Manucharian, Stephan R. DHS(c), CP, FAAOP
An approximate number of 1.6 million represented the number of persons living with a limb loss in the United States1 in the year 2005. Forty percent of these individuals underwent a major amputation of the lower limb (excluding the toes). It is projected that the number of amputees will more than double1 by the year 2050. Some of the factors or complications that lead to amputation include cancer, trauma, and congenital limb deficiency; however, the most common factor is peripheral vascular disease (PVD) complications, generally found in the elderly population.2 After a limb loss, the amputees face major adjustments in their emotional, social, and physical lives. Their sexuality is among the aspects that are expected to change.2,3
The review of available literature revealed that very few studies discussed sexuality among amputees. It was conjectured that the sensitive nature of this subject was the cause of such scarcity of available research. In the author’s search of relevant literature on sexuality in people with lower-limb disabilities, patients with spinal cord injuries were included in most studies. This was consistent with the findings by Ide.4
It is important to investigate this topic for healthcare professionals to decide whether sexual counseling should be included in the amputee rehabilitation process. During the rehabilitation process, professionals should get an opportunity to address sexuality because, under normal circumstances, sexual issues of people with physical disability are avoided.
Several factors hinder discussions on sexuality. Earlier studies analyzed by Walters and Williamson2 and Atlas5 reported that many cultures viewed sexuality as a shameful and immoral topic; persons with physical disabilities were believed to deviate from accepted social and sexual scripts that promoted physical attractiveness. Ide4 opined that modern society is not yet free from such attitudes, and many people, with or without a disability, consider sexuality private. Undoubtedly, US society is still preoccupied with human body perfection. Those who do not adhere to these media-fostered standards risk being labeled different. This social pressure must have an influence on the amputees’ subjective well-being. This research analyzed changes in sexual functioning in persons with lower-limb amputations.
Not much research has been done on changes in sexuality because of amputation. Murray6 stated that the issue of sexuality after amputation has been a neglected area of research. Among the causes of such neglect, societal stereotypes might have played a considerable role. Most sexual cultural scripts prefer to exclude people with physical imperfections. Society has also tended to have general dismissive attitudes toward sexuality of physically imperfect and disabled persons.6,7 Able-bodied persons subconsciously experience esthetic anxiety resulting in stigmatizing attitudes toward those with physically disability and, in particular, amputees.8–10 The few studies that exist on the subject are briefly reviewed in this chapter.
Williamson and Walters11 measured predictors of adjustment to amputation in a convenience sample of participants. The researchers assessed the impact of amputation on sexual activity and symptoms of depression. The researchers concluded that marital status (or living as married) was a predictor of a more positive impact on sexual activity. This finding was later repeated by Ide et al.12 Among the factors that were associated with negative impact were 1) less time since amputation, 2) higher frequency of stump pain or discomfort in the prosthesis, 3) feeling that the amputation site was unpleasant to be viewed by the sexual partner, 4) older age, and 5) lower level of education. Depressive symptoms were shown to be largely attributable to the impact of amputation on sexual activity.
In a later study, Walters and Williamson2 analyzed the following factors thought to be predictors of quality of life: 1) standard demographics; 2) factors related to amputation, such as time since amputation, amputation level, and cause of amputation; and 3) sexual satisfaction. The following variables were found to predict higher quality of life among the convenience sample of amputees: 1) sexual satisfaction, 2) lower amputation-related pain level, and 3) higher level of education. Among these variables, sexual satisfaction was the strongest contributor to quality of life. Although the abovementioned study did not find any association between gender and quality of life, Cox et al.13 reported that most women across the age groups researched were more likely to cope with and function with an amputation better than men.
Bodenheimer et al.14 assessed sexuality in persons with lower-limb amputations. The researchers found that most participants reported high interest in sexual functioning, although it was reported that most of the participants experienced some problems across the sexuality domains studied. No relationship was found between sexual functioning and 1) having a prosthesis, 2) having an amputation-related pain, and 3) symptoms of depression. Age had a negative effect on sexual functioning.
