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A Clinical Evaluation of Postamputation Phenomena Including Phantom Limb Pain after Lower Limb Amputation in Dysvascular Patients
Original Article A Clinical Evaluation of Postamputation Phenomena Including Phantom Limb Pain after Lower Limb Amputation in Dysvascular Patients Cliff Richardson, PhD, MSc, BSc, RN,* Kath Crawford, BSc, RN,† Karen Milnes, BSc,‡ Elizabeth Bouch, MSc, BSc,‡ and Jai Kulkarni, MA, FRCP† ---
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From the *University of Manchester, School of Nursing, Midwifery and Social Work; †University Hospitals of South Manchester Foundation Trust, Specialized Ability Centre; ‡Central Manchester Foundation Trust, Amputee Outreach Team, Manchester, UK. Address correspondence to Cliff Richardson, PhD, MSc, BSc, RN, Jean McFarlane Building, University of Manchester, Oxford Road, Manchester, M13 9PL, UK. E-mail: [email protected]. uk Received August 14, 2014; Revised October 13, 2014; Accepted October 17, 2014.
ABSTRACT:
To explore the effects of phantom phenomena on a group of dysvascular lower limb amputees. This was a cross-sectional study of dysvascular lower limb amputees. A modified version of the phantom phenomena questionnaire was used to measure the prevalence of phantom phenomena and the effects of those phenomena on daily life. Eighty-nine amputees were recruited. The majority were inpatients (72%) and male (72%). Most had pain before amputation (83%). Sixty-three percent had phantom limb pain. No associations were found between phantom limb pain and preamputation pain (p ¼ .397). Phantom limb pain was present immediately on waking from amputation in 23%. Phantom limb pain is highly fluctuant. It is more likely that phantom limb pain was present with more time passed since amputation (p ¼ .002). Outpatients with unhealed wounds were less likely to have phantom limb pain (p ¼ .007). The effects of postamputation phenomena include sleep loss and social restrictions. These results challenge the belief that phantom limb pain reduces over time as more outpatients reported phantom limb pain than inpatients. Preamputation pain is not linked to the presence of phantom limb pain. The fluctuant nature of phantom limb pain makes its treatment complex. Some may wish intensity to reduce, whereas others may prefer to reduce the number of episodes or duration of each episode instead. More research is needed to clarify the needs of amputees in relation to the postamputation phenomena. Ó 2015 by the American Society for Pain Management Nursing
1524-9042/$36.00 Ó 2015 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.10.006
Pain Management Nursing, Vol 16, No 4 (August), 2015: pp 561-569
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BACKGROUND Nearly 6000 major lower limb amputations are performed each year in the United Kingdom as a result of dysvascularity, trauma, infection, neurologic disorders, cancers, and congenital conditions (Health & Social Care Information Centre [HSCIC], 2011/12). Several postamputation phenomena have been reported, including phantom limb awareness (PLA); phantom limb sensations (PLS), such as kinetic, the sensation of movement, and kinesthetic, the sensation of position in space/size; phantom limb pain (PLP); superadded sensation or pain (which includes a feeling that a ring is present on a finger or a previous pain such as an in-growing toenail that is felt in the missing limb); and stump pain (SP) (Richardson, 2008). Links have been made between these sequelae and less favored outcomes such as slowed or reduced rehabilitation (Chadderton, 1978; Esquenazi, 1993; Horgan & MacLachlan, 2004; Houghton, Nicholls, Houghton, Saadah, & McColl, 1994; Osterman, 1997; Williamson, 1992). PLP has also been found to affect an amputee’s quality of life (Jensen et al., 2002; Sinha & Van Den Heuvel, 2011a; van der Schans, Geertzen, Schoppen, & Dijkstra, 2002). Recently a study of lower limb amputees found that quality-of-life scores using the SF-36 (a general health questionnaire) were significantly lower than normative data from the general public (Sinha, van den Heuvel, & Arokiasamy, 2011b). Multivariate regressions identified that PLP, in combination with other factors, predicted low quality of life as measured by the physical component score (PCS) and the mental component score (MCS) of the general health questionnaire, the SF-36 (Sinha et al., 2011b). Additionally PLP has been found to influence employment (Ide, Obayashi, & Toyonaga, 2002) and social position (Husum et al., 2002) and can cause depression (Jensen et al., 2002). When put together, the rehabilitation and qualityof-life issues associated with postamputation phenomena and PLP suggest that they should be a therapeutic priority for ongoing care. However, it is often difficult to fully appreciate the actual patient’s need because most research is undertaken with mixed groups of amputees and it is clear that care needs vary significantly between populations (i.e., upper and lower limb amputees) (Davidson, Khor, & Jones, 2010; Kulkarni, 2008; Richardson, Glenn, Nurmikko, & Horgan, 2006). Additionally, although ‘‘received wisdom’’ and previous reviews hint that phantom phenomena reduce over time, there is little robust evidence to support this assertion, especially in lower limb amputees (Flor, 2002; Nikolajsen & Jensen, 2001;
Richardson, 2008; Sherman, 1989). Variability in amputee populations is further complicated by individual response to the consequences of experiencing amputation and the presence of phantom phenomena (Bj€ orkman, Lund, Arner, & Hyden, 2012); hence, rehabilitation may need to be individually tailored (Casale, Alaa, Mallick, & Ring, 2009). We recently formed a multiprofessional team to better understand the rehabilitation, quality-of-life, and care management issues experienced by people after amputation attending our service. It was clear that we needed to collect more data on our population. Because dysvascularity, or peripheral vascular disease (PVD), is the most common reason for lower limb amputation in our clinic, we chose to focus initially on this group (Kulkarni, 2008). Although dysvascularity appears to be a heterogeneous group, recent results suggest that the postamputation issues do not vary between people with diabetes and without diabetes (Clark, Bowling, Jepson, & Rajbhandari, 2013), so it was considered appropriate to group them together. This paper describes the first step to developing an understanding of the actual care needs of our amputee population.
