Prevalence and incidence of disturbances of sexual functioning

In this section I attempt to integrate the available literature on the frequency with which sexual functioning has been compromised as a consequence of traumatic brain injury. Unfortunately, the vast majority of data collected on this topic has centred around the examination of compromise in sexual function in male subjects due to their increased prevalence in head-injured samples and to their more obvious manifestation of sexually aberrant behaviours. Where possible, the available data on alteration in female subjects will also be presented.

Dimond (1980) reviewed the older and foreign language literature on the effects of brain injury on sexuality. Impotence has been associated with head injury for many years (Rojas, 1947; Stier, 1938), including boxers with cumulative traumatic encephalopathy (Maudsley & Ferguson, 1963). In examining sexual disturbances in a series of 100 patients with head injuries, Meyer (1955) found that 71% reported a decrease in sexual drive following injury (i.e., 30% mild and 41% severe) with the older patients more affected than the younger ones.

Walker and Jablon (1961) report that in a large sample of World War II veterans with head injury (739 men) the vast majority (87%) had no complaint about their sexual functioning subsequent to the injury. Eight percent complained of impotence or reduced libido, four reported an increase in sexual desire, and 14 reported other problems regarding their sexual appetites. The frontally injured subjects tended to have more sexual complaints than individuals injured in other brain regions. At the 25-year follow-up (Walker, 1972), an unspecified number of wives complained of diminution of sexual functioning in their spouses and wondered whether "anything might be done to enhance his sexual interest" (p. 8).

De Morsier and Gronek (1971) found that 47 of their 49 male patients reported impotence following TBI, and only two of their male patients reported increased sexual desire; there was no mention of decreased sexual desire.

In the more recent literature, the findings with regard to sexual functioning following from the brain injury have been mixed. Bond (1976) was one of the first investigators to address changes in sexuality of a social, physical, and cognitive nature subsequent to head trauma. Bond interviewed 47 males and 9 females at an unspecified time postinjury. The patients had a mean age of 30 years and 96% had suffered posttraumatic amnesia of at least seven days. Bond observed no association between the duration of posttraumatic amnesia, the level of physical disability or cognitive impairment, and the level of sexual activity. Oddy, Humphrey, and Utley (1978) studied 50 adults, six months subsequent to injury with a minimum period of 24 hours of posttraumatic amnesia. Of the 12 married patients, half reported an increase in sexual intercourse and half a decrease subsequent to the injury.

In a subsequent study one year after injury, Oddy and Humphrey (1980) noted that three of seven spouses reported feeling significantly less affectionate towards their injured partners. In one case, the patient suffered partial impotence, whereby he was physically capable of intercourse, but both partners reported curtailed functional ability and sexual satisfaction. Weddell and colleagues (1980) followed up TBI patients two years after injury. The participants were 31 males and 13 females with a mean age of 24.4 years (SD 6.2). Relatives of the participants also provided information in a structured interview. Information relating to alteration in sexual functioning was not specifically requested, and the questions focussed on personality changes. The highest personality change reported was irritability (as noted in the discussion of this matter in chapter 3) followed by alteration in the expression of affection. Eighteen percent of the sample was reported to be more affectionate than preinjury. Increased talkativeness, childishness, and disinhibition were also reported as common sequelae.

Rosenbaum and Najenson (1976) conducted a study investigating wives' reactions to traumatic injury in returned servicemen. Responses to a psychosocial outcome questionnaire were compared among wives of 10 severely brain injured, six spinal chord injured, and uninjured men who had fought in the Yom Kippur war in Israel. The majority of men in the brain-injured sample had suffered penetrating missile wounds, with only 2 out of the 10 sustaining closed head injuries. Analysis of the data revealed the largest reductions in sexual activity and the greatest distress regarding changes in sexual behaviour was in the spinal chord-injured group. Reduced sexual functioning and distress were also reported to be more common in the brain-injured group in comparison with the uninjured controls. The greatest level of mood disturbance was noted in the wives of the brain-injured patients in comparison to the spinal chord-injured patients and the control group, similar to our own observation of parallel levels of distress in the primary caregivers of traumatically brain-injured subjects and the subjects themselves (Perlesz et al., 2000).

