http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, Early Online: 1–11 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.946158

RESEARCH PAPER

Perceptions of low back pain in people with lower limb amputation: a focus group study Hemakumar Devan1, Allan B. Carman2, Paul A. Hendrick3, Daniel Cury Ribeiro1, and Leigh A. Hale1

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1

Centre for Health, Activity and Rehabilitation Research, School of Physiotherapy, University of Otago, Dunedin, New Zealand, 2School of Sport & Recreation, Auckland University of Technology, Auckland, New Zealand, and 3Division of Physiotherapy Education, University of Nottingham, Nottingham, UK Abstract

Keywords

Purpose: This study explored the perceptions of people with a lower limb amputation as to important factors contributing to their low back pain (LBP). Method: Semi-structured interviews were conducted (three focus groups and two individual interviews), with 11 participants with lower limb amputation and on-going LBP. The discussions were analysed using the General Inductive Approach. Results: Five major categories were identified with ‘‘uneven posture and compensatory movements’’ of the back perceived to be the main contributor to LBP. ‘‘Fatigue’’ during functional activities and ‘‘prosthesis-related factors’’ may affect the ‘‘uneven movements’’ of the back further leading to LBP. ‘‘Multiple pain conditions’’ (i.e. phantom limb pain, non-amputated limb pain) could influence the pain perceptions contributing to LBP. ‘‘Selfmanagement strategies’’ in the form of maintaining optimal physical fitness and support from health care professionals helped to manage LBP symptoms, thereby assisted in preventing chronicity. Conclusion: The results suggest ‘‘uneven movements’’ of the back affected by ‘‘fatigue’’ and ‘‘prosthesis-related factors’’ may alter the mechanical loading of the spine during functional activities and contribute to LBP. While being physically active helped participants cope with their LBP, identifying and addressing ‘‘uneven movements’’ in the back during the performance of functional activities may be important to devise prevention strategies for LBP.

Amputation, causal beliefs, low back pain, lower limb, risk factors History Received 6 December 2013 Revised 12 July 2014 Accepted 15 July 2014 Published online 4 August 2014

ä Implications for Rehabilitation   

People with lower limb amputation perceive uneven posture and compensatory movements of the back as a major contributor to their low back pain (LBP). Identifying and addressing uneven mechanical loading of the back during functional activities is important to devise prevention strategies for LBP. Advice to stay active and being physically fit helps in positive coping to LBP in people with lower limb amputation.

Introduction A major rehabilitation goal of persons with above-knee (AKA) and below-knee amputation (BKA) is to restore functional independence with their prosthesis [1]. Early prosthetic mobility following amputation is associated with improved physical and mental health outcomes [2]. Further, prosthetic mobility appears to enhance community participation and employment success [2–4]. Despite the improved physical functioning following lower limb amputation, the prevalence of secondary musculo-skeletal conditions such as low back pain (LBP) and osteo-arthritis is increasingly common in this population [5].

Address for correspondence: Hemakumar Devan, M Phty, Centre for Health, Activity and Rehabilitation Research, School of Physiotherapy, University of Otago, Dunedin, New Zealand. Tel: +64 (3) 479 5422. Fax: +64 210 258 8333. E-mail: [email protected]

LBP is a major secondary disability with 1-month prevalence rate ranging between 50 and 80% among persons with a lower limb amputation [6–8]. A prevalence study reported 52% (132/255) of survey respondents with AKA and BKA rated their LBP as ‘‘persistent and bothersome’’ [9]. A recent national survey conducted in persons with AKA reported 38% (36/93) of those with LBP reported on-going LBP in the last 3 years prior to completing the survey [6]. Moreover, studies report that 30–40% of those with LBP suffer from restricted daily activity (household, work and recreational) due to their pain [9,10]. These results suggest the chronic on-going and ‘‘bothersome’’ nature of LBP within this population and its effect on daily life. Such a high prevalence warrants further investigation of the mechanisms of LBP in persons with a lower limb amputation [8,9,11]. Studies exploring the perceptions of patients with LBP in the general population have improved our understanding of causal beliefs [12], nature [13,14], recurrence [15] and management strategies [16] of individuals with LBP. The main cognitive risk

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factors for LBP include pain-related fear, catastrophising, depression and perceptions about their LBP [17]. Among cognitive risk factors, perceptions and causal beliefs of patients with acute LBP were shown to predict disability and clinical outcomes [18,19]. Poor clinical outcomes were reported in patients with acute LBP who perceived that their symptoms would last longer and who had low expectations towards their treatment [19]. The result suggests identifying and addressing patients’ causal beliefs towards LBP could be an important factor for optimal LBP management [19,20]. In the amputation literature, there is a paucity of qualitative research specifically exploring the self-beliefs and perceived contributing factors of LBP. Gaining an understanding of what people with a lower limb amputation think as important factors affecting their LBP will improve our insights on potential causal mechanisms for LBP in this population. Such findings can assist in identifying patients who are at the risk of developing chronic LBP and poor clinical outcomes [19]. Further, this knowledge may help to subgroup patients who are more likely to benefit from interventions [19]. Therefore, the primary purpose of this focus group study was to explore the perceptions of adults with lower limb amputation and LBP as to the factors contributing to and affecting their LBP.

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Table 1. Interview guide. 1. 2. 3. 4.

Tell us a little bit about yourself. Tell us about your LBP. What do you think might be the factor(s) contributing to your LBP? Are there any other factors that affect your LBP?