OBJECTIVES The aim of this study was to identify the prevalence and effects of phantom phenomena in our amputee population, and we had three objectives: To calculate prevalence of all phantom phenomena To identify the effects of phantom phenomena, especially PLP, on the population To explore relationships between phantom phenomena and patient characteristics
METHODS We conducted a cross-sectional analysis of data from consecutive lower limb amputees seen by an amputation specialist nurse, occupational therapist, or physiotherapist. As part of a clinical development the team had commenced use of the phantom phenomena questionnaire (PPQ) (Richardson et al., 2006) to help individuals with their ongoing care; however, it was not possible to make collective and evaluative judgments from the individual interviews. More detailed analysis of the PPQ data was required to make more general population decisions, and this paper describes that process. Because our service covers two large teaching hospitals and community, the amputees were classed
Postamputation Phenomena after Lower Limb Amputation
as inpatient or outpatient. The inpatients were hospitalized for the amputation or for stump/amputation– related treatment. The outpatients were referred for ongoing rehabilitation, including wound care. Once the PPQ was completed, the data were anonymized before analysis. Sample Postamputation inpatients were from two large teaching hospitals and outpatients were from one of the teaching hospital’s subregional disablement services centers (DSC) in the northwest of England. Data from a 9-month period were analyzed. Measures All amputees were interviewed using modified versions of the phantom phenomena questionnaire (PPQ) (Richardson et al., 2006). It can be difficult for amputees to differentiate the different postamputation phenomena, and using the PPQ in a face-to-face discussion enables the practitioner to fully elucidate the difference between phenomena (i.e., PLP and PLS) and ensures accuracy of prevalence, as well as allowing amputees to articulate specifics about their experiences. The PPQ recorded patient characteristics, surgical details, preamputation information, and the presence, frequency, and duration of postamputation phantom phenomena. Topics added to modify the PPQ were as follows: Pre- and postamputation pain numerical rating scores (NRS; 0-10) Analgesic use The effects of phantom phenomena on daily activities (analyzed as frequencies rather than qualitatively)
It was considered that inpatients who had recently undergone amputation or stump revision surgery were going to have different experiences than the outpatients who were undergoing continued rehabilitation. For this reason we performed analyses on the whole group as well as separately on inpatients and outpatients. We did not ask inpatients for an NRS of PLP because we considered that this would be difficult to specifically determine from postoperative pain. Additionally, preamputation analgesia was recorded for inpatients only because it could be confirmed from their medical notes, whereas most outpatients would have needed to rely on memory. Analysis All data were anonymized before analysis. Descriptive analyses and comparative statistical tests were performed. Depending on the data, independent sample
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t tests and Fisher’s exact tests were undertaken to identify statistical differences between groups (p < .05 was accepted as significant). Independent t tests were performed on continuous data, and Fisher’s exact test was undertaken when comparing nominal data. To make meaningful comparisons between nominal and continuous data, we converted the continuous data to dichotomous high and low variables using the mean as the cutoff point between the scores. Cross-tabulation (2 2) was used after conversion of the data and Fisher’s exact test was applied. Our regional DSC treats outpatients with healed and unhealed stump wounds. Unhealed wounds are treated before prosthetic fitting. For these analyses, unhealed wounds were from amputees attending for dressing of a wound.
RESULTS A total of 89 participants who had undergone major lower limb amputation for PVD were included in the analysis. The majority was male (72%) and the mean age was 65.5 (SD 11.4). Seventy-two percent were inpatients. Patient characteristics, including amputation details, are found in Table 1. Time since the amputation ranged from 1 week to 20 months with the mean time between inpatient and outpatient groups being significantly different (p ¼ .001; t ¼ 3.8; df 28.8; equal variances not assumed). Reasons for the amputation were PVD (59%), diabetes and PVD (36%), and diabetes (5%). A large majority (83%) stated that they had pain before the amputation, with the mean pain score reported to be 7.9 (SD 2.8), with 47% recalling their pain to be 10/10. Sixty-four percent had experienced pain for less than 6 months, but nearly a quarter (24%) had been suffering with pain for more than a year (Table 2). The mean length of time that patients had been in pain before the amputation was 3.3
TABLE 1. Patient Characteristics (n ¼ 89) Factor
All Patients Inpatients Outpatients
Gender (Male %) 72 70 Age (Yr)/Mean/SD 65.5/11.4 66.1/12.1 Amputation details (%) Unilateral 95 96 Bilateral 5 4 Below knee 64 59 Above knee 36 41 Time since amputation 2.9/4.6 0.9/1.9 (Month)/Mean/SD
76 63.7/9.3 92 8 76 24 5.3/5.6
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TABLE 2. Pain before and after Amputation
Pain before amputation (%) Pain score before amputation (0-10) Mean/SD Preamputation pain duration (%) >6 months 6-12 months <12 months PLP present (%) PLP pain score (Mean/SD; 0-10) Phantom limb pain (%) Regularity 1-10 per day Duration Up to 10 min Where participants had pain in their phantom* Toes/foot Lower leg Whole leg When the PLP started after amputation Immediately Within hours Within days Longer Stump pain (%)
All Patients
Inpatient
Outpatient
83 7.9/2.8
86 8.2/2.4
75 7.0/3.5
63 13 24 63 —
65 13 22 52 —
61 11 28 92 5.5/0.7
58
63
50
61
61
60
58 29 12
63 28 6
50 30 20
16 4 56 24 —
15 3 76 6 —
18 5 27 50 48
*Because of fluctuations, some gave multiple answers.
months (SD 1.3), with no statistical difference between inpatients and outpatients (p ¼ .20; t ¼ 1.3; df 22.8; equal variances not assumed). The preamputation analgesic profile for the inpatient group (n ¼ 63) is shown in Figure 1. Analgesic effect before amputation was variable, with 58% stating that the relief obtained was less than 5/10 on a 0-10 numerical rating score (0 ¼ no relief and 100 ¼ full relief). Sixty-seven percent said that they had not been told about PLP before the amputation. Twenty-three of the 25 outpatients (92%) and 32 of the 62 inpatients
FIGURE 1. - Pre-and Post-amputation analgesia (%). (Some were taking more than one analgesic)
(52%) had PLP (p ¼ .001), making a prevalence of 63% in our population. An association was found between the presence of PLP and the time (high/low) since amputation (p ¼ .002); the more time passed since the amputation, the more likely the patient was to have PLP. No association was found between PLP presence and the presence of preamputation pain (p ¼ .397), preamputation high/low pain score (p ¼ 1.00), the length of time (high/low) that they had been in pain before the amputation (p ¼ .661). The mean PLP intensity was 5.5 (SD 0.7) (Table 2). There was a wide variation in the regularity of the PLP, with 6% of the whole cohort reporting that it was continuous rather than fluctuant. Of those experiencing fluctuant PLP, the most common number of episodes per day was 1-9, with 65% experiencing more than 1 episode a day. One person was unable to categorize the regularity because it was so variable. The duration of each episode was also variable, with 61% stating that each episode lasted up to 10 minutes; however, 22% experienced episodes that lasted more than 30 minutes each time. These profiles were similar for inpatients and outpatients. Onset of PLP was also variable. PLP was present immediately on waking from surgery in 16% of the amputees, whereas 80% suggested that it commenced
Postamputation Phenomena after Lower Limb Amputation
