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Background: The importance of effectively identifying and managing sexuality issues following acquired brain
injury is being increasingly recognized within clinical and research domains. However, a tool specifically developed
to measure sexuality following brain injury is yet to be validated. Objectives: In this study, the reliability and
validity of the Brain Injury Questionnaire of Sexuality (BIQS) was evaluated. Method: Eight hundred and sixty-five
people who had sustained traumatic brain injury participated in this study. All participants completed the BIQS,
and a subsample also completed the Derogatis Interview for Sexual Functioning—Self-Report version (DISF-SR).
Results: Exploratory factor analysis supported a 3-subscale structure of the BIQS, which aligns with contemporary
conceptual models of sexuality in chronic disease. All subscales of the BIQS demonstrated very good internal
consistency. Convergent and divergent validity of all BIQS subscales was also demonstrated. Conclusions: Results
from the study support the reliability and validity of the BIQS, which shows promise as a measurement tool for
future traumatic brain injury sexuality research. Further validation work including evaluation for potential clinical
applications is encouraged. Key words: assessment, reliability, sexual function, sexual well-being, sexuality, traumatic brain
injury, validity
164
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Assessment of Sexuality Following TBI 165
sexuality are also described. This framework is poten- tionship Characteristics). Kreuter et al10 developed the
tially helpful to both clinicians and researchers in con- Sexual Adjustment Questionnaire (SAQ), as well as a
ceptualizing and studying sexuality following TBI. Sexual Interest and Satisfaction (SIS) scale, where items
Disinhibited sexual behavior following TBI has re- were adapted from a spinal cord injury questionnaire.
ceived significant attention within research literature, More recently, Ponsford13 adapted the PAQ, SAQ, and
particularly within the context of challenging behav- the SIS scale to create the Sexuality Questionnaire (SQ).
ior. However, more comprehensive studies of sexuality The original PAQ sections were retained; however, items
following TBI have highlighted reduced frequency and were added and language was modified to accommodate
quality of sexual activity as the predominant complaints both males and females. Ponsford13 also added separate
by patients and their partners.8,9 A number of sexual questions about sexual relationships, current and before
functions, including sexual drive, arousal, and ability injury, and reasons why sexual changes may have oc-
to orgasm, are reportedly compromised in 30% to 50% curred since the injury. The SQ has the advantage that
of TBI survivors.10–15 Furthermore, reduced sexual well- content was developed specifically for a TBI popula-
being has been reported, including dissatisfaction with tion and allows comparison of sexuality pre/post TBI.
sexual experience, reduced perceived sexual appeal, and It accommodates both males and females in addition
poor sexual communication with partners.11–13 How- to people who are not necessarily in long-term relation-
ever, as noted in a review by Sandel and colleagues,16 ships. However, unfortunately, little scale-development
our understanding of the specific sexual impairments work has been conducted on the SQ and limited psy-
associated with TBI and potential physical, psychologi- chometric information is available.
cal, and sociocultural contributors to these impairments On the basis of research discussed earlier, TBI and
remains limited. its associated consequences appear to compromise as-
Previous research examining sexuality following TBI pects of sexuality in a significant proportion of survivors.
has been limited by numerous methodological prob- However, previous studies have used a number of differ-
lems. One of the most pertinent of these is the lack ent tools to measure sexuality, none of which have been
of a validated tool to measure sexuality following TBI. validated for use within the TBI population. This limits
Some previous studies have used established sexuality the reliability and validity of research findings and can
measures such as the Golombok Rust Inventory of Sex- hinder future research within this field. This study forms
ual Satisfaction,12,17,18 Personal Assessment of Intimacy the basis of a broader research program longitudinally
in Relationships Scale,19,20 and Derogatis Interview for investigating the prevalence, causes, and consequences
Sexual Functioning—Self Report version (DISF-SR)15,21 of reduced sexuality following TBI. However, as a first
to measure sexual function following TBI. However, step, the primary aim of this study was to validate a
there are disadvantages associated with use of these es- measure of sexual function and well-being in people
tablished measures. First, item content relating to sexual with TBI to justify its use. More specifically, we aimed
function and well-being was not derived from TBI sur- to establish the factor structure of the SQ. We also ex-
vivors, limiting content validity within the TBI popu- amined internal consistency and convergent validity of
lation. Second, in addition to comparison with healthy this measure within the TBI population.
controls, comparison of current function with prein-
jury function is of major interest within TBI research. METHODS
The format of the aforementioned measures does not al-
Participants
low this preinjury comparison. Third, most established
measures were originally designed for healthy people in A total of 865 participants were recruited for this study
established relationships. Thus, they do not easily ac- from 2311 consecutive admissions to a TBI rehabilita-
commodate those people who are single or in casual tion program in the context of a no-fault accident com-
relationships, which is the case for many TBI survivors. pensation system. All patients treated in this program are
Finally, because of the explicit nature of some measures, routinely invited to attend a follow-up clinic at 1, 2, 3,
such as the DISF-SR, response compliance can be an is- 5, 10, and 20 years postinjury. Thus, the sample used in
sue. this study was not biased toward participants seeking on-
Other previous studies have developed measures going assistance. Demographic and injury information
specifically for persons with brain injury. Kreutzer for participating and nonparticipating TBI survivors
and Zasler11 developed the Psychosexual Assessment who attended follow-up is presented in Table 1.