Probing questions (If they don’t raise the issues mentioned below) 1. Think back when you had LBP, are there any physical activities which specifically increased your LBP? 2. What activities did you have to avoid or modify doing due to your LBP? 3. Can you think of any factors/issues associated with your prosthetic limb that may have increased your LBP? 4. Of all the factors we discussed, which one do you think is the most important factor likely to affect/influence your LBP? On completion of focus groups, 1. Do you think this reflects our discussion today? Have I missed anything out or misunderstood anything? Additional probes 1. That’s interesting, will you explain further? 2. Can you provide us an example? 3. Could you tell us a little more? 4. Is there anything else? 5. Please describe what you mean? 6. I don’t understand, Could you please tell us again? LBP, low back pain.

Methods Design We chose a qualitative study design to explore and understand the perspectives and self-beliefs of the phenomenon under investigation [21,22]. A focus group method was employed as it facilitates inter-active discussion [23,24]. Such inter-active discussions from focus groups are reported to provide in-depth understanding of participants’ views on health and illness [25]. Some of the inherent challenges of focus group discussions include domineering or quiet members, the moderator’s lack of control over the discussions and unnatural setting of the interviews [26,27]. These challenges can be mitigated by active involvement of the moderator throughout the focus group, a small group composition and ensuring interviews occur at a place of convenience for participants [27]. Participants A purposeful sample of participants residing in the Otago region of the South Island of New Zealand was recruited. Participants with unilateral lower limb amputation who were males and females with an age range of 18–70 years, a minimum period of 1 year since amputation and a self-reported history of LBP for at least 3 months in the past 1 year [28] were included. Participants with amputation primarily due to vascular aetiology (e.g. peripheral vascular disease and diabetes) were excluded due to high prevalence of age-related comorbid health conditions and limited prosthetic mobility than those with traumatic amputation [4,29]. Based on self-reports of participants and personal medical history, those with a history of spinal surgery in the past 1 year and presence of serious spinal pathology (e.g. presence of inflammatory, neurological and malignancy conditions) were also excluded. Recruitment A list of potential participants satisfying the inclusion criteria was extracted from the New Zealand Artificial Limb Services (a national regulatory body providing prosthetic services for persons with amputation in New Zealand) database. Potential participants received an invitation letter to participate in the study along with an interview guide (Table 1). Interested participants contacted the

primary investigator (H. D.) by telephone and/or e-mail, eligibility for inclusion was checked at this time. Of the 31 participants who volunteered, 19 were excluded as they did not satisfy the inclusion criteria (e.g. no persistent LBP, history of low back surgery and people with bilateral leg amputation). Twelve participants agreed to participate. One participant did not attend the session due to work-related reasons, so data were collected from 11 participants. The recruitment process occurred over a 6-week period. The University of Otago Human Ethics Committee (App No: 12/254) approved the study protocol. Data collection Of the 11 participants who volunteered, three focus groups with three participants in each group were conducted. Two participants were unable to attend the focus groups, so we subsequently held individual interviews for them. Participants with the same levels of lower limb amputation (i.e. persons with AKA and BKA) were grouped together to maintain homogeneity within the groups. Because persons with AKA perform compensatory movements at the proximal joints (i.e. hip, pelvis and trunk) during everyday activities as compared to those with BKA [30]. Owing to higher levels of amputation and limited prosthetic mobility, persons with AKA differ from those with BKA in terms of activity performance [31]. Previous LBP prevalence studies have reported higher LBP and disability in those with AKA as compared to those with BKA [7–9]. Based on these preconceptions related to differences in activity performance and LBP disability, we sought to group our participants based on levels of amputation. The focus groups and interviews were held in a place of convenience for participants. Each session lasted between 60 and 90 min. Participant recruitment and data collection ceased at the end of the second individual interview as no new information specific to our research objective emerged. Procedure Participants completed a short questionnaire which asked their demographic details, history of amputation and the presence of comorbid conditions prior to the focus groups. The primary

Back pain perceptions following amputation

DOI: 10.3109/09638288.2014.946158

investigator (H. D.) facilitated the focus group sessions and one of the co-investigators (A. C.) made field notes of the discussions. Each session began with an introduction from the primary investigator outlining the purpose of the group/interview. A semistructured interview technique was utilised (Table 1). The interview guide was developed based on similar qualitative studies conducted in the general population [15,16] and studies exploring phantom limb pain experience in patients with lower limb amputation [32]. The interview guide was pilot tested with two non-disabled controls with LBP and peer reviewed by the members of the research team (H. D., A. C., P. H., and L. H.). On completing the focus groups, the co-investigator summarised the key points of the discussion and asked whether the summary reflected the discussion and any additional points were noted. The primary investigator and co-investigator debriefed together the main points at the end of each session.

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Data analysis All sessions were audio-recorded using a Dictaphone (Sony ICDUX523F) and transcribed verbatim. To maintain anonymity participant names were replaced by pseudonyms in the transcripts. The primary investigator verified all the transcripts with the audio-recordings. The General Inductive Approach [33] was used to analyse the data. Initially, the primary investigator (H. D.) read the raw text multiple times and identified and coded the specific text segments related to research objectives. Further discussion and debate involving the research team resulted in these raw codes being grouped and organised into categories and subcategories. The transcripts were recoded with these categories and subcategories in mind by the primary investigator. One of the coinvestigators (L. H.) read the transcripts independently and checked the consistency of coding and clarity of categories and subcategories. All members of the research team (H. D., A. C., P. H., D. C., and L. H.) then reviewed, discussed and agreed upon the final categories and subcategories. Moreover, the members of the research team developed and reviewed a flow diagram explaining the relationships between the main categories and subcategories from the analysis [33]. Each study participant received a summary of the study results with the final categories and subcategories (member checks) for verification. Of the 11 participants, five participants replied saying that they agreed with the summary of results. As there were no disagreements, it did not have any major modifications to our analysis. In addition, we sent the study summary to a participant with BKA with a history of LBP who was unable to participate in the focus group session and also to a chief prosthetist at the local artificial limb centre to seek further verification. Either of these verification processes requested no changes to study summary. Trustworthiness of the analysis Dependability was achieved by involving all members of the research team in the decision-making process throughout various stages of the study (study planning, data collection and data analysis) [22,34]. Verification of research findings was established by member checks with participants and feedback from non-participants (i.e. the chief prosthetist and participant with BKA) [34]. Members of the research team discussed and reached a consensus for finalising the categories which enhanced the credibility of our findings [33]. Moreover, member checks via presenting the summary of discussion at the end of each interview session and sending the result summary to study participants and non-participants further strengthened the credibility of the findings. To ensure reflexivity, the primary investigator maintained an audit trail of major decisions made during various stages of the study [22]. An audit trail serves as a log for capturing