TABLE 3. Postamputation Phenomena (% Unless Otherwise Noted) Phantom awareness Phantom size Same as normal leg Telescoped Kinesthetic sensations Normal position Abnormal position Both at different times Kinetic sensations Moves on its own Can be moved Superadded sensations—mainly the feeling of leg being clothed Exteroceptive sensations Present Mentioned by more than 10% Itch Pins and needles Tingling
96 85 15 86 7 7 38 43 31 68 45 15 13
days or longer after the surgery. No difference between inpatients and outpatients was found (p ¼ .739). When present, PLP was felt in the phantom toes/foot (58%), the lower leg (29%), or the whole phantom leg (12%). Most (93%) were taking analgesics for their PLP, with many taking a combination of analgesics (Fig. 1). Although the largest percentage was using acetaminophen (55%), there were large percentages using anticonvulsants such as pregabalin (45%) and gabapentin (32%). Morphine was being used by 23% of the participants overall, with 14% of outpatients using it for PLP. Apart from analgesia, outpatients identified five other strategies to control their PLP. Overall 24% were using some form of complementary therapy, with massage and moving the phantom noted to be the most frequently used methods. The effects of PLP on physical and emotional function were variable, with 73% stating that there were no effects. Ten percent attributed sleep dysfunction to the presence of phantom phenomena, and 16% mentioned a collection of biosocial effects (e.g., keeping away from people when the pain is bad) caused by the phantom phenomena. Eighteen percent specified that at times they were depressed by having phantom phenomena, and 23% sometimes became anxious because of their presence. The different types of postamputation phenomena experienced by our patients are listed in Table 3. Four said that they did not feel a phantom. Of those who did experience a phantom, 85% stated it was the normal size and 86% described it in a normal position for that leg. Fewer had kinesthetic sensations,
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with 38% saying that the phantom moved by itself, whereas 43% were able to move the phantom limb themselves. Exteroceptive sensations were felt by 68%, with the largest number describing these as ‘‘itch’’ (45%), ‘‘pins and needles’’ (15%), and ‘‘tingling’’ (13%), but in total 18 descriptors were used, including ‘‘tightness,’’ ‘‘numbness,’’ and ‘‘twitching’’ (5%); ‘‘tickling,’’ ‘‘stiffness,’’ ‘‘cold,’’ ‘‘electric shock,’’ ‘‘burning,’’ and ‘‘aching’’ (all 4%); and ‘‘cramping’’ and ‘‘irritation’’ (2%); ‘‘throbbing,’’ ‘‘crushing,’’ ‘‘squeezing,’’ and ‘‘gripping’’ were also used to describe the feeling in the phantom. Gender Comparisons No differences were found between male and female amputees other than the use of the exteroceptive descriptor ‘‘electric shock’’ to describe the phantom. Women were more likely to use the phrase ‘‘electric shock’’ (p ¼ .016). Healed/Unhealed Wounds The only difference between those with healed and unhealed stump wounds was that outpatients with unhealed wounds were less likely to have PLP (p ¼ .007). Fifty percent of the outpatients with healed wounds had stump pain.
DISCUSSION This was an evaluation of the postamputation phenomena of a homogenous sample of lower limb amputees who required their amputation as a result of dysvascularity. It is clear that the majority had pain before amputation; the pain was of high intensity and was often present for an extensive period. No link was found between the presence, intensity, or duration of preamputation pain and the presence of postamputation PLP in this group. This backs up the results from two prospective studies; one recruited 59 lower limb amputees and found that preamputation pain was only weakly associated with the presence of PLP (Richardson, Glenn, Horgan, & Nurmikko, 2007), and the other was a mixed group of 85 amputees that found no link between PLP and preamputation pain (Bosmans, Geertzen, Post, van der Schans, & Dijkstra, 2010). Another cross-sectional study that used stepwise logistic regression in a mixed population of 536 amputees also found no link between preamputation pain and PLP (Dijkstra, Geertzen, Stewart, & van der Schans, 2002). This may also go some way to explain why the results of using epidural analgesia to control pain before amputation to try to reduce the prevalence of PLP have been equivocal (Jahangiri, Jayatunga, Bradley, & Dark, 1994; Nikolajsen, Ilkjaer,
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Christensen, Kroner, & Jensen, 1997). In contrast, a prospective study of 57 lower limb amputees suggested that preamputation pain is associated with long-term PLP (up to 2 years after surgery) (Hanley et al., 2007). Because many amputees say that their PLP feels similar to their preamputation pain, it may remain prudent to continue to explore the benefits of good preamputation pain management. PLP prevalence in this group is 63%, which is low in comparison with recent studies (Clark et al., 2013; Ephraim, Wegener, MacKenzie, Dillingham, & Pezzin, 2005; Richardson et al., 2006), and there was a statistical difference between inpatients and outpatients (p ¼ .001), with the outpatients more likely to have PLP. This suggests that PLP prevalence increases over time, which is in direct conflict with the commonly stated belief that PLP reduces over time (Kulkarni, 2008; Weeks, Anderson-Barnes, & Tsao, 2010); however, another interpretation could be that some of the inpatients may have been unable to differentiate between postoperative pain and PLP or that the postoperative analgesia they were taking masked the PLP and thus the perception of PLP was delayed. More evidence is needed to resolve this issue, including exploration of the effects of different analgesics in the preamputation and early postamputation period. When present, the mean PLP intensity was lower than the preamputation pain caused by dysvascular disease (5.5 vs. 7.9). Most stated that their PLP was fluctuant in nature, with the vast majority (73%) experiencing more than one episode per day. Furthermore, although the majority (61%) said that each PLP episode lasted for 10 minutes or less, 22% identified that PLP was present for at least 30 minutes each episode. The fluctuant nature of PLP makes it difficult to identify a target for its management. Some patients might prefer reduced intensity, whereas others may wish for fewer episodes per day or that each episode is of shorter duration. No studies have asked an amputee population this question; hence the current literature on management of PLP may not be robust. All new efficacy trials would need to identify the most appropriate outcome measure. Currently pain intensity has been used in most trials (pharmacologic and nonpharmacologic); however, this may not be the best target (Borsje, Bosmans, van der Schans, Geertzen, & Dijkstra, 2004). Onset of PLP was variable in this group, with 20% stating that it occurs immediately, whereas others said that it didn’t occur until days afterward. Although there is a scarcity of literature in this area, the cortical reorganization theory for the mechanism of PLP would advocate that PLP is likely to commence in or around
the time of the amputation (Borsook et al., 1998; Puentes & Marin, 2013). If our results are accepted, then cortical reorganization may not be the only mechanism at play in PLP development. When compared with outpatients with healed wounds, outpatients with unhealed wounds were less likely to have PLP (p ¼ .007). One possible explanation for this is that the wound generates local neurologic responses that interact with PLP pathways to either mask or overlay the PLP, making it difficult for the amputee to differentiate the somatosensory experiences. Wound care after amputation is an important area (Hazelgrove & Rogers, 2002), and it is possible that the PLP experience may change as wounds open or heal. Although there were no statistical differences, more outpatients with unhealed wounds had pain and had higher pain scores before that amputation compared with those with fully healed wounds. A larger sample (n ¼ 25) may have identified a statistical difference. Links have been made between pain and healing (Richardson & Upton, 2010; Solowiej, Mason, & Upton, 2010) and also between pain and immunosuppression (Marbach, Schleifer, & Keller, 1990; Stremmel, Horn, Eder, Dimmler, & Lang, 2005), so it might be as important to try to reduce preamputation pain to maximize the potential for the wound to heal after amputation as it is to try to prevent or reduce PLP in the future. One possible way to do this would be to increase neuropathic pain analgesics before and after amputation. Pain from dysvascular disease is a combination of nociception and neuropathy (Quattrani & Tesfaye, 2003; Veves, Backonja, & Malik, 2008), and in our sample of inpatients only 6% were prescribed analgesia before amputation designed to control the neuropathic pain elements. Despite the fact that PLP is a known postamputation phenomenon that will affect the large majority of people, only a third of our sample had been warned about it before the surgery. It is known that good care of dysvascular patients can reduce the need for amputation (Krishnan, Nash, Baker, Fowler, & Rayman, 2008); however, it would seem logical that the continuation of this work would include preparation for postamputation phenomena, including PLP, for those who go on to require amputation. Analgesic use for PLP appeared evidence based, with 14% using morphine, 45% using pregabalin, and 32% gabapentin. So although PLP was less intense than the preamputation pain, it was still troublesome enough to warrant potent analgesics. It is possible that the reason for the difference in pain before