Questionnaire (PAQ) specifically for male patients with With regard to the participating group, as expected
TBI. The content of this scale was based on TBI patient within TBI research, the sample comprised more males
interviews and sexual function questionnaires used in than females. Severity of TBI was measured by length of
other populations. Items were grouped into 3 sections posttraumatic amnesia, according to criteria established
(Sexual Behaviour, Affect and Self-Esteem, and Rela- by Jennett and Teasdale22 (see Table 1). Severity of
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166 JOURNAL OF HEAD TRAUMA REHABILITATION/MAY–JUNE 2013
TABLE 1 A comparison of demographic forms for each partner. Thus, single participants were
not required to complete it.
and injury information between TBI
survivors who participated in this study
and those who did not Sexuality Questionnaire
As noted earlier, the SQ13 was developed by Pons-
Study Non-
participants participants
ford in 2003 and was adapted from the PAQ,11 the
(N = 865) (N = 1157) SAQ,10 and the SIS scale.10 The SQ requires respon-
dents to compare postinjury aspects of their sexuality
Age at injury,a mean 31.2 (12.6) 34.6 (17.1) (eg, sex drive, sex appeal, communication with sexual
(SD)
Sex, % sample partner) with their preinjury status on a 5-point Lik-
Male 70.3 70.8 ert scale (1 = greatly decreased, 5 = greatly increased).
Female 29.7 29.2 Items, except 12 (level of depression) and 13 (preoc-
Length of PTA, mean 27.6 (30.6) 26.2 (42.5) cupation with problems), are positively expressed; so
(SD), d these 2 are reverse scored so that higher scores on
TBI severity, % sample
Mild (PTA < 24 h) 3.2 5.4 all items represent improvement. The original section
Moderate (PTA 1-7 d) 24.1 27.6 headings of the PAQ (Sexual Behaviour, Affect and
Severe (PTA 8-28 d) 40.3 35.8 Self-Esteem, Relationship Characteristics) were retained
Very severe (PTA 32.3 31.3 within the SQ. Separate questions about sexual rela-
> 28 d) tionships, current and before injury, and reasons why
Within established
relationship, % sexual changes may have occurred since the injury
sample are also included. See original version of the SQ in
Yes 32.4 36.0 Appendix 1.
No 67.6 64.0
Years postinjury,a %
sample Derogatis Interview for Sexual Functioning—Self-Report
1 47.9 46.2 Version
2 15.6 26.9
3 9.5 16.0 This is a 25-item self-report questionnaire that pur-
5 9.6 8.0 ports to measure level of sexual activity and overall qual-
10 15.4 2.9 ity of sexual functioning during the past 30 days. Five
20 2.1 0.1
domains are included: sexual cognition/fantasy, sexual
arousal, sexual behavior/experience, orgasm, and sexual
Abbreviations: d, days; PTA, posttraumatic amnesia; TBI, trau- drive/relationship, with distinct sex-keyed versions.23
matic brain injury. Most scales of the DISF-SR relate to sexual function-
a P ≤ .05.
ing, with the exception of the drive/relationships do-
injury ranged from mild to severe; however, the major- main. Norms are based on several hundred community-
ity of the sample sustained severe TBI. Approximately based nonpatient respondents, and favorable psycho-
one-third of participants reported being either married metric properties have been reported in various medical
or in a relationship. populations.21
A between-groups comparison found that the 865
TBI patients who completed the SQ were significantly Procedure
younger at injury (t(2019) = 5.23, P < .001) and were more
years postinjury (χ 2 (1, 2022) = 161.60, P < .001) than the Ethical approval for this study was obtained from
1157 who did not participate. However, there was no the Epworth Hospital human research ethics commit-
difference in sex (χ 2 (1, 2022) = 0.06, P > .05), length of tee. All patients attending their follow-up appointment
posttraumatic amnesia (t(1996) = −0.81, P > .05), or rela- were invited to participate in this study, and a full writ-
tionship status (χ 2 (1, 1988) = 2.79, P > .05) between the ten explanation of the research was provided. The ethics
groups (see Table 1). committee required the questionnaires to be presented
in a sealed envelope with a warning that the contents
might be offensive. Those who agreed to participate in
Measures
the study signed a consent form. Participants were then
All participants completed the SQ. Participants who invited to complete the SQ. Those who were married or
reported being married or in a relationship were also within a relationship were also invited to complete the
invited to complete the DISF-SR. The DISF-SR was de- DISF-SR. Demographic and injury information was ob-
veloped for use with couples and comprises 2 separate tained from interview with patients and medical records.
