Art & science pain management
Phantom limb pain: a nursing perspective Virani A et al (2014) Phantom limb pain: a nursing perspective. Nursing Standard. 29, 1, 44-50. Date of submission: January 7 2014; date of acceptance: March 19 2014.
Abstract Phantom limb pain (PLP) is a neuropathic pain condition occurring after amputation of a limb. PLP affects amputees’ quality of life and results in loss of productivity and psychological distress. The origin of pain from a non-existing limb creates a challenging situation for both patients and nurses. It is imperative to provide patients and nurses with the knowledge that PLP is a real phenomenon that requires care and treatment. This knowledge will lead to reduced problems for patients by allowing them to talk about PLP and ask for help when needed. Understanding of this phenomenon will enable nurses to appreciate the unique features of this form of neuropathic pain and apply appropriate techniques to promote effective pain management. Performing accurate and frequent assessments to understand the unique characteristics of PLP, displaying a non-judgemental attitude towards patients and teaching throughout the peri-operative process are significant nursing interventions.
Authors Anila Virani Doctoral student, Faculty of Nursing, University of Calgary, Calgary, Canada. Theresa Green Associate professor, Faculty of Nursing, University of Calgary, Calgary, Canada. Tanvir C Turin Associate professor, Department of Family Medicine, University of Calgary, Calgary, Canada. Correspondence to: [email protected]
Keywords Amputation, nursing assessment, pain management, patient teaching, phantom limb pain
PHANTOM LIMB PAIN (PLP) is a type of neuropathic pain that occurs in an amputated limb after accidental or surgical removal of a limb or part of a limb (Hill 1999, Flor et al 2006). PLP is a unique, subjective and highly individual experience that occurs in 80-90% of patients who have undergone an amputation (Chahine and Kanazi 2007, Knotkova et al 2012). PLP is often confused with stump or residual limb pain and phantom sensations (Chahine and Kanazi 2007). It is important that nurses are aware of the difference in these terms to perform precise assessments and interventions. Stump pain occurs in the remaining part of an amputated limb and generally resolves within a few weeks, depending on wound healing, infection, comorbidities such as diabetes and fitting of any prosthesis. Prolonged stump pain may contribute to PLP. Nurses should assess stump wounds frequently and aim to promote healing, prevent infection, manage comorbidities and provide access to resources for proper prosthetic fitting. Phantom sensations are painless feelings associated with the amputated limb, which can be divided into three categories: kinaesthetic (size, shape and proprioception), kinetic (movement perception) and exteroceptive sensations (such as itching and prickling). Patients may be frightened by phantom sensations and PLP, and feel uncomfortable reporting them. Nurses should investigate whether patients have such feelings and reiterate that they are normal.
Review
Use and misuse of the word ‘phantom’
All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Exploring a term and its possible uses in language and among different disciplines can enable more indepth insight. The term ‘phantom’ is used to refer to a ghost, spirit, illusion, fiction, or something apparently seen, heard, or sensed but having no physical reality. It is used extensively in movies, music, novels, video games and sports to name a character or to describe a ghostly, fictitious or unreal notion. In nuclear medicine, phantom imaging is one of the techniques used to tune imaging devices,
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such as computed tomography scans and magnetic resonance imaging (Pina et al 2006). In the medical field, the word ‘phantom’ is used generally to explain pseudo-conditions, such as phantom pregnancy (Drife 1985) and phantom cyst (Baud et al 2010). Phantom phenomena in the medical field were first reported in the 16th century by the French military surgeon Ambrose Pare, following amputations in war victims. The term disappeared for centuries from the medical literature until Weir Mitchell coined the phrase ‘phantom limb syndrome’ in the 19th century (Chahine and Kanazi 2007, Crawford 2009). Use of the word ‘phantom’ for conditions believed to have no physical basis contributed to the stigmatisation of PLP, which made it difficult for amputees and healthcare professionals to accept PLP as a ‘real’ phenomenon. McCaffrey and Pasero (1999) suggested that healthcare professionals are more likely to treat pain when the cause is clear than when the pain is ‘phantom’. It is crucial that nurses give credence to patientreported PLP, display a non-judgemental attitude and administer analgesia in a timely manner.
while Davidson et al (2010) reported a decrease in PLP over time. The only explanation posited for pain intensity decreasing over time is that amputees learn to live with PLP (Wright 1983). Perhaps time heals and enables the coping strategies learned through trial and error to be implemented.
Characteristic features
Telescoping
The characteristic features of PLP can be differentiated into five major categories: subjective pain descriptors, intensity, pattern, location and telescoping.
Subjective pain descriptors
PLP is a highly subjective and individual experience. Björkman et al (2010) revealed that patients who have undergone amputations found it difficult to describe PLP and used metaphors such as fire, knife, boiling water and electric current to express their feelings. The common characteristics of PLP described by amputees tend to include sensations such as burning, tingling, cramping, shooting, itching, pins and needles, throbbing, sharp, stabbing, squeezing, jabbing, crushing, and tearing (Anderson-Barnes et al 2009, Weeks et al 2010). Chahine and Kanazi (2007) indicated that PLP was perceived as similar to pre-amputation pain for some patients who have undergone amputations.