Postamputation Phenomena after Lower Limb Amputation
amputation and after amputation was the delivery of better-targeted analgesics. There were significant variations in all aspects of postamputation phantom phenomena, including exteroceptive, kinetic, and kinesthetic elements. Eighteen different descriptors were used to describe the sensations in the phantom other than pain. ‘‘Itch’’ was used by 45%, which is consistent with previous studies (Richardson et al., 2006). It is known that pain and itch are related, and current understanding suggests that they utilize similar but adjacent pathways (Schmelz, 2006; Stander & Schmelz, 2006). Itch can affect quality of life (Upton, Richardson, Andrews, & Rippon, 2013). The well-known kinesthetic sensation called telescoping (the foreshortening of the phantom over time) was rare, with 86% declaring the phantom to be the same size as the original leg. Our sample included many new or recent amputations, with the longest time since amputation being 20 months, so it may be that this sample was not able to pick up this phenomenon. There were too few exhibiting signs of telescoping to be able to calculate if PLP reduction was associated with it as is often speculated. Gender differences have been found in many pain studies (Bernardes, Keogh, & Lima, 2008), but we only found a difference between genders in the use of ‘‘electric shock’’ to describe PLP. It is possible that we didn’t have a sufficient number of female participants in the sample to find a difference. There are several reports of a high level of life interference when PLP is present (Jensen et al., 2002; Sinha & Van Den Heuvel, 2011a; Sinha et al., 2011b; van der Schans et al., 2002); however, 73% of our sample stated that phantom phenomena had no effect on them. This could be explained by our low level of rigor in recording these data, caused by the fact that this was carried out in a busy clinical situation and hence time was limited. The amputees were asked a single question about what effects the phantom phenomena had on their life, whereas other studies have used quality-of-life questionnaires. It is
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also possible that our sample was different than other samples in that it was a general clinical sample and others (it is not always clear) may have been from pain or other specialist clinics. Stump pain prevalence was recorded as 50%, which is similar to previous studies (Hunter, Katz, & Davis, 2008; Richardson et al., 2006) and reinforces the need to differentiate between pains when considering treatment options. Limitations The analyses carried out here were performed to help us get a better understanding of our population, and the results need to be viewed with that in mind. The sample size is relatively small and the comparative statistics were often undertaken between groups of unequal size. The findings could also have been influenced by selection and recall bias.
CONCLUSIONS Having undertaken this evaluation, our team is closer to understanding the needs of our service users. It is clear that postamputation phenomena are implicated in biopsychosocial consequences and the next step is to start to build pathways of care taking these into account. This would include a formalized preamputation program that introduces prospective amputees to the notion of postamputation phenomena, including but not limited to PLP (Hakimi, 2009). Postamputation rehabilitation should then incorporate an understanding of how postamputation phenomena influence physical recovery, such as with use of prosthetics (Raichle et al., 2008), as well as psychosocial support (Bj€ orkman et al., 2012). Acknowledgments The authors have used the term amputee to mean a ‘‘person with limb loss.’’ Amputee has been used to save words and there is no intended pejorative meaning behind its use. We would like to thank all the patients who took part in our study and all the MDT members.
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Jahangiri, M., Jayatunga, A. P., Bradley, J. W., & Dark, C. H. (1994). Prevention of phantom pain after major lower limb amputation by epidural infusion of diamorphine, clonidine and bupivacaine. Annals of the Royal College of Surgeons of England, 76(5), 324–326. Jensen, M. P., Ehde, D. M., Hoffman, A. J., Patterson, D. R., Czerniecki, J. M., & Robinson, L. R. (2002). Cognitions, coping and social environment predict adjustment to phantom limb pain. Pain, 95(1-2), 133–142. Krishnan, S., Nash, F., Baker, N., Fowler, D., & Rayman, G. (2008). Reduction in diabetic amputations over 11 years in a defined U.K. population: Benefits of multidisciplinary team work and continuous prospective audit. Diabetes Care, 31(1), 99–101. Kulkarni, J. (2008). Post amputation syndrome. Prosthetics & Orthotics International, 32(4), 434–437. Marbach, J. J., Schleifer, S. J., & Keller, S. E. (1990). Facial pain, distress, and immune function. Brain, Behavior, & Immunity, 4(3), 243–254. Nikolajsen, L., Ilkjaer, S., Christensen, J. H., Kroner, K., & Jensen, T. S. (1997). Randomised trial of epidural bupivacaine and morphine in prevention of stump and phantom pain in lower-limb amputation. Lancet, 350(9088), 1353– 1357. Nikolajsen, L., & Jensen, T. S. (2001). Phantom limb pain. British Journal of Anaesthesia, 87(1), 107–116. Osterman, H. (1997). The process of amputation and rehabilitation. Clinics in Podiatric Medicine & Surgery, 14(4), 585–597. Puentes, A., & Marin, E. (2013). Very early phantom limb pain following amputation of a lower extremity: Case report. Columbian Journal of Anesthesiology, 41(3), 236–239. Quattrani, C., & Tesfaye, S. (2003). Understanding the impact of painful diabteic neuropathy. Diabetes Metabolism Research and Reviews, 19, s2–s8. Raichle, K. A., Hanley, M. A., Molton, I., Kadel, N. J., Campbell, K., Phelps, E., Ehde, D., & Smith, D. G. (2008). Prosthesis use in persons with lower and upper-limb amputation. Journal of Rehabilitation Research & Development, 45(7), 961–972. Richardson, C. (2008). Nursing aspects of phantom limb pain following amputation. British Journal of Nursing, 17(7), 422–426. Richardson, C., Glenn, S., Horgan, M., & Nurmikko, T. (2007). A prospective study of factors associated with the presence of phantom limb pain six months after major lower limb amputation in patients with peripheral vascular disease. The Journal of Pain, 8(10), 793–801. Richardson, C., Glenn, S., Nurmikko, T., & Horgan, M. (2006). Incidence of phantom phenomena including phantom limb pain 6 months after major lower limb amputation in patients with peripheral vascular disease. Clinical Journal of Pain, 22(4), 353–358. Richardson, C., & Upton, D. (2010). A discussion of the potential mechanisms for wound dressings’ apparent analgesic effects. Journal of Wound Care, 19(10), 424–430. Schmelz, M. (2006). Complex interactions between pain and itch. Pain, 124(1-2), 9–10. Sherman, R. A. (1989). Stump and phantom limb pain. Neurologic Clinics, 7(2), 249–264. Sinha, R., & Van Den Heuvel, W. J. (2011a). A systematic literature review of quality of life in lower limb amputees. Disability & Rehabilitation, 33(11), 883–899.
