phantom pain as the most prevalent pain (79 percent), followed closely by residual-limb pain (71 percent). Also consistent with other reports, non-painful phantom-limb sensations were cited by an even greater percentage of respondents (81 percent). Pain in other body sites, including the neck, back, and sound-side limb, were reported much less frequently and will be discussed later (Table 2).

Table 2

Table 2: Pain Prevalence by Location and Type

While phantom-limb pain was the most frequently reported pain type and its intensity was rated slightly higher, on average, than the other pain types, it was rated the lowest in terms of "pain interference," or "the degree to which pain has interfered with daily activities in the past three months." These findings are consistent with data observed by Desmond et al. in a separate investigation using a similar mailed survey.3 Once again, the prevalence of phantom-limb pain was quite high, reported by 64 percent of respondents. However, given the opportunity to rate their pain intensity on an ordinal scale, the majority of participants (52 percent) identified their pain as "discomforting," or the slightly more severe "distressing" (20 percent), and only 7 percent and 8 percent, respectively, identified pain intensities of "horrible" or "excruciating." Similarly, the lifestyle interference of phantom pain was most frequently described as "not at all" (25 percent) or "a little bit" (38 percent). So although respondents reported experiencing phantom pain quite frequently, its intensity is generally low and seldom interferes with daily activities.

Pain from Within

While phantom pain has consistently been identified as the most frequent pain type among individuals with upper-limb amputations, it is generally followed closely by high frequencies of reported pain in the residual limb, ranging from 48-74 percent.2-4 The reported severity and frequency of residual-limb pain seem to closely mirror phantom-limb pain with only slightly elevated reports of lifestyle interference.2-3 The relationship between phantom pain and residual-limb pain does not end there. Only one-third of the few upper-limb amputees who do not report phantom pain reported residual-limb pain. In contrast, nearly 85 percent of those who reported phantom pain also reported residual-limb pain.3 This relationship has led to speculation that the two pain experiences may be intertwined; pain in the residual limb may be triggering phantom pain, or upper-limb amputees may be unable to differentiate between the two pain types.

Pain from Without

While phantom pain and residual-limb pain are the most consistently reported pain types, pain outside of the affected extremity has also been reported with some regularity (Table 2). Back and neck pain have been reported by roughly 50 percent of the individuals with upper-limb amputations. Further, pain in the sound-side limb, including the shoulder, elbow, wrist, and hand, has been cited by roughly one-third of pain survey participants.2,4 Importantly, while pain in the non-amputated limb is the least frequently identified pain location, it has been associated with the highest "pain interference" values, suggesting that this type of pain is more likely to disrupt daily activities.2 Likewise, pain in the non-amputated limb was most commonly reported to have kept respondents from their usual activities, bringing about nearly twice as many "disability days" as the more common phantom pain.2 Accordingly, while pain in the non-amputated limb appears to be less commonly experienced than other types of pain, for those who do contend with it, the impact can be much more substantial.

The Costs of Compensations

In the presence of upper-limb loss, patients must adapt compensatory strategies to continue to meet the demands of daily life. These may include engaging in tasks with prostheses or augmented use of the remaining limb. The impact of these compensation strategies on the body is often observed in clinical practice; however, the phenomenon is under-investigated in published literature. In their report, Jones and Davidson indicate that half of all survey respondents had problems with the remaining upper limb.5 These problems included epicondylitis, shoulder impingement, tenosynovitis, osteoarthritis, repetitive strain injuries, carpal tunnel syndrome, trigger finger, injuries from accident, and other non-specified problems. Their findings are echoed by more recent studies. Dudkiewicz et al. report that 20 percent of their study subjects had contralateral hand problems.6 Datta et al. report "paraesthesia suggestive of carpal tunnel syndrome" in 27 percent of their observed upper-limb amputees.4 The collective conclusion is that the increased demands placed on the remaining limb following upper-limb amputation often precipitate overuse injuries.

Depression, Anxiety, and Coping Strategies

In addition to the physical findings reviewed thus far, it is important to remember that the psychosocial adaptations that accompany upper-limb amputations are quite different from those experienced by individuals coping with lower-limb amputations. There are considerable differences in the functional implications, the visibility or concealability of the amputation and/or prosthesis, and in the typical circumstances surrounding the amputation event.8 Generally, upper-limb amputations are experienced by otherwise healthy, younger men and are the result of a traumatic incident. Recognizing these important differences, initial efforts have been made to better understand questions of coping, distress, and psychosocial adjustments among upper-limb amputees.8

Reporting on mailed responses from 138 males with traumatic upper-limb amputations, Desmond reported that nearly one-third of questionnaire participants met the criteria for possible clinical depression, a prevalence nearly three times higher than those reported by a sampling of the general population.8 This finding is fairly consistent with reports from an earlier investigation by Darnall et al. in which "significant depressive symptom" rates among community-dwelling individuals with predominantly traumatic upper-limb amputations were reported at 32 percent.9 Fortunately, for the majority of Desmond's survey participants, their responses were suggestive of only "mild" depression.

Similarly, the prevalence of possible clinical anxiety was reported at 35.5 percent although again, the majority placed their responses in the "mild" anxiety levels.8 This prevalence is consistent with that observed in the general population.8

In addition, Desmond attempted to quantify the extent to which participants employed the various coping strategies of "problem solving," "seeking social support," and "avoidance." These responses were compared against depression and anxiety scores to determine if the prevalence of a given coping strategy was predictive of depression and anxiety. This led to the following observations: Higher levels of avoidance as a coping strategy were associated with higher levels of anxiety and reported depression, while greater use of problem solving as a coping strategy was associated with lower reported depressive symptoms.8

In summary, the unique characteristics of upper-limb amputees and the events surrounding their amputations appear to place them at a greater risk for clinical depression. Those who rely on avoidance as a primary coping strategy appear to be at the greatest risk.