Intensity
Many of those who have had an amputation report intense pain immediately afterwards or within 24 hours (Anderson-Barnes et al 2009). Several studies have explored the relationship between pain intensity and time elapsed after amputation, with mixed results. For example, Bosmans et al (2010) established that PLP increased over time,
Pattern
The patterns of PLP also differ among people with amputations. Some feel constant pain, although intensities may vary. A few patients in a study of PLP conducted by Weeks et al (2010) reported PLP as lasting seconds, with some episodes persisting up to two hours. However, Giummarra et al (2007) reported that PLP is experienced from days to weeks, months, years or even decades, and that it usually converts to chronic pain.
Location
The initial location of PLP is similar to that of pre-amputation pain for most patients. For about 50% of amputees, PLP eventually localises to a distal part of the phantom limb, such as digits, while the other 50% report pain in the entire limb (Hill 1999, Chahine and Kanazi 2007). The telescoping effect, also known as the ‘fade away phenomenon’, is described as the sensation of shrinking and shortening of the phantom limb in size and length over time, until it finally retracts into the stump (Richardson 2008). For example, the person with an amputated forearm feels that the amputated hand is shrinking back to the elbow stump and finally that it attaches to the elbow. One possible reason for this phenomenon is reorganisation of the somatosensory cortex (portion of the brain responsible for the processing and integration of motor and tactile information) such that over time the cortical area originally concerned with the hand becomes enlarged. Telescoping may increase, decrease or have no effect on PLP (Grüsser et al 2001, Richardson et al 2006).
Pathophysiology Several theories have been proposed to explain the mechanism of PLP, yet none can explain the phenomenon fully. PLP seems to be a combination of several mechanisms (Weeks et al 2010), with those most discussed being cortical reorganisation, proprioceptive memory theory and peripheral theories. Cortical reorganisation or neuroplasticity suggests that after amputation the somatosensory cortex of the brain receives
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Art & science pain management constant ‘signals’ from the missing limb of the body. Over time these constant signals replace the genetically assigned area for the missing limb with the adjacent area in the brain; therefore, any sensation in the body part that represents the adjacent area is interpreted as pain in the amputated limb. For example, for an amputated arm, sensation originating from the face (which is an adjacent area to the genetically assigned area for arm) can be misinterpreted as PLP (Ramachandran and Rogers-Ramachandran 2000, Karl et al 2001). Proprioceptive memory theory suggests that painful limbs before amputation create pain memories in the brain. The visual system recognises the loss of the limb, but the brain does not. Pre-amputation pain memories reserved in the proprioceptive memory bank send constant signals to the brain, resulting in PLP that feels similar to the pre-amputation pain (Weeks et al 2010, Chapman 2011). Peripheral theories propose that sympathetic activation of chemicals and neurotransmitters as a consequence of tissue injury sensitise the peripheral pain receptors (nociceptors) and nerves (Weeks et al 2010). The constant exposure to pain produces several chemical and structural changes. These changes activate neighbouring nerves, not originally involved in the injury, and produce pain. The common mechanisms thought to contribute to the development of PLP are summarised in Figure 1. The most frequent critique of theories explaining PLP is that they fail to explain why some patients with amputations do not experience PLP (Richardson 2010). PLP still presents a challenge to researchers.
Effects The effects of PLP are different for each patient, and in the long term are dependent on the person’s response to loss. During the acute phase, typically within the first six months, the majority of people with PLP have a poor quality of life (Chahine and Kanazi 2007). It is traumatic for the person with the amputation to deal with their loss, and PLP imposes an additional strain, worsening the situation. The distressing effects of PLP on the patient’s physical, social and psychological wellbeing increase pain intensity, creating a cycle of suffering for the patient (Whyte and Niven 2001). Hanley et al (2009) suggested that a prosthesis can help amputees in getting back to their usual activities, but some patients are unable to take advantage of this technology because pain prevents them. Whether the use of a prosthesis
FIGURE 1 Mechanisms involved in the development of phantom limb pain Long-lasting noxious input to the limb
Development of a cortical pain memory Enhanced excitability
Amputation
Reorganisation of the amputation zone in somatosensory cortex
Selective loss of C fibres Random input from stump neuroma Abnormal changes in the dorsal root ganglion and dorsal horn Sympathetic activation (Reproduced with permission, Flor 2002)
increases or decreases PLP is debatable. It has been suggested that the pain associated with prosthesis use causes patients to either stop using a prosthesis or to use it only for short periods of time (Desmond et al 2008). This can lead to disability and loss of productivity. PLP is associated negatively with social role performance, such as occupational roles, family roles, relationships with friends and relatives and involvement in leisure activities. Parkes (1973) noted that 88% of respondents were unemployed within a year of initial PLP episodes. Burger (2010) stated that persistent PLP reduced the chances of successful employment. Some amputees were unable to return to work as a result of intense PLP or disability whereas some people who managed to return to work experienced decreased job satisfaction as a result of intense PLP. Briggs (2010) asserted that PLP decreases socialisation and brings about changes to social or familial roles. It can be difficult for amputees to perform role-associated activities as a result of intense pain. Further, many amputees have reported that they had to give up their hobbies because of intense pain, and it was difficult for them to spend their days in meaningful ways. Some people with amputations felt that their relationship with their
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partner improved, because of the increased time spent with each other (Bosmans et al 2010).