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researcher’s perspectives and thought processes during the analysis [35]. Moreover, this ensured the potential for an etic perspective from the data emerging during data collection and analysis [35].

Results Participants were predominantly New Zealand European with AKA and BKA with varying years since time of amputation (3 years to 54 years) as described in Table 2. In the first focus group, the spouse of a participant was present because the participant reported communication problems. Participants in all three focus groups were interactive with each other. Selected examples of focus group interactions are presented in Appendix. The group dynamics although differed for each focus group, due to the small sample (n ¼ 3) in each focus group, the moderator had to actively facilitate the interaction among participants. However, as a result of the small groups, participants shared their LBP experiences and their perspectives on potential contributing factors to LBP with ease. At the end of each focus group, participants said that it was a good learning opportunity to share their LBP experience and management strategies among each other. The major categories and subcategories with supportive quotes from the analysis are reported in Table 3. A pseudonym for each participant was given along with an acronym for each focus group and interview for each quote (e.g. FG1 indicates first focus group). The main categories contributing to LBP included ‘‘uneven posture and compensatory movements’’ of the back, ‘‘fatigue’’, ‘‘prosthesis-related factors’’ and ‘‘multiple pain perceptions’’. ‘‘Self-management strategies’’ enabled the participants to manage their LBP symptoms and positively cope with LBP. The inter-relationship between the categories contributing to LBP is illustrated in Figure 1. The categories are presented in detail below. Uneven posture and compensatory movements Most participants felt that uneven posture and compensatory movements occurring in the back and lower limb during everyday activities in the absence of an intact limb were a major contributor to their LBP. While they were able to perform activities of daily living using their artificial limb, they felt they were performing these activities in an uneven manner. The presence of architectural barriers and other injuries occurring at the time of accident also contributed to ‘‘uneven posture and compensatory movements’’ of the back and lower limb. Some of the terms used to describe such compensatory movements were ‘‘unevenness during walking’’, ‘‘unnatural movements’’, and ‘‘vulnerable back’’ (Table 3). I think part of it is that it’s sort of a natural gait, you don’t have a natural gait but even though it’s as good as it can be, you don’t walk naturally. So I think, if I was carrying one bag, one reasonably heavier bag on one side, I’d feel it (back pain) more, it’s just that unevenness (Mary, Int1). The presence of architectural barriers or environmental factors, such as irregular surfaces or obstacles in a crowded situation also influenced the nature of performance of functional activities which led to uneven compensatory movements at the back and lower limb and thus LBP (Table 3). Stepping over things is so frustrating. I rely a lot on my eyesight. It’s better for me to step up with my good leg, so I adjust my pace, probably it could be up to 15 metres out so that I am not having to compensate with my back and step up with the average side, so even you know naturally I have

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Table 2. Participant characteristics.

Pseduonym

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Focus group 1 P1, Ricky P2, Nicola P3, Jason Focus group 2 P1, Markus P2, Chris P3, Sara Focus group 3 P1, Adam P2, Mitchell P3, Gavin Individual interviews Interview 1, Mary Interview 2, Jack

Age (years) gender

Ethnicity

Cause of amputation

Level of amputation

Time since amputation (years)

Work status

Comorbid conditions

62 M 24 F 65 M

NZ European NZ European NZ European

Trauma Congenital Trauma

BKA BKA BKA

6 24 30

Employed Student Retired

No No History of stroke

69 M 61 M 31 F

NZ European NZ European Indian-Fijian

Trauma Tumour Trauma

AKA AKA AKA

54 33 18

Employed Employed Employed

Arthritis Arthritis No

41 M 49 M 68 M

NZ European NZ European NZ European

Trauma Trauma Trauma & vascular

BKA BKA BKA

15 17 3

Employed Employed Retired

No Diabetes Diabetes

54 F 43 M

NZ European NZ European

Trauma Trauma

BKA BKA

13 19

Employed Employed

High blood pressure No

AKA, above knee amputation; BKA, below knee amputation; NZ, New Zealand. Table 3. Main categories from the discussions. Category

