Psychological Adaptation to Limb Amputation

Lakeya S. McGill MA, PhD

Ellen J. MacKenzie MSc, PhD

Stephen T. Wegener MA, PhD

None of the following authors or any immediate family member has received anything of value from or has stock or stock options held in a commercial company or institution related directly or indirectly to the subject of this chapter: Dr. McGill, Dr. MacKenzie, and Dr. Wegener.

^aPerson-first language (eg, individuals with limb loss or amputation) rather than identity-first language (eg, amputees) was used in this chapter; however, both uses are appropriate, with individuals having various preferences for language use. When working with individuals directly, use the language they use to describe themselves.

ABSTRACT

How individuals adapt psychologically to the challenges of limb loss varies and depends on several interrelated factors associated with the individual and their environment. Although many individuals adapt successfully, others struggle with symptoms of anxiety, posttraumatic stress, and depression. Early management of these symptoms using a patient-centered, collaborative care approach to care is critical for successful, long-term outcomes. Two approaches are particularly helpful in promoting patient activation: (1) cognitive, behavioral-based self-management programs and (2) peer support and visitation programs. It is helpful for the surgeon and the treatment team to be aware of recommended strategies for promoting an integrated model of care delivery that addresses both physical and psychological symptoms associated with amputation.

Introduction

The amputation of a limb, whether caused by a traumatic event or chronic local or systemic disease, is a life-altering event. Limb loss invariably affects function and everyday activities. How individuals adapt psychologically to the challenges of limb loss varies and depends on several interrelated factors associated with personal and family resources, coping styles, self-efficacy, resiliency, as well as barriers and facilitators present in social, economic, and physical environments. Most individuals adapt effectively as symptoms of emotional distress, negative body image, and social stigma dissipate across time and functional accommodations occur. However, adaptation is more challenging for some individuals; symptoms linger, impeding recovery and successful reintegration into everyday life. For some, more severe psychological disorders, including anxiety, posttraumatic stress disorder (PTSD), and major depressive disorder, emerge in the months or years after amputation.

The behavioral health consequences of limb loss often are underappreciated when caring for individuals with limb loss.^a Attention often is focused on surgical management, prosthetic fitting, and physical rehabilitation, without acknowledging and treating the psychological and social needs of the patient and their family. Increasingly, surgical specialties are acknowledging that the traditional biomedical model of disease and disease management is inadequate and must be replaced with a biopsychosocial model, wherein psychological and social factors are addressed together with medical factors to improve patient outcomes and quality of life.¹ It also is becoming increasingly clear that a team approach for caring for individuals with limb loss is critical, and both the patient and the family must be integral members of the team.²^,³

It is important to review current understanding of the emotional reactions experienced following amputation and the extent to which these reactions evolve into psychological conditions that impede long-term recovery. The benefits of a patientcentered, collaborative care approach to the early treatment of patients undergoing amputation are discussed, and recommendations are provided regarding the role of the surgeon and the treatment team in addressing these adaptation issues.

Common Reactions and Adaptations to Amputation

Data have not supported the assumption that individuals have universal responses to health crises, such as amputation. Stage theory, which exemplifies this concept, predicts that individuals will respond to a crisis or
a loss in specific and predictable ways across time and eventually accept or resolve the emotional crisis.⁴ Earlier models of bereavement described successive stages of denial, anger, bargaining, depression, and eventual acceptance. However, more contemporary models of bereavement, such as the Dual Process Model of Coping with Bereavement, hypothesize that grief is a nonlinear, active process unique to each individual and influenced by external factors, such as ongoing stressors and level of support.⁵ Similarly, Belon and Vigoda⁶ suggested that adaptation after limb loss may involve a more dynamic process, with emotional and coping responses evolving as the individual moves through the process. In addition, traditional models of adaptation do not accommodate the fact that individuals may identify benefits and experience positive growth after physical trauma.⁷ Recent literature emphasizes models that conceptualize coping as a transactional process in which the individual’s cognitive and behavioral responses interact with social and environmental factors.

From a clinical perspective, it is useful to think of adaptation to an amputation as a process occurring during four phases of care: the preoperative phase (most relevant to those who are losing a limb because of systemic disease), the immediate postoperative phase, the early rehabilitation phase (both inpatient and outpatient), and the longer term adaptation and reintegration phase.⁸ Viewing adaptation as a process that occurs across these four phases highlights some of the more critical issues that arise at each point in time and how the health care team may respond to promote effective adaptation. Table 1 describes these treatment phases and lists the emotional and coping responses a patient may experience. It also provides suggestions on which steps clinicians may take to address potential concerns. Notably, a paucity of data exists to document specific reactions during each treatment phase, and reactions vary tremendously among individuals, with adaptation varying and occurring across the treatment continuum.