Greater levels of mood disturbance were associated with diminished levels of sexual activity and, in addition, negative attitudes towards perceived sexual changes were associated with lower mood level. Overall, Rosenbaum and Najenson (1976) found an extreme reduction in postinjury sexual relations, but no clear-cut relationship between neuroanatomical locus of injury and the presence of sexual dysfunction. This may be because the locus of injury could not be clearly defined by self-report alone and required neurological evidence such as magnetic resonance imaging (MRI) or computed tomography (CT) scan to support information regarding site of injury.

Kosteljanetz, Jensen, Norgard et al. (1981) investigated sexual dysfunction in a sample of 19 males (mean age = 39 years) using both CT scan and questionnaire techniques. The participants had been unconscious for less than 15 minutes and noted postconcussive symptoms that endured for a minimum of six months postinjury. A 23-item questionnaire was administered soliciting information regarding sex drive and erectile dysfunction. Information regarding increased sex drive, frequency of sexual activities, and improved erectile capability was not requested. Ten patients (53%) reported reduced sex drive and 8 (42%) reported erectile dysfunction. The degree of dysfunction correlated highly with the extent of intellectual impairment and degree of cerebral atrophy noted on the CT scans.

Mauss-Clum and Ryan (1981) investigated the reactions of wives and mothers to male patients with brain injury. Half of the sample had received head injury while the other half had suffered brain dysfunction as a result of stroke or hypoxia due to cardiopulmonary disorder. Forty family members responded to the questionnaire in which several questions addressed sexual changes and marital relationships. Just under half the wives and mothers (47%) reported that the patients were either disinterested or preoccupied by sex (no delineation of level of reporting by relationship was outlined). Additionally, 42% of wives reported that they had no sexual outlet. A majority of respondents reported that the patients were dependent, impatient, irritable and had temper outbursts. Respondents also reported inflexibility (20%), self-centredness (43%), decrease of self-control (47%), and inappropriate public behaviour (40%). Emotional distress was frequently reported by wives including frustration (84%), irritability (74%), depression (79%) and anger (63%). Some wives (32%) indicated that they felt they were married to a stranger. Furthermore, nearly half of the wives reported that they were "married but did not have a husband," and felt ensnared. Approximately 25% of the wives reported that they had been verbally abused, threatened with physical violence, and had been accused of providing poor care by their spouses.

Sabhesan and Natarajan (1989) attempted to correlate evidence of persistent neurological damage with disturbances of sexual functioning in East Indian patients one year after head injury. A semi-structured interview was conducted by a psychiatrist and included an assessment of the patient's pretraumatic sexual behaviour, problems in marital life, present neurological status, changes in sexual behaviour, and associated psychological changes in both the patient and spouse. Thirty-four patients were used in the study ranging in age from 18 to 47. Participants were followed up daily from the time of admission to the time of discharge and were subsequently seen at three-month intervals. Four patients were unmarried at the time of the injury and five had either divorced or separated during the follow-up. One of the unmarried and two of the divorced patients were married during this period.

Over a period of one year, 13 of the 34 participants returned to their preinjury level of sexual functioning (Sabhesan & Natarajan, 1989). These 13 subjects then became controls for the remainder of the sample. The remainder demonstrated sexually inappropriate behaviour, total loss of sexual function, and sexual dysfunction. The deviant sexual behaviour included purposeful use of lewd language (9%), frot-teurism (6%), exhibitionism (6%), sadism (6%), and rape (3%). Total loss of sexual behaviour was reported in 38% of patients. Approximately 57% of the patients reported decreased interest in sex while two reported increased interest in sex when compared with controls. Premature ejaculation was noted by 7 patients, and a similar number of patients noted postcoital symptoms. Patients with continuing sexual disturbance were distinguished from the controls by having an increased prevalence of delusional disorder, depression, and other neurotic features. The results of the frequency of sexual intercourse aspect of the study may well have been compromised by sociocultural effects. A voluntary restriction on intercourse to conserve health and strength mediated by the belief that spilling semen results in the dissipation of vital forces is apparently a commonly held view in this part of India.

