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Sexual dysfunction after traumatic brain injury


Mary R. Hibbard , Wayne A. Gordon, Steven Flanagan, Lisa Haddad and Ellen Labinsky
Department of Rehabilitation Medicine, Mount Sinai School of Medicine, New York, NY 10029, USA
Objective: The frequency of self reported sexual difculties was examined in a group of 322 individuals with traumatic brain injury (TBI) (N = 193 men; 129 women) and contrasted with reports of sexual difculties in 264 individuals without disability (152 men; 112 women) residing in the community. Physiological, physical, and body images problems impacting sexual functioning were examined individually and then summed into a sexual dysfunction score. Mood, quality of life, health status and presence of an endocrine disorder were examined as predictors of sexual difculties post TBI. Study design: In this retrospective study, data about sexual difculties were analyzed separately for men and women with TBI and without disability. ANOVAs with post hoc analysis for continuous variables, chi-square analyses for categorical variables, and ANCOVAs for predictors of sexual difculties were utilized. Results: When contrasted to individuals without disability, individuals with TBI reported more frequent: (1) physiological difculties inuencing their energy for sex, sex drive, ability to initiate sexual activities and achieve orgasm; (2) physical difculties inuencing body positioning, body movement and sensation, and (3) body image difculties inuencing feelings of attractive and comfort with having a partner view ones body during sexual activity. Additional gender specic TBI ndings were observed. In comparison to gender matched groups without disability, men with TBI reported less frequent involvement in sexual activity and relationships, and more frequent difculties in sustaining an erection; women with TBI reported more frequent difculties in sexual arousal, pain with sex, masturbation and vaginal lubrication. While groups differed in core demographic variables, age was the only demographic variable that was related to reports of sexual difculties in individuals with TBI and men without disability. Age at onset and severity of injury were negatively related to reports of sexual difculties in individuals with TBI. In men with TBI and without disability, the most sensitive predictor of sexual dysfunction was level of depression. For women without disability, an endocrine
NeuroRehabilitation 15 (2000) 107120 ISSN 1053-8135 / $8.00 2000, IOS Press. All rights reserved

disorder was the most sensitive predictor of sexual dysfunction. For women with TBI, an endocrine disorder and level depression combined were the most sensitive predictors of sexual difculties. Conclusion: Individuals post TBI report frequent physiological, physical and body images difculties which negatively impact sexual activity and interest. For men post TBI, predictors of sexual difculties included age at interview, age at injury, and having milder injuries, however, depression was the most sensitive predictor of sexual dysfunctions. For women post TBI, predictors of their sexual difculties included age at injury and having milder injuries, however, depression and an endocrine disorder combined were the most sensitive predictors of sexual dysfunction. Implications of this study include the need for broad-based assessment of sexual dysfunction, and the implementation of treatment studies to enhance sexual functioning post TBI. Keywords: Traumatic brain injury, sexual dysfunction

1. Introduction Sexual dysfunction is often characterized as a disturbance in sexual desire and in psychophysiological changes associated with sexual response cycles. Despite an increased demand for clinical services and pharmacological interventions to treat sexual dysfunction, epidemiological studies of sexual dysfunction within the general populations remain infrequent. Two recent studies have begun to shape an understanding of sexual dysfunction in individuals without physical disabilities, thus providing a foundation with which to contrast the literature, which explores sexual dysfunction after traumatic brain injury (TBI). In an analysis of data from over 3000 individuals aged 1859 in the United States, Laumann et al. [1] examined differing aspects of
Address for correspondence: Mary R. Hibbard, Ph.D., ABPP, Dept. of Rehabilitation Medicine, Mount Sinai School of Medicine, 1425 Madison Ave, Room #L4-21, New York, NY 10029-6574, USA. Tel.: +1 212 659 9374; Fax: +1 212 348 5901; E-mail: mary.hibbard@mssm.edu.

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sexual dysfunction: lack of desire for sex, arousal difculties (i.e., problems with erection in men and lubrication in women), inability to achieve climax or ejaculation, anxiety about sexual performance, premature climaxing or ejaculating, physical pain during intercourse, and nding sex unpleasurable. Taken together, these sexual dysfunctions reect the major symptoms associated with sexual dysfunction within the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM IV) [2]. Laumann and colleagues report that sexual dysfunction was more prevalent in women (43%) than men (31%). Gender, age and marital status were associated with reported sexual dysfunction, i.e., in women, sexual problems decreased with age except for women who experienced inadequate vaginal lubrication; in men, sexual problems increased with age and were associated with increasing problems with erections and lack of desire for sex. Risk factors for development of sexual dysfunction included emotional stress, poor health and reduced quality of life. These authors identied three categories of sexual dysfunction in women: low sexual desire (22%); arousal problems (14%); and pain during sexual activities (7%); and three categories of sexual dysfunction in men: premature ejaculations (21%); erectile dysfunction (5%); and low sexual desire (5%) [1]. In a cross-sectional population study of 1,768 individuals in England, Dunn et al. [3] analyzed reports of sexual dysfunction as related to demographic and medical characteristics. These authors found sexual dysfunction in 34% of men and 41% of women interviewed, with the most common problems being erectile dysfunction in men and vaginal dryness in women. In men, erectile problems and premature ejaculation were again associated with increased age and various medical conditions, e.g., prostrate trouble and hypertension. In women, difculties with arousal, orgasm and sexual enjoyment were associated with the presence of marital difculties, anxiety and depression. The authors concluded that sexual problems cluster with self-reported physical problems in men and psychosocial problems in women [3]. For individuals with TBI, sexual dysfunction has been believed to be more often the rule than the exception [4]. Despite this assertion, minimal attention has been paid to understanding the specic nature or the impact of sexual dysfunction in individuals post brain injury. Animal research has documented the negative effects of brain injury on sexual arousal and response [5]. Medical researchers have related post-TBI changes in sexual functioning to underlying neuroendocrine ab-