It is most important to recognize that if negative emotions and maladaptive responses are not recognized and managed appropriately early in the process, clinical symptoms of anxiety, posttraumatic stress, and depression may result, potentially having a significant effect on long-term outcomes and quality of life.

Prevalence of Anxiety, PTSD, and Depression

The literature on the prevalence of anxiety, PTSD, and depression specifically associated with limb loss is limited, and direct comparison across studies is difficult because of variation in the instruments and methods used, the composition of the study population (eg, differences in demographics, whether the amputation was related to a traumatic event or systemic disease, the circumstances of the trauma, the type and level of amputation, whether the population consists of civilians, veterans, or active-duty service members), and the timing of the assessment after amputation. In addition, most studies are cross-sectional, making it difficult to assess changes in prevalence during the life course of an individual with limb loss and evaluate long-term trajectories of recovery or deterioration. Nevertheless, the preponderance of evidence indicates that rates of psychological distress among individuals with limb loss are higher than those in the general population, calling for a coordinated approach to address the multifactorial needs of patients and their families early in the recovery process. Anxiety, PTSD, and depression are discussed individually, but these symptoms often co-occur among individuals with limb loss.

Anxiety

Generalized anxiety symptoms are common after trauma-related amputations and limb loss resulting from systemic disease. In a systematic review of studies of anxiety and depression following trauma-related limb amputation, Mckechnie and John⁹ found rates of generalized anxiety ranging from 25% to 57% across six studies. While an earlier review based primarily on cross-sectional studies of lower limb amputations concluded that elevated symptoms of anxiety often subside after the first year, with levels falling to those found in the general population,⁸ a subsequent longitudinal study of all-cause lower limb amputations¹⁰ refuted these conclusions. Singh et al¹¹ found that although symptoms of anxiety were generally resolved during inpatient rehabilitation, the prevalence of anxiety remained elevated 2 to 3 years after the amputation and was more similar to levels found at the time of admission to rehabilitation (18% at 2 to 3 years compared with 24% at admission). McCarthy et al¹⁰ found similar results in a study of outcomes after 569 lower limb injuries (27% of which eventually underwent amputation); the percentage of those with moderate to severe symptoms of anxiety remained elevated throughout a 2-year follow-up (35%, 30%, 27%, and 29% at 3, 6, 12, and 24 months, respectively). In a more recent study, Melcer et al¹² conducted a retrospective analysis of military and Veterans Administration health data for 440 patients with combat-related lower limb injuries. These included unilateral amputations within 90 days postinjury (early amputation), unilateral amputations more than 90 days postinjury (late amputation), and leg-threatening injuries without amputation (limb salvage). Over the 4 year post-injury observation period, 40% of those with early amputation, 54% of those with late amputation, and 40% of those with limb salvage had been diagnosed with an anxiety disorder based on the International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM). Individuals with limb salvage had a higher 4-year prevalence of anxiety compared with those with early amputation; however, the prevalence significantly decreased after 1 year for all three groups. Similarly, Melcer et al¹³ found that the prevalence of anxiety (based on ICD-9-CM criteria) significantly decreased 5 years postinjury in 318 patients with combat-related upper limb injuries and amputations.

TABLE 1 Common Reactions and Responses to Limb Amputations

Phase	Common Reactions	Role of Surgeon and Treatment Team
Preoperative	A sense of relief that a solution exists for the problem (especially among patients who are dysvascular) Anxiety about effects on function, loss of independence, and change in appearance Early stages of anticipatory grief	Involve surgeon in preparing the patient and family for surgery; a clear explanation of the reason for the amputation and a discussion of alternatives is important Present amputation as a desirable option, not as a last resort Involve patient and family in treatment decision wherever possible Provide access to reliable sources of information about the procedure and the rehabilitation process Link patient and family to resources for individuals with limb loss (eg, the Amputee Coalition of America) Arrange for consultation with behavioral health clinicians, prosthetists, and rehabilitation team members
Immediate postoperative	A range of reactions is expected, from emotional numbness and denial of emotions to feelings of loss and acute distress to optimism and hopefulness about the future A sense of relief caused by surviving a traumatic event or decreased pain	Proactively provide opportunity for the discussion of psychosocial issues Acknowledge that a wide range of emotional reactions is appropriate Support the decision that led to amputation Treat pain early after the surgery Provide a realistic timetable for recovery Involve the patient and the family in discussions about the next steps in the process of recovery Provide referral to a peer visitor program while in the hospital Support follow-through on patient and family connection to resources for individuals with limb loss (eg, the Amputee Coalition of America)
Early rehabilitation	Emotional reactions evolve as the individual confronts functional limitations A wide range of reactions is possible: grief, anxiety regarding future, loss, depression, denial and minimization of change New doubts about the future emerge Maladaptive coping responses (eg, avoidance of social interaction, catastrophic thinking)	Employ early fitting of a prosthesis and mobilization as appropriate Use a support team approach with prosthetists, physical therapists or occupational therapists, social workers, vocational counselors, and psychologists Screen for early signs of depression, anxiety, and PTSD and refer to behavioral health services as needed Engage in self-management training to decrease catastrophic thinking and improve self-efficacy and coping strategies
Long-term adaptation and reintegration into society	Continued adaptation with most returning to baseline emotional health and some experiencing posttraumatic growth Continued elevated risk for depression and anxiety disorders Recognition that adaptation to a new normal will be challenging Concerns regarding employment, social acceptance, and sexual function Financial concerns	Provide ongoing group support for the patient and family members Support connection to the limb loss community (eg, the Amputee Coalition of America) Continue to monitor for maladaptive coping responses and mood disorders Refer to behavioral health services for psychotherapy and pharmacotherapy as needed
PTSD = posttraumatic stress disorder

