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Clinical Interviewing Techniques and Sexuality Questionnaires for

Male and Female Cancer Patients


Stanley E. Althof, PhD* and Sharon J. Parish, MD

*Center for Marital and Sexual Health of South Florida, Case Western Reserve University School of Medicine, West Palm
Beach, FL, USA;

Department of Medicine, Albert Einstein College of Medicine, Bronx, NY, USA
DOI: 10.1111/jsm.12035
A B S T R A C T
Introduction. Sexuality is an important aspect of quality of life; however, cancer and its treatments may impact the
sexual function of men and women. Both cancer survivors and healthcare providers have barriers to addressing sexual
problems in the clinical encounter.
Aim. To summarize the key points from the two authors oral presentations at the Cancer Survivorship and Sexual
Health Symposium, International Society for Sexual Medicine-Sexual Medicine Society of North America (ISSM-
SMSNA) Joint Meeting, Washington, DC, June 2011.
Methods. To describe patient-centered communication skills that can improve communication without excessively
increasing the length of the visit. To review the validated sexuality measures that can assist clinicians in gathering
sexual health information and assessing the response to therapeutic interventions for sexual problems.
Main Outcome Measures. Sexual health interviewing skills including screening, assessment, open-ended questions,
empathic delineation, and counseling are discussed. Key sexuality scales including the rationale for their use,
psychometric properties, and patient-reported outcomes are summarized.
Results. Optimal approaches to the spectrum of communication challenges in the male and female sexual health
encounter are exemplied. Advantages and limitations of the array of measures, including structured interviews,
self-administered questionnaires, daily diaries, and event logs, are explained.
Conclusions. Practitioners can improve their detection and management of sexual concerns in cancer survivors by
employing efcient patient-centered communication skills in conjunction with validated sexuality scales. Althof SE
and Parish SJ. Clinical interviewing techniques and sexuality questionnaires for male and female cancer
patients. J Sex Med 2013;10(suppl 1):3542.
Key Words. Sexual Health Interview; Patient-Centered Interviewing; Validated Sexuality Questionnaires; Patient-
Reported Outcomes; Diagnostic Tools; Assessing Sexual Health in Cancer Patients
Introduction
W
ith increasing cancer survivorship, the
heathcare professionals (HCP) task has
expanded from simply treating malignancies and
improving survival rates to addressing how survi-
vors live their lives [1,2]. Sexuality is an important
aspect of quality of life; and unfortunately, cancer
and its treatments may impair sexual function in
both men and women.
Althoughnerve-sparingsurgeries, radiation, and
chemotherapies have greatly contributed to
improve survivorship, sadly the physical impact and
psychological burden of the cancer diagnoses and
ensuing sexual problems often go unaddressed.
Adding to the patients burden is their perception
that healthcare providers are reluctant, disinter-
ested, or unskilled in sexual problem management
[35]. HCPs may be hesitant to discuss sexual issues
due to negative attitudes regarding sexual prob-
lems, time constraints, unrealistic fears of offending
the patient, decits in communication skills, reim-
bursement concerns, the lack of available or
approved treatments, and a growing knowledge gap
between developments in sexual medicine and the
clinical skills of practicing physicians [68].
Patients may avoid addressing their sexual
problems due to a lack of opportunity, as well as a
35
2013 International Society for Sexual Medicine J Sex Med 2013;10(suppl 1):3542
sense of embarrassment or shame [3]. They may
also struggle with the societal taboo against the
open discussion of sexuality, even with their HCP.
In general, cancer survivors are not comfortable
or optimistic about seeking professional help
for their sexual problems [9,10]. They wonder
whether sexual dysfunctions are truly a legitimate
and treatable medical, psychological, or interper-
sonal condition [11]. Complicating the situation is
that patients frequently are uncertain which pro-
vider is a specialist in sexual medicine or suitably
trained to help with this problem. Should they
seek out a family practice physician, urologist,
gynecologist, psychologist, or endocrinologist?