Sub-categories

Participant quotes

Uneven movements

‘‘Vulnerable back’’ during lifting

Most people when they lift, they go down on both legs and lift, they keep their backs straight yeah well I’ll be feeling tall, like I bend over you see and you know, and I shouldn’t, you shouldn’t do it. . .when you fellas bend over, you’ve got two legs holding you to stop you, you know we bend over and there’s only one holding us, the other one’s just sitting there and all your weight’s taken on one leg to keep you, to stop you from falling right over. . .and the other one’s just sitting there, can you see where I’m coming from? And that goes up, all that strain goes back up through your back (Marcus, FG2). There’s a lot of lifting in my job and fitting and stretching, not having one of the ankles, you lose a lot of balance and so you do tend to use your back like a crane a lot more than that I did when I had two legs, just ’cause it doesn’t, you haven’t got the balance so you just, you find yourself by necessity bending when I know I should be bending from the knees but I can’t get the lift off a prosthesis in the same way so I could see in the future, there’s liable to be problems (Mitchell, FG3). If you are in a situation in a crowd and you can’t get to use the handrail in the stair to help take some weight and guide you, that can be very uncomfortable, two things, one is because you can’t use the handrail to take a bit of weight, but also I get stressed because I think if I get this wrong and fall in next to these people, I am not gona be very happy about this so may be its both of those (Ricky, FG1). I still find that the worst thing for, I’ll still get a sore back if I sit down very long, for an hour or two hours, an office job wouldn’t suit me at all, like I couldn’t do that (Adam, FG3). . . .find like sitting in a car, I can’t drive to Dunedin myself, I mean ’cause it’s just too far and even sitting in a passenger’s seat, I’m sort of fidgeting around a lot, yeah so you know when you go up to the Limb Centre, you get there and you’re stiff and sore. . . (Mary, Int1). Especially in XX airlines you have to sit in a seat like this big, and if you can’t get your foot in a good place, if u can’t be able to curve or stretch your back all I could do, sitting for longer periods of time is essentially awful, just awful! (Ricky, FG1). Yeah, it’s just probably when I’m lifting something, you know getting something off the ground, I just don’t bend my knees, I just go and grab it and lift it up and just, you know down lower back and then you’re carrying it and it gets sore and then probably when I’m polishing the floor, if I’ve been polishing floors for too long, my back gets, because you’re just over like that a wee bit doing, my back just gets sore (Mitchell, FG3). And fatigue is one thing I know aggravates back pain quite significantly for me get tired and it does increase the chance of challenging and it also contributes with my back pain (Ricky, FG1). Did anybody mention tiredness ’cause I find if I’ve had, like ’cause I work full time and have got a family and everything and I find if I have a day where I’ve done a lot, I kind of drag my leg and I don’t notice it but it seems to affect my back more (Mary, Int1).

Architectural barrier (fear of fall in a crowd situation)

Fatigue

Physical fatigue: Prolonged activity increasing back symptoms (sitting at work and driving)

Prolonged activity increasing back symptoms (sitting while travelling) Prolonged activity increasing back symptoms (lifting/bending)

Mental fatigue

(continued )

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Table 3. Continued

Category

Prosthesis-related factors

Sub-categories

Socket fit affecting the way of walking

Prosthetic alignment influence walking

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Limb-length and LBP

Multiple pain perceptions

PLP severity and LBP

Self-management strategies

Improved fitness and posture awareness

Self-management strategies

Perceptions towards LBP Being proactive in accessing health care services

Other injuries during accident

Participant quotes But at the end of the day you do I do notice it and it’s probably more through my mood I am just so tired (Mary, Int1). Actually with mine I think um I have noticed a difference there ’cause ah with the leg I’ve got for, on now well ___ suction sockets but it’s was, as I said before, it sucked straight onto fibreglass and if you lose weight or in the summer time it gets a bit sweaty it’s losing suction so you’re all the time trying to keep it on as you’re walking and that, used to, became problematic and that, but that did put pressure on your back because you’re walking a different way trying to kick your leg on as well as walk (Jack, Int2). That alignment is certainly, like with the height of the prosthesis is definitely part of it, so it doesn’t take much before you can feel it, I guess the alignment of the foot, get it straight, yeah so you’re not walking sort of duck footed but not too straight otherwise (Jack, Int2). Just that sort of that week that he didn’t actually, he started going to the gym in this particular sneakers and not the ones he has been wearing but the insole is still in the others, his back pain come back, just that tiny tiny difference and pulling out the insole that was in the shoe that was made with and putting the one that was made for him which is just a fraction thicker and I mean it was a fraction thicker the back pain was there just in that period of time (Jason, FG1). If the height is not right yeah, because it doesn’t take much even if it’s a couple a mills off sort of thing like, the load is different (Jack, Int2). Now the first 20 years for me when I was an amputee, I never had any and certainly when you get older, you’re more prone to getting it and if you just, if you get your leg off on an accident like trauma like, it (PLP) seems to be more, more involved, it can actually make your walking hard to do ’cause it’s there all the time in the socket and ah it’s almost a numbing effect sometimes if it’s really bad so it can affect and it drains you. . ..oh now and again I just get a jab and it goes away within half an hour but um, now and then I probably, probably every two months maybe 3 months I might get a severe one which will keep me awake all night (Markus, FG2). Yeah concentrating on my posture, you feel quite silly sitting up too straight sometimes or standing too straight but it really did help, but I felt myself sort of lounging, it definitely antagonised it, so just concentrating on my posture, it’s about the only thing that I’ve really found and it works for me (Adam, FG3). I think if you are a lot fitter and that would help. . .I think exercise does clear your head doesn’t it? Like stress wise wouldn’t it? (Ricky, FG1). And if you don’t think about it (back pain), you don’t feel it. . .So I put up with it (back pain) for all that time. . .. (Jack, FG3). You know like part of the package when you got a limb you are going to get pain here and there. . ..Ah it is it can be really uncomfortable yeah, but you just got to sort of carry on through it. . . (Jack, Int 2). I’ve tried physio as well and while physios have helped with different techniques like you know up against the wall , putting pressure you know up on the wall and that sort of thing. Doing different beds or things in your back, it does tend to help, do that in the morning sometimes if it’s bad and it does help, stretches up, you know that sort of, just to try and straighten your back out a wee bit (Jack, Int2). She (Physio) was brutally honest which was exactly what I needed, I was carrying too much weight and standing lazily which I wasn’t aware of, I had to strengthen myself up and stand correctly (Adam, FG3). But I think a lot of it you know it’s like a wee bit of maintenance really the Physio with the back pain with the odd bit from the limb (Jack, Int2). That was the one(hip joint) that had the accident, the one that the hip, they fixed ’cause it carried the weight for so many years even after it was fixed, it gives me a pain when I’m walking (Gavin, FG3).