The literature is mixed regarding the prevalence and trajectory for anxiety symptoms, with some studies reporting rates similar to those of the general population 1 year postinjury and other studies reporting elevated rates 2 to 3 years postinjury. More recent studies suggest that early amputation may contribute to better recovery than limb salvage, as individuals with limb salvage have higher rates of anxiety up to 4 and 5 years postinjury compared with those with early amputation. However, rates of anxiety significantly decreased after 1 year, which is consistent with some previous studies. Additional research is needed to better understand anxiety in this population. Nevertheless, findings consistently show anxiety is a common issue that should be addressed to promote optimal recovery and functional outcomes.

Posttraumatic Stress Disorder

Acute stress reaction often is—although not always—associated with the subsequent development of PTSD, with one study reporting that 78% of individuals with acute stress disorder after a motor vehicle crash subsequently met criteria for PTSD within 6 months.¹⁴ PTSD is a debilitating disorder characterized by re-experiencing the original trauma (eg, flashbacks, intrusive memories); the avoidance of thoughts, activities, and people associated with the trauma (eg, feeling emotionally numb about the traumatic event); negative alterations in cognitions and mood (eg, exaggerated self-blame about the cause of the traumatic event); and hyperarousal (eg, irritability, difficulty concentrating, insomnia). A diagnosis of PTSD can only be made if these symptoms persist for more than 1 month. The adverse
consequences of PTSD include high rates of suicide, substance abuse, violence, an inability to maintain intimate and parental relationships, physical illness, and premature mortality.¹⁵ PTSD is commonly present (83% to 90% of the time) with other psychological disorders, including substance use, depression, and panic disorder.¹⁶

The rates of PTSD after amputation caused by systemic disease appear to be low, most likely because these individuals are more prepared for the surgery and its consequences.¹⁷ However, high rates of PTSD after physical trauma (both civilian and combat related) are well documented in the literature.¹⁸^,¹⁹^,²⁰ Relatively few studies have focused specifically on the prevalence of PTSD associated with musculoskeletal trauma,²¹^,²² with even fewer on the prevalence of PTSD after limb amputation.²³^,²⁴^,²⁵

Studies by Melcer et al²⁴ and Doukas et al²⁵ are useful in this regard. Both groups of researchers examined the rates of PTSD among service members who sustained major lower limb trauma in Operation Iraqi Freedom, Operation Enduring Freedom, or Operation New Dawn. Both studies reported high overall rates of PTSD. Doukas et al²⁵ retrospectively examined outcomes in a cohort of 324 service members deployed to Afghanistan or Iraq who sustained a traumatic amputation or limb salvage. At an average of 38 months after injury, 18% screened positive for PTSD using the military version of the Posttraumatic Stress Disorder Checklist (PCL-M)²⁶ and the scoring criteria proposed by Hoge et al.²⁷ Interestingly, participants with an amputation had a significantly lower likelihood of PTSD compared with those whose limbs were salvaged (12% among patients with amputation versus 25% among patients with limb salvage). Melcer et al²⁴ retrospectively examined the military health records of patients who sustained lower extremity injuries: 587 underwent early amputation during the first 90 days after injury, 84 patients had a late amputation more than 90 days after injury, and 117 patients were treated for leg-threatening injuries without amputation. The results of Melcer et al²⁴ were similar to those of Doukas et al.²⁵ The 2-year prevalence of a PTSD diagnosis (recorded in the medical record and coded based on the ICD-9-CM criteria) was 19% for early amputations and 30% for limb salvage. Melcer et al²⁴ also found that patients with late amputations had significantly higher rates of PTSD (33%) compared with those treated with either early amputations or limb salvage. In a follow-up study, the 4-year prevalence of a PTSD diagnosis (based on ICD-9-CM criteria) was 49% for early amputation, 58% for late amputation, and 51% for limb salvage.¹² Although there were no differences between groups, PTSD rates significantly increased over time, particularly during the second year after injury.

