BODY IMAGE AND PROSTHESIS SATISFACTION IN THE LOWER LIMB AMPUTEE

Craig D. Muray and Jezz Fox

Address all correspondence to: Craig D. Murray Department of Psychology Liverpool Hope Hope Park Liverpool L16 9JD UNITED KINGDOM Tel: +44 +151 291 3883 E-mail: [email protected]

BODY IMAGE AND PROSTHESIS SATISFACTION IN THE LOWER LIMB AMPUTEE

Keywords amputee, body image, pain, prosthesis satisfaction

Abstract

Purpose: This study examines the relationship between prosthesis satisfaction and body image in lower limb prosthesis users, and the gendered variations within these relationships. Method: A total of 44 valid responses were obtained to an Internet survey regarding prosthesis satisfaction, body image, and phantom pain. Spearman Rho correlations were calculated for these three domains. Results: Moderate to high negative correlations were observed between Body Image Disturbance and Prosthesis Satisfaction. These were consistent across genders. Other relationships were also revealed, including positive correlations between Prosthesis Satisfaction with hours of use and negative correlations between Prosthesis Satisfaction and pain experience, though strong differences between genders were observed for these. The length of time for which respondents had had their prosthesis bore little relation to other variables. Conclusion: The present research is instructive of the close relationship between body image and prosthesis satisfaction, as well as gender variations in these relationships, in

lower-limb prosthesis users. These findings have implications for targeted service provision in prosthetic rehabilitation.

Introduction

Prosthetic limbs are commonly used by people with limb loss (acquired amputation) and limb absence (congenital deficiency) to restore or imbue some of the function and/or cosmesis of an anatomical limb. Both people with acquired amputations and people with congenital limb absence will be encouraged to use prostheses by a variety of professionals as part of a rehabilitation process.1-4 However, published research on the levels of prosthesis use among those with a lower limb amputation varies considerably.5-7

The incidence of lower-limb amputations is 11 times greater than that for upper-limb amputation8, and the majority of all amputations occur in older adults9, most frequently as a complication of diabetes mellitus.10-12 However, amputations are also carried out for a number of other reasons, including congenital limb deficiency, vascular insufficiency, cancer, and traumatic injury. Although amputees face major physical, social, and emotional adjustments, adaptation varies widely between individuals.13-14

Rybarcyzk, Nyenhuis, Nicholas, Cash and Kaiser15 note that anecdotal reports have suggested a relationship between a negative body image and psychological maladjustment to a leg amputation.16-18 An early study19 found that when the projective Draw-A-Person Test was given to people who were rated as poorly adjusted to their amputation, they drew the missing limb as either larger or more exaggerated than individuals who were well adjusted. It has been suggested that amputees who express dissatisfaction with their prostheses may be doing so as a form of denial or as an excuse for an inability to cope with the prosthesis, 20-21 while Ham and Cotton22 found that fewer emotional problems, and better social integration, were associated with trouble-free use of a prosthesis.23

The relationship of the body image of people with amputations and psychosocial adjustment to a leg amputation has previously been explored.15 Rybarcyzk et al.15 examined whether body image and perceived social stigma were important predictors of psychosocial adjustment to leg amputation, in 112 clients (aged 21-83 years) from 5 prosthetic clinics. Body image was found to be an independent predictor of depression, quality of life, and prosthesis ratings.

Breakey24 also surveyed people with lower-limb amputations to examine their selfperception and psychosocial well-being. A significant correlation was found between body image and life satisfaction, indicating the more negative an amputee feels about his or her body image, the less satisfied he or she is with his or her life. However, Fisher and Hanspal25 found that body image disruption, anxiety and depression were

generally not common in established limb wearers, except for young people with traumatic amputations.

More generally, the relationship between the person with an amputation and prosthesis tends to be narrowly addressed in the available literature in terms of ‘rejection’ and ‘acceptance’ rates,26 with reference to various contributing factors. For instance, Millstein, Heger and Hunter27 propose that for any prosthesis to be accepted and used it must be comfortable, functional and have ‘a pleasing appearance’ (p.31). A prosthesis might only be perceived as useful for particular tasks (e.g. work or recreational activities), meaning it is only worn for part of the day.28 If a prosthesis often breaks down, requiring regular repairs, it may be considered too much ‘fuss and bother’ and be rejected.29 Similarly, a high degree of energy expenditure involved in using a prosthesis often militates against its habitual use.30 Finally, the motivations and expectations of the would-be user have sometimes been described as lacking or unrealistic,26 leading to disillusionment and rejection.

