San Francisco, CA—Adolescent and young adult (AYA) patients with cancer consistently indicate the need for better communication from their oncology providers on matters concerning sexual health. Despite misconceptions that the topic may embarrass them or fall on deaf ears, surveys show that AYAs actually want to talk to their providers about topics such as dating, safe sex practices during treatment, contraception, body image, sexuality, fertility, and psychosexual adjustment.
Unfortunately, clinicians rarely include sexual health in routine conversations with AYAs during treatment and survivorship, but according to Natasha N. Frederick, MD, MPH, MST, Director, Comprehensive Fertility and Sexual Health Team, Connecticut Children’s Medical Center, Hartford, that needs to change.
At the 2019 Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology annual meeting, she shared some of the most common barriers and facilitators to sexual health communication with AYAs.
Sex and AYAs
Healthy AYAs frequently engage in risky health behaviors, including risky sexual health behaviors, as part of normal development. Nearly half of high school students in the United States have had sexual intercourse, with only approximately 59% reporting condom use during the last time they had intercourse.
Nearly 70,000 AYAs (ages 15-39 years) are diagnosed with cancer in the United States each year, and adolescents with chronic disease are at increased risk for engaging in risky behaviors compared with their age-matched peers. Many AYAs remain sexually active during cancer treatment and tend to use contraception less often than their peers without cancer. Some even experience sexual debut during cancer treatment.
Sexual issues that arise from cancer treatment can be biologic/physical (eg, changes in hormones, infertility, disfigurement), psychological (eg, depression, anxiety), interpersonal (eg, fear of intimacy), social/cultural (eg, religious beliefs), developmental (eg, autonomy, identity development), or knowledge-based (eg, inadequate anticipatory guidance). However, even though AYAs consistently indicate the need for improved communication about these sexual health issues, oncology providers often underestimate the relevance of discussing sex with their AYA patients and forget to include these conversations as part of their ongoing assessments.
AYAs are generally uncomfortable broaching the topic, underscoring the need for providers to take the reins and bring it up themselves. However, most clinicians still are not talking about it, largely because of discomfort and lack of knowledge. According to Dr Frederick, the vast majority of clinicians recognize the importance of talking about sexual and reproductive health with their AYA patients, but they simply do not know how to talk about it knowledgeably and confidently.
“We can’t make assumptions about their sexual history,” said Dr Frederick. “We have to ask.”
Why Do AYAs Need These Conversations?
Approximately 30% of AYA survivors report problems with sexual function, and 20% report sexual limitations because of their cancer. Sexual dysfunction has a significant effect on quality of life, and generally does not improve with time; more than 50% of AYA patients report ongoing problems with sexual function 2 years out from diagnosis.
Surveys of AYAs with cancer have revealed that they want direct communication from clinicians about sexual health, and they want clinicians to initiate these ongoing conversations.
“That one-time talk about fertility before starting treatment is not enough,” Dr Frederick said. “It needs to include sexual health and it needs to continue throughout the cancer trajectory.”
They want time alone with their clinicians to talk about these sensitive issues in a safe and appropriate environment, and they want the subject matter to be normalized, rather than taboo.
In starting the conversation, respect the patient’s confidentiality and make very clear to them what will and will not be documented in the medical record or shared with parents or other family members, she advised. Individualize these conversations rather than speaking in broad, vague terms, and consider factors such as the patient’s gender identity and sexual orientation.
Perhaps most importantly, do not make assumptions. “Don’t think that because they’re in the throes of cancer treatment that they’re not sexually active,” Dr Frederick said. “You will be surprised what you’ll find out if you ask them.”
The 5 As
There are myriad approaches to discussing sexual health with AYAs, but Dr Frederick said one communication framework in particular—the 5 As—has been successful at her institution: Ask, Advise, Assess, Assist, and Arrange follow-up:
Introduce the topic of sexual health and ask the patient for permission to proceed with the conversation. “If they say no, move on and bring it up next time,” she advised.
Depending on patient need, provide a brief overview on a specific sexual health topic, such as puberty, contraception, or safe sex practices. “You don’t need to go through everything at one visit,” she noted. “One of the benefits to our care is that we’re going to see these patients on a regular basis over a protracted period of time.”
Ask additional questions to understand patient education and support needs. “I also tell them that I ask these questions of every single one of my patients,” said Dr Frederick. “That helps to normalize the conