Adolescents and young adults aged 15–39 years who have been
diagnosed with cancer (AYAC) have unique medical and psychosocial needs.
Following their cancer treatments, AYAC must learn to manage the sometimes
irreversible general side effects of cancer treatments including side effects
that impact their sexuality. These side effects include but are not limited to:
infertility, altered body/physical appearance, and sexual dysfunction. Such
effects may hinder AYAC efforts to date and experiment sexually, limiting
sexual maturation and confidence, as well as the formation or maintenance of
meaningful couple and sexual relationships. It is clear that we need to tailor
our clinical approaches to ensure that we assess the unique needs and concerns
faced by AYAC.
Based on consistent study findings substantiating the
distinctive needs of AYAC, the main objective of this article is to present the
core clinical components involved in assessing sexuality among AYAC.
The clinical recommendations are based on the authors and
experts' clinical experiences coupled with a thorough examination of the
literature related to AYAC sexuality.
This article first describes the three components (clinical
interview, review of chart notes, and self-report questionnaires) of a
sexuality assessment and the seven core domains that highlight target areas of
focus.
A detailed outline of each of the core domains of assessment
(socio-demographics; medical history; fertility and sexually transmitted
infection; sexual functioning; sexual coping style; body and self-image; and
sexual history and dating/couple experience) is presented. A “toolbox” table
containing useful resources for clinicians (e.g., questionnaires and red flags)
and direct resources for AYAC patients are included.
Cancer can have a significant impact on numerous domains of
AYAC sexuality. The assessment of and attention to the impact of sexuality on
AYAC is crucial in order to provide effective and comprehensive quality patient
cancer care.
Key points for conducting a clinical interview with AYAC
- ✓ Use a direct, open, non-judgmental, interactive communication style
- ✓ Utilize a mentorship/life coach approach, balancing teamwork and autonomy
- ✓ Meet AYAC alone as opposed to with their parents
- ✓ Ensure confidentiality of information, highlighting that nothing will be shared with parents and/or other team members (unless permission is granted by AYAC)
- ✓ Allow AYAC to ask questions, and clinicians can provide psycho-education
- ✓ Validate and normalize AYAC concerns that may be related to sexual inexperience
|
Red flags and selected clinician and patient resources for core domains of AYAC sexuality assessment
| Core domain | Key tips/red flags | Resources for clinician | Resources for patient |
|---|
| I. Socio-demographics |
 Contextualize sexual impact as a function of socio-demographics (e.g., age, culture, family, single or couple)- Consider financial factors and changes in living situation that impact sexuality (e.g., moving back home with parents)
- Assess and consider sexual orientation
- Use appropriate, non-heterosexist language to ensure cultural responsibility and competency
|
- sm20003-0198-mu1.png
 National LGBT Cancer Network [44].
|
|
| II. Medical History |
- Comprehensive inquiry of AYAC medical history (e.g., history of cancer diagnosis/recurrence, concomitant illnesses' treatment with medications)
- Examine sexuality within the context of patients' mental and physical health (e.g., ability to engage and meet daily activities)
- Consider HRQL
|
 Quality of Life-Cancers Survivors** [45] and Peds QL* [46]- Functional Assessment of Cancer Therapy—General (FACT-G)** [47]
| |
| III. Fertility and STIs |
- Review clinical notes/reports from fertility specialists
- Assess psychosocial impacts of loss/compromised fertility
- Consider desirability as a potential partner, grief concerning biological parenthood, low/poor self-esteem, threat to the formation/survival of couple relationships
- Referral to specialist to determine current reproductive functioning (if unknown)
- Educate about safe sex practices (e.g., contraception, STIs, HPV vaccination)
|
|
|
| IV. Sexual Functioning |
- Assess direct impacts of treatment (e.g., chemotherapy, surgery) on sexual functioning
- Special attention directed at negative impacts of treatments on genito-urinary, pelvic, or hormonal areas
- Consider common sexual complaints such as issues related to desire, arousal, orgasm, pain during intercourse
- Referral to specialists (e.g., gyno-oncologist, uro-oncologist) to rule out medical etiology of sexual complaints
|
 [52],[53]- Chapter 2 for an overview; Chapters 4–12 for treatment related side effects for specific cancer sites cancers [10]
- Range of Sexual Function and satisfaction scales 39–43
- Female Sexual Function Index** [54]
- UCLA Prostate Cancer Index** [55], and its longer version** [56], the Expanded Prostate Index Composite (EPIC) [57]
- the International Index of Erectile Function (IIEF)** [58] and its shorter version, the IIEF-5** [59]
- Sexual function—Vaginal changes Questionnaire (SVQ)** [60]
|
- Menopause Guidebook [61]
|
| V. Sexual Coping Style |
- Assess the short vs. long-term repercussions of sexual avoidance for AYAC
- Assess use of substances to alleviate sexual anxiety or enhance sexual performance
- Inform AYAC about the effect of drugs/alcohol on sexuality
|
| |
| VI. Body and Self Image |
- Assess changes to physical appearance that can impact self-esteem, sexual assertiveness, sexual experimentation, and significant sexual/couple experience
- Assess AYACs' frame of mind during sex
- Inquire about “sexual hypervigilence” to any affected areas
|
- Body Image Scale [64]
- Sexuality Scale [65]
- Sexual Beliefs and Information Questionnaire (SBIQ) [66],
- Negative Thoughts During Sex Questionnaire (NTDSQ) [67]
|
|
| VII. Sexual History and Dating/Couple Experience |
Assess if and how cancer impacted:
- ○ Sexual experimentation and experiences (number and type of partners)
- ○ First sexual encounter and anal/vaginal intercourse
- ○ Identification of sexual preferences (partners and types of sexually arousing activities)
For couples and partners, consider high risk factors for relationship loss or troubles
- ○ Consider the length of relationship
- ○ Consider that the partner may ill-equipped or not ready/willing to take on the responsibilities of the caregiver role
|
- Cancer rehabilitation evaluation system (CARES) Dating Subscale [68]
- Dyadic Adjustment Scale (DAS) [69],[70]
- Personal Assessment of Intimacy in Relationships (PAIR) [71]
|
|
*Validated instrument using AYAC as the population sample
**Validated instrument in oncology population
†Cancer Blogs from AYAC, relevant to all seven core domains
‡The Huffington Post's hub of young adult cancer content, from recurring survivor blogs, to what's new in the medical world
, Represents a “red-flag” tip for the clinician to asses
, Represents a self-report questionnaire
sm20003-0198-mu1.png, Represents an online resource
, Represents a reading, e.g., a book, article or pamphlet
*Lady Davis Institute, Jewish General
Hospital, Montreal, QC, Canada
†Department of Psychology, McGill
University, Montreal, QC, Canada
‡Louise Granofsky Psychosocial Oncology
Program, Segal Cancer Center, Jewish General Hospital, Montreal, QC, Canada
Corresponding Author: Sylvie Aubin, PhD, Jewish General Hospital,
Montreal, 3755 Cote-Ste-Catherine Rd, # E-756, Montréal, QC, Canada H3T 1E2.
Tel: (514) 340 8222 x6865; Fax: (514) 340 7968; E-mail: ac.lligcm@nibua.eivlys