Many people who undergo an amputation, and subsequently require a prosthesis, experience a ‘phantom limb’, which is the experience of feeling as though the amputated appendage is still there and intact, or resembling the pre-amputated limb. These phantoms can be painful or non-painful. Burning, cramping, and shooting pains are characteristic of phantom pain, or a pain similar to pre-operative pain, 31-32 whole non-painful phantom sensations have been described as tingling, or itchy.33

Phantom limb pain is an important clinical problem, as it can become intractable, leading to drastic and often unsuccessful surgeries such as further amputation.33 In general, phantom limb pain interferes with rehabilitation, prolonging hospital stays and increasing the number of prosthetic fittings. Correlations between coping with limb loss, body image, and the occurrence of phantom limb pain have been examined.34 Patients who coped better with the loss suffered less from phantom limb pain. A difference was also noted in subjective representation of the body image: patients suffering from phantom limb pain tended to have an image of their bodies as a complete and undamaged entity.

Previous research has produced mixed findings regarding the importance of gender in psychosocial adjustment to amputation and prosthesis use. While one study has found that women were more likely than men to be depressed following an amputation,35 and anoter reported that male gender was linked to greater life satisfaction post-amputation,36 other research has found that gender does not predict levels of psychosocial adjustment.37-39 However, gendered patterns of prosthesis satisfaction and body image disturbance have not yet been examined.

The research discussed above is indicative of the impact that amputation or congenital limb absence may have on a person’s body image, health and well being. Prosthesis use is therefore often important for such persons’ rehabilitation. Consequently, it has been argued that some prostheses can not only restore near normal appearance and form, but can also substantially ‘repair’ the person’s damaged body image.40

However, such claims have not yet been fully explored. Therefore, the present study is an investigation into the relationship between prosthesis satisfaction and body image in lower limb prosthesis users. In addition, the present study seeks to explore any gendered variations which might arise in these relationships.

Method

RESPONDENTS

Respondents were recruited via postings to four Internet discussion groups. Over a period of four weeks, 46 responses were obtained via a web-site (see materials section below for details). Two respondents did not indicate their type of amputation, and were excluded from the analysis. In total 44 lower-limb prosthesis users (24 males, 17 females, and three people who did not indicate their gender) completed the questionnaire. The mean age of the sample was 42. Respondents reported five different types of limb loss: below knee (n=22), through knee (n=14), above knee (n=6), bilateral limb loss (n=1), and partial foot (n=1). The causes of limb loss in our sample were trauma (n=16), cancer (n=16), congenital limb absence (n=3), peripheral vascular disease (n=2), and diabetes (n=1). Six respondents indicated ‘other’ causes. Respondents had used a prosthesis, on average, for 8.1 years, and had an average daily use of 13 hours.

[Insert Table 1 about here]

MATERIALS

The survey drew upon three established questionnaires: the Trinity Amputation and Prosthesis Experience Scales (TAPES)41; the Amputee Body Image Scale (ABIS)24; and the McGill Pain Questionnaire (MPQ).42 The questionnaire was presented in a single HTML file. Upon submission, responses were recorded into a data file by means of a Perl CGI-Script. The content of each of the three questionnaires is detailed below.

The Trinity Amputation and Prosthesis Experience Scales (TAPES): The TAPES is a multidimensional self-report instrument designed to help understand adjustment to a lower limb prosthesis. It consists of three sections: psychosocial issues, activity restriction, and satisfaction with a prosthesis. The present study utilises the third of these only, which looks at levels of satisfaction with a prosthesis. Respondents were asked to rate 10 different aspects of their prosthesis by responding to statements (e.g. ‘I am happy with the appearance of my prosthetic limb’) on a 5-point scale ranging from strongly agree (5) to strongly disagree (1). The total from this is referred to as Total Satisfaction (10 items) and has three subscales: Functional Satisfaction (5 items), Aesthetic Satisfaction (4 items), and Weight Satisfaction (1 item).41

The Amputee Body Image Scale (ABIS): The ABIS24 is comprised of 20 items that assess how an amputee perceives and feels about his or her body experience. As with the original format, participants were asked to indicate their responses to the questions using a scale of 1 (none of the time) to 5 (all of the time). This scale produces scores that range from 20 to 100, with high scores indicating high body image disturbance (BID). Three of the questions are reverse-scored.