Thus HCPs may be expected to help patients
with complex sexual matters that they may not
have been adequately trained to discuss. Our goal
is to provide clinicians with some of the tools that
can help them feel more comfortable and compe-
tent raising these issues with their patients. This
review of presentations from the Cancer Survivor-
ship and Sexual Health Symposium offers HCPs a
parsimonious set of patient-centered communi-
cation skills that can improve communication
without excessively increasing the length of clini-
cal encounters. We also discuss the validated sexu-
ality measures that can assist HCPs in gathering
information about their patients sexual life.
Information Can Be Gathered via Clinical Interview
or Questionnaires
HCPs can gather information about sexual com-
plaints using an array of methods which can be
complimentary and also tailored to the practitio-
ners setting, skills, and comfort. Sexual health
interviewing is a skill that requires training and
practice. Questionnaires should not be used in lieu
of the clinician taking a sexual history. However,
they can provide data to conrm the issues
discussed in the clinical encounter or add new con-
cerns that require further clarication. Question-
naires administered as screening instruments may
provide an opening for discussions between clini-
cians and patients and may decrease discomfort
with approaching the topic. In patients presenting
with an array of sexual complaints, practitioners
can use validated questionnaires to distinguish and
diagnose specic sexual dysfunctions. A critical
component of the sexuality interview is the explo-
ration of the patients emotional response to a
sexual concern and discussing its impact. Ques-
tionnaires can add detailed as well as qualitative
data about the level of distress and impairment
as well as characterize specic mental health diag-
noses, such as depression, related to sexual prob-
lems [5].
Goals of Sexual Communication
The goals of cancer-related sexual health inter-
views include a spectrum of communication skills
that span the entirety of the clinical encounter.
Table 1 lists the tasks for HCP conducting sexual
health interviews [12].
These tasks incorporate skills related to screen-
ing and identication, assessment, empathy and
counseling, and therapy [12].
Principles of Sexual History Taking
Regarding sexual health conversations, numerous
surveys have demonstrated that patients prefer
their provider to initiate the topic. Normalizing
and universalizing statements put the patient at
ease and allow the patient to contextualize his or
her situation. Patients feel more comfortable when
their provider demonstrates ease with the topic
[7,14]. HCPs should use simple, direct language;
and within their comfort zone, they may model the
level of explicitness of the sexuality discussion.
Other critical elements include demonstrating
awareness of the patients cultural background;
ensuring condentiality; and avoiding ageism,
being judgmental, and assumptions about sexual
orientation and monogamy [7]. Interviewing
couples alone and together will enable the HCP
to learn about and show interest in each partys
perspective.
The BETTER Model
The BETTER Model can assist HCPs include
sexuality assessment in the care of patients with
cancer [15]. The mnemonic BETTER stands for:
BBring up the topic of sexuality and sexual
functioning.
EExplain to the patient or partner that sexuality
is part of quality of life and can be discussed.
TTell the patient that resources will be provided
and about the healthcare teams willingness and
interest in addressing sexual concerns.
TTime the discussion for when the patient
wishes to raise the topic, emphasizing the
patient can raise the topic at any time.
EEducate the patient about the possible or
expected changes or sexual side effects of treat-
36 Althof and Parish
J Sex Med 2013;10(suppl 1):3542
ment and available interventions for treatment-
emergent sexual symptoms.
RRecord in the patients chart the content of
the sexual health discussions, assessments, inter-
ventions or outcomes; recommend follow-up
to further address the patients concerns and
questions.
The clinician can enhance this sexual health
communication strategy by incorporating a mul-
tidisciplinary team to address the specialized
psychological, social, and physiological needs
of cancer patients and using effective referral
strategies.
Screening for Sexual Dysfunction
Sexual problems in cancer patients are common,
and patients prefer HCPs to initiate conversations.
Screening for sexual problems improves detection
of sexual concerns while not burdening the patient
with having to raise an uncomfortable issue [16].
When screening, practitioners should initiate the
conversation with an open-ended ubiquity style
question, which may have a higher yield than a
direct question alone [17].