The nurse’s role in caring for patients Nurses have an essential role in caring for patients with PLP. The first step is conducting a thorough assessment of PLP. Inaccurate or lack of PLP assessment can result in poor pain management. Robbins et al (2009) noted the major reason amputees did not report pain was the perception of a lack of support from healthcare professionals. Assessment of PLP is also imperative in planning care for these patients. There are several monodimensional (assessing one attribute) and multidimensional (assessing multiple attributes) tools available for pain assessment. Many nurses will be aware of the 10-point numerical rating scale: 0 (no pain) to 10 (worst pain) and the OPQRST (Onset, Provocation, Quality, Region and radiation, Severity, Time (duration)) mnemonic for assessing pain (Kaplow and Hardin 2007, Jackson and Jackson 2009). However, the Short Form McGill Pain Questionnaire (SF-MPQ) (Melzack 1987, Burckhardt and Jones 2003) is discussed as a means of providing PLP-specific pain assessment. The SF-MPQ is a multidimensional tool to assess chronic and/or neuropathic pain. It includes the present pain intensity index, a visual analogue scale and a list of 15 descriptive words. This list is divided into sensory and affective categories, and all descriptors are rated on an intensity scale from 0 (none) to 3 (severe). The questionnaire is a user friendly tool and usually requires between five and 15 minutes to complete (Melzack 1987, Burckhardt and Jones 2003). The word list in SF-MPQ provides PLP patients with a common language to communicate their feelings. It brings a sense of relief to patients to see their feelings expressed in words (Crawford 2009). Nurses can provide support through frequent pain assessments, analgesia, education, attentive listening and simply by being present (Knotkova et al 2012). Nurse educators can devise PLP-specific programmes or learning modules to help nurses understand PLP. Sharing current advances and research in unit-specific meetings and through emails might also assist evidence-based practice – one good example might be sharing SF-MPQ or other assessment tools to improve PLP assessment. Making SF-MPQ available in recovery areas and orthopaedic units also can promote use of this tool. PLP is not a well-explored phenomenon in the nursing literature. A CINAHL (Cumulative Index of Nursing and Allied Health Literature) search with the terms ‘phantom pain and nursing’
revealed only 39 results (search conducted in August 2014) and the literature that is available on phantom pain is influenced by medicine and rehabilitation. The apparent lack of nursing literature reflects the need for nurses to promote awareness of this phenomenon.
Contributing factors and strategies for management The development of PLP is a combination of biological and psychosocial factors, and thus management should be directed towards working with these factors (Box 1). PLP is challenging for healthcare professionals. Several analgesic treatments and combinations of analgesia with tricyclic antidepressants are offered to patients. However, these analgesics and combinations do not always prove to be effective in relieving pain. The bio-psychosocial factors that predispose to PLP development and the role of nurses in teaching and emphasising self-management skills are discussed.
Gender and culture
Women report greater PLP intensities and tend to seek more medical attention for PLP compared with men (Bosmans et al 2010). These differences are thought to be the result of biological, psychological and cultural factors. Wiesenfeld-Hallin (2005) indicated that variation of sex hormones in females affects pain perception. Ellermeier and Westphal (1995) studied autonomic responses to pain (pupil dilation in healthy men and women), and revealed that noxious stimuli were perceived as more painful by women than by men. Rollman et al (2004) established three psychosocial elements that may account for greater pain perception in women. Women are:
BOX 1 Factors associated with phantom limb pain (PLP) and the nurse’s role in ameliorating these factors Factors associated with PLP: Gender and culture. Self-reliant personality. Passive or maladaptive coping styles. Intense pre-amputation pain. Traumatic amputation. Nurse’s role: Provide culturally sensitive care. Focus on developing independence. Teach effective coping strategies and encourage development of new hobbies. Provide adequate analgesia and support. Recognise signs of post-traumatic stress disorder and intervene early.
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Art & science pain management Hyper vigilant; they focus more on threatening situations. Engage in greater bodily monitoring. Exhibit greater prevalence of anxiety compared with men. Cultural and social roles may also influence acceptable behaviour in reaction to pain. Wise et al (2002) reported that social sources, such as family and culture, shape behaviour with regards to pain beliefs, expectations and subsequent attitudes. Nayak et al (2000) postulated that culture-specific norms have a significant role in expressions of pain that differ between men and women. In most cultures, men are expected to show a higher tolerance to pain, and showing signs of pain is considered a weakness, whereas it is often socially acceptable for women to verbalise their pain. Recognising gender and cultural barriers to pain management and the requirement for analgesia can help patients in the acute phase of amputation. Teaching patients the importance of pain management and of asking for analgesia when required is also vital.