Most research has focused on lower extremity injuries, with few studies examining PTSD specifically for upper extremity injuries and amputations. In a follow-up to the study by Doukas et al, Mitchell et al²⁸ compared outcomes for 155 service members who sustained an upper extremity amputation or limb salvage. Similar to results for lower limb injuries, 19% screened positive for PTSD (based on the PCL-M) at an average of 40 months postinjury; however, PTSD rates were similar across groups, with 19.2%, 21.2%, and 16.7% screening positive for PTSD for patients with unilateral salvage, unilateral amputation, and bilateral amputation, respectively. Melcer et al¹³ examined military and Veterans Administration health data for 318 service members with above-elbow amputation, below-elbow amputation, or arm injury without amputation. The 5-year prevalence for a PTSD diagnosis (based on the ICD-9-CM) was high, ranging from 52% to 58%, with no significant differences between the groups. PTSD also significantly increased across years, as the prevalence was 20% at 1 year after injury and 36% at 3 years after injury.

Earlier studies suggested that military patients who had early amputation may have had better outcomes compared with those with limb salvage or especially late amputation. More recent studies demonstrated no differences among these three groups for both upper and lower limb injuries among military patients; however, the rate of PTSD increased over time. In civilians, there is a dearth of high-quality longitudinal studies examining the rates of PTSD following amputation. More research is needed to understand how trends may be similar or different from the military population. Overall, PTSD is a significant issue for individuals with trauma-related injuries and amputations, with rates possibly increasing over time.

Depression

The American Psychiatric Association²⁹ defines depression as depressed mood or markedly diminished interest or pleasure in activities accompanied by substantial weight change, insomnia or hypersomnia, psychomotor agitation or retardation, loss of energy, feelings of worthlessness, diminished ability to concentrate, or recurrent thoughts of death that last for at least 2 weeks that interfere with the activities of daily living. Symptoms of depression are common immediately after limb amputation, with rates ranging from 29% to 41% for patients in rehabilitation.³⁰^,³¹^,³² In a prospective cohort study of 141 veterans and civilians, Roepke et al³³ found that 40% of patients who underwent dysvascular amputation had at least moderate depressive symptoms before surgery. At 6 weeks after surgery, the cohort had substantial improvement in depressive symptoms, especially among those with greater symptoms at baseline. Depressive symptoms were also generally stable at 4 and 12 months after surgery.

The literature is mixed in its findings about the longer term prevalence of depression and the development of a major depressive disorder among those living with limb loss.⁸ In one of the very few community surveys of individuals with limb loss, Darnall et al³⁴ found that the prevalence of significant depressive symptoms was 29%, a rate that is two to four times greater than that for the general population but similar to rates found for outpatients seeking care for chronic conditions. They found no association between prevalence and
recency of amputation. In their study, individuals with trauma-related amputations reported the highest levels of depressive symptomatology (46%) when compared with individuals with limb loss caused by dysvascular disease (38%) or cancer (16%).

In the aforementioned study by Melcer et al,¹² 39% of those with early amputation, 55% of those with late amputation, and 36% of those with limb salvage had been diagnosed with a mood disorder based on the ICD-9-CM over 4 years after injury. Mood disorders include a major depressive disorder and other psychologic conditions, such as persistent depressive disorder (formerly known as dysthymia) and bipolar disorder. Individuals with late amputation had a higher 4-year prevalence of mood disorder compared with those with early amputation and limb salvage; however, the prevalence significantly decreased after 1 year for all three groups. In another study examining outcomes in 318 patients with combat-related upper limb injuries and amputations (above and below elbow), Melcer et al¹³ found that the prevalence of mood disorder did not change significantly across postinjury years. There was also no difference in prevalence among individuals with amputation and limb salvage. Mitchell et al²⁸ compared outcomes for 155 service members who sustained an upper extremity amputation or limb salvage. Forty percent of the sample endorsed having depressive symptoms, and 12% screened positive for possible or probable depression at an average of 40 months after injury. There was no significant difference in rates of depression symptoms or possible diagnosis for patients with amputation and limb salvage.

In reviews of the literature on depression after trauma-related amputations, rates range from 20% to more than 50%, with variation in prevalence again related to the choice of instrument used to assess depression, the timing of the assessment, and the composition of the population surveyed.⁹^,²³ To better understand depression in this population, there is a need for more high-quality studies, particularly examining the longer term prevalence, including greater than 4 to 5 years postamputation. Nevertheless, depression symptoms are prevalent and should be addressed as a part of comprehensive patient care. Studies suggest that depression associated with non-trauma-related amputations may be more related to the underlying chronic condition and overall deterioration in health and function rather than the limb loss itself.³⁵ This finding suggests that individuals undergoing amputation related to diabetes or other chronic diseases may have very different support and counseling needs than those undergoing amputation because of trauma.³⁶

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