The Collective Toll on Life Quality and Satisfaction

Given the frequency and impact of the various pain types and other co-morbidities that patients with upper-limb loss experience, questions naturally arise regarding overall satisfaction and quality of life. In the most recent such evaluation, Norwegian researchers examined self-reported satisfaction with life values collected from a cohort of their countrymen with upper-limb amputations and a second cohort of healthy controls.10 Their survey instrument was the Satisfaction with Life Scale (SWLS), which has been described as "a global assessment of a person's quality of life according to his chosen criteria...based on a comparison with a standard each individual sets for him or herself," and is not externally imposed.10

In addition to the SWLS scores, researchers collected additional information on such things as physical activity, the occurrence of co-morbidities, gender, age, marital status, educational level, gross yearly income, and occupational status. This data allowed researchers to determine if the presence or absence of certain factors mediated lower life-satisfaction reports.

Their research found that individuals with upper-limb amputation reported significantly lower life-satisfaction values than the healthy control group. Additionally, the researchers observed that life satisfaction was largely affected by two factors. The first was the occurrence of short- or long-term complications noted by the amputees as "other limb trauma." From questionnaire comments, these included many of the challenges discussed earlier in this article, such as residual-limb complaints, various overuse ailments on the non-amputated side, and the presence of other traumas concurrent with the amputation such as nerve damage and extensive scarring.10 This observation is supported by the work of Hanley et al. described earlier in this article. In researching the pain considerations in this population, the Norwegian investigators found that self-reported quality of life scores, as measured by the SWLS, were significantly lower for individuals experiencing phantom-limb pain, residual-limb pain, and pain in the back, neck, or non-amputated-limb, as compared to those without any pain.2

The second factor that appeared to affect SWLS scores in the Norwegian investigation were changes in occupational status and their effects on gross yearly income. The reality of upper-limb loss leading to modified employment is also supported by previous research observations. For example, Datta et al. observed that while 80 percent of upper-limb amputees became employed at some stage following their limb loss, the vast majority of these individuals had to change their occupation to do so.4 These changes in occupational status and their consequent effects on income appear to play a role in reported life-satisfaction values.

Summary

The cumulative effects of each of these variables on the health and well-being of patients who have experienced upper limb-loss can be quite striking. In addition to the most immediate loss of a hand and the associated implications to function and identity, an individual with an upper-limb amputation will often contend with secondary pain complications including phantom pains and sensations, pain in the residual limb, and pain in the back, shoulders, neck, and remaining upper limb. Daily existence may be further challenged by the presence of overuse injuries in the sound-side limb and an increased likelihood of depression. These culminate in reduced life-satisfaction values, particularly among those dealing with pain and overuse issues and those who have experienced a disappointing change in vocation. An appreciation of these challenges can assist the prosthetist in connecting with patients who are challenged not only with upper-limb loss, but also a host of additional factors.

Phil Stevens, MEd, CPO, FAAOP, is in clinical practice with Hanger Prosthetics & Orthotics, Salt Lake City, Utah. He can be reached at

References

  1. Davidson, J. H., K. E. Khor, and L. E. Jones. 2010. A cross-sectional study of post-amputation pain in upper and lower limb amputees, experience of a tertiary referral amputee clinic. Disability and Rehabilitation 32(22): 1855-62.
  2. Hanley, M. A., D. M. Ehde, M. Jensen, J. Czerniecki, D. G. Smith, and L. R. Robinson. 2009. Chronic pain associated with upper-limb loss. American Journal of Physical Medicine & Rehabilitation 88(9):742-54.
  3. Desmond, D. M., and M. MacLachlan. 2010. Prevalence and characteristics of phantom limb pain and residual limb pain in the long term after upper limb amputation. International Journal of Rehabilitation Research 33:279-82.
  4. Datta, D., K. Selvarajah, and N. Davey. 2004. Functional outcomes of patients with proximal upper limb deficiency—acquired and congenital. Clinical Rehabilitation 18:172-77.
  5. Jones, L. E. and J. H. Davidson. 1999. Save that arm: a study of problems in the remaining arm of unilateral upper limb amputees. Prosthetics and Orthotics International 3:55-8.
  6. Dudkiewicz, I., R. Gabrielov, I. Seiv-Ner, G. Zelig, and M. Heim. 2004. Evaluation of prosthetic usage in upper limb amputees. Disability and Rehabilitation 26(1):60-3.
  7. Demet, K., N. Martinet, F. Guillemin, J. Paysant, and J. M. André. 2003. Health related quality of life and related factors in 539 persons with amputation of upper and lower limb. Disability and Rehabilitation 25(9):480-6.
  8. Desmond, D. M., 2007. Coping, affective distress, and psychosocial adjustment among people with traumatic upper limb amputations. Journal of Psychosomatic Research 62:15-21.
  9. Darnall, B. D., P. Ephraim, S. T. Wegener, T. Dillingham, L. Pezzin, P. Rossbach, and E. J. MacKenzie. 2005. Depressive symptoms and mental health service utilization among persons with limb loss: results of a national survey. Archives of Physical Medicine and Rehabilitation 86:650-8.
  10. Ostlie, K., P. Magnus, O. H. Skjeldal, B. Garfelt, and K. Tambs. 2010. Mental health and satisfaction with life among upper limb amputees: a Norwegian population-based survey comparing adult acquired major upper limb amputees with a control group. Disability and Rehabilitation 33:1594-607.