Personality
PLP is thought to be representative of certain personality factors. Parkes (1973) noted that patients with persistent PLP scored high on rigid, perfectionist, compulsive and self-reliant personality types. Parkes (1973) suggested that resistance to inevitable mental and physical changes, and lack of acceptance of loss of self-reliance, following amputation may contribute to the development of PLP. The need for reliance on others is often considered a sign of weakness, creating feelings of helplessness and powerlessness. These feelings create distress, thus contributing to persistent PLP. Nurses can help by gradually increasing patients’ sense of independence. Teaching self-care strategies and encouraging a gradual attainment of optimal activity levels can assist adjustment.
Coping styles
Pre-amputation passive or maladaptive coping styles are associated with the development of PLP. Passive and maladaptive coping styles, such as smoking and pre or post-amputation catastrophising or negative attitudes towards pain, can worsen PLP (Jensen et al 2002, Richardson et al 2007). Some people who have undergone amputations use pain-contingent rest (resting all the time because of pain) as a coping mechanism, which leads to muscle atrophy and decreases tolerance to pain, thus maximising disability and PLP over time (Jensen et al 2002). Enabling coping strategies such as return to pre-amputation leisure activities or the development of new
hobbies, depending on activity level, can help divert attention from PLP, improve mood, increase adjustment and acceptance and encourage a gradual return to leisure activities. These leisure activities could include painting, reading, listening to relaxing music and conversations with friends and family. Amputation may allow patients to spend time on activities that were neglected before, because of time constraints.
Pre-amputation pain
Patients who experience longstanding pre-amputation pain tend to report intense PLP. This could be explained by the proprioceptive pain memory theory, which asserts that PLP is the result of the memory of pre-amputation pain (Weeks et al 2010). Hirsh et al (2010) found those participants who experienced longer periods of pre-amputation pain reported higher levels and intensities of PLP. Nurses can offer analgesia before amputation and attempt to keep the patent pain free as much as possible. Teaching what to expect after amputation and coaching patients in effective coping strategies may help reduce post-amputation pain. Providing lists of available resources such as support groups, financial aids and prosthesis may also help reduce pre-amputation stress and promote post-operative adjustment.
Type of amputation
Traumatic amputations occur predominately in the young (20–54 years of age), male, working population as a result of motor vehicle collisions and work-related injuries (Birch 2009). Traumatic amputation can also influence the development of PLP, with the incidence of PLP higher following traumatic amputation compared with planned surgical amputation (Ramachandran and Hirstein 1998, Chahine and Kanazi 2007). Sudden loss of limb in a young and otherwise healthy individual can be emotionally distressing and may lead to post-traumatic stress disorder (PTSD). PTSD is a psychiatric condition that occurs after experiencing intense trauma, fear or helplessness, and it may contribute to the development of PLP. Similarly PLP may act as a constant reminder of the trauma of losing a limb, thus triggering PTSD symptoms (Desmond and MacLachlan 2006). Recognising the risk for PTSD and identifying early signs is crucial. These signs include self-blame, suicidal ideation, frequent flashbacks or nightmares, and avoidance of the amputated limb such as, refusing to look at the amputated limb or in the mirror, hide the amputated site and resist performing activities that involve the amputated limb. Nurses can initiate a psychiatric referral and establish or refer the patient and family
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to amputee support groups to ease the transition to optimum health.
Strategies for management
Frequent pain assessment and offering analgesia during the initial phase following amputation is important. Preparing patients for discharge by teaching adaptive coping skills and providing referrals to supportive services in the community are also vital in post-amputation community reintegration. For example, there are several other treatment modalities that are available to treat patients with PLP. These include:
Sympathetic blocks (Cohen et al 2011). Acupuncture (Jacobs and Niemtzow 2011, Davies 2013). Mirror visual feedback (Ramachandran and Rogers-Ramachandran 1996, Kiabi et al 2013), independently or in combination with auditory feedback therapy (Wilcher et al 2011). Hypnotherapy (Oakley et al 2002). Farabloc (Conine et al 1993). Transcutaneous electrical nerve stimulation (TENS) (Mulvey et al 2013). Percussion, massage, and deep brain and spinal cord stimulation (Black et al 2009).
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Art & science pain management Information regarding these treatments can form part of patient education, thus providing reassurance that there is help available.
Conclusion PLP is a difficult condition to manage and it is nurses’ responsibility to help patients with PLP to adjust to this life-altering phenomenon. Nurses can develop a practice of asking patients about PLP during their initial post-operative assessment. Nurse researchers and authors
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can implement research projects that further explore different aspects of PLP and disseminate information in nursing journals to promote better awareness. In this era of advanced technology in health care, the need for nurse researchers to explore different aspects of PLP is more important than ever. Increased access to knowledge generates increased expectations of healthcare professionals to alleviate or manage PLP adequately. In this way, people with PLP can be assisted to achieve an optimum level of health and quality of life NS
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Phantom limb pain: a nursing perspective Virani A et al (2014) Phantom limb pain: a nursing perspective. Nursing Standard. 29, 1, 44-50. Date of submission: January 7 2014; date of acceptance: March 19 2014.