LBP, low back pain; PLP, phantom limb pain.

compensated and things like that to alleviate the stress potentially when you get to an obstacle. I know the consequence will be uncomfortable on my hips and uncomfortable on my back so you just adjust (Nicola, FG1). The presence of other injuries during the time of accident, such as a fracture of the intact leg, fracture or concomitant spine injuries, also led to uneven compensatory movements of the back which participants reasoned contributed to their LBP.

When I had my accident they were to fuse some of the vertebrae in top of the spine so my lower back has to compensate I guess for the work in upper back isn’t able to do (Ricky, FG1). Fatigue Participants strongly felt that ‘‘fatigue’’ affected the nature of performing functional activities which also contributed to LBP.

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Figure 1. Perceived contributing factors to low back pain in adults with lower limb amputation.

Fatigue appeared to be a result of both having to be consistently aware of how they moved, leading to mental fatigue, as well as the physical fatigue associated with carrying out sustained activities (Table 3). Participants perceived that performing activities of daily living with an artificial limb made them constantly aware of their posture and movements and this made them feel tired, exacerbating their LBP. As Mary remarked:

Sometimes walking if the leg is not fitting properly probably takes a bit of strain (in the back) with it (Jack, Int2) Some participants reflected on their experience of changing the length of their prosthesis and the impact this had on their LBP (Table 3). You’ve gotta watch too though, the length of the leg as well. That has caused issues over the back pain as well with me. If the leg’s too long or too short or if you have the wrong size shoes on sometimes, it can cause that problem (back pain) I’ve gotta build mine up a wee bit at the back of the heel but you’ve gotta get it set up straight you know (Gavin, FG3).

I never thought about that loss of concentration thing right, yeah because when you’re tired, you’re probably not concentrating so much so you do have to be more aware of how you walk. Well I think I mentioned like tiredness but I don’t know, whether that’s because when you’re tired, your brain gets tired so you just can’t be bothered and so you feel more back pain (Mary, Int1).

Markus, who was a farmer, shared his experience of using a lighter prosthesis for optimal performance of functional activities.

In addition to being aware of movements, participants said that any activity when performed for sustained periods increased their LBP, especially at the end of the day. In particular, prolonged sitting (e.g. at work), standing and adopting a sustained flexed posture (e.g. lifting at work, gardening) commonly increased their LBP (Table 3).

The big heavy ones are terrible things to, they’re heavier fibreglass, they just change things so much to what they used to be. . . I hate walking in a stiff wind, yeah ’cause it can blow you around a wee bit [laughter]. But in saying that, they’re definitely better than the heavy ones. . .But it used to walk for you almost because of the weight (Markus, FG2).

It’s a clerical job so a lot of it is sitting and I find if I’ve had a day where I’m working on the computer and haven’t been able to get out and move around a lot, then that’s definitely a day when I’ll have more back pain (Mary, Int1). If I have walked a lot in a day, yeah I do have back pain during the night time. It was just standing if I’m on my feet all day (Chris, FG2).

A few participants emphasised their concerns of maintaining a healthy weight following amputation. If they had either a rapid weight gain or weight loss, this changed the prosthetic fitting, which could potentially result in uneven movements at the back and thus increase their LBP.

Prosthesis-related factors All participants reflected on their prosthesis as a crucial tool for performing functional activities but also related it to causing LBP by causing uneven compensatory movements in the back and lower limb. Everyone was of the opinion that a good prosthetic fit and length and a lighter prosthesis helped them to perform their functional activities more effectively, which then significantly reduced their LBP (Table 3). One was the action of the foot and the second was the angle the foot actually sit on the ground and so that has reduced my discomfort (back pain) significantly (Ricky, FG1).

I lost weight quite rapidly and it changed everything, because within a space of a month it changed everything I can’t say for the good or bad, because some problems were worse, some problems were better, but exactly what you were saying, a rapid drop in weight horrible (Laughs) (Nicola, FG1).

Multiple pain perceptions A few participants shared their experiences of having multiple pain conditions, for example, phantom limb pain and pain resulting from other injuries during the accident, which sometimes affected the perceptions of their LBP (Table 3). Participants stated that they experienced more incidences of phantom limb pain when they had LBP.

DOI: 10.3109/09638288.2014.946158

I think that (phantom pain) is related to back pain, if my back pain’s worse, then I get, definitely get more incidences of that (phantom pain) where it’s that stabbing pain and if I’ve had a particularly bad day where I’ve been sitting constantly (Mary, Int1). I know that if I get a lot of back pain for whatever reason it might be um especially one that goes down into my hip, then I get the phantom pains they’re quite bad, they can last for 8 hours or more, just this bang and then they go, just wait till next time, I’ve had nights where I haven’t slept so you just can’t ’cause it just grabs you all the time (Chris, FG2).