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Assessment of Sexuality Following TBI 167
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168 JOURNAL OF HEAD TRAUMA REHABILITATION/MAY–JUNE 2013
TABLE 3 Correlations between the BIQS An evaluation of the psychometric properties of the
BIQS gave generally positive results. Internal consis-
and the DISF-SR subscales tency of all 3 subscales and the total score of the BIQS
were all considered very good.24 Convergent validity was
BIQS subscales
supported by significant correlations between the BIQS
Relationship and DISF-SR Sexual Functioning subscales. Divergent
Sexual quality and validity was also supported by the nonsignificant cor-
functioning self-esteem Mood relations between the BIQS Relationship Quality and
DISF-SR subscales Self-Esteem and Mood subscales and the DISF-SR Sex-
Sexual 0.11 0.08 0.01 ual Functioning subscales. A significant correlation be-
Cognition/ tween the BIQS Relationship Quality and Self-Esteem
Fantasies
subscale and the DISF-SR Orgasm scale was also found.
Sexual Arousal 0.44a 0.27 0.04
Sexual 0.32b 0.30 − 0.06 This was unexpected and requires further consideration.
Behaviour/ We have established subscales for the BIQS, which are
Experiences consistent with recognized constructs of sexuality within
Orgasm 0.68a 0.42a − 0.001 chronic disease. These factors provide a solid conceptual
Drive/ 0.64a 0.36b − 0.11
framework of sexuality following brain injury, which
Relationships
will support future, theoretically driven research in this
field. Furthermore, the BIQS is not sex specific, does
Abbreviations: BIQS, Brain Injury Questionnaire of Sexuality; not assume that respondents are in long-term relation-
DISF-SR, Derogatis Interview for Sexual Functioning—Self-
ships, and allows preinjury comparison, which addresses
Report version.
a P < .01. weaknesses of previous sexuality measures used follow-
b P < .05. ing brain injury. This study forms the foundation for
an ongoing research program investigating sexuality fol-
lowing TBI. Current findings have provided important
psychometric information to justify use of the BIQS
DISCUSSION
within our ongoing investigations of prevalence, causes,
The primary aim of this study was to establish the and consequences of reduced sexuality following TBI.
factor structure of the SQ. In addition, we evaluated key Of the 865 participants in this study, only 635 com-
aspects of the scale’s reliability and validity. Previous pleted all the BIQS items. Closer examination revealed
tools used to measure sexuality following TBI have not that missing data was most problematic for items relating
been specifically developed for TBI, and their psycho- to interaction with a sexual partner. The fact that only
metric properties have not been evaluated within a TBI one-third of our sample considered themselves in a rela-
population. This is the first study of its kind to evalu- tionship may explain this pattern of missing data. These
ate the psychometric properties of a sexuality measure findings further highlight the utility of the BIQS within
specifically developed for TBI. TBI research. Other established sexuality measures often
Original SQ items were largely derived from TBI pa- assume the presence of a regular partner and thus may
tient interviews (during PAQ development) and other result in nonresponse when used in TBI research and
sexuality questionnaires, which supports the content va- clinical practice.
lidity of the SQ (and in turn the BIQS). Although 3 With regard to limitations of this study, although
sections of the PAQ and SQ were originally developed, best efforts were made to consecutively recruit partic-
this organization had not previously been empirically ipants, a significant proportion did not participate. Un-
validated. The present factor analysis results establish a fortunately, reason for nonparticipation could not be
new 3-subscale structure and the SQ has been renamed recorded by the research team because of ethics re-
the BIQS to reflect the scales’ specific measurement of quirements for respondent privacy. It may relate to the
sexuality following brain injury. The BIQS subscales sensitive nature of the study. While those who partici-
measure 3 key constructs of sexuality following brain in- pated in this study were of similar sex and TBI severity
jury: sexual behavior and functioning, relationship and to those who did not, our study sample were slightly
self-esteem aspects of sexuality, and feelings of depres- younger and were more years postinjury than those who
sion and worry about problems with sexuality following did not participate. Furthermore, our sample comprised
brain injury. The BIQS subscales are largely consistent predominantly moderately to severely injured people.
