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
562
Richardson et al.
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
563
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
564
Richardson et al.
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
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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
562
Richardson et al.
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
563
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
564
Richardson et al.
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