Racy,3 in his analysis of psychological adaptation to amputation, stated that sexuality is an area of some anxiety for most amputees that originates from the following sources: 1) fear that the new body will not be accepted by the partner, 2) the loss of function of the missing body part, and 3) the loss of an area of sensation. He continued that although a prosthesis restores the lost function, it is of limited use in the sexual area. The researcher stated that supportive response of the partner in the studied group was the greatest predictor of positive psychological adaptation.
Hogan and MacLachlan,15 in their extensive review of the literature on psychological adjustment to lower-limb amputations, concluded that the studies often yielded conflicting results because of the types of study design used and the measurement instruments that are not always validated. Despite this statement, the researchers found that most studies reported the following factors to negatively affect psychological adjustment to lower-limb amputation: 1) less than 2 years after amputation, 2) lower levels of social support, 3) lower levels of satisfaction with the prosthesis, 4) pessimistic personality, 5) higher level of amputation, and 6) higher level of amputation-related pain.
Many amputees reported altered body image as a limiting factor to their sexuality.16 No studies that specifically examined this association were found. However, Breakey17 concluded in his survey-based research that there was a relationship in lower-limb amputees between their perception of body image and psychological well-being.
Lindau et al.18 examined sexuality among older adults (nonamputees) aged 57 through 85 years. Although the likelihood of being sexually active declined steadily with age both in men and women, many of the participants in the oldest age group (75–85 years) reported having sex two to three times per month. Self-reported health status had positive association with sexual activity. It was also reported that sexual problems were infrequently discussed with physicians.
Similar reports of inadequate sexual counseling were found in studies of amputee population as well. A survey-based research by Ide4 found that although approximately half of the amputee respondents reported having some problems with their sexual function, more often than not, medical professionals did not recognize the sexual issues and the requirements of people with limb amputation. In conclusion, Ide4 suggested that more research was needed to expand the discussion of sexuality in persons with limb amputation. Other researchers share this dissatisfaction with the current state of scientific research on sexuality in amputees. Murray6 wrote, “There is still a need for further research to identify the specific dimensions of sexuality that increase satisfaction, facilitate rehabilitation, and contribute to the quality of life” (p. 126).
DESIGN AND PROCEDURES
The current study is a questionnaire-based prospective study of two independent groups. The data were collected by means of the Changes in Sexual Functioning Questionnaire Short Form (CSFQ-14), mailed or emailed to the potential recipients (see Appendices A and B). The objective was to compile two convenience samples of participants of approximately 50 individuals in each group. Group 1 consisted of participants who were lower-limb amputees; group 2 consisted of participants who were not limb amputees.
The participants’ anonymous responses to the questionnaire were solicited in the following manner. For group 1: 1) the questionnaires were mailed to the existing patients of the Orthopedic Arts Laboratory and 2) a notice of an intended study and a request to solicit responses were posted on two professional listservs: email@example.com and firstname.lastname@example.org; the volunteer respondents then were emailed the questionnaires. After the intended number of questionnaires was received, these were analyzed to determine the general data distribution based on age, gender, and location using US zip codes. On the basis of this preliminary analysis, group 2 was compiled using a commercial direct mail service (www.mailinglist.com). This service allowed purchasing a mailing list of recipients that met specific criteria, such as gender, age, and zip codes. This was an attempt to homogenize both groups.
The anonymous questionnaire data were then statistically analyzed to determine whether a lower-limb amputation alone determined a change (if any) in sexual functioning of the participants. No additional subject participation was required.
The following inclusion criteria were used in selecting appropriate candidates: for group 1, lower-limb unilateral amputees older than 18 years, and for group 2, nonamputees older than 18 years. The final numbers of eligible participants were 51 in group 1 and 38 in group 2. The following demographic data were collected and analyzed in this study: 1) age; 2) gender; 3) marital status; 4) employment status; 5) level of education; 6) level of amputation; and 7) presence of the following conditions: diabetes mellitus, PVD, and hypertension.