An example of a ubiquity statement followed by
a directed open-ended question is Many women
who have been treated for breast cancer experience
sexual problems; how about you? The practitio-
ner can continue the inquiry with specic ques-
tions, using the sexual response cycle as a guide:
Are you having any problems with desire or inter-
est in sex? Are you having any problems with
lubrication or pain during intercourse? Do you
experience sexual excitement and/or pleasure? Are
you having any problems with orgasm? An alter-
native approach, guiding the patient, is to inquire
Tell me about a typical or your most recent sexual
experience. The interviewer should follow up
positive responses with open-ended or clarifying
questions such as Tell me more. What do you
mean by that?
Given the possibility of the emergence of sexual
concerns and problems related to cancer and its
treatment, the HCP can use screening strategies to
assess baseline sexual satisfaction and function. The
clinician can repeat screening inquiries and ask
follow-up questions with the initiation of cancer
treatments or the development of symptoms that
may precipitate or aggravate sexual issues.
Sexual Problem Assessment
Once a sexual problem is detected, the HCP
should conduct a thorough evaluation of its char-
acteristics. The recommended assessment includes
the following key areas of inquiry [18].
1. What phases of the sexual response cycle are
affected, and does the patient experience coital
and/or noncoital sexual pain?
2. Is there more than one sexual dysfunction
present? If more than one sexual dysfunction is
Table 1 Goals of cancer-related sexual health interviews
Screening and identication
Screen and identify sexual concerns, including their severity, persistence, and pervasiveness.
Diagnose sexual dysfunctions [13].
Determine the nature of the sexual problem; identify biological, psychological, social, and cultural causes and factors.
Assessment
Discern whether a dysfunction is generalized or situational.
Differentiate between psychogenic, organic, or a mixed problem(s).
Discriminate between long-standing and cancer-emergent sexual dysfunction(s).
Determine the impact of the illness and the associated sexual dysfunction on the patient and partners quality of life [14].
Empathy and counseling
Delineate and empathically witness the distress related to a sexual problem.
Normalize and universalize the problem and its consequences.
Reframe attention to the sexual problem as legitimate.
Offer support and partnership in approaching and addressing its resolution.
Therapy
Explain the impact of the cancer and its treatment on sexual health.
Obtain informed consent regarding the effect of cancer treatment on sexual function.
Explain treatment/behavioral advice for sexual function and its expected outcome.
Assess satisfaction with sexual dysfunction interventions.
Normalize and recommend referral.
Sexual Interviews and Questionnaires for Cancer Patients 37
J Sex Med 2013;10(suppl 1):3542
present, explore the sequence of the emergence
of sexual response cycle disorders, i.e., did pain
precede low desire or was low desire the earliest
complaint?
3. Is the sexual dysfunction(s) lifelong or newly
acquired with the onset of cancer and/or its
treatment?
4. Is the sexual problem generalized or situ-
ational? Does the problem occur only with the
partner(s) or also with masturbation?
5. Was the onset of the sexual problem sudden or
gradual? Primarily psychological problems
tend to start abruptly in conjunction with psy-
chosocial events or factors, whereas biological
problems may develop more slowly and corre-
late with the progression of organic disease or
biological interventions.
6. What are the biological, sociocultural, and psy-
chological causes from both the patients and
HCPs perspective? Which factors are most
amenable to intervention?
7. What is the life impact and distress related to
the sexual problem for the patient and the
partner? Are the experiences of both parties
similar or different, and what is the level of
communication between partners?
Open-Ended Questions
Physicians and other HCPs are generally strong
at conducting symptom-based assessments.
However, practitioners are weaker at assessing
functional impairment, associated emotions, the
psychosocial context, as well as patients explana-
tory models of illness. In one study physicians
asked approximately one question per minute, and
over 90% were closed ended [19]. In a study
of in-ofce physicianpatients dialogues about
females distressing low sexual desire, 93% of
questions about sexual function were closed ended.
Only 1% of afrmative answers to closed-ended
questions prompted open-ended follow-up [20].
Open-ended questions require narrative elabo-
ration. Directive open-ended questions focus the
topic but do not prescribe the response; they open
the door to context, understanding, and feelings.
The HCP may combine a directive open-ended
question with a reective statement such as: Tell
me more about why you are afraid to have sex since
you started treatment for breast/prostate cancer?
In fact, open-ended dialogue can be efcient. Phy-
sicians trained to use open-ended questions about
impact and distress can discover functional impair-
ment in approximately 90 seconds and effectively
reveal syndromal symptoms [19].