normalities secondary to damage to the hypothalamic pituitary (HTP) pathway [68]. Reductions in testosterone levels have been noted in men immediately after onset of TBI [9], and subnormal levels of leuteinizing hormone and follicle stimulating hormone have been detected in men who remain in coma for greater than 2 weeks following TBI [10]. Kosteljanetz and colleagues [11] evaluated sexual, neuroendocrine and cognitive dysfunctions in men with mild TBI (N = 19) who were four years post TBI at time of interview. These investigators noted that 58% of the sample reported sexual dysfunction (reduced libido and/or erectile dysfunction), and 37% had increased plasma concentrations of follicle stimulating hormone, suggesting reduced spermiogenesis. Damage to the HTP axis secondary to TBI may also be found in related neuroendocrine disorders, such as thyroid dysfunction [7,12, 13], dysregulation of body temperature [6,14], and diabetes insipidus [6,7,13,15]. The relationship of these neuro-endocrine disorders to sexual dysfunction in post TBI has been inadequately examined to date. Numerous predictors of sexual dysfunction post TBI have been explored. Factors such as time since TBI [16, 17], severity of TBI [1618], degree of physical independence [19], location of brain injury [10,1921], age at interview [16], availability of a sexual partner [19], mood and quality of life [19] have been examined alone, or in combinations, with inconsistent ndings emerging across studies. A review of this literature reveals that the most frequently studied area of sexual change post TBI is erectile dysfunction in men with reported frequency of this sexual dysfunction varying from 4% to 71% [11,1618,2225]. Injury severity [11,22,23] and time since onset [18,24,25] have been related to the frequency of this disorder with the frequency of erectile dysfunction increasing as duration of time since injury increases. Researchers have begun to examine the frequency of sexual dysfunctions in individuals post TBI several year post onset of injury. OCarroll, Woodrow and Maroun [16] interviewed 36 individuals (30 men, 6 women) who were four years post TBI, and reported that 50% of the men were experiencing sexual dysfunction, with the most common complaint being decreased sexual activity. While severity of TBI was not a predictor of sexual inactivity, age at time of interview and time since TBI were positively related to reports of sexual dysfunction and psychosocial distress. Sandel, Williams, Dellapietra and Derogatis [17] assessed 52 individuals (39 men, 13 women) who were four years post TBI, and noted the most frequent sexual dysfunc-

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tions were reduced sex drive/desire and an inability to achieve orgasm. Time since injury was related to level of sexual dysfunction, in that individuals with a more recent injuries reported greater sexual arousal than did individuals with a greater duration of time since injury. In this study, sexual satisfaction was unrelated to level of cognitive functioning, but was related to lesion location in that individuals with frontal lobe lesions reported greater sexual satisfaction and functioning. Kreuter et al. [19] have conducted the largest study of post TBI sexual dysfunction to date, with 92 individuals with TBI (65 men, 27 women) who were, on average, nine years post TBI at time of interview. Individuals who had been sexually active before the onset of TBI reported signicant changes in sexual functioning post TBI. Respondents in this study reported decreased ability to achieve an erection and decreased ejaculation (30%), ability to experience orgasm (40%), frequency of sexual intercourse (47%) and sexual interest post TBI (16%). Factors related to changes in sexual activity included lack of an available partner (31%), poor selfesteem (15%), a partners unwillingness (11%) and/or feeling unattractive (6%). While sexual desire had remained unchanged for 60% of this group, 5% reported an increase in libido post TBI. Greater sexual satisfaction was related to injury at a younger age, better physical and psychosocial functioning, better rehabilitation outcomes and enhanced mood. Quality of life and cognitive functioning were unrelated to sexual satisfaction, while the occurrence of sexual intercourse, the ability to experience an orgasm and the degree of physical independence were found to signicantly predict sexual satisfaction post TBI. In sum, studies of sexual dysfunction post TBI suggest that changes in sexual function are common. Unfortunately, methodological problems associated with this literature severely limit the current understanding of sexual dysfunction post TBI, namely, small samples sizes, under-sampling of women with TBI, oversampling of men with more severe injuries, the lack of an appropriate non-disabled comparison group, and limited exploration of the full range of potential sexual dysfunctions post TBI. The aim of this exploratory study is to investigate a broad array of sexual issues in a large group of men and women with TBI living in the community. To determine the relative frequency of sexual difculties post TBI, ndings for individuals post TBI will be contrasted with those of individuals without disability. The following questions are addressed:

1. Are self-reports of sexual difculties more frequent in individuals post TBI? 2. Are the predictors of sexual difculties the same for men and for women following TBI? 3. Do reports of sexual difculties reect specic demographic factors (gender, age, race) in individuals with TBI? 4. Do reports of sexual difculties relate to specic characteristics of brain injury (age at TBI, time post TBI, severity of TBI)? 5. Do reports of sexual difculties relate to perceived health issues or the presence of an endocrine disorder in individuals with TBI? 6. Do reports of sexual difculties relate to perceived mood or quality of life for individuals with TBI?