The McGill Pain Questionnaire (MPQ): The McGill Pain Questionnaire (MPQ)42 consists primarily of 3 major classes of word descriptors (sensory, affective and evaluative) that are used by respondents to indicate their subjective pain experience. In its original format, respondents are presented with 80 adjectives in groups, and have to select one from each group that most closely matches their own pain. The chosen categories are then weighted to produce a level of pain score. For the purposes of the present study we have modified this procedure. Here, respondents are asked to pick a maximum of one adjective from each group, and a total pain score is calculated from the number of adjectives chosen (0-20).

ETHICAL CONSIDERATIONS

Conducting research on sensitive topics requires a full consideration of ethical issues. Such issues included making appropriate contact with potential participants, maintaining participants anonymity, and protecting them from harm. These issues were first discussed with members of the researchers’ departmental ethics committee

before agreeing ethical protocols. We provided our personal and a dedicated e-mail address for respondents to make contact with us, should they wish to discuss any unresolved issues.

Results

Descriptive statistics for the main variables under investigation are presented in Table 2 in order to provide an idea of the distribution of the data to the reader.

[Insert Table 2 about here]

In order to gain a full representation of the relationships under investigation, three categories of correlations were undertaken. Firstly, correlations for the whole data-set were examined. Then the same correlations were considered for males and females separately. Whilst producing the desired comparisons, breaking down the data in this manner results in correlations being performed with relatively small samples. These, in turn, require strong correlations in order to achieve significance. Thus, the use of pvalues in interpreting the data may be misleading as it may, for example, lead to meaningful relationships being dismissed as unimportant. Therefore, whilst providing the r & p values in Table 3, the presentation of the results concentrates upon the magnitude of the correlations.

[Insert Table 3 about here]

Body Image Disturbance (BID) for the whole sample was moderately to highly correlated with levels of Prosthesis Satisfaction (Total Satisfaction, r = -.52; Functional Satisfaction, r = -.43; Aesthetic Satisfaction, r = -.40; Weight Satisfaction, r = -.34). A similar pattern of results was also seen for males (Total Satisfaction, r = .51; Functional Satisfaction, r = -.47; Aesthetic Satisfaction, r = -.18; Weight Satisfaction, r = -.30) and females (Total Satisfaction, r = -.60; Functional Satisfaction, r = -.41; Aesthetic Satisfaction, r = -.57; Weight Satisfaction, r = -.55). The largest discrepancy being between the male and female correlations on Aesthetic Satisfaction and Body Image Disturbance.

For the whole population the number of hours use per day was related to Total Satisfaction (r = .39), Functional Satisfaction (r = .48), Weight Satisfaction (r = .21), and Body Image Disturbance (r = -.39), but not Aesthetic Satisfaction (r = .04) nor pain (r = -.09). Caution needs to be exercised in the interpretation as these overall figures for level of use appear to result from stark differences between genders: for comparison r-values are presented for males vs. females, Total Satisfaction r = .15 vs. r = .70, Functional Satisfaction r = .37 vs. r = .74, Aesthetic Satisfaction r = -.29 vs. r = .37, Weight Satisfaction r = -.04 vs. r = .47. For Body Image Disturbance (r = -.46 vs. r = -.29) and pain (r = -.14 vs. r = .07) these gender differences are not apparent.

The length of time with a prosthesis shows little correlation with the other variables except Functional Satisfaction for females (r = .25) and Aesthetic Satisfaction for the whole population (r = -.28) though for the latter there is a large difference between genders (males r = -.44 vs. females r = -.07).

Finally, when considering the relationships between the total pain and the other variables we see low to moderate correlations for the whole population (Total Satisfaction, r = -.19, Functional Satisfaction, r = -.27, Aesthetic Satisfaction, r = .12, Weight Satisfaction, r = -.16, and Body Image Disturbance, r = .21). However, gender differences are apparent for all variables (male r-values vs. female r-values, Total Satisfaction, r = -.35 vs. r = .16, Functional Satisfaction, r = -.43 vs. r = -.13, Aesthetic Satisfaction, r = .05 vs. r = .51, Weight Satisfaction, r = -.35 vs. r = .14, and Body Image Disturbance, r = .27 vs. r = –.09).