Open-Ended Questions about Impact and Distress
In the in-ofce dialogue study discussed above,
research assistants were trained to use two open-
ended questions about impact and distress:
1. ImpactTell me how, if at all, the decreased
desire/pain has affected your life?
2. DistressWhat is the most distressing or
bothersome thing for you about decreased
sexual desire/pain?
Open-ended follow-up questions were
employed for brief or ambiguous responses. These
two questions were most effective in revealing new
information that the physician did not previously
uncover. Half of the patients (49%) revealed new
information about the partner, 33% about their
mental or emotional state, and 35% about their
relationship. Additionally, the majority (82%) of
the patients self-rated as very distressed were rated
as moderate to not distressed by the physician on
post-visit questionnaires [20].
Eliciting and Continuing to Elicit the Narrative
Once the interviewer denes the nature of sexual
problem and delineates related impact and per-
sonal distress, the next step is to listen for critical
elements in the patients speech and ask directive
open-ended questions to follow the thread. For
example if a patient states, Since I started chemo-
therapy, I just dont want to have sex with Frank
the way I used to. Its got me so down, and hes so
. . . [pause]. Its just no good now. The practitio-
ner can replace the it with the most important
word from the last sentence, such as Tell me
about Frank . . . chemotherapy . . . feeling down,
etc. While the patients statement in this example
offers the HCP numerous leads about how to
direct the interview, it is important to recognize
that any choice will open the door to the patients
story.
The practitioner can continue to elicit the nar-
rative by using emotionally supportive statements
such as That sounds distressing (upsetting, fright-
ening, embarrassing) . . . as well as continuers
such as Go on; Tell me more; OK and silence.
The interviewer can restate with clarication to
conrm understanding: Do you mean that you
had discomfort or pain when he was touching you
or when he tried to penetrate?
38 Althof and Parish
J Sex Med 2013;10(suppl 1):3542
Empathic Delineation
The HCP can utilize empathic delineation of a
sexual problem as a key therapeutic intervention.
Skills include normalizing and universalizing the
sexual problem, emotional response, and effect of
treatment, as well reframing attention to the sexual
problem as a legitimate priority. Part of the
therapy is discussing the problem and beginning to
empower the patient in the process of solving it.
Empathic delineation can help the patient link dis-
tress to the motivation to seek treatment.
Motivating Patients to Seek/Accept Treatment
Patients may be ambivalent about addressing or
seeking treatment for sexual complaints. Strategies
that employ patient-centered techniques can
engage the patient in the decision-making process
and embrace the patients perspective. Motiva-
tional interviewing strategies such as the Ask-Tell-
Ask [21] sequence encourage the HCP to begin
the counseling or disease education process with
an open-ended question (ask), seeking to under-
stand the patients level of knowledge, or attitudes.
Listening to the patients response, the provider
can tell the patient focused chunks of informa-
tion, and then ask for a reaction, and assess
ambivalence to change. Further explanations can
be directed at patients expressed emotions, con-
cerns, or uncertainties [21]. The Ask-Tell-Ask
technique ensures that (i) the doctorpatient inter-
action remains a dialogue and that (ii) the infor-
mation to be given is appropriate for the patient
and meets his or her agenda [22].
Sexuality Scales to Collect Information
This manuscript now changes its focus from
interviewing skills and technique to the use of vali-
dated questionnaires. Sexuality Questionnaires or
Patient Reported Outcomes (PROs) offer HCPs a
quick, reliable, inexpensive, and precise method of
gathering information about their patients sexual
life. Questionnaires are used to (i) identify and
diagnose individuals with sexual dysfunction; (ii)
assess the severity of a sexual problem; (iii) deter-
mine the efcacy of an intervention and to detect
meaningful change in symptoms; (iv) assess the
individuals satisfaction with the treatment; (v)
measure the impact of a dysfunction upon an indi-
viduals or partners quality of life; and (vi) learn
about the impact of the dysfunction on the partner
[23,24].