with key components of the Verschuren et al7 concep- These factors should be considered when interpreting
tual framework of sexuality in chronic disease (sexual the aforementioned results. With regard to the conver-
functioning, sexual well-being, and sexual relationships) gent validity analysis, only a subsample of participants
discussed earlier. who were in established relationships and completed the
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Assessment of Sexuality Following TBI 169
DISF-SR were included. Unfortunately, no specific cri- While between 30% and 50% of TBI survivors re-
teria were provided to assist participants’ description of port some level of dissatisfaction with aspects of their
relationship status, which may have impacted reliability sexuality,13,15 22% indicate they would only report sex-
of relationship reporting. No significant between-group ual difficulties if their healthcare professional brought
differences regarding age, sex, length of posttraumatic up the issue first.15 Research investigating potential
amnesia, and BIQS scores were found between the con- clinical applications of the BIQS, including sensitiv-
vergent validity analysis subsample and the wider study ity/specificity data and clinical cut-off scores, would be
sample (all t test and χ 2 analyses were nonsignificant at helpful and may help encourage consistent clinical as-
0.05 α level). However, it is acknowledged that we can- sessment of sexuality following TBI. It is intended that
not assume that the convergent validity results will gen- the BIQS may be used in the future to measure sexuality
eralize to a wider sample of TBI survivors who are not in change in response to treatment programs. Thus, test-
relationships. Finally, participants were not asked regard- retest reliability and sensitivity to change of the BIQS
ing their sexual orientation, and thus further validation should also be evaluated. Furthermore, the potential for
work incorporating sexual preference is warranted. the BIQS to be applied to other acquired brain injury
There is scope for further scale development of the populations (eg, stroke, neurooncology) could be inves-
BIQS. Research evaluating aspects of criterion-related tigated.
validity of the BIQS, such as predictive validity,
would be particularly helpful to investigate expected CONCLUSIONS
consequences of sexuality issues following TBI. It is also
recognized that the BIQS is currently developed for pa- We have provided evidence to support the psycho-
tient use only. Other existing scales of sexuality comprise metric properties of the BIQS in TBI sexuality research
2 forms, which allow comparison of responses between patients. It is anticipated that identification of a reli-
sexual partners. For those TBI participants in relation- able and valid tool such as the BIQS will facilitate con-
ships, it would be useful to develop a partner version of sistency of measurement across studies and improve
the BIQS. Considering reduced insight and communi- overall quality of research in this field. This is turn
cation are commonly reported following TBI, it would will help further our understanding of how sexuality
be interesting to compare responses between partners may be compromised following TBI and what interven-
to investigate whether they are sharing a common tions could be put in place to optimize sexuality in TBI
experience of their sexual relationship following TBI. survivors.
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170 JOURNAL OF HEAD TRAUMA REHABILITATION/MAY–JUNE 2013
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c. Do you have the opportunities to engage in sexual
Appendix 1. Sexuality Questionnaire activities with yourself or others? Yes/No
Answer the following for now compared to prior to
Did you have a sexual relationship/s prior to your your injury on the following scale:
injury? Yes/No Greatly decreased Decreased Same Increased
a. Are you in a sexual relationship now? Yes/No Greatly increased
b. Do you have the opportunities to engage in sexual Sexual Functioning
activities with yourself or others? Yes/No 1. The importance of sexuality
Answer the following for now compared to prior to 2. Your sex drive
your injury on the following scale: 3. The frequency with which you engage in sex
Greatly decreased Decreased Same Increased 4. Your ability to give your partner sexual satisfac-
Greatly increased tion/enjoyment/fulfilment
Sexual Behaviour 5. Your ability to engage in intercourse
1. The importance of sexuality 6. Your ability to enjoy sex yourself
2. Your opportunity to engage in sex 7. Your ability to stay aroused during sex
3. Your sex drive 8. Your ability to climax
4. The frequency with which you engage in sex Relationship Quality and Self-Esteem
5. Your ability to give your partner sexual satisfac- 9. Your opportunity to engage in sex
tion/enjoyment/fulfilment 10. Your ability to verbally communicate with your
6. Your ability to engage in intercourse sexual partner
7. Your ability to enjoy sex yourself 11. Your self-confidence
8. Your ability to stay aroused during sex 12. Your sex appeal
9. Your ability to climax 13. The quality of your relationship with your sexual
Affect and Self-Esteem partner
10. Your self-confidence Mood
11. Your sex appeal 14. Level of depression
12. Level of depression 15. Level of preoccupation with problems
13. Level of preoccupation with problems What do you think are the reasons for any changes
Relationship Characteristics you have noticed?
14. Your ability to verbally communicate with your (You may tick more than one.)
sexual partner No changes Behaviour problems
15. The quality of your relationship with your sexual Decreased mobility Low confidence
partner Loss or decrease in sensitivity Feeling unattractive
What do you think are the reasons for any changes Pain Decline in
you have noticed? relationship
(You may tick more than one.) Tiredness/fatigue Difficulties in
No changes Behaviour problems communicating
Decreased mobility Low confidence Arousal/sex drive problems Limited access to
Loss or decrease in sensitivity Feeling unattractive intimate social
Pain Decline in contact
relationship Other, please specify _____________
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