Marital disharmony was reported by 57% of the "dysfunctional" patients compared to 15% of the control group (Sabhesan & Natarajan, 1989). Of the spouses, 62% developed clinically recognisable depression and 28% showed symptoms of anxiety. A random trial among these patients indicated that counselling, education and behavioural therapy were helpful.

Kreutzer and Zasler (1989) conducted a study aimed at assessing the psychosexual consequences of TBI. Their sample consisted of 21 males with a mean age of 39 years (SD 12.6). The mean number of months postinjury was 16.2 (SD 14.1). Five patients were single and the remaining 16 were married, all of whom had reported sexual contact in the past 3 months. They were administered an 11-item questionnaire, the Psychosexual Assessment Questionnaire, which was developed by the authors to assess changes in patients' sexual behaviour, affect, self-esteem, and heterosexual relationships. Each question was presented in a multiple-choice format and respondents were asked to rate changes in each area relative to their preinjury functioning. The results demonstrated that more than half (57%) reported a decrease in sex drive following injury. Fourteen percent indicated increase in sex drive subsequent to the injury and 28% reported no change in comparison to preinjury. The majority of respondents (57%) indicated that their ability to maintain an erection had diminished. An equal number of respondents reported either less time or more time spent in foreplay. Approximately half of the sample (52%) reported no change in ability to achieve orgasm in comparison to preinjury, while one-third reported greater difficulty and 14% reported improved ability to achieve orgasm. Nearly two-thirds (62%) reported diminished frequency of intercourse. Only one patient reported an increase in frequency of intercourse.

With regard to affect and self-esteem, the majority of respondents reported declines in self-confidence (67%), sex appeal (52%), and increased depression (71%: Kreutzer & Zasler, 1989). One-fifth of the sample reported no change in any of the three areas compared to preinjury. Of notable interest was that 14% of the sample reported increased self-confidence and 10% reported diminished depression subsequent to injury.

Data regarding quality of relationships was assessed only for the 16 married patients as none of the 5 single patients reported a steady heterosexual relationship (Kreutzer & Zasler, 1989). Overall, despite changes in sexual behaviour, there was evidence that the quality of marital relationships was preserved. Approximately 40% reported either a good or a very good relationship when compared to preinjury. One half of the sample indicated communication with their partner had remainder the same, 12% report improved communication, and 38% rated communication as worse. Affect and self-esteem were correlated with sexual behaviour, but none of the correlations was statistically reliable.

In our partial replication of the Kreutzer and Zasler (1989) study we (Crowe & Ponsford, 1999) noted 86% of our 14 TBI participants endorsed decrease in sex drive subsequent to the injury, a higher figure than Kreutzer and Zasler who noted this symptom in only 57% of their sample. While 86% of our sample indicated decrease in frequency of intercourse, Kreutzer and Zasler noted only 62%. The discrepancies between the figures were probably attributable to the recruitment method of our study as our sample participants were enrolled in the study because they had noted changes to sexual functioning subsequent to their injuries. This resulted in the participants endorsing a higher incidence of changes in sexual functioning overall. However, the similarity in the nature of the impairments noted is striking. Overall, our TBI participants seem to feature decrease in sex drive as well as decrease in frequency of intercourse in association with marked decrease in level of self-confidence, sex appeal, and affective state subsequent to the injury. The study also examined the possible cause of the diminution of sexual arousal as attributable to a decrease in the ability to generate, control, and manipulate arousing sexual imagery.