Psychometric Properties That a Scale
Must Possess
PRO development consists of multiple stepwise
statistical procedures that assure that the measure
meets or exceeds established psychometric stan-
dards. It is essential that PROs demonstrate reli-
ability, validity (known groups, convergent and
divergent), and sensitivity to detect changes in a
specied population. Additionally, if the PRO con-
tains scales or domains, the items within these
scales and the relation between the scales and total
score must also meet established principles.
Reliability insures that the questionnaires mea-
surement is stable or reproducible. Thus, without
any intervention, the individuals score should not
signicantly change.
There are several types of validity: face, known
groups, construct, convergent, and divergent;
however, they all insure that one is measuring what
you believe you are measuring (e.g., the patient
has female hypoactive sexual desire disorder). For
sexually related PROs, sensitivity refers to the
correct classication of individuals who have a dys-
function and specicity refers to the correct clas-
sication of those individuals who do not have a
dysfunction or the true positive and true negative
rates, respectively. Developing a PRO in this
manner ensures that the clinician or investigator
has a valuable tool for diagnosis and/or detection
of change.
Different Types of PROs Used to Access
Sexual Health
There are several different types of PROs used in
sexual health research. Each type has a specic
purpose as well as both clinical and psychometric
advantages and disadvantages. Table 2 lists the dif-
ferent varieties of PROs and offers examples of
each. The PROs listed in Table 2 are what we
believe to be the very best measures available to
assess male and female sexual health.
Structured interviews guide the HCP through
a series of questions in a specic order. They
provide for an in-depth assessment leading to
summary diagnostic conclusions. Limitations of
this method are the requirement for staff to be
trained and qualied in administration technique,
the cost and time it takes for the staff to administer
the interview, and concern that it is an excessive
burden on patients.
Self-administered questionnaires (SAQs) are a
series of questions and response sets completed in
private by the patient. There are both paper and
Sexual Interviews and Questionnaires for Cancer Patients 39
J Sex Med 2013;10(suppl 1):3542
pencil versions of SAQs as well as electronic ver-
sions. SAQs allow for a multidimensional assess-
ment of sexual concerns while being inexpensive,
time efcient, and not overburdening the patient.
They are limited by subjects who are unwilling to
accurately report on their experiences or may not
be accurate observers of their experience. There
is some concern regarding SAQs recall period.
If sex occurs infrequently it is not difcult to
recall the event; however, with greater frequency
recall may be inuenced by primacy and recency
issues.
Daily diaries or event logs ask subjects to
respond to one or multiple yes/no questions either
on a daily basis or after a specic event (sexual
behavior) has occurred. Diaries provide for mul-
tiple recording of events offering clinicians aggre-
gation of data. It also allows HCPs to track
medication use and number of sexual events.
However, as the complexity and subjectivity of
a construct increases diaries become less useful.
For instance, events like incontinence are easy to
measure in a diary format; subjective phenomenon
like sexual desire is much more difcult. Addition-
ally, many diaries have not been psychometrically
validated calling into question the usefulness of the
subjects responses.
Finally, there is a concern that daily sampling
might lead to contamination and higher placebo
rates. Because diaries employ ordinal measure-
ment (yes/no responses that constitute ordinal
levels of measurement), the types of psychometric
tests that can be applied to the data are limited.
With the high placebo rates seen in sexual health
research and coarse measurement via diaries there
is an increased likelihood of a Type II error and
the possibility of missing effective therapeutic
interventions.