Discussion

PROSTHESIS SATISFACTION AND BODY IMAGE DISTURBANCE

For the whole sample, and males and females separately, higher levels of overall satisfaction with their prosthesis were correlated with lower levels of body image disturbance. However, of the three subscales, only higher levels of Functional Satisfaction with a prosthesis were appreciably correlated with lower levels of body

image disturbance for men, while for females higher levels of all three sub-scales were appreciably correlated with lower levels of body image disturbance. Previous research has produced mixed findings regarding the importance of gender in psychosocial adjustment to amputation and prosthesis use.37-39 However, the present research has examined the relationship between body image disturbance and prosthesis satisfaction in men and women and found interesting variations.

The findings reported here are in line with recent qualitative research carried out by one of the authors, 43 where it was found that for male participants the importance of the ‘Functional’ aspects of a prosthesis were related to the ability to continue providing financially for their family, and enabling strenuous activities. However, for female participants in particular, the ‘Aesthetic’ or cosmetic aspects of a prosthesis were important in sustaining a sense of femininity, where being able to continue wearing feminine clothes (e.g. skirts and high heels), and having a prosthesis which looked ‘realistic’ were important. However, in the present research, ‘Functional Satisfaction’ with a prosthesis was also related to a positive body image in females. However, further research is needed in order to ascertain whether the functional requirements of men and women differ in important ways, and hence whether prosthetic rehabilitation has to take place in a gendered fashion.

NUMBER OF HOURS OF PROSTHESIS USE PER DAY

For the whole sample, higher levels of Overall Satisfaction and Functional Satisfaction with a prosthesis, and lower levels of Body Image Disturbance, showed appreciable correlations with higher levels of hourly use per day. However, when the data for males and females was separated, females demonstrated higher, and appreciable correlations between all levels of satisfaction with a prosthesis and number of hours of use per day. Only Functional Satisfaction with a prosthesis was appreciably correlated in this manner for males. These findings contradict those of Gallagher and MacLachlan,41 who found a correlation between Functional Satisfaction and the number of hours per day that a prosthesis was used, but who argued that because of the concealability of an artificial limb, Aesthetic Satisfaction can not be expected to predict prosthetic usage. However, Gallagher and MacLachlan41 did not separate their data to look at gender, and so may have overlooked similar relationships.

A final finding in regards to the number of hours a day that a prosthesis was used is its appreciable relationship with a positive body image for males. Taken together, these findings would appear to highlight the importance, for men, of having a positive body image in prosthetic rehabilitation, while, for females, this reinforces the view that a prosthesis must be more than purely cosmetic but, rather must afford real functional benefits if they are going to be able to use and value them.

PHANTOM PAIN AND PROSTHESIS SATISFACTION

For males, higher levels of Total Satisfaction, Functional Satisfaction, and Weight Satisfaction, were appreciably correlated with fewer chosen pain categories, while for females, higher levels of satisfaction with the Aesthetic aspects of a prosthesis were correlated to a higher number of chosen pain categories. If we treat higher number of chosen pain categories as an indicator of higher levels of experienced phantom pain, it is perhaps unsurprising to find that, for males, the less pain experienced the more they were satisfied with the Functional and Weight aspects of their prosthesis.

However, it is perhaps surprising that the above pattern was not found for females also. One possible explanation, in line with Pucher et al.,34 is that females did not ‘cope’ as well as men with limb loss, and hence experience more phantom pain. The heightened importance given to the Aesthetic aspects of a prosthesis by females could be seen as evidence of this, and a failure to accept an altered body. However, it must be emphasised that the adapted MPQ used here was not intended to provide a ‘measure’ of experienced phantom pain, but, rather, an index of the broad range of descriptors of phantom pain that applied to our participants. Therefore, any relationship between levels of experienced phantom pain and satisfaction with a prosthesis needs to be explored with an alternative approach. However, the present research does suggest a possible, and interesting, gender difference in relation to phantom pain and satisfaction with a prosthesis.

LENGTH OF TIME WITH A PROSTHESIS

Finally, for males Aesthetic Satisfaction showed an appreciable negative correlation with Time With a Prosthesis. This seems to suggest that the needs of users may change over time, and so requirements that were satisfactory at time of fitting will not be later on. The implication of this is that if this need is not monitored and met, prosthesis use may decline and lead to the social isolation and depression described by Williamson et al.14 in people who do not use their prostheses.