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Sinha, R., van den Heuvel, W. J., & Arokiasamy, P. (2011b). Factors affecting quality of life in lower limb amputees. Prosthetics & Orthotics International, 35(1), 90–96. Solowiej, K., Mason, V., & Upton, D. (2010). Psychological stress and pain in wound care, part 3: Management. Journal of Wound Care, 19(4), 153–155. Stander, S., & Schmelz, M. (2006). Chronic itch and pain: Similarities and differences. European Journal of Pain, 10(5), 473–478. Stremmel, C., Horn, C., Eder, S., Dimmler, A., & Lang, W. (2005). The impact of immunological parameters on the development of phantom pain after major amputation. European Journal of Vascular & Endovascular Surgery, 30(1), 79–82.
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Upton, D., Richardson, C., Andrews, A., & Rippon, M. (2013). Wound pruritus: Prevalence, aetiology and treatment. Journal of Wound Care, 22(9), 501–508. van der Schans, C. P., Geertzen, J. H., Schoppen, T., & Dijkstra, P. U. (2002). Phantom pain and health-related quality of life in lower limb amputees. Journal of Pain and Symptom Management, 24(4), 429–436. Veves, A., Backonja, M., & Malik, R. (2008). Painful diabetic neuropathy: Epidemiology, natural history, early diagnosis and treatment options. Pain Medicine, 9(6), 660–674. Weeks, S. R., Anderson-Barnes, V. C., & Tsao, J. W. (2010). Phantom limb pain: Theories and therapies. Neurologist, 16(5), 277–286. Williamson, V. C. (1992). Amputation of the lower extremity: An overview. Orthopedic Nursing, 11(2), 55–65.
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From the *University of Manchester, School of Nursing, Midwifery and Social Work; †University Hospitals of South Manchester Foundation Trust, Specialized Ability Centre; ‡Central Manchester Foundation Trust, Amputee Outreach Team, Manchester, UK. Address correspondence to Cliff Richardson, PhD, MSc, BSc, RN, Jean McFarlane Building, University of Manchester, Oxford Road, Manchester, M13 9PL, UK. E-mail: [email protected]. uk Received August 14, 2014; Revised October 13, 2014; Accepted October 17, 2014.
ABSTRACT:
To explore the effects of phantom phenomena on a group of dysvascular lower limb amputees. This was a cross-sectional study of dysvascular lower limb amputees. A modified version of the phantom phenomena questionnaire was used to measure the prevalence of phantom phenomena and the effects of those phenomena on daily life. Eighty-nine amputees were recruited. The majority were inpatients (72%) and male (72%). Most had pain before amputation (83%). Sixty-three percent had phantom limb pain. No associations were found between phantom limb pain and preamputation pain (p ¼ .397). Phantom limb pain was present immediately on waking from amputation in 23%. Phantom limb pain is highly fluctuant. It is more likely that phantom limb pain was present with more time passed since amputation (p ¼ .002). Outpatients with unhealed wounds were less likely to have phantom limb pain (p ¼ .007). The effects of postamputation phenomena include sleep loss and social restrictions. These results challenge the belief that phantom limb pain reduces over time as more outpatients reported phantom limb pain than inpatients. Preamputation pain is not linked to the presence of phantom limb pain. The fluctuant nature of phantom limb pain makes its treatment complex. Some may wish intensity to reduce, whereas others may prefer to reduce the number of episodes or duration of each episode instead. More research is needed to clarify the needs of amputees in relation to the postamputation phenomena. Ó 2015 by the American Society for Pain Management Nursing
1524-9042/$36.00 Ó 2015 by the American Society for Pain Management Nursing http://dx.doi.org/10.1016/ j.pmn.2014.10.006
Pain Management Nursing, Vol 16, No 4 (August), 2015: pp 561-569
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BACKGROUND Nearly 6000 major lower limb amputations are performed each year in the United Kingdom as a result of dysvascularity, trauma, infection, neurologic disorders, cancers, and congenital conditions (Health & Social Care Information Centre [HSCIC], 2011/12). Several postamputation phenomena have been reported, including phantom limb awareness (PLA); phantom limb sensations (PLS), such as kinetic, the sensation of movement, and kinesthetic, the sensation of position in space/size; phantom limb pain (PLP); superadded sensation or pain (which includes a feeling that a ring is present on a finger or a previous pain such as an in-growing toenail that is felt in the missing limb); and stump pain (SP) (Richardson, 2008). Links have been made between these sequelae and less favored outcomes such as slowed or reduced rehabilitation (Chadderton, 1978; Esquenazi, 1993; Horgan & MacLachlan, 2004; Houghton, Nicholls, Houghton, Saadah, & McColl, 1994; Osterman, 1997; Williamson, 1992). PLP has also been found to affect an amputee’s quality of life (Jensen et al., 2002; Sinha & Van Den Heuvel, 2011a; van der Schans, Geertzen, Schoppen, & Dijkstra, 2002). Recently a study of lower limb amputees found that quality-of-life scores using the SF-36 (a general health questionnaire) were significantly lower than normative data from the general public (Sinha, van den Heuvel, & Arokiasamy, 2011b). Multivariate regressions identified that PLP, in combination with other factors, predicted low quality of life as measured by the physical component score (PCS) and the mental component score (MCS) of the general health questionnaire, the SF-36 (Sinha et al., 2011b). Additionally PLP has been found to influence employment (Ide, Obayashi, & Toyonaga, 2002) and social position (Husum et al., 2002) and can cause depression (Jensen et al., 2002). When put together, the rehabilitation and qualityof-life issues associated with postamputation phenomena and PLP suggest that they should be a therapeutic priority for ongoing care. However, it is often difficult to fully appreciate the actual patient’s need because most research is undertaken with mixed groups of amputees and it is clear that care needs vary significantly between populations (i.e., upper and lower limb amputees) (Davidson, Khor, & Jones, 2010; Kulkarni, 2008; Richardson, Glenn, Nurmikko, & Horgan, 2006). Additionally, although ‘‘received wisdom’’ and previous reviews hint that phantom phenomena reduce over time, there is little robust evidence to support this assertion, especially in lower limb amputees (Flor, 2002; Nikolajsen & Jensen, 2001;
Richardson, 2008; Sherman, 1989). Variability in amputee populations is further complicated by individual response to the consequences of experiencing amputation and the presence of phantom phenomena (Bj€ orkman, Lund, Arner, & Hyden, 2012); hence, rehabilitation may need to be individually tailored (Casale, Alaa, Mallick, & Ring, 2009). We recently formed a multiprofessional team to better understand the rehabilitation, quality-of-life, and care management issues experienced by people after amputation attending our service. It was clear that we needed to collect more data on our population. Because dysvascularity, or peripheral vascular disease (PVD), is the most common reason for lower limb amputation in our clinic, we chose to focus initially on this group (Kulkarni, 2008). Although dysvascularity appears to be a heterogeneous group, recent results suggest that the postamputation issues do not vary between people with diabetes and without diabetes (Clark, Bowling, Jepson, & Rajbhandari, 2013), so it was considered appropriate to group them together. This paper describes the first step to developing an understanding of the actual care needs of our amputee population.