Abstract Phantom limb pain (PLP) is a neuropathic pain condition occurring after amputation of a limb. PLP affects amputees’ quality of life and results in loss of productivity and psychological distress. The origin of pain from a non-existing limb creates a challenging situation for both patients and nurses. It is imperative to provide patients and nurses with the knowledge that PLP is a real phenomenon that requires care and treatment. This knowledge will lead to reduced problems for patients by allowing them to talk about PLP and ask for help when needed. Understanding of this phenomenon will enable nurses to appreciate the unique features of this form of neuropathic pain and apply appropriate techniques to promote effective pain management. Performing accurate and frequent assessments to understand the unique characteristics of PLP, displaying a non-judgemental attitude towards patients and teaching throughout the peri-operative process are significant nursing interventions.
Authors Anila Virani Doctoral student, Faculty of Nursing, University of Calgary, Calgary, Canada. Theresa Green Associate professor, Faculty of Nursing, University of Calgary, Calgary, Canada. Tanvir C Turin Associate professor, Department of Family Medicine, University of Calgary, Calgary, Canada. Correspondence to: [email protected]
Keywords Amputation, nursing assessment, pain management, patient teaching, phantom limb pain
PHANTOM LIMB PAIN (PLP) is a type of neuropathic pain that occurs in an amputated limb after accidental or surgical removal of a limb or part of a limb (Hill 1999, Flor et al 2006). PLP is a unique, subjective and highly individual experience that occurs in 80-90% of patients who have undergone an amputation (Chahine and Kanazi 2007, Knotkova et al 2012). PLP is often confused with stump or residual limb pain and phantom sensations (Chahine and Kanazi 2007). It is important that nurses are aware of the difference in these terms to perform precise assessments and interventions. Stump pain occurs in the remaining part of an amputated limb and generally resolves within a few weeks, depending on wound healing, infection, comorbidities such as diabetes and fitting of any prosthesis. Prolonged stump pain may contribute to PLP. Nurses should assess stump wounds frequently and aim to promote healing, prevent infection, manage comorbidities and provide access to resources for proper prosthetic fitting. Phantom sensations are painless feelings associated with the amputated limb, which can be divided into three categories: kinaesthetic (size, shape and proprioception), kinetic (movement perception) and exteroceptive sensations (such as itching and prickling). Patients may be frightened by phantom sensations and PLP, and feel uncomfortable reporting them. Nurses should investigate whether patients have such feelings and reiterate that they are normal.
Review
Use and misuse of the word ‘phantom’
All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Exploring a term and its possible uses in language and among different disciplines can enable more indepth insight. The term ‘phantom’ is used to refer to a ghost, spirit, illusion, fiction, or something apparently seen, heard, or sensed but having no physical reality. It is used extensively in movies, music, novels, video games and sports to name a character or to describe a ghostly, fictitious or unreal notion. In nuclear medicine, phantom imaging is one of the techniques used to tune imaging devices,
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such as computed tomography scans and magnetic resonance imaging (Pina et al 2006). In the medical field, the word ‘phantom’ is used generally to explain pseudo-conditions, such as phantom pregnancy (Drife 1985) and phantom cyst (Baud et al 2010). Phantom phenomena in the medical field were first reported in the 16th century by the French military surgeon Ambrose Pare, following amputations in war victims. The term disappeared for centuries from the medical literature until Weir Mitchell coined the phrase ‘phantom limb syndrome’ in the 19th century (Chahine and Kanazi 2007, Crawford 2009). Use of the word ‘phantom’ for conditions believed to have no physical basis contributed to the stigmatisation of PLP, which made it difficult for amputees and healthcare professionals to accept PLP as a ‘real’ phenomenon. McCaffrey and Pasero (1999) suggested that healthcare professionals are more likely to treat pain when the cause is clear than when the pain is ‘phantom’. It is crucial that nurses give credence to patientreported PLP, display a non-judgemental attitude and administer analgesia in a timely manner.
while Davidson et al (2010) reported a decrease in PLP over time. The only explanation posited for pain intensity decreasing over time is that amputees learn to live with PLP (Wright 1983). Perhaps time heals and enables the coping strategies learned through trial and error to be implemented.
Characteristic features
Telescoping
The characteristic features of PLP can be differentiated into five major categories: subjective pain descriptors, intensity, pattern, location and telescoping.
Subjective pain descriptors
PLP is a highly subjective and individual experience. Björkman et al (2010) revealed that patients who have undergone amputations found it difficult to describe PLP and used metaphors such as fire, knife, boiling water and electric current to express their feelings. The common characteristics of PLP described by amputees tend to include sensations such as burning, tingling, cramping, shooting, itching, pins and needles, throbbing, sharp, stabbing, squeezing, jabbing, crushing, and tearing (Anderson-Barnes et al 2009, Weeks et al 2010). Chahine and Kanazi (2007) indicated that PLP was perceived as similar to pre-amputation pain for some patients who have undergone amputations.