Summary and Conclusions

The present research is instructive of the close relationship between body image and prosthesis satisfaction, as well as gender variations in these relationships, in lowerlimb prosthesis users. These findings, such as the heightened importance of the aesthetic components of an artificial limb for females, and the functional aspects for males, have implications for targeted service provision in prosthetic rehabilitation. However, further research is required to identify other influencing aspects in successful prosthesis use, such as the importance of site of amputation (e.g. below knee and above knee), and whether these too have gendered variations. Finally, the finding that males found their prosthesis to be less aesthetically pleasing with the passage of time is indicative that user’s needs and expectations may change and therefore need assessing at frequent intervals.

ACKNOWLEDGEMENTS

The authors would like to thank all the respondents of the survey, as well as Ian Gregson and Wayne Renardson for posting the call for participants on the Listservs they moderate.

References

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TABLE 1: SAMPLE CHARACTERISTICS

Characteristic

n

%

24 17 3

54.5 38.6 6.8

M

SD

Range

41.6

12.9

18-75

8.1

9.4

0.1-40.0

13.0

4.5

0.0-19.0

Gender

Age

Male Female Unknown (years)

Cause of amputation Accident Cancer Congenital Peripheral vascular disorder Diabetes ‘Other’ Type of amputation Below knee Through knee Above knee Bilateral Partial foot

16 16 3 2

36.4 36.4 6.8 4.5

1

2.3 6

22 14 6 1 1

Length of time with prosthesis (years) Daily prosthesis use (hours)

13.6

50.0 31.8 13.6 2.3 2.3

TABLE 2: DESCRIPTIVE STATISTICS FOR PROSTHESIS SATISFACTION, BODY IMAGE, AND PAIN

Total Satisfaction Functional Satisfaction Aesthetic Satisfaction and Weight Satisfaction ABIS Total MPQ Total

Possible Range 10-50

Valid N 44

Mean

Median

Minimum

Maximum 100.0

Lower Quartile 32.0

Upper Std.Dev. Quartile 40.0 11.8

36.8

35.0

19.0

5-25

44

20.9

20.0

7.0

100.0

17.0

22.0

12.8

4-20

44

13.4

14.0

4.0

20.0

11.0

16.0

3.6

1-5

44

2.9

3.0

1.0

5.0

2.0

4.0

1.1

20-100 0-20

44 44

57.0 11.5

57.5 11.5

23.0 0.0

100.0 20.0

42.0 6.5

67.0 18.5

20.9 7.1

TABLE 3. SPEARMAN RANK ORDER CORRELATIONS

Prosthesis Satisfaction Total

Functional Satisfaction Score

Aesthetic Satisfaction Score

Weight Satisfaction Score

Body Image Disturbance

Pain

ALL (valid n=44, except †=43)

MALE (valid n=24)

Body Image Disturbance Pain Hours Of Use Time With A Prosthesis Body Image Disturbance Pain Hours Of Use Time With A Prosthesis Body Image Disturbance Pain Hours Of Use Time With A Prosthesis Body Image Disturbance Pain Hours Of Use Time With A Prosthesis Pain

-.52 ****

-.51 ***

FEMALE (valid n=17, except ††=16) -.60 ***

-.19 * .39 *** -.14 † *

-.35 * .15 * -.18 *

.16 * .70 *** .04 †† *

-.43 ***

-.47 **

-.41 *

-.27 * .48 **** .05 † *

-.43 ** .37 * .06 *

-.13 * .74 **** .25 †† *

-.40 ***

-.18 *

-.57 **

.12 * .04 * -.28 † *

.05 * -.29 * -.44 **

.51 ** .37 * -.07 †† *

-.34 **

-.30 *

-.55 **

-.16 * .21 * -.06 † *

-.35 * -.04 * -.09 *

.14 * .47 * .14 †† *

.21 *

.27 *

-.09 *

Hours Of Use Time With a Prosthesis Hours Of Use Time With Prosthesis

-.39 *** .10 † *

-.46 ** .01 *

-.29 * .09 †† *

-.09 * -.07 † *

-.14 * -.10 *

.07 * .04 †† *

* p>0.05 ** p<0.05 *** p<0.01 **** p<0.001 (Two-tailed)