2. Methods 2.1. Subjects The sample consisted of 322 individuals with TBI (N = 193 men; 129 women) and 264 individuals without a disability (152 men; 112 women) who were participants in a quality of life interview (QOLI) conducted by the Research and Training Center (RTC) on the Community Integration of Individuals with Traumatic Brain Injury in New York. To be included in the study, subjects had to be: 1) between the ages of 16 and 64, 2) residents of New York State, and 3) living in the community. For individuals with TBI, three additional criteria were included: 1. Onset of TBI must have occurred at least one year prior to the study. 2. Subjects had to identify themselves both as disabled and as having a brain injury. 3. Brain pathology of non-traumatic origin and other major disabilities (e.g., spinal cord injury) had to be absent. 2.2. Materials and procedures All subjects participated in a structured Quality of Life Interview (QOLI) (National Institute of Disability and Rehabilitation Research Study No. H133B30038) The QOLI explores the extent of an individuals integration into the community, overall quality of life and mood. A major component of the QOLI is a structured health survey, which contains a series of questions about health status across numerous areas of bodily

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functioning. Only those subsets of questions relevant to sexual functioning, endocrine disorders and perceived health are reported herein. In addition, participants reports of depressive symptoms on the Beck Depression Inventory (BDI) [26] and an overall rating of quality of life (QOL) taken from the QOLI were utilized in the present study. 1 The QOLI is based entirely upon self-report, and thus no medical documentation was utilized to validate (or refute) reports of health or sexual difculties. The QOLI was administered to study participants by a team of research assistants, either in person or over the telephone, after obtaining informed consent. Subjects were paid for their participation in the interview. 1) Sexual Function Questions. Within the health component of the QOLI, questions explored sexual interest and functioning: 2 a) Is the respondent currently involved in a meaningful or intimate relationship? b) Had the respondent been sexually active during the past year? and c) Have any of 16 issues affected either interest in, or frequency of, sexual activities? Of the 16 issues, 11 are physiological: energy for sex, sex drive, ability to initiate sex, sexual arousal, pain with sexual activity, ability to masturbate, ability to achieve orgasm, the ability to obtain an erection (men only), the ability to sustain an erection (men only), the adequacy of vaginal lubrication (women only), and vaginal bleeding with sex (women only); three are physical: positioning, control of body movements and sensation; and two are related to body image: feelings of attractiveness, and comfort with having a partner see ones body. All issues identied by a participant as impacting sexual function were further qualied as to the direction of the impact (positive or negative). For purpose of data analysis, issues that negatively impacted sexual functioning were analyzed separately for males and females, by group (TBI vs. No Disability), and then summed into a single sexual dysfunction score for each individual. 2) Endocrine Difculty was dened as the endorsement of the item Are you currently experiencing
1 The reader is referred to Hibbard et al. [27] for a review of other health ndings and to Brown and Vandergoot [28] for a discussion of quality of life following TBI on the basis of the QOLI interview. 2 Sexuality questions were selected and modied from the questionnaire entitled Gynecological and Obstetrical Complications of Spinal Cord (SCI) Females by A. Jackson, M.D., University of Alabama.

an endocrine disorder or problems with your hormones, thyroid or metabolism which interferes with either your daily activities or has caused you to seek medical help?, which was embedded within the component of the QOLI. 3) Rating of Health was dened as the participants response to the rst item of the SF36 [29], which was embedded in the QOLI. In this question, the respondent is asked, In general, would you say your health is . . . and then asked to rate perceived health on a ve-point scale: 1 = excellent to 5 = poor. Higher ratings are indicative of poorer perceived health. 4) Rating of Mood was dened as a participants self-reported level of depressed mood on the Beck Depression Inventory (BDI) [26], which was embedded within the QOLI. For purpose of this study, the libido item from the BDI was deleted to avoid confounding results. Higher scores on this measure are indicative of greater reports of depressive symptoms. 5) Rating of Quality of Life [28] was dened as a participants self-reported rating of overall quality of life (QOL) in the preceding month. This measure was embedded in the QOLI and adapted from Andrews and Withey [30], with QOL rated on a seven-point scale: 1 = terrible to 7 = delighted. Higher scores on this measure are indicative of better ratings of quality of life. 2.3. Statistical analysis Data were analyzed using SPSS 9.0 [31]. Means and standard deviations were generated separately for the TBI Group (TBI Group) and the No Disability Group (ND Group) and separately by gender for all continuous variables (age, age at TBI; time post TBI; ratings of mood, quality of life and health; and total sexual dysfunction scores). One-way analyses of variance (ANOVA) were used to compare means for simple factorial analyses, with Bonferroni post hoc comparisons utilized. Tests of signicance were conducted at a 0.05 level of signicance or greater. Descriptive statistics were used to examine the frequency of each sexual difculty as well as other categorical variables (race, education, endocrine problem, severity of TBI) examined in the study. Chi-square analyses were used to evaluate signicant differences in these data. Spearman correlations were computed to examine the relationship of the sexual difculties to each other, across the four groups studied. Cronbachs alpha coefcients were used to

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examine the internal consistency of sexual difculties across groups. A factor analysis was completed, with one factor identied. This factor was used to create a single measure of sexual dysfunction. The relationship of this sexual dysfunction factor with the continuous predictor variables was examined using correlational analyses, and ANOVAs with post hoc comparisons for categorical predictors. Finally, ANCOVA was utilized to partial out the effects of predictors on this sexual dysfunction factor.

one week) as contrasted to 45% of women, while 18% of men experienced a mild TBI (dened as a period of altered mental state or a loss of consciousness of less than 24 hours) as contrasted to 37% of women. Signicant differences were also found in the age of onset of TBI (F = 4.38, p < 0.001), in that women were signicantly older than men at the time of their injuries. 3.3. Psychosocial and health characteristics of the sample The inuence of co-existing psychosocial and health factors on sexual functioning was examined. Descriptive statistics for self-reported ratings of mood, quality of life, health and the presence of an endocrine disorder in individuals with TBI and without disability are summarized in Table 3. Not unexpectedly, group differences were found in self-reported mood (F = 44.15, p < 0.001), quality of life (F = 20.63, p < 0.001) and health (F = 29.72, p < 0.001), with individuals with TBI reporting signicantly greater depressive symptoms, poorer quality of life and lower ratings of health than individuals without disability. Differences in the frequency of endocrine disorders were found ( = 39.07, p < 0.001) with women reporting more frequent endocrine disorders than men, and women with TBI reporting three times more frequent endocrine disorders when contrasted with reports of women without disability (Female TBI = 19% vs. Female ND = 5%). 3.4. Involvement in sexual activity during prior year Both gender and disability effects were found as related to involvement in sexual activity during the year prior to interview ( = 39.07, p < 0.001), and involvement in an intimate or meaningful relationship ( = 40.78, p < 0.001). As noted in Table 4, signicantly fewer men with TBI (56%) reported involvement in sexual activities when contrasted to men without disability (86%). Women, regardless of group membership, reported slightly lower rates of sexual activity than men, however, the rates of sexual involvement were equivalent for women with TBI (73%) and those without disability (76%). In a similar pattern, signicantly fewer men with TBI reported being involved in a relationship (40%) when contrasted with men with no disability (74%). Women, regardless of group membership, reported higher rates of involvement in relationships, with the rates of involvement equivalent for women with TBI (60%) and those without disability (66%).

3. Results 3.1. Demographic characteristics of the sample Demographic characteristics of the 322 individuals with traumatic brain injury (TBI) (N = 193 men; 129 women) and 264 individuals without disability (152 men; 112 women) who participated in the study are presented separately by gender and disability status in Table 1. The proportion of men and women with TBI (TBI Group) and without disability (ND Group) was equivalent. Differences within the four groups were noted for other demographic characteristics. More specically, differences were found in age at time of interview (F = 9.26, p < 0.001), in that men with TBI were signicantly younger than men without disability, and women with TBI were signicantly older than women without disability. Differences were also found in racial background ( = 16.95, p < 0.05), in that women without disability had greater racial diversity than did women with TBI. The level of education also varied across groups ( = 53.46, p < 0.001), in that men with TBI had lower education levels than did men without disability. These group differences were unexpected, and represent an acknowledged weakness in the study. Subsequent analyses were undertaken bearing in mind these differences when analyzing data about sexual functioning. 3.2. Disability characteristics of individuals with traumatic brain injury Disability characteristics of the individuals with TBI are presented in Table 2. On average, participants were interviewed approximately nine years post TBI, with the time post TBI equivalent for men and women. The severity of TBI varied by gender ( = 15.1, p < 0.001), in that 62% of men experienced a severe TBI (dened as a loss of consciousness greater than

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M.R. Hibbard et al.. / Sexual dysfunction after traumatic brain injury Table 1 Demographic characteristics of sample Men (N = 345) ND Group1 TBI Group2 Sample size N % Age in yearsa sd Racial backgroundb Caucasian Black Hispanic Other Educationc < High School High School High School & Other Training College +
1 ND 2 TBI

Women (N = 241) ND Group1 TBI Group2 112 42% 35.3 12.5 64% 19% 9% 8% 3% 14% 42% 41% 129 40% 40.1 10.2 81% 12% 3% 4% 6% 17% 32% 45%

152 58% 40.8 12.4 78% 12% 6% 4% 3% 11% 29% 57%

193 60% 35.8 10.3 78% 10% 9% 3% 14% 22% 39% 25%

Group = Individuals without disability. Group = Individuals with traumatic brain injury. a Male TBI < Male ND; Female TBI > Female ND. b Female ND > Female TBI. c Male TBI < Male ND. p < 0.05. p < 0.001. Table 2 Brain injury characteristics of individuals with TBI MEN with TBI (N = 193) Duration since TBI onset sd Severity of TBI,a Mild Moderate Severe Age at TBI onset,b sd
a Severity

WOMEN with TBI (N = 129) 9.30 9.17 37% 18% 45% 30.8 12.2

9.64 8.17 18% 20% 62% 26.0 10.8

of TBI where mild is < 1 day loss of consciousness (LOC) moderate is < 1 week LOC, and severe is > one week LOC. Men Severe TBI > Female Severe TBI. b Women TBI > Male TBI. p < 0.001.

3.5. Effects on sexual functioning in individuals with and without TBI Sixteen physiological, physical and body image issues were explored to determine their impact on sexual interest and functioning. When contrasted with individuals without disability, individuals with TBI reported signicantly more sexual difculties across the majority of issues investigated (see Table 5). Both TBI-

specic and gender-specic sexual effects were noted that negatively impacted sexual interest or activity: TBI-specic physiological impacts were noted. Individuals with TBI reported more frequent difculties in energy for sex (Men: TBI > ND, = 6.21, p < 0.01; Women: TBI > ND, = 15.15, p < 0.001), sex drive (Men: TBI > ND, = 4.02,

M.R. Hibbard et al.. / Sexual dysfunction after traumatic brain injury Table 3 Psychosocial and health characteristics of the sample Men ND Group1 TBI Group2 (N = 152) (N = 193) Mood,a,b sd Ratings of quality of life,a,c sd Ratings of health,a,d sd Endocrine Disorder Present,e
1 ND 2 TBI