OBJECTIVES The aim of this study was to identify the prevalence and effects of phantom phenomena in our amputee population, and we had three objectives: To calculate prevalence of all phantom phenomena To identify the effects of phantom phenomena, especially PLP, on the population To explore relationships between phantom phenomena and patient characteristics
METHODS We conducted a cross-sectional analysis of data from consecutive lower limb amputees seen by an amputation specialist nurse, occupational therapist, or physiotherapist. As part of a clinical development the team had commenced use of the phantom phenomena questionnaire (PPQ) (Richardson et al., 2006) to help individuals with their ongoing care; however, it was not possible to make collective and evaluative judgments from the individual interviews. More detailed analysis of the PPQ data was required to make more general population decisions, and this paper describes that process. Because our service covers two large teaching hospitals and community, the amputees were classed
Postamputation Phenomena after Lower Limb Amputation
as inpatient or outpatient. The inpatients were hospitalized for the amputation or for stump/amputation– related treatment. The outpatients were referred for ongoing rehabilitation, including wound care. Once the PPQ was completed, the data were anonymized before analysis. Sample Postamputation inpatients were from two large teaching hospitals and outpatients were from one of the teaching hospital’s subregional disablement services centers (DSC) in the northwest of England. Data from a 9-month period were analyzed. Measures All amputees were interviewed using modified versions of the phantom phenomena questionnaire (PPQ) (Richardson et al., 2006). It can be difficult for amputees to differentiate the different postamputation phenomena, and using the PPQ in a face-to-face discussion enables the practitioner to fully elucidate the difference between phenomena (i.e., PLP and PLS) and ensures accuracy of prevalence, as well as allowing amputees to articulate specifics about their experiences. The PPQ recorded patient characteristics, surgical details, preamputation information, and the presence, frequency, and duration of postamputation phantom phenomena. Topics added to modify the PPQ were as follows: Pre- and postamputation pain numerical rating scores (NRS; 0-10) Analgesic use The effects of phantom phenomena on daily activities (analyzed as frequencies rather than qualitatively)
It was considered that inpatients who had recently undergone amputation or stump revision surgery were going to have different experiences than the outpatients who were undergoing continued rehabilitation. For this reason we performed analyses on the whole group as well as separately on inpatients and outpatients. We did not ask inpatients for an NRS of PLP because we considered that this would be difficult to specifically determine from postoperative pain. Additionally, preamputation analgesia was recorded for inpatients only because it could be confirmed from their medical notes, whereas most outpatients would have needed to rely on memory. Analysis All data were anonymized before analysis. Descriptive analyses and comparative statistical tests were performed. Depending on the data, independent sample
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t tests and Fisher’s exact tests were undertaken to identify statistical differences between groups (p < .05 was accepted as significant). Independent t tests were performed on continuous data, and Fisher’s exact test was undertaken when comparing nominal data. To make meaningful comparisons between nominal and continuous data, we converted the continuous data to dichotomous high and low variables using the mean as the cutoff point between the scores. Cross-tabulation (2 2) was used after conversion of the data and Fisher’s exact test was applied. Our regional DSC treats outpatients with healed and unhealed stump wounds. Unhealed wounds are treated before prosthetic fitting. For these analyses, unhealed wounds were from amputees attending for dressing of a wound.
RESULTS A total of 89 participants who had undergone major lower limb amputation for PVD were included in the analysis. The majority was male (72%) and the mean age was 65.5 (SD 11.4). Seventy-two percent were inpatients. Patient characteristics, including amputation details, are found in Table 1. Time since the amputation ranged from 1 week to 20 months with the mean time between inpatient and outpatient groups being significantly different (p ¼ .001; t ¼ 3.8; df 28.8; equal variances not assumed). Reasons for the amputation were PVD (59%), diabetes and PVD (36%), and diabetes (5%). A large majority (83%) stated that they had pain before the amputation, with the mean pain score reported to be 7.9 (SD 2.8), with 47% recalling their pain to be 10/10. Sixty-four percent had experienced pain for less than 6 months, but nearly a quarter (24%) had been suffering with pain for more than a year (Table 2). The mean length of time that patients had been in pain before the amputation was 3.3
TABLE 1. Patient Characteristics (n ¼ 89) Factor
All Patients Inpatients Outpatients
Gender (Male %) 72 70 Age (Yr)/Mean/SD 65.5/11.4 66.1/12.1 Amputation details (%) Unilateral 95 96 Bilateral 5 4 Below knee 64 59 Above knee 36 41 Time since amputation 2.9/4.6 0.9/1.9 (Month)/Mean/SD
76 63.7/9.3 92 8 76 24 5.3/5.6
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TABLE 2. Pain before and after Amputation
Pain before amputation (%) Pain score before amputation (0-10) Mean/SD Preamputation pain duration (%) >6 months 6-12 months <12 months PLP present (%) PLP pain score (Mean/SD; 0-10) Phantom limb pain (%) Regularity 1-10 per day Duration Up to 10 min Where participants had pain in their phantom* Toes/foot Lower leg Whole leg When the PLP started after amputation Immediately Within hours Within days Longer Stump pain (%)
All Patients
Inpatient
Outpatient
83 7.9/2.8
86 8.2/2.4
75 7.0/3.5
63 13 24 63 —
65 13 22 52 —
61 11 28 92 5.5/0.7
58
63
50
61
61
60
58 29 12
63 28 6
50 30 20
16 4 56 24 —
15 3 76 6 —
18 5 27 50 48
*Because of fluctuations, some gave multiple answers.