A large number of questionnaires that measure sexual function exist.19 Most of these instruments are designed to measure either 1) a specific sexual aspect, such as sex drive construct, 2) sexual function of a particular gender, such as female sexual desire profile. The author of this study selected a tool that was specifically developed to measure sexuality in both genders. The CSFQ-14 is based on the original Changes in Sexual Functioning Questionnaire (CSFQ), a 36-item clinical and research instrument identifying five scales of sexual functioning.20
The CSFQ-14 is a validated tool with proven internal reliability and construct validity; it produces an overall measure of sexual functioning and scores on two sets of scales: a set of five scales corresponding to the following dimensions of sexual functioning: 1) pleasure, 2) sexual desire/frequency, 3) sexual desire/interest, 4) arousal/excitement, and 5) orgasm/completion, and a set of three scales corresponding to the three phases of the sexual response cycle: 1) desire, 2) arousal, and 3) orgasm.20
The author hypothesized that the results of this study would support the inferences of the existing research that amputation status alone negatively affects sexual functioning of the participants.
This study was approved by Fox Commercial Institutional Review Board, Springfield, IL, USA, and was assigned number 100527-001.
The participants of this study consisted of 89 persons: 51 were lower-limb amputees and composed group 1 (amputees), whereas 38 were not amputees and composed group 2 (nonamputees). The mean age of the full sample was 58.96 years (SD, 13.439), and for the amputee and nonamputee groups, the mean ages were 60.10 (SD, 14.639) and 57.42 (SD, 11.652) years, respectively. The characteristics of the sample by amputee-status group are shown in Table 1.
The study operationalized the dependent variable as the score on the CSFQ-14, which reflected the reported levels of sexual functioning. The descriptive statistics for this measure for the sample as a whole and for each amputee-status group, gender group, and gender group within amputee-status group are reported in Table 2.
The distribution of the CSFQ-14 scores for the two amputee-status groups were examined for compliance with the assumptions of analysis of variance (ANOVA), which was the principal method used in the analyses. The distribution for the amputees deviated significantly from normal. If the analysis of these data was to be limited to the simple comparison between the two amputee-status groups, it would be possible to conduct the needed tests using a nonparametric method such as the Mann-Whitney U test. However, the plan for the analysis included a number of multifactorial ANOVAs and analyses of covariance (ANCOVAs). There are no direct nonparametric analogs for such multifactorial procedures. A reasonable response in this situation was to conduct the Mann-Whitney U test to obtain a nonparametric estimate of the significance of the differences between the groups and to use this estimate as a basis for calibrating the significance of the planned parametric tests. The Mann-Whitney U test of the difference in the CSFQ-14 scores between the two amputee-status groups resulted in a p value of 0.062, which is nonsignificant. The ANOVA (parametric) of the CSFQ-14 scores by amputee-status group obtained a p value of 0.09, which is approximately 0.028 higher than the more accurate nonparametric estimate. Thus, if the results of any of the parametric analyses are significant (i.e., p < 0.05), it is likely that the true p value would be even lower.
The initial analysis sought to determine whether the amputee-status groups differed on the dependent variable and whether this difference was moderated by gender. A two-way ANOVA was conducted to address these issues, the results of which are reported in Table 3.
The results of this analysis indicated that neither the amputee-status groups nor the gender groups differed significantly in their mean reported levels of sexual functioning. In addition, the nonsignificant interaction effect indicated that there were no significant differences between the amputee-status groups in the nature or the degree of differences between the gender groups.
Age was considered an important covariate, expected to explain appreciable portions of variance in sexual functioning. Thus, it was conjectured that controlling for the effect of age might permit the effects of amputee status or gender on level of sexual functioning to emerge more clearly. Accordingly, an ANCOVA was conducted, and the analysis was duplicated with the addition of age as a covariate, reported in Table 3. The results of this analysis are reported in Table 4.
The results in Table 4 indicated that with age controlled, the main effects of gender and amputee status were significant, although their interaction remained nonsignificant. It should be noted that controlling for age did not change the order of the CSFQ-14 score means between the amputee-status groups (amputees higher) or between the gender groups (men higher).