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Self-management strategies Self-management strategies appeared to help in managing LBP symptoms thereby, in the participants’ opinions, preventing chronicity of the condition. One of the major self-management strategies adopted by this population was improving their fitness (i.e. being physically active and performing regular exercises) would helped them to perform every day activities without fatigue and consequently help them to positively cope with their LBP (Table 3). As Ricky and Mary stated: Over to back pain, I think its fitness, because fitness means you deal with things much better both psychologically and physically. . .I am going to Gym for 2.5 years just over 2 years and I find that has made a big difference as far as it goes to. It has got me a lot fitter and lost quite a bit of weight and now I do a feel lot better (Ricky, FG1). If I’m just busy like if I have a day doing the gardening and then doing things like ’cause I’ve got kids and home and family and we’re sort of constantly doing stuff and I just notice it (back pain) more if I’ve done too much but I don’t let it (back pain) stop me doing anything, you’re probably the same you just get on with it and do it.. (Mary, Int 1). Another self-management strategy for LBP in this population was being proactive in seeking services provided by healthcare professionals (i.e. prosthetist, physiotherapist) who helped them to effectively manage their LBP (Table 3). Participants considered prosthetists were to be helpful in identifying and addressing issues related to prosthetic mobility and prosthetic repairs. The physiotherapists were helpful in administering therapeutic exercises and interventions and educating the participants to maintain a good posture. As Nicola, a participant with congenital amputation said: He (Prosthetist) is been with me since I was born, so he is been through the whole process, and having someone who knows your style of walking, your weight, your tendency, having that long term relationship is so important (emphasises)! (Nicola, FG1).

Discussion This study explored the important perceived contributing factors affecting LBP in a population with a lower limb amputation, and to the authors’ knowledge, is the first such study to do so. Based on the categories identified, these perceived factors appeared multifactorial in nature demonstrating complex inter-relationships between ‘‘uneven posture and compensatory movements’’ of the back during the performance of functional activities, which can be influenced by ‘‘fatigue’’, ‘‘prosthesis-related factors’’, and the presence of ‘‘multiple pain conditions’’ (Figure 1). Although not a contributing factor to LBP, ‘‘self-management strategies’’ helped participants to positively cope with LBP.

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Most participants felt that uneven posture and compensatory movements of the back and lower limb following lower limb amputation could aggravate LBP symptoms. In addition, the presence of environmental barriers posed a significant challenge to prevent a fall, which in turn resulted in protective movement strategies possibly contributing to uneven loading of the back. These perceptions are substantiated by a recent cross sectional study which showed increased lumbar spine rotational movements during walking in persons with AKA with LBP compared to those without LBP [36]. Interestingly, a national survey investigating the environmental barriers encountered by persons with lower limb amputation found those with LBP were more likely to perceive barriers in the physical environment than those without pain (Odds ratio, 1.7; 95% confidence interval, 1.2–2.6) [37]. Given the cross-sectional design of this survey, it is difficult to determine whether the presence of LBP influenced the perception of environmental barriers or whether physical adjustment to barriers caused the LBP; a query which warrants further research. During lifting activities, due to the absence of knee and ankle joints, study participants reported changes in the movement performance (e.g. often lifting from back) and perceived as contributing to their LBP. The only study to investigate the lifting biomechanics in persons with a lower limb amputation found that lifting height and weight influenced the quality of lifting movements as compared to non-disabled controls [38]. However, the effects of lifting biomechanics on LBP in this population remain uninvestigated. In addition, participants perceived other injuries occurring at the time of accident may affect the quality of functional activities performed. Research has found that leg-length discrepancy and reduced mobility (joint stiffness) of the intact leg may result in abnormal joint loading and secondary musculoskeletal disorders (e.g. osteo-arthritis and LBP) [39]. Overall, uneven mechanical loading of the spine during functional activities appears to be a major contributing factor to LBP in this population. Further observational studies are warranted to specifically investigate the spinal compensatory movements during everyday activities in this population. Fatigue appeared to impact on the quality of functional activities performed, which may lead to uneven movements of the back and thus LBP. Participants reported prolonged activities were ‘‘tiring’’ and that they often experienced LBP at the end of the day. These findings possibly suggest signs of increased energy expenditure resulting in physical fatigue. Previous studies have shown increased muscle activity of back, hip, knee, and ankle musculature in the intact and amputated limb compared to nondisabled controls [30,40–42]. Further, studies have shown people with a lower limb amputation expend more energy during walking as compared to non-disabled controls [43,44]. Such sustained muscle activity of the hip and back musculature and resulting increased energy expenditure in this population could predispose to fatigue and contribute to LBP [11]. Another interesting finding was participants’ report of consciously being aware of movements and the environment while performing functional activities. While movement awareness helps to maintain gait symmetry and prevent falling; such extended periods of cognitive activity make participants tired possibly resulting in mental fatigue [45]. Previous studies in the general population have shown physical and mental fatigue may affect motor task performance [46,47]; therefore, it seems plausible that both physical and mental fatigue in persons with lower limb amputation may influence the nature and quality of functional activities performed, potentially affecting the mechanical loading at the back and indirectly contributing to LBP. Major prosthetic factors associated with LBP include leglength discrepancy and type and fit of the prosthesis. According to participants, leg-length discrepancy appears to directly affect the movements at the back and LBP; however, previous studies