months (SD 1.3), with no statistical difference between inpatients and outpatients (p ¼ .20; t ¼ 1.3; df 22.8; equal variances not assumed). The preamputation analgesic profile for the inpatient group (n ¼ 63) is shown in Figure 1. Analgesic effect before amputation was variable, with 58% stating that the relief obtained was less than 5/10 on a 0-10 numerical rating score (0 ¼ no relief and 100 ¼ full relief). Sixty-seven percent said that they had not been told about PLP before the amputation. Twenty-three of the 25 outpatients (92%) and 32 of the 62 inpatients
FIGURE 1. - Pre-and Post-amputation analgesia (%). (Some were taking more than one analgesic)
(52%) had PLP (p ¼ .001), making a prevalence of 63% in our population. An association was found between the presence of PLP and the time (high/low) since amputation (p ¼ .002); the more time passed since the amputation, the more likely the patient was to have PLP. No association was found between PLP presence and the presence of preamputation pain (p ¼ .397), preamputation high/low pain score (p ¼ 1.00), the length of time (high/low) that they had been in pain before the amputation (p ¼ .661). The mean PLP intensity was 5.5 (SD 0.7) (Table 2). There was a wide variation in the regularity of the PLP, with 6% of the whole cohort reporting that it was continuous rather than fluctuant. Of those experiencing fluctuant PLP, the most common number of episodes per day was 1-9, with 65% experiencing more than 1 episode a day. One person was unable to categorize the regularity because it was so variable. The duration of each episode was also variable, with 61% stating that each episode lasted up to 10 minutes; however, 22% experienced episodes that lasted more than 30 minutes each time. These profiles were similar for inpatients and outpatients. Onset of PLP was also variable. PLP was present immediately on waking from surgery in 16% of the amputees, whereas 80% suggested that it commenced
Postamputation Phenomena after Lower Limb Amputation
TABLE 3. Postamputation Phenomena (% Unless Otherwise Noted) Phantom awareness Phantom size Same as normal leg Telescoped Kinesthetic sensations Normal position Abnormal position Both at different times Kinetic sensations Moves on its own Can be moved Superadded sensations—mainly the feeling of leg being clothed Exteroceptive sensations Present Mentioned by more than 10% Itch Pins and needles Tingling
96 85 15 86 7 7 38 43 31 68 45 15 13
days or longer after the surgery. No difference between inpatients and outpatients was found (p ¼ .739). When present, PLP was felt in the phantom toes/foot (58%), the lower leg (29%), or the whole phantom leg (12%). Most (93%) were taking analgesics for their PLP, with many taking a combination of analgesics (Fig. 1). Although the largest percentage was using acetaminophen (55%), there were large percentages using anticonvulsants such as pregabalin (45%) and gabapentin (32%). Morphine was being used by 23% of the participants overall, with 14% of outpatients using it for PLP. Apart from analgesia, outpatients identified five other strategies to control their PLP. Overall 24% were using some form of complementary therapy, with massage and moving the phantom noted to be the most frequently used methods. The effects of PLP on physical and emotional function were variable, with 73% stating that there were no effects. Ten percent attributed sleep dysfunction to the presence of phantom phenomena, and 16% mentioned a collection of biosocial effects (e.g., keeping away from people when the pain is bad) caused by the phantom phenomena. Eighteen percent specified that at times they were depressed by having phantom phenomena, and 23% sometimes became anxious because of their presence. The different types of postamputation phenomena experienced by our patients are listed in Table 3. Four said that they did not feel a phantom. Of those who did experience a phantom, 85% stated it was the normal size and 86% described it in a normal position for that leg. Fewer had kinesthetic sensations,
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with 38% saying that the phantom moved by itself, whereas 43% were able to move the phantom limb themselves. Exteroceptive sensations were felt by 68%, with the largest number describing these as ‘‘itch’’ (45%), ‘‘pins and needles’’ (15%), and ‘‘tingling’’ (13%), but in total 18 descriptors were used, including ‘‘tightness,’’ ‘‘numbness,’’ and ‘‘twitching’’ (5%); ‘‘tickling,’’ ‘‘stiffness,’’ ‘‘cold,’’ ‘‘electric shock,’’ ‘‘burning,’’ and ‘‘aching’’ (all 4%); and ‘‘cramping’’ and ‘‘irritation’’ (2%); ‘‘throbbing,’’ ‘‘crushing,’’ ‘‘squeezing,’’ and ‘‘gripping’’ were also used to describe the feeling in the phantom. Gender Comparisons No differences were found between male and female amputees other than the use of the exteroceptive descriptor ‘‘electric shock’’ to describe the phantom. Women were more likely to use the phrase ‘‘electric shock’’ (p ¼ .016). Healed/Unhealed Wounds The only difference between those with healed and unhealed stump wounds was that outpatients with unhealed wounds were less likely to have PLP (p ¼ .007). Fifty percent of the outpatients with healed wounds had stump pain.