Intensity
Many of those who have had an amputation report intense pain immediately afterwards or within 24 hours (Anderson-Barnes et al 2009). Several studies have explored the relationship between pain intensity and time elapsed after amputation, with mixed results. For example, Bosmans et al (2010) established that PLP increased over time,
Pattern
The patterns of PLP also differ among people with amputations. Some feel constant pain, although intensities may vary. A few patients in a study of PLP conducted by Weeks et al (2010) reported PLP as lasting seconds, with some episodes persisting up to two hours. However, Giummarra et al (2007) reported that PLP is experienced from days to weeks, months, years or even decades, and that it usually converts to chronic pain.
Location
The initial location of PLP is similar to that of pre-amputation pain for most patients. For about 50% of amputees, PLP eventually localises to a distal part of the phantom limb, such as digits, while the other 50% report pain in the entire limb (Hill 1999, Chahine and Kanazi 2007). The telescoping effect, also known as the ‘fade away phenomenon’, is described as the sensation of shrinking and shortening of the phantom limb in size and length over time, until it finally retracts into the stump (Richardson 2008). For example, the person with an amputated forearm feels that the amputated hand is shrinking back to the elbow stump and finally that it attaches to the elbow. One possible reason for this phenomenon is reorganisation of the somatosensory cortex (portion of the brain responsible for the processing and integration of motor and tactile information) such that over time the cortical area originally concerned with the hand becomes enlarged. Telescoping may increase, decrease or have no effect on PLP (Grüsser et al 2001, Richardson et al 2006).
Pathophysiology Several theories have been proposed to explain the mechanism of PLP, yet none can explain the phenomenon fully. PLP seems to be a combination of several mechanisms (Weeks et al 2010), with those most discussed being cortical reorganisation, proprioceptive memory theory and peripheral theories. Cortical reorganisation or neuroplasticity suggests that after amputation the somatosensory cortex of the brain receives
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Art & science pain management constant ‘signals’ from the missing limb of the body. Over time these constant signals replace the genetically assigned area for the missing limb with the adjacent area in the brain; therefore, any sensation in the body part that represents the adjacent area is interpreted as pain in the amputated limb. For example, for an amputated arm, sensation originating from the face (which is an adjacent area to the genetically assigned area for arm) can be misinterpreted as PLP (Ramachandran and Rogers-Ramachandran 2000, Karl et al 2001). Proprioceptive memory theory suggests that painful limbs before amputation create pain memories in the brain. The visual system recognises the loss of the limb, but the brain does not. Pre-amputation pain memories reserved in the proprioceptive memory bank send constant signals to the brain, resulting in PLP that feels similar to the pre-amputation pain (Weeks et al 2010, Chapman 2011). Peripheral theories propose that sympathetic activation of chemicals and neurotransmitters as a consequence of tissue injury sensitise the peripheral pain receptors (nociceptors) and nerves (Weeks et al 2010). The constant exposure to pain produces several chemical and structural changes. These changes activate neighbouring nerves, not originally involved in the injury, and produce pain. The common mechanisms thought to contribute to the development of PLP are summarised in Figure 1. The most frequent critique of theories explaining PLP is that they fail to explain why some patients with amputations do not experience PLP (Richardson 2010). PLP still presents a challenge to researchers.
Effects The effects of PLP are different for each patient, and in the long term are dependent on the person’s response to loss. During the acute phase, typically within the first six months, the majority of people with PLP have a poor quality of life (Chahine and Kanazi 2007). It is traumatic for the person with the amputation to deal with their loss, and PLP imposes an additional strain, worsening the situation. The distressing effects of PLP on the patient’s physical, social and psychological wellbeing increase pain intensity, creating a cycle of suffering for the patient (Whyte and Niven 2001). Hanley et al (2009) suggested that a prosthesis can help amputees in getting back to their usual activities, but some patients are unable to take advantage of this technology because pain prevents them. Whether the use of a prosthesis
FIGURE 1 Mechanisms involved in the development of phantom limb pain Long-lasting noxious input to the limb
Development of a cortical pain memory Enhanced excitability
Amputation
Reorganisation of the amputation zone in somatosensory cortex
Selective loss of C fibres Random input from stump neuroma Abnormal changes in the dorsal root ganglion and dorsal horn Sympathetic activation (Reproduced with permission, Flor 2002)
increases or decreases PLP is debatable. It has been suggested that the pain associated with prosthesis use causes patients to either stop using a prosthesis or to use it only for short periods of time (Desmond et al 2008). This can lead to disability and loss of productivity. PLP is associated negatively with social role performance, such as occupational roles, family roles, relationships with friends and relatives and involvement in leisure activities. Parkes (1973) noted that 88% of respondents were unemployed within a year of initial PLP episodes. Burger (2010) stated that persistent PLP reduced the chances of successful employment. Some amputees were unable to return to work as a result of intense PLP or disability whereas some people who managed to return to work experienced decreased job satisfaction as a result of intense PLP. Briggs (2010) asserted that PLP decreases socialisation and brings about changes to social or familial roles. It can be difficult for amputees to perform role-associated activities as a result of intense pain. Further, many amputees have reported that they had to give up their hobbies because of intense pain, and it was difficult for them to spend their days in meaningful ways. Some people with amputations felt that their relationship with their
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partner improved, because of the increased time spent with each other (Bosmans et al 2010).