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Women ND Group1 TBI Group2 (N = 112) (N = 129) 4.72 5.0 5.02 1.26 2.13 0.94 5.3% 11.62 9.1 4.09 1.46 2.66 1.17 18.8%

3.16 4.3 5.28 1.25 1.81 0.89 2.6%

9.52 8.2 4.39 1.62 2.80 1.21 1.5%

Group = Individuals without disability. Group = Individuals with Traumatic Brain Injury. a Male TBI > Male ND, Female TBI > Female ND. b Higher scores = Greater depressive symptoms. c Higher scores = Better ratings of quality of life. d Higher scores = Poorer ratings of health. e Female TBI > Female ND, Male TBI = Male ND. p < 0.001. Table 4 Involvement in sexual activity and relationships for individuals with TBI and without disability Men ND Group1 TBI Group2 (N = 152) (N = 193) Sexually active in past yeara Yes No Involved in relationshipa Yes No
1 ND 2 TBI

Women ND Group1 TBI Group2 (N = 112) (N = 129) 76% 24% 66% 34% 73% 27% 60% 40%

86% 14% 74% 26%

56% 44% 40% 60%

Group = Individuals without disability. Group = Individuals with traumatic brain injury. a Men TBI < Men ND. p < 0.001.

p < 0.05; Women: TBI > ND, = 21.49, p < 0.001), ability to initiate sexual activities (Men: TBI > ND, = 8.43 p < 0.01; Women: TBI > ND, = 6.78, p < 0.01), and ability to achieve orgasm (Men: TBI > ND, = 4.75 p < 0.05; Women: TBI > ND, = 13.31, p < 0.001). Gender-specic physiological impacts were also noted. Men with TBI reported more frequent difculties with sustaining an erection (Men: TBI > ND, = 3.98, p < 0.05). Women with TBI reported more frequent difculties in sexual arousal (Women: TBI > ND, = 16.86, p < 0.001), pain with sexual activities (Women: TBI > ND = 3.48, p < 0.05), ability to mastur-

bate (Women: TBI > ND, = 10.74, p < 0.001) and adequacy of vaginal lubrication (Women: TBI > ND, = 6.19, p < 0.05). TBI-specic physical impacts were noted. Individuals with TBI reported more frequent difculties with positioning (Men: TBI > ND, = 13.10, p < 0.001; Women: TBI > ND, = 10.39, p < 0.001), body movement (Men: TBI > ND, = 12.31, p < 0.001; Women: TBI > ND, = 12.59, p < 0.001) and sensation (Men: TBI > ND, = 7.60, p < 0.01; Women: TBI > ND, = 7.88, p < 0.01). TBI-specic body image impacts were noted. Individuals with TBI reported more frequent difculties in feeling attractive (Men: TBI > ND,

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M.R. Hibbard et al.. / Sexual dysfunction after traumatic brain injury Table 5 Sexual difculties gender Male ND Group1 TBI Group2 (N = 152) (N = 193) PHYSIOLOGICAL DIFFICULTIES Energy for sexa,b Sex drivea,b Ability to initiate sexual activitiesa,b Sexual arousalb Pain with sexual activityb Ability to masturbateb Ability to achieve orgasma,b Men only: Ability to obtain erection Ability to sustain erectiona Women only: Vaginal lubricationb Vaginal bleeding with sex PHYSICAL DIFFICULTIES Difculty with positioninga,b Difculty with body movementa,b Decreased sensationa,b BODY IMAGE DIFFICULTIES Attractivenessa,b Comfort with having partner view body during sexual activitiesa,b
1 ND 2 TBI

Female ND Group1 TBI Group2 (N = 112) (N = 129) 13% 6% 7% 3% 9% 0 2% 7% 5% 5% 3% 4% 10% 7% 37% 33% 18% 22% 17% 10% 16% 18% 3% 19% 18% 15% 26% 23%

8% 9% 4% 6% 3% 3% 2% 6% 6% 3% 2% 5% 8% 3%

18% 16% 15% 11% 4% 4% 7% 10% 13% 16% 14% 15% 21% 10%

Group = Individuals without disability. Group = Individuals with Traumatic Brain Injury. a Male TBI > Male ND. b Female TBI > Female ND. p < 0.05, p < 0.01, p < 0.001.

= 9.00, p < 0.01; Women: TBI > ND, = 8.07, p < 0.01) and in comfort with having a partner view ones body during sex. (Men: TBI > ND, = 5.48, p < 0.01; Women: TBI > ND, = 10.45, p < 0.001). Correlation matrices of the 16 issues potentially impacting sexual activities or interests revealed that a large number of correlations that were signicantly correlated at the 0.05 level (Men: TBI = 81%, Men: ND Group = 49%; Women: TBI = 65%; Women: ND Group = 35%), suggesting that co-linearity existed within the data. A factor analysis was next performed to determine whether reported sexual difculties across individuals created a single factor, or multiple factors. This analysis revealed that all issues loaded on a single factor, which accounted for 37% of the variance in men with TBI, 35% of the variance in men without disability; 38% of the variance for women with TBI, and 26% of the variance for women without disability. Alpha coefcients of 0.65 or greater for each group were demonstrated. Individual issues loading on this sexual dysfunction factor were used to create a separate sexual dysfunction