In a subsequent study undertaken by Jennie Ponsford (2003) on 208 participants with moderate to severe injury (two-thirds of the sample were male) followed up one to 5 years postinjury as compared to 150 controls, 36-54% of the TBI sample reported decrease in opportunity, importance, and frequency of sexual activity, reduced sex drive, decreased ability to engage in sexual activity, or to give their partner pleasure, and decreased enjoyment and ability to engage in sexual behaviours.

Kreuter, Dallhof, Gudjonsson, Sullivan, and Siosteen (1998) studied 92 individuals (65 men and 27 women) followed up 1 to 20 years postinjury and noted that 40% reported a decreased ability to be able to achieve orgasm, 47% reported decrease in the frequency of sexual intercourse, and 16% reported decreased sexual interest.

Garden, Bontke, and Hoffman (1990) conducted a further study evaluating sexual functioning and marital adjustment after TBI. Their participants (11 men and four women: mean age = 39.2 years) had experienced a single closed head injury at least two months before the study. The participants and their spouses were asked to respond to separate sexual history and functioning questionnaires. Intercourse frequency decreased for 75% of the female participants and their spouses, while 55% of male participants and spouses reported similar declines. Only one male patient and his spouse reported an increase in intercourse frequency after head injury. Forty-seven percent of all couples expressed dissatisfaction with their current sexual frequency, while 40% indicated no change in satisfaction. Five couples did not agree with each other about changes in the duration of foreplay. Of the 10 partners who did agree, foreplay duration increased for three couples (30%), remained the same for four couples (40%), and decreased for three couples (30%).

Erectile and ejaculatory problems were uncommon. One female participant's spouse and four male participants reported occasional erectile difficulties after as compared to before the injury (Garden et al., 1990). Seven (64%) of the female spouses experienced occasional or frequent anorgasmia after the spouse's injury as compared to three (27%) before the injury. Two of the injured female participants (50%) experienced problems with orgasm after the injury, while two had no change in orgasmic capability. Overall satisfaction with marital sexual adjustment since the TBI was recorded by eight (53%) spouses.

O'Carroll and colleagues (1991) conducted a postal questionnaire study and found a high incidence of sexual problems in a mixed sample of mild, moderate, and severely head-injured participants. The study failed to note any relationship between severity of injury and sexual dysfunction, and this was probably due to sampling error inherent within the design of the study. For the study as a whole there was only a 30% response rate, while in the group that was severely head injured, the response rate was 100%.

Sandel, Williams, Dellapietra, and Derogatis (1996) undertook a review of sexual functioning in 52 outpatients with a history of traumatic brain injury (39 men and 13 women; mean age = 34.6 [SD 11.25]; average length of posttraumatic amnesia (PTA) 53.82 days [55.22]; average length of time postinjury 3.71 year [SD 3.14]). The injured participants reported reduction in sexual functioning to below the levels noted in noninjured populations, but only at statistically significant levels on two scales of the Derogatis Interview of Sexual Functioning (DISF); orgasm and drive/ desire. The authors noted that there was no relationship between sexual functioning and indices of severity of neuropsychological functioning, although the frontal lobe patients reported more sexual cognitions and fantasies and a higher overall satisfaction with their sexual functioning. Time since injury was inversely related to scores on the arousal scale, possibly suggesting some role of the injured frontal lobe/limbic system in hypersexual state in the early recovery after the injury. Patients with more recent injuries reported greater levels of arousal than those not recently injured. Right hemisphere injuries also correlated with higher scores on reports of sexual arousal and sexual experiences. The authors did note that one of the limitations of the study was the fact that only patients and not significant others were assessed regarding these changes, which may have lead to spurious effects due to the possibility of limitations in self-awareness.

Gosling and Oddy (1999) studied 18 heterosexual couples with regard to the quality of their marital and sexual relationships one to seven years after the male partner had suffered a severe closed head injury. The requirements for inclusion in the study were the necessity to be a heterosexual couple with a male partner who had sustained traumatic brain injury not less than one and not more than seven years prior to the assessment, the couple had to be in a stable relationship for at least three years prior to the injury, the couple were to still be together at the time of the study, and the period of PTA had to be of at least seven days. The mean age of the men was 42.1 years (SD 12.5), and of the women 39.2 years (SD 11.1). They had a mean duration of relationship of 16.2 years (SD 9.4). The mean number of years since the male partner's head injury was 4.1 years (SD 1.9), and the mean length of PTA for the men in the sample was 56.4 days (SD 33.3), indicating very severe injuries.

The females' partners rated their sexual satisfaction as significantly lower after the injury as compared to their evaluation of themselves before the injury (Gosling & Oddy, 1999). Two of the women did not complete the postinjury questionnaire since both reported a complete cessation of their sexual relationship. Another 12 rated their sexual relationship as worse since the injury, three as the same, and only one as improved. Seven women reported that their partner's level of sexual interest had decreased since his injury, seven reported no change, and three reported an increase in interest. Comparison of the female partners' ratings of marital satisfaction with

Table 9.2 Frequency of Alteration to Sexual Functioning Following TBI in a Mixed Group of Published Studies

N (Male

% Not

%

%

Study

Year

N

Patients)

Changed*

Increased

Decreased

Meyer

1955

100

100

25

4

71

Walker &

1961

739

739

87

3

10

Jablon

De Morsier &

1971

49

49

0

4

96

Gronek

Oddy et al.

1978

54

NA

0

50

50

Kosteljanetz et

1981

19

19

32

10

58

al.

Mauss-Clum &

1981

40

30

53

NA

NA

Ryan

McKinlay,

1981

55

46

52

NA

NA

Brooks, Bond,

Martinage, &

Marshall

Kreutzer &

1989

21

21

29

14

57

Zasler

Sabhesan &

1989

34

20

34

9

57

Natarajan

Davis &

1990

68

53

84

7

9

Schneider

Garden et al.

1990

15

11

36

9

55

Kreuter et al.

1998

92

65

60

5

47

Crowe &

1999

14

14

7

7

86

Ponsford

Gosling & Oddy

1999

18

17

41

18

41

Ponsford

2003

208

143

33

13

54

MEAN

101.7

94.8

38.2

11.8

53.2

* % not changed is determined by subtracting the number changed from the total number of subjects

* % not changed is determined by subtracting the number changed from the total number of subjects those of the injured partner revealed a highly significant difference with the wives reporting much more dissatisfaction than their partners.

The qualitative aspect of the Gosling and Oddy's (1999) study observed a major role change experienced by the women, with many comparing the new role to that of a parent with total decision-making responsibility and the incompatibility of this role with that of sexual partner was noted by many. A tendency for the injured males to express gratitude but not to be able to communicate their feelings adequately was described by many women. Most of the women were resigned to the expectation that there would be little change in the future and, for most, the only positive aspect of the relationship was a sense of commitment and continuing companionship.

In an attempt to determine the level of hyper- or hyposexuality subsequent to TBI a compilation of some of the available data published in the literature is presented in Table 9.2. It should be stressed that the quality of this data is compromised by a number of issues including: (1) most of the data is self-reported; (2) there is no sense in which the samples could be considered to be representative of the TBI population overall as the patients were often selected on the basis of their report of sexual problems; (3) in some cases the data was interpolated from the published figures; (4) some of the older literature did not provide comprehensive enough data to be able to determine the variables of interest; (5) injury severity, period of PTA, and time since injury are various in the compared samples; and (6) data only for male patients was sufficiently plentiful to make any meaningful tabulation.

Despite these obvious shortcomings Table 9.2 does provide some insight into the frequency with which change to sexual function may occur in this selected sample of patients. About one third of male patients do not change as a consequence of the injury. More than half of the samples feature hyposexuality subsequent to the injury. Hypersexuality would appear to be rarer, occurring in less than 10% of cases. While, as noted above, hypersexual behaviour following brain injury is uncommon, when it does occur it is often associated with lesions to the base of forebrain, the diencepha-lon, and, most notably, the septum. Drugs that increase central monoamines may produce a similar syndrome.

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