The nurse’s role in caring for patients Nurses have an essential role in caring for patients with PLP. The first step is conducting a thorough assessment of PLP. Inaccurate or lack of PLP assessment can result in poor pain management. Robbins et al (2009) noted the major reason amputees did not report pain was the perception of a lack of support from healthcare professionals. Assessment of PLP is also imperative in planning care for these patients. There are several monodimensional (assessing one attribute) and multidimensional (assessing multiple attributes) tools available for pain assessment. Many nurses will be aware of the 10-point numerical rating scale: 0 (no pain) to 10 (worst pain) and the OPQRST (Onset, Provocation, Quality, Region and radiation, Severity, Time (duration)) mnemonic for assessing pain (Kaplow and Hardin 2007, Jackson and Jackson 2009). However, the Short Form McGill Pain Questionnaire (SF-MPQ) (Melzack 1987, Burckhardt and Jones 2003) is discussed as a means of providing PLP-specific pain assessment. The SF-MPQ is a multidimensional tool to assess chronic and/or neuropathic pain. It includes the present pain intensity index, a visual analogue scale and a list of 15 descriptive words. This list is divided into sensory and affective categories, and all descriptors are rated on an intensity scale from 0 (none) to 3 (severe). The questionnaire is a user friendly tool and usually requires between five and 15 minutes to complete (Melzack 1987, Burckhardt and Jones 2003). The word list in SF-MPQ provides PLP patients with a common language to communicate their feelings. It brings a sense of relief to patients to see their feelings expressed in words (Crawford 2009). Nurses can provide support through frequent pain assessments, analgesia, education, attentive listening and simply by being present (Knotkova et al 2012). Nurse educators can devise PLP-specific programmes or learning modules to help nurses understand PLP. Sharing current advances and research in unit-specific meetings and through emails might also assist evidence-based practice – one good example might be sharing SF-MPQ or other assessment tools to improve PLP assessment. Making SF-MPQ available in recovery areas and orthopaedic units also can promote use of this tool. PLP is not a well-explored phenomenon in the nursing literature. A CINAHL (Cumulative Index of Nursing and Allied Health Literature) search with the terms ‘phantom pain and nursing’
revealed only 39 results (search conducted in August 2014) and the literature that is available on phantom pain is influenced by medicine and rehabilitation. The apparent lack of nursing literature reflects the need for nurses to promote awareness of this phenomenon.
Contributing factors and strategies for management The development of PLP is a combination of biological and psychosocial factors, and thus management should be directed towards working with these factors (Box 1). PLP is challenging for healthcare professionals. Several analgesic treatments and combinations of analgesia with tricyclic antidepressants are offered to patients. However, these analgesics and combinations do not always prove to be effective in relieving pain. The bio-psychosocial factors that predispose to PLP development and the role of nurses in teaching and emphasising self-management skills are discussed.
Gender and culture
Women report greater PLP intensities and tend to seek more medical attention for PLP compared with men (Bosmans et al 2010). These differences are thought to be the result of biological, psychological and cultural factors. Wiesenfeld-Hallin (2005) indicated that variation of sex hormones in females affects pain perception. Ellermeier and Westphal (1995) studied autonomic responses to pain (pupil dilation in healthy men and women), and revealed that noxious stimuli were perceived as more painful by women than by men. Rollman et al (2004) established three psychosocial elements that may account for greater pain perception in women. Women are:
BOX 1 Factors associated with phantom limb pain (PLP) and the nurse’s role in ameliorating these factors Factors associated with PLP: Gender and culture. Self-reliant personality. Passive or maladaptive coping styles. Intense pre-amputation pain. Traumatic amputation. Nurse’s role: Provide culturally sensitive care. Focus on developing independence. Teach effective coping strategies and encourage development of new hobbies. Provide adequate analgesia and support. Recognise signs of post-traumatic stress disorder and intervene early.
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Art & science pain management Hyper vigilant; they focus more on threatening situations. Engage in greater bodily monitoring. Exhibit greater prevalence of anxiety compared with men. Cultural and social roles may also influence acceptable behaviour in reaction to pain. Wise et al (2002) reported that social sources, such as family and culture, shape behaviour with regards to pain beliefs, expectations and subsequent attitudes. Nayak et al (2000) postulated that culture-specific norms have a significant role in expressions of pain that differ between men and women. In most cultures, men are expected to show a higher tolerance to pain, and showing signs of pain is considered a weakness, whereas it is often socially acceptable for women to verbalise their pain. Recognising gender and cultural barriers to pain management and the requirement for analgesia can help patients in the acute phase of amputation. Teaching patients the importance of pain management and of asking for analgesia when required is also vital.