score for study participants. This factor consisted 12 difculties common to all groups, and included: energy for sex, sex drive, ability to initiate sex, sexual arousal, pain with sexual activity, ability to masturbate, ability to achieve orgasm, positioning, body movement, sensation, feeling attractive, and comfort with having partner view body. Two additional gender-specic issues were included: for men, obtaining an erection and sustaining an erection; for women; adequacy of vaginal lubrication and vaginal bleeding with sex. Signicant differences were found in total sexual dysfunction scores across groups (F = 16.9, p < 0.001) (see Table 6), in that men and women with TBI reported signicantly more frequent sexual difculties than did individuals without disability, and women with TBI reported signicantly more sexual dysfunction than did men with TBI. On average, men with TBI had higher sexual dysfunction scores (x = 1.42, sd 2.49) when contrasted with men without disability (x = 0.59, sd 1.48), while women with TBI had higher sexual dysfunction scores (x = 2.17, sd 2.72) than women without disability (x = 0.67, sd 1.32). The wide standard deviation of this factor suggests con-

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siderable variability in symptoms for individuals with TBI. 3.6. The relationship between demographic, disability, psychosocial and health factors and sexual dysfunction scores Race and level of education were signicantly different in the TBI and ND groups. The relationship between these demographic factors and sexual dysfunction was examined, with race and level of education found to be unrelated to sexual dysfunction for all groups studied. Age at time of interview was significantly different in the TBI and ND groups, and was found to be a signicant predictor of sexual dysfunction, in that men with TBI who were older at time of interview reported greater sexual dysfunction (r = 0.24, p < 0.01). Age at onset of injury was also related to reported sexual dysfunction in that individuals who are older at TBI onset report more frequent sexual dysfunctions than did individuals with were younger at TBI onset (Men: TBI, r = 0.30, p < 0.001; Women: TBI, r = 0.17, p < 0.05). Severity of TBI was correlated with report of sexual dysfunction in that men and women with mild injuries reported more frequent sexual dysfunction than did individuals with more severe TBI (Men: TBI, r = 0.21, p < 0.01; Women: TBI, r = 0.18, p < 0.05). Time post TBI was unrelated to sexual dysfunction. Levels of depression were correlated with greater sexual dysfunction for three of the focus groups assessed (Men: TBI, r = 0.38, p < 0.001; Men: ND, r = 0.41, p < 0.001; Women: TBI, r = 0.38, p < 0.001), as were lower ratings of health (Men: TBI, r = 0.31, p < 0.001; Men ND, r = 0.21, p < 0.01; Women: TBI, r = 0.38, p < 0.001). Lower ratings of quality of life were also related to greater sexual dysfunction for both men (r = 0.21, p < 0.01) and women (r = 0.31, p < 0.001) with TBI. Finally, the presence of an endocrine disorder was related to greater sexual dysfunction for women without a disability (F = 6.52, p < 0.01). Since quality of life and mood were correlated, and both were related to sexual dysfunction scores, correlations were re-computed with the effects of mood partial out of analyses to determine the effects of the remaining two predictors, health and quality of life, on sexual dysfunction. Partial correlations revealed that the former signicant relationship between quality of life and sexual dysfunction were lost, suggesting that mood was a better predictor of sexual dysfunction than was quality

of life. Additional partial correlations in men revealed that the signicant relationship between health ratings and sexual dysfunction previously noted for men with TBI and without disability were also lost, suggesting that mood, rather than health ratings, were the more sensitive predictors of sexual dysfunction in men. In contrast, the signicant relationship between health ratings and sexual dysfunction in women with TBI was maintained (Women: TBI, r = 0.25, p < 0.01), suggesting that health and mood were both signicant predictors of sexual dysfunction for women with TBI. In order to clarify whether this specic relationship was due to poor health or a co-existing endocrine disorder, an ANCOVA with mood and the presence of an endocrine disorder utilized as covariates was performed. The previous differences for health were lost, suggesting that the most sensitive predictors of sexual dysfunction for women with TBI were mood and the presence of an endocrine disorder.

4. Discussion and conclusion The aim of the present study was to expand the understanding of the nature of sexual dysfunction and its predictors in individuals post TBI living in the community. The study was designed to specically address two major limitations in prior research about post TBI sexual dysfunction, i.e., the inadequacy of studies of women post TBI and the lack of comparison group of individuals without disability. Thus, by examining a larger group of individuals with TBI and without disability, this exploratory study permits a better understanding of the nature and frequency of self- reported sexual difculties in men and women post TBI. Differences in core demographic variables (age at interview, race and educational level) were found, which serve to limit the generalization of the study ndings, however, only age was found to be a signicant predictor of sexual functioning in both TBI and ND groups. While this nding supports reports of age related decreases in sexual functioning in individuals without disability, it serves to highlight the impact of TBI on sexual functioning as the TBI sample was signicantly younger than the non-disabled one. Decreased involvement in sexual activities and/or in sexual relationships has been reported in prior TBI research [16,19]. In the current study, these decreases were observed only in men post TBI. In contrast, women post TBI reported greater involvement in sexual activity and in relationships, with their level of in-