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investigating the relationship between leg-length discrepancy and LBP in the amputation literature have shown conflicting results [48–50]. This could possibly be due to differences in measuring leg-length discrepancy in these studies [11]. An observational study concluded that a leg-length discrepancy of greater than 30 mm could influence spinal movement patterns in persons with lower limb amputation [51]. Nevertheless, whether such a difference (430 mm) is clinically significant to cause LBP warrants further research. Another finding from the current study is the socket fit and type of prosthesis which can influence the quality of performance of functional activities. While most participants felt a lighter prosthesis was often more comfortable, the socket fit was equally important to perform functional activities and minimise uneven movements at the lower limb and back. The results concur with a phenomenological study which explored the perceptual experience of upper and lower limb amputation prosthesis users and highlighted the importance of optimal prosthetic fit following amputation [52]. A systematic review concluded vacuum sockets increase the total contact between the residual limb and socket thereby enhancing gait symmetry [53]. In addition, participants felt optimal body weight is important in maintaining the prosthetic fitting. While gaining weight following amputation can theoretically influence spinal health, it may also impact the prosthetic fitting [52] thereby affecting the quality of movements performed. A cross-sectional study in persons with a lower limb amputation identified those with high body mass index reported more incidences of prosthetic repairs [54]. While increased body mass index (obesity) is a potential risk factor for LBP in the general population [55], the effects of high body mass index on LBP warrants further research in this population. Another finding from the current study is the effect of using a prosthetic foot with a different action helped to resolve LBP symptoms in one study participant. Although studies investigating the effects of different prosthetic components (e.g. prosthetic foot and knee joints) on gait symmetry and energy expenditure in this population exist [56,57], the effects of such prosthetic components on LBP are yet to be investigated [11]. The presence of multiple pain conditions appears to affect the LBP perception. For example, a few participants felt when they experienced LBP, they also reported increased occurrence of phantom limb pain. Case reports on spinal pathology (due to tumours/cysts and herniated discs) causing phantom limb pain in persons with lower limb amputation have been reported [58–60]. In addition to phantom limb pain, the presence of other injuries occurring at the time of initial accident (e.g. spine fracture, fracture of intact leg) and secondary musculoskeletal disorders (e.g. osteo-arthritis) suggests the presence of multiple pain conditions in this population. These results concur with the findings of a national survey which reported the presence of at least one multiple pain condition (i.e. phantom limb pain, LBP, non-amputated limb pain) in 95% of the survey respondents with a lower limb amputation [7]. Neuroplastic changes in central pain processing structures are evident following amputation and postulated to contribute to the presence of phantom limb pain [61]. Similar cortical changes involving the emotional learning circuitry (i.e. corticostriatal connectivity) appear to predict the transition from sub-acute to chronic LBP in the general population [62]. Whether these cortical changes together with multiple pain conditions (e.g. phantom limb pain and non-amputated limb pain) contribute to on-going LBP necessitates further research in this population [11]. Self-management strategies in the form of improved physical fitness and being proactive in seeking on-going support from health care professionals help to manage LBP symptoms. In particular, maintaining optimal physical fitness in the form of regular physical activity appears to delay the onset of fatigue

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during functional activities and effectively self-manage LBP symptoms. A recent national survey conducted in New Zealand among persons with AKA concluded no difference in the physical activity levels of those with and without LBP which possibly suggests positive LBP coping strategies in this population [6]. These results concur with our current findings in which participants’ perceived being physically active helped them to better manage and cope with their LBP. A recent prospective study conducted in the general population reported decreased physical fitness was a predictor for the onset of LBP [63]. Although evidence for decreased physical fitness following lower limb amputation is available [64], the relationship between physical fitness and LBP in this population warrants additional investigation. In addition to being physically fit, most participants felt being proactive and maintaining an on-going relationship with service providers (e.g. prosthetist) was crucial for their optimal prosthetic fit, comfort and alignment. These results suggest the participants are in general satisfied with the services provided, which is one of the main predictors for prosthetic mobility and improved functional outcomes [65]. Further, postural training and rehabilitation by physiotherapists enabled them to maintain optimal physical fitness and manage LBP. Strengths and limitations Being the first qualitative study on LBP in people with lower limb amputation, our results provide some interesting insights of participants’ perceptions towards the contributing factors affecting their LBP. Different methods of collecting qualitative data (i.e. focus group and individual interviews) augmented the strength of our findings. Furthermore, field notes, descriptive summary at the end of focus groups, member checks with study participants and non-participants reflect the robustness of our study findings. Nevertheless, one of the limitation of our study is we sought to include participants whose amputation was exclusively due to non-vascular causes (e.g. trauma, tumours, and congenital causes). We excluded persons with lower limb amputation due to vascular reasons (e.g. peripheral vascular disease, diabetes) because they are often older with comorbid health conditions [29,66,67] and relatively less active prosthetic users than those due to non-vascular aetiology (trauma, tumours, and congenital causes) [4,29]. The results from our study are thus not reflective of those with a lower limb amputation due to vascular reasons. Another limitation was despite the efforts to recruit participants from the National Artificial Limb Centre, the number of participants who expressed interest to participate in the study was less than planned. Some of the reasons stated for nonparticipation were difficulty in taking time off work and being unable to travel. We were also unsuccessful in recruiting participants from different ethnic backgrounds. Nevertheless, the small sample of participants from the focus groups and interviews provided an in-depth understanding of important contributing factors affecting LBP in people with a lower limb amputation and after the second individual interview which were held after the three focus groups we felt we had reached a point of data saturation, in that no new information was emerging. Finally, most study participants had on-going chronic LBP and were experienced prosthesis users, they were well adjusted to their prosthesis and living with LBP, future studies exploring the perceptions of those with recent onset LBP and less experienced prosthesis users could further improve our understanding towards putative factors contributing to LBP.

Conclusions The results suggest LBP in persons with lower limb amputation is multifactorial in nature, however, some of the inherent challenges

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confronted by persons with a lower limb amputation accounts for some more prominent factors such as ‘‘uneven posture and compensatory movements’’ of the back, ‘‘fatigue’’, ‘‘prosthesisrelated factors’’ and ‘‘multiple pain perceptions’’ contributing to LBP. Despite the raise in reports of LBP prevalence in recent years [6,68], persons with lower limb amputation employ coping strategies by being physically active and maintaining optimal physical fitness to manage LBP. While the results suggest being physically active may be beneficial, identifying and addressing uneven movements in the back during the performance of functional activities may be important to devise prevention strategies for LBP.