Personality
PLP is thought to be representative of certain personality factors. Parkes (1973) noted that patients with persistent PLP scored high on rigid, perfectionist, compulsive and self-reliant personality types. Parkes (1973) suggested that resistance to inevitable mental and physical changes, and lack of acceptance of loss of self-reliance, following amputation may contribute to the development of PLP. The need for reliance on others is often considered a sign of weakness, creating feelings of helplessness and powerlessness. These feelings create distress, thus contributing to persistent PLP. Nurses can help by gradually increasing patients’ sense of independence. Teaching self-care strategies and encouraging a gradual attainment of optimal activity levels can assist adjustment.
Coping styles
Pre-amputation passive or maladaptive coping styles are associated with the development of PLP. Passive and maladaptive coping styles, such as smoking and pre or post-amputation catastrophising or negative attitudes towards pain, can worsen PLP (Jensen et al 2002, Richardson et al 2007). Some people who have undergone amputations use pain-contingent rest (resting all the time because of pain) as a coping mechanism, which leads to muscle atrophy and decreases tolerance to pain, thus maximising disability and PLP over time (Jensen et al 2002). Enabling coping strategies such as return to pre-amputation leisure activities or the development of new
hobbies, depending on activity level, can help divert attention from PLP, improve mood, increase adjustment and acceptance and encourage a gradual return to leisure activities. These leisure activities could include painting, reading, listening to relaxing music and conversations with friends and family. Amputation may allow patients to spend time on activities that were neglected before, because of time constraints.
Pre-amputation pain
Patients who experience longstanding pre-amputation pain tend to report intense PLP. This could be explained by the proprioceptive pain memory theory, which asserts that PLP is the result of the memory of pre-amputation pain (Weeks et al 2010). Hirsh et al (2010) found those participants who experienced longer periods of pre-amputation pain reported higher levels and intensities of PLP. Nurses can offer analgesia before amputation and attempt to keep the patent pain free as much as possible. Teaching what to expect after amputation and coaching patients in effective coping strategies may help reduce post-amputation pain. Providing lists of available resources such as support groups, financial aids and prosthesis may also help reduce pre-amputation stress and promote post-operative adjustment.
Type of amputation
Traumatic amputations occur predominately in the young (20–54 years of age), male, working population as a result of motor vehicle collisions and work-related injuries (Birch 2009). Traumatic amputation can also influence the development of PLP, with the incidence of PLP higher following traumatic amputation compared with planned surgical amputation (Ramachandran and Hirstein 1998, Chahine and Kanazi 2007). Sudden loss of limb in a young and otherwise healthy individual can be emotionally distressing and may lead to post-traumatic stress disorder (PTSD). PTSD is a psychiatric condition that occurs after experiencing intense trauma, fear or helplessness, and it may contribute to the development of PLP. Similarly PLP may act as a constant reminder of the trauma of losing a limb, thus triggering PTSD symptoms (Desmond and MacLachlan 2006). Recognising the risk for PTSD and identifying early signs is crucial. These signs include self-blame, suicidal ideation, frequent flashbacks or nightmares, and avoidance of the amputated limb such as, refusing to look at the amputated limb or in the mirror, hide the amputated site and resist performing activities that involve the amputated limb. Nurses can initiate a psychiatric referral and establish or refer the patient and family
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to amputee support groups to ease the transition to optimum health.
Strategies for management
Frequent pain assessment and offering analgesia during the initial phase following amputation is important. Preparing patients for discharge by teaching adaptive coping skills and providing referrals to supportive services in the community are also vital in post-amputation community reintegration. For example, there are several other treatment modalities that are available to treat patients with PLP. These include:
Sympathetic blocks (Cohen et al 2011). Acupuncture (Jacobs and Niemtzow 2011, Davies 2013). Mirror visual feedback (Ramachandran and Rogers-Ramachandran 1996, Kiabi et al 2013), independently or in combination with auditory feedback therapy (Wilcher et al 2011). Hypnotherapy (Oakley et al 2002). Farabloc (Conine et al 1993). Transcutaneous electrical nerve stimulation (TENS) (Mulvey et al 2013). Percussion, massage, and deep brain and spinal cord stimulation (Black et al 2009).
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Art & science pain management Information regarding these treatments can form part of patient education, thus providing reassurance that there is help available.
Conclusion PLP is a difficult condition to manage and it is nurses’ responsibility to help patients with PLP to adjust to this life-altering phenomenon. Nurses can develop a practice of asking patients about PLP during their initial post-operative assessment. Nurse researchers and authors
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can implement research projects that further explore different aspects of PLP and disseminate information in nursing journals to promote better awareness. In this era of advanced technology in health care, the need for nurse researchers to explore different aspects of PLP is more important than ever. Increased access to knowledge generates increased expectations of healthcare professionals to alleviate or manage PLP adequately. In this way, people with PLP can be assisted to achieve an optimum level of health and quality of life NS
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