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volvement comparable with women without disability. Age differences found in the sample selection (i.e., men with TBI were younger than men without disability, women with TBI were older than women without disability) may account, in part, for these discrepancies. While further validation of these ndings is necessary, these results suggest that men appear to be at heightened risk of limited involvements in both sexual and interpersonal relationships post TBI. Post TBI sexual dysfunction has been viewed as more often the rule than the exception [4]. Findings of the current study support this impression, i.e., when group data are analyzed, individuals with TBI report more frequent physiological, physical and body image difculties which negatively impacted their sexual interest or functioning. Reduced sex drive and difculty in achieving orgasm post TBI have been previously noted in both population-based studies [1,3] and in the literature on TBI [11,16,19,23]. While specic difculties in energy for sex and ability to initiate sexual activities have not been previously reported post TBI, these ndings may, in part, reect co-existing cognitive decits such as fatigue, inattention, and problems with initiation commonly seen post TBI. While the impact of cognitive functioning on sexual activity was not explored in the study, prior researchers have suggested that severity of cognitive impairments can negatively impact sexual functioning post TBI [11]. While erectile dysfunction has been explored post TBI, limitations in prior sample sizes, restricted range of TBI severity, and varying durations of time post TBI have limited the interpretation of these data to a larger group of men post TBI. In the current study, the issue of achieving an erection and sustaining an erection were separately explored. Ten percent of men with TBI reported difculty in obtaining an erection, a frequency equivalent to men without disability, and 13% reported difculty in sustaining an erection, a number higher than in the comparison group of men without disability seen for the study. The frequency of these difculties are similar to those reported early in rehabilitation [18], and considerably lower than those reported in other studies [19,22,23]. When contrasting current ndings with patterns of male sexual dysfunction in population-based studies [1], men with TBI present with symptoms reective of two types of sexual dysfunction described in DSM IV [2]: problems with erectile impairments and problems with sexual desire. The noted frequency of these sexual dysfunctions in men with TBI is higher than the frequencies report in general population based studies [1].

The present study is the rst to evaluate sexual difculties in a large sample of women post TBI. Women with TBI reported two to three times more frequent physiological difculties that negatively impacted their sexual activities and interest when contrasted with women without disability. Sexual difculties in women post TBI were identied in energy for sex, sex drive, initiating sexual activities and ability to achieve orgasm, sexual arousal, pain with sex, difculty with masturbation and vaginal lubrication. When contrasting these ndings to larger population-based studies of women without disability [1], women with TBI present with symptoms reective of the 3 types of sexual dysfunction described in DSM IV [2]: problems with arousal, problems with sexual desire and problems with pain during sexual activities. The noted frequency of these sexual dysfunction in women with TBI in the present study is higher than the reported frequency in women in general [1]. In population-based studies [1,3],sexual dysfunction is more frequently found in women than in men, a pattern also observed in the present study. Interestingly, the increased reporting of sexual difculties reported by women with TBI did not appear to negatively impact their overall level of participation in sexual activity or in their ability to maintain relationships. There are several interpretations of these ndings: women with TBI may be more open to discussing sexual difculties within the context of a clinical interview, women may be more willing to discuss sexual difculties with their partners as a means of maintaining the relationships, and/or women may be able to hide their sexual difculties from their mates more effectively than men post TBI. Conversely, men with TBI may be more reticent to discuss sexual difculties within a clinical interview or with their partners, and may experience more difculty hiding their sexual difculties from others. As a result, men may choose to avoid situations in which they confront potential sexual failures. These interpretations are partially supported by noted gender differences in discussion of sexuality and sexual dysfunctions in the general population [1,3]. The impact of physical limitations on sexual activity was explored in the present study, with individuals with TBI reporting difculties in positioning, body movement and decreased sensation that negatively impacted their sexual activities or interests. These ndings add to earlier literature [19] suggesting a relationship among sexual satisfaction, the adequacy of physical functioning and level of independence post TBI. Finally, two aspects of body image, i.e., attractiveness and com-

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fort with having ones body viewed by a partner during sex, were more frequently reported as difculties that impacted sexual interests or activity in individuals with TBI. These ndings provide additional support for the negative impact of altered body image and reduced self-esteem on sexual activities post TBI [19]. Severity of TBI has been suggested as an important predictor of sexual dysfunction [11,16,23,24]. In the current study, severity of TBI was found to be a signicant predictor in that individuals with mild injuries reporting more frequent sexual dysfunctions than did individuals with more severe injuries. These results add to the growing literature suggesting that individuals with milder injuries may be more aware, and thus possibly more detailed reporters, of their post-TBI sexual changes [28,32]. Time post TBI has been viewed as an important predictor of sexual functioning, with shorter duration of time post TBI associated with greater sexual satisfaction [18,19,22] and greater duration of time post TBI associated with greater sexual dysfunction [21, 22]. In the present study, time post TBI was found to be unrelated to reported sexual difculties, suggesting that individuals remain at risk of development of sexual difculties at any point post TBI. In population studies of sexual functioning, health problems, depression and poor quality of life have been identied as predictors of sexual dysfunction [1,3],with psychosocial problems associated with greater sexual difculties in women, and health problems associated with greater sexual difculties in men [3]. These patterns were not replicated in the present study. More specically, psychosocial factors were better predictive of sexual dysfunctions in both men with TBI and those without disability. Health factors were better predictors of sexual dysfunction for women without TBI, while psychosocial and health factors were predictive of sexual dysfunction in women with TBI. The reasons for these differing patterns in the current sample are unclear, and await further research efforts. In individuals with TBI, an additional health concern is the increased risk of damage to the hypothalamicpituitary axis (HTP). In the present study, men with TBI and without disability reported equivalent and infrequent endocrine disorders, while women, regardless of group, reported more prevalent endocrine disorders. Of note, women with TBI reported three times as many endocrine disorders (19%) as women without a disability (5%). While age differences in the sample may, in part, explain these different patterns, both women with TBI and without disability presented at heightened risk of sexual dysfunctions when an endocrine disorder was