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Acknowledgements We would like to acknowledge Mr Mark MacDowell and Mrs Sue Kennedy from Dunedin Artificial Limb Centre for helping to recruit the study participants. We would also like to thank all the participants for sharing their experience. The University of Otago Ethics Committee approved this study. All participants gave written informed consent before data collection began.

Declaration of interest This study was supported by New Zealand Artificial Limb Services – A national body providing artificial limb services for persons with amputation.

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Appendix

Table A1. Examples of interactive discussions from the focus groups. Discussion 1: About posture awareness and the importance of having adequate limb length of the prosthesis, focus group 3 Moderator: And Adam, there wasn’t that much which sets off your back? Adam: No, no, just the, yeah like I say, the sitting or the um standing lazily from a, like you say, getting a curve in that spine and you can feel yourself standing with a, sort of one hip higher than the other and it’ll just be that curve coming in it doesn’t do it any good at all. . . Gavin: No. Adam: . . .as soon as I, I can straighten myself back up again, it (back pain) disappears with me pretty quick, it’s. . . Gavin: They built one of my sets of shoes up to try and help when they found that difference in my back, they put oh about 5/8ths of an inch build-up on the heel of my shoe and that helped (my back pain). Adam: Yeah, I know they’re very picky down at the Limb Centre with putting the fingers on your hip. . . Gavin: Oh yes, yeah. Mitchell: Yeah. Adam: . . .and making sure you’re, that it’s, you’re . . . Gavin: You’re there to have a job right. Adam: Yeah, getting very close to exactly the same height so yeah, an inch and half’s a big big difference isn’t it [laughter], yeah I think they’ll notice that. Discussion 2: Discussion on the mechanics of a bending movement with the back and LBP, focus group 3 Mitchell: Just bending over and you know, not bending my knees when I pick up stuff at work and that. . . Mitchell: . . .you know I’ll just go, instead of trying to bend my knees but I don’t think I could bend my knee, you know this knee now so. . . Moderator: Ok, so how do you see that Mark, like what do you think is the main factor? Adam: Exactly the same as Mitchell says, it’s, but I really think if we tried to bend from the knees, we would. . . Mitchell: Yeah you’re probably gonna ass over. (continued )

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Table A1. Continued

Adam: Mitchell: Adam: Mitchell:

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Adam: Mitchell: Adam: Gavin: Adam:

. . .we would cause a lot of trouble to the stump anyway. . . Yeah, yeah. . . .it really would, the flexing inside the prosthesis, it would damage the front, in certain situations I think it would just about pop your leg out of joint, it’s that levering, getting right down. . . Yeah because I mean if you try to, I probably can’t do it but I mean if you went down like that, you just feel like you’re gonna fall over. . .( shows lifting by bending the knees) Yeah. . . .so it’s just as easy to go like that, pick up and you know, and just go for it. Yeah, I really think this. . . There’s no answer to it. . . .yeah, yeah, having two legs would be a good start [everyone laughs].

Discussion 3: Discussion about the uneven posture and compensatory movements leading to LBP, focus group 2 Chris: Like the job I had about a year ago, I was up and down all the time, sitting at a computer and then I was standing up, I did a lot of walking and sitting and that wasn’t too bad, it’s the longer periods of time of sitting I feel that’s causing my problem. But also if I’m walking for a long period, obviously it puts stress on my back and then I’ll sit down here for a while and then man trying to get up again, she’s not too good [laughter], you know you think I wished I carried on walking ’cause it wasn’t there. Markus: This is, yeah, I always used to go to the rugby over here yeah and I always like standing on the terrace ’cause I’m tall, I could see [laughter] but I’ve given that over now too ’cause it’s just, yeah you stand there and watch the game, you know 80 minutes and then you come to walk away, yeah oh everything’s sort of seized up, why I don’t know, but I just put it down to my age ’cause I used to be able to do it when I was younger, dunno why I can’t do it now, yeah. Chris: But I think your back’s, as you were saying before, your back’s aren’t straight anymore, they’re all twisted and deformed so they obviously put pressure on different places that shouldn’t be and you’re trying to walk that’s un-natural. Sara: Yeah, yeah. Discussion 4: Discussion related to irregular surfaces and compensatory movement strategies at the back, focus group 1 Jason: Yeah Ricky: The other thing Jason mentioned and that’s the irregular surfaces, for instance you know if you are walking like in a pavement I suppose they are levelled is so much easier on your body compared to walking on a bed of stones Nicola: Stepping over things is so frustrating Ricky: Yeah, because you have a foot which doesn’t have any sensitivity in that, you push foot down on something that is irregular and then all of a sudden that contributes if u haven’t got any time to do anything about it, you sort of committed to put your foot down there and whereas anytime you put your good leg down or your good foot down it compensates, it will move around and your ankle or your foot will tilt or roll to allow for the . . .. . .. . .. . ..did you find that John? Jason: Yeah. Nicola: I rely a lot on my eyesight Ricky: Yes Nicola: Because you don’t feel that, for example If you are crossing a road and you can see the curve coming, I have noticed that I don’t know how it happened and it must be years of practice in my head. It’s better for me to step up with my good leg, so I adjust my pace, probably it could be up to 15 metres out so that I am not having to compensate with my back and step up with the average side, so even you know naturally I have compensated and things like that to alleviate the stress potentially when you get to an obstacle. Ricky: Yeah Nicola: So as far as back I just adjust doing know that I can see ok it’s that far somehow I can make the calculation and step up with the right foot so I change my step back here, it just happens. I know the consequence will be uncomfortable on my hips and uncomfortable on my back so you just adjust.