Table 2 Male and female sexuality measures
Structured interviews
Items Features Domains
Sexual Interest and Desire Inventory (SIDI-F) [25]
13 Measure of HSDD severity Severity of HSDD in women
Changes in Sexual Functioning Questionnaire (CSFQ) [26]
35 Male and female illness, medication-related changes in sexual
function
Sexual pleasure, sexual desire/frequency of sexual desire/
interest, arousal, orgasm
Derogatis Interview for Sexual Functioning (DIFS/DIFS-SR) [27]
25 Male and female screening and outcome assessment Sexual cognition and fantasy arousal, sexual behavior and
experience, orgasm, sexual drive and relationship
Self-administered questionnaires for men
International Index of Erectile Function (IIEF) [28]
15 Screening and outcome assessment Erectile function intercourse satisfaction, orgasmic function,
sexual desire, overall satisfaction
Erectile Hardness Scale [29]
1 Outcome assessment Hardness
Index of Premature Ejaculation (IPE) [30]
10 Outcome assessment Control, distress, and satisfaction
Premature Ejaculation Prole (PEP) [31]
4 Outcome assessment Control, distress, satisfaction, and interpersonal relationship
Premature Ejaculation Diagnostic Tool [32]
5 Diagnostic screener PE, no PE, probable PE
Male Sexual Health Questionnaire-Ejaculatory Dysfunction Scale (EjD) [33]
4 Screening and outcome measure for ejaculatory dysfunction
and bother
Ejaculatory function domain, bother related to ejaculation
Self-administered questionnaires for women
Female Sexual Function Index (FSFI) [34]
19 Screening and outcome assessment Desire, arousal, lubrication, orgasm, satisfaction, and pain
Arizona Sexual Experiences Scale (ASEX) [35]
5 Evaluating psychotropic drug-induced sexual dysfunction Sex drive, arousal, lubrication/erection, orgasm, and satisfaction
from orgasm
Female Sexual Distress-Revised (FSDS-R) [36]
13 Screening and outcome assessment Distress
Decreased Sexual Desire Screener (DSDS) [37]
5 Diagnosis of acquired and generalized HSDD in women HSDD in women
HSDD = hypoactive sexual desire disorder
40 Althof and Parish
J Sex Med 2013;10(suppl 1):3542
Conclusion
Sexuality is an important aspect of quality of life;
and unfortunately, cancer and its treatments may
impair sexual function in both men and women.
HCPs have been shifting their focus from sur-
vival or prolonging life to assisting patients in
improving the quality of their life. Yet there are
resistances on the side of both the clinician
and patient that hinder open discussion of sexual
concerns.
This manuscript focuses on developing sexual
health interviewing skills including screening,
assessment, open-ended questions, empathic
delineation, and counseling. These techniques
provide HCPs with the tools to effectively and
efciently inquire into the sexual concerns of their
patients. They are easily learned and help the
HCP to transcend the traditional barriers against
discussion of sexual issues. Patients will greatly
appreciate the willingness of their HCP to address
their sexual concerns.
There are a myriad of validated sexual scales
that can be effectively used to diagnose and assess
male and female sexual problems. Although such
scales are simple to use and time efcient they
should never be used in lieu of taking a sexual
history. Rather they help to round out the clinical
picture that is delineated by the sexual history
process. Using scales on a regular basis assists
in determining the success or failure of clinical
interventions.
Sexual health interviewing and the administra-
tion of PROs are complimentary techniques that
address an important quality of life concern for the
cancer survivor. HCPs need not fear that they are
opening a Pandoras box. Having permission
to discuss sexual concerns, feeling understood,
and discussing treatment options all enhance the
relationship to the HCP.
Corresponding Author: Stanley E. Althof, PhD,
Center for Marital and Sexual Health of South Florida,
Case Western Reserve University School of Medicine,
1515 N. Flagler Drive, Suite 540, West Palm Beach, FL
33401, USA. Tel: 561-822-5454; Fax: 561-822-5458;
E-mail: stanley.althof@case.edu
Conict of Interest: Dr. Althof is a consultant to or advi-
sory board member of Allergan, Abbott, Bayer, Eli
Lilly, Promescent, Palitan, and Sprout. He serves as
the principal investigator on clinical trials to Endoceu-
tics, Palitan, and Trimel. Dr. Parish is a consultant to
or advisory board member of Novo Nordisk and
Sprout.
Statement of Authorship
Category 1
(a) Conception and Design
Stanley E. Althof; Sharon J. Parish
(b) Acquisition of Data
Stanley E. Althof; Sharon J. Parish
(c) Analysis and Interpretation of Data
Stanley E. Althof; Sharon J. Parish
Category 2
(a) Drafting the Article
Stanley E. Althof; Sharon J. Parish
(b) Revising It for Intellectual Content
Stanley E. Althof; Sharon J. Parish
Category 3
(a) Final Approval of the Completed Article
Stanley E. Althof; Sharon J. Parish
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