reported. The risk of sexual dysfunction appears to be greatest in women post TBI who present with both an endocrine disorder and a depressed mood. Since these ndings are new to the eld, further validation of these ndings is clearly warranted. 4.1. Implications of study The present study highlights the complexity of sexual dysfunction and the multiplicity of psychosocial and health factors that can have a negative impact on sexual interest or activity. Several research implications emerge from this study. First, the importance of creating a standardized assessment of sexual functioning in individuals with TBI is clearly indicated. Assessment should incorporate questions directed at the range of physiological, physical and body image issues identied in this study, as well as assessment of predictors of sexual dysfunction, i.e., mood, health status and quality of life. The impact of cognitive decits on sexual functioning, an issue not addressed in this study, should also be incorporated into future studies as well. The study ndings would also argue for the need for further investigation of the role of HTP axis damage and resultant neuroendocrine disorders on sexual functioning in individuals with a full range of TBI severity. Such investigation should include laboratory assessment of neuroendocrine and hormonal functioning. The ndings suggest that select groups of individuals may be at greater risk for sexual dysfunction post TBI: individuals with milder injuries, individuals who are depressed and/or have comorbid health problems, women with TBI and an endocrine disorder, and men who are older at time of injury or at time of interview. Given the breadth of individuals presenting at risk, and the lack of a clear relationship between duration of TBI and development of sexual difculties, it is argued that sexuality assessment should be routinely incorporated into ongoing services for individuals post TBI. The current study ndings also suggest that assessment needs to be broad based, with referral for neuro-endocrine work-ups as indicated. Treatment approaches need to be similarly broad in scope to effectively treat sexual dysfunction post TBI. Proactive sexual education for individuals post TBI and their families during acute care should be routinely implemented, with the potential physiological, physical and body image difculties noted in this paper discussed with both patients and their mates. The relationship of depressed mood and poor health with sexual dysfunction should be openly discussed as possible

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sequela of the TBI. Individuals and family/signicant others should be encouraged to discuss sexual difculties as they emerge post TBI with their rehabilitation team, with referrals made for in-depth treatment as needed. The potential impact of physical barriers to sexual activity should be evaluated, with alternative positioning techniques discussed. Psychological counseling should be considered for any individual presenting with sexual difculties post TBI. Sessions should routinely incorporate discussion of sexual activities, current level of sexual satisfaction and barriers to satisfying sexual encounters. Such dialogue will help normalize the topic of sexuality, allowing individuals greater ease in discussing sexual concerns with their therapists. These dialogues become critical when individuals become depressed or experiences a change in health status. When individuals are in relationships, couples counseling should be considered with exploration of sexual relationships and potential sources of sexual difculty explored. These proactive interventions many help avert the all-too-frequent dissolutions of relationships that can be so devastating post TBI. Perhaps the most important treatment implication of the present study is the need to aggressively treat post TBI depression, a common sequelae of TBI [33]. In addition to traditional psychotherapy approaches, education about the impact of depression on sexual dysfunction, couples counseling (when appropriate) and timely referral for antidepressant medications are required. Finally, this study has direct implications for future treatment studies. Use of cognitive behavioral therapy (CBT) alone, or in combination with sexual enhancement medications, has been, and continues to be, evaluated in the general population of individuals with sexual dysfunction [3439]. Many of these approaches have been recently investigated in men following spinal cord injury (SCI) [4042] with further research in women with SCI clearly needed [4345]. Research on the efcacy of CBT, with and without sexual enhancement medications, in individuals with TBI have not been implemented to date. Studies designed to diagnose and treat post TBI neuro-endocrine disorders and evaluate the impact of these treatments on sexual functioning are further areas of fruitful research in the eld. 4.2. Limitations of study Several limitations of the present study need to be highlighted. This study was exploratory in nature and, therefore, not hypothesis driven. The interview was entirely a self-report measure, with no validation of sex-

ual dysfunction by partners, or through medical documentation of an endocrine disorder. Given the sensitive nature of the topic, it could be argued that individuals with TBI may have under-report symptomatology. In contrast to individuals without disability, individuals with TBI reported greater changes across sexual difculties studied, hence this concern appears unfounded. There were unexpected differences in the demographics of the TBI and ND samples in terms of age, race and education that serve to limit the generalization of the current ndings. Age was found to be a signicant predictor of sexual difculties, a nding also noted in general population studies [3]. These unexpected sampling differences remain the major limitation of the study and need to be controlled in future research. The impact of cognitive functioning on sexual dysfunction was not evaluated in this study and should be incorporated as a potential predictor of sexual dysfunction in future studies of individuals with TBI. Finally, while attempts were made to evaluate changes in the frequency of sexual activities post TBI, subsequent analyses of the data were fraught with methodological difculties and, therefore were not reported. For example, in the QOLI participants were asked if the frequency of their sexual activities had increased or decreased since their TBI. Because questions about the status of sexual activity before TBI were not explored within the QOLI, the respondents reports of increased or decreased sexual activity post TBI alone were of questionable validity. Thus, the frequency of hypersexuality and hyposexuality post TBI cannot be addressed. Such methodological concerns need to be explored in future studies, since these issues post TBI remain inadequately addressed. Acknowledgements The preparation of this manuscript was supported by Grant No. H133B30038 from the National Institute of Disability and Rehabilitation Research, US Department of Education, to Mount Sinai School of Medicine; Wayne A. Gordon, Project Director. We thank Margaret Brown and Lynne Kothera for their careful review of this manuscript, and Chantal Sanabria for her careful attention to the preparation of this manuscript. References
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