Because gender did not interact with amputee status and was merely a separate explanatory factor for level of sexual functioning, indistinguishable in this respect from age, it made more sense to use it as a control factor along with age. Accordingly, the ANCOVA was repeated, this time using both age and gender as control covariates. The results of this analysis are reported in Table 5.
The results in Table 5 revealed that when both age and gender are controlled, the difference in the mean CSFQ-14 scores between the amputee-status groups escaped significance by 1.2%.
The effect of marital status and educational level on the CSFQ-14 score in the entire sample and in each group separately was analyzed with t-test for independent groups. No relationship was found between the educational level and the CSFQ-14 score; marital status appeared to be a predictor of higher CSFQ-14 score only in the nonamputee group (p = 0.006).
The influence of the three comorbidity factors (diabetes, PVD, and hypertension) on the CSFQ-14 score was assessed in the sample to ascertain whether their control changed the degree of difference between the amputee-status groups. The results of this analysis are reported in Table 6, excluding the findings for the three- and four-way interactions because none of them approached significance. Their influence was assessed while controlling for age and gender in an ANCOVA.
The only comorbidity variable that contributed significantly to the explanation of variance in the CSFQ-14 scores was diabetes. This factor had a significant main effect and a significant interaction with amputee status. To clarify the magnitude of its explanatory role, the abovementioned analysis was repeated, including only diabetes among the comorbidity factors, with the results shown in Table 7.
The results in Table 7 demonstrate that diabetes overwhelms amputee status as an influence on level of sexual functioning and, in fact, reduces the influence of amputee status to a state of nonsignificance. An examination of the mean CSFQ-14 scores by group is presented in Table 8, which reveals that the presence of diabetes has almost no effect on the mean CSFQ-14 scores among the nonamputees and a very large effect among the amputees. In fact, the presence of diabetes among the amputees results in a substantially lower CSFQ-14 mean than among the nonamputees, and its absence results in a substantially higher CSFQ-14 mean among the amputees than among the nonamputees. Thus, the effect of diabetes on the CSFQ-14 scores seems to be magnified among the amputees compared with the nonamputees.
The results of the study refuted the research hypothesis that amputation status alone affects sexual functioning. In fact, when controlled for age, the CSFQ-14 score appeared to be significantly higher in the amputee group. The author did not find any associations between the presence of PVD or hypertension and sexual function either in the amputee or in the nonamputee groups. However, the results of this research inadvertently confirmed the findings of a multitude of studies that diabetes mellitus was a strong predictor of reduced sexual function in both men and women. Many previous studies suggested that in men with diabetes, sexual dysfunction was related to somatic and psychological factors, whereas in women with diabetes, psychological factors were more predominant.21–24
It was interesting to observe that the presence of diabetes mellitus affected the sexual function of only the amputee group. It is conjectured that amputations in diabetic patients mostly occur when the disease reaches its advanced stages, therefore affecting more of the vital functions of the body. The corresponding portion of the nonamputee group, although diagnosed with diabetes mellitus, possibly had the disease under better control, therefore avoiding serious medical consequences, one of which is amputation.
The sensitive nature of the survey is a probable cause of low response rate. In the amputee group, 11% of the questionnaires were returned, compared with only 3% in the nonamputee group. The relatively small sizes of the samples most certainly reduced the power of statistical analyses and required larger score changes to reach significance level.
The distribution of the survey was limited to New York City, NY, USA, and some areas of New Jersey; therefore, the correlation of the convenience sample studied with the general population is unknown.
After an amputation, many aspects of daily life begin to change. Amputees are faced with psychological and physical challenges, the effects of which are exacerbated by multiple medical problems associated with most lower-limb amputations because of their vascular causes. Sexuality is certainly one of them. Although the reduction of sexual function is not directly related to lower-limb amputations per se, an indirect relationship exists in patients with diabetes mellitus.
The medical professionals should recognize the needs of the amputee population regarding their sexuality. Although there is a clear tendency for more attention to the quality of life for limb amputees both in academic and medical communities, more research has to be done to determine how issues relating to their quality of life should be addressed.
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KEY INDEXING TERMS: amputation; sexuality
© 2013 by the American Academy of Orthotists and Prosthetists.