DISCUSSION This was an evaluation of the postamputation phenomena of a homogenous sample of lower limb amputees who required their amputation as a result of dysvascularity. It is clear that the majority had pain before amputation; the pain was of high intensity and was often present for an extensive period. No link was found between the presence, intensity, or duration of preamputation pain and the presence of postamputation PLP in this group. This backs up the results from two prospective studies; one recruited 59 lower limb amputees and found that preamputation pain was only weakly associated with the presence of PLP (Richardson, Glenn, Horgan, & Nurmikko, 2007), and the other was a mixed group of 85 amputees that found no link between PLP and preamputation pain (Bosmans, Geertzen, Post, van der Schans, & Dijkstra, 2010). Another cross-sectional study that used stepwise logistic regression in a mixed population of 536 amputees also found no link between preamputation pain and PLP (Dijkstra, Geertzen, Stewart, & van der Schans, 2002). This may also go some way to explain why the results of using epidural analgesia to control pain before amputation to try to reduce the prevalence of PLP have been equivocal (Jahangiri, Jayatunga, Bradley, & Dark, 1994; Nikolajsen, Ilkjaer,
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Christensen, Kroner, & Jensen, 1997). In contrast, a prospective study of 57 lower limb amputees suggested that preamputation pain is associated with long-term PLP (up to 2 years after surgery) (Hanley et al., 2007). Because many amputees say that their PLP feels similar to their preamputation pain, it may remain prudent to continue to explore the benefits of good preamputation pain management. PLP prevalence in this group is 63%, which is low in comparison with recent studies (Clark et al., 2013; Ephraim, Wegener, MacKenzie, Dillingham, & Pezzin, 2005; Richardson et al., 2006), and there was a statistical difference between inpatients and outpatients (p ¼ .001), with the outpatients more likely to have PLP. This suggests that PLP prevalence increases over time, which is in direct conflict with the commonly stated belief that PLP reduces over time (Kulkarni, 2008; Weeks, Anderson-Barnes, & Tsao, 2010); however, another interpretation could be that some of the inpatients may have been unable to differentiate between postoperative pain and PLP or that the postoperative analgesia they were taking masked the PLP and thus the perception of PLP was delayed. More evidence is needed to resolve this issue, including exploration of the effects of different analgesics in the preamputation and early postamputation period. When present, the mean PLP intensity was lower than the preamputation pain caused by dysvascular disease (5.5 vs. 7.9). Most stated that their PLP was fluctuant in nature, with the vast majority (73%) experiencing more than one episode per day. Furthermore, although the majority (61%) said that each PLP episode lasted for 10 minutes or less, 22% identified that PLP was present for at least 30 minutes each episode. The fluctuant nature of PLP makes it difficult to identify a target for its management. Some patients might prefer reduced intensity, whereas others may wish for fewer episodes per day or that each episode is of shorter duration. No studies have asked an amputee population this question; hence the current literature on management of PLP may not be robust. All new efficacy trials would need to identify the most appropriate outcome measure. Currently pain intensity has been used in most trials (pharmacologic and nonpharmacologic); however, this may not be the best target (Borsje, Bosmans, van der Schans, Geertzen, & Dijkstra, 2004). Onset of PLP was variable in this group, with 20% stating that it occurs immediately, whereas others said that it didn’t occur until days afterward. Although there is a scarcity of literature in this area, the cortical reorganization theory for the mechanism of PLP would advocate that PLP is likely to commence in or around
the time of the amputation (Borsook et al., 1998; Puentes & Marin, 2013). If our results are accepted, then cortical reorganization may not be the only mechanism at play in PLP development. When compared with outpatients with healed wounds, outpatients with unhealed wounds were less likely to have PLP (p ¼ .007). One possible explanation for this is that the wound generates local neurologic responses that interact with PLP pathways to either mask or overlay the PLP, making it difficult for the amputee to differentiate the somatosensory experiences. Wound care after amputation is an important area (Hazelgrove & Rogers, 2002), and it is possible that the PLP experience may change as wounds open or heal. Although there were no statistical differences, more outpatients with unhealed wounds had pain and had higher pain scores before that amputation compared with those with fully healed wounds. A larger sample (n ¼ 25) may have identified a statistical difference. Links have been made between pain and healing (Richardson & Upton, 2010; Solowiej, Mason, & Upton, 2010) and also between pain and immunosuppression (Marbach, Schleifer, & Keller, 1990; Stremmel, Horn, Eder, Dimmler, & Lang, 2005), so it might be as important to try to reduce preamputation pain to maximize the potential for the wound to heal after amputation as it is to try to prevent or reduce PLP in the future. One possible way to do this would be to increase neuropathic pain analgesics before and after amputation. Pain from dysvascular disease is a combination of nociception and neuropathy (Quattrani & Tesfaye, 2003; Veves, Backonja, & Malik, 2008), and in our sample of inpatients only 6% were prescribed analgesia before amputation designed to control the neuropathic pain elements. Despite the fact that PLP is a known postamputation phenomenon that will affect the large majority of people, only a third of our sample had been warned about it before the surgery. It is known that good care of dysvascular patients can reduce the need for amputation (Krishnan, Nash, Baker, Fowler, & Rayman, 2008); however, it would seem logical that the continuation of this work would include preparation for postamputation phenomena, including PLP, for those who go on to require amputation. Analgesic use for PLP appeared evidence based, with 14% using morphine, 45% using pregabalin, and 32% gabapentin. So although PLP was less intense than the preamputation pain, it was still troublesome enough to warrant potent analgesics. It is possible that the reason for the difference in pain before
Postamputation Phenomena after Lower Limb Amputation
amputation and after amputation was the delivery of better-targeted analgesics. There were significant variations in all aspects of postamputation phantom phenomena, including exteroceptive, kinetic, and kinesthetic elements. Eighteen different descriptors were used to describe the sensations in the phantom other than pain. ‘‘Itch’’ was used by 45%, which is consistent with previous studies (Richardson et al., 2006). It is known that pain and itch are related, and current understanding suggests that they utilize similar but adjacent pathways (Schmelz, 2006; Stander & Schmelz, 2006). Itch can affect quality of life (Upton, Richardson, Andrews, & Rippon, 2013). The well-known kinesthetic sensation called telescoping (the foreshortening of the phantom over time) was rare, with 86% declaring the phantom to be the same size as the original leg. Our sample included many new or recent amputations, with the longest time since amputation being 20 months, so it may be that this sample was not able to pick up this phenomenon. There were too few exhibiting signs of telescoping to be able to calculate if PLP reduction was associated with it as is often speculated. Gender differences have been found in many pain studies (Bernardes, Keogh, & Lima, 2008), but we only found a difference between genders in the use of ‘‘electric shock’’ to describe PLP. It is possible that we didn’t have a sufficient number of female participants in the sample to find a difference. There are several reports of a high level of life interference when PLP is present (Jensen et al., 2002; Sinha & Van Den Heuvel, 2011a; Sinha et al., 2011b; van der Schans et al., 2002); however, 73% of our sample stated that phantom phenomena had no effect on them. This could be explained by our low level of rigor in recording these data, caused by the fact that this was carried out in a busy clinical situation and hence time was limited. The amputees were asked a single question about what effects the phantom phenomena had on their life, whereas other studies have used quality-of-life questionnaires. It is
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also possible that our sample was different than other samples in that it was a general clinical sample and others (it is not always clear) may have been from pain or other specialist clinics. Stump pain prevalence was recorded as 50%, which is similar to previous studies (Hunter, Katz, & Davis, 2008; Richardson et al., 2006) and reinforces the need to differentiate between pains when considering treatment options. Limitations The analyses carried out here were performed to help us get a better understanding of our population, and the results need to be viewed with that in mind. The sample size is relatively small and the comparative statistics were often undertaken between groups of unequal size. The findings could also have been influenced by selection and recall bias.
CONCLUSIONS Having undertaken this evaluation, our team is closer to understanding the needs of our service users. It is clear that postamputation phenomena are implicated in biopsychosocial consequences and the next step is to start to build pathways of care taking these into account. This would include a formalized preamputation program that introduces prospective amputees to the notion of postamputation phenomena, including but not limited to PLP (Hakimi, 2009). Postamputation rehabilitation should then incorporate an understanding of how postamputation phenomena influence physical recovery, such as with use of prosthetics (Raichle et al., 2008), as well as psychosocial support (Bj€ orkman et al., 2012). Acknowledgments The authors have used the term amputee to mean a ‘‘person with limb loss.’’ Amputee has been used to save words and there is no intended pejorative meaning behind its use. We would like to thank all the patients who took part in our study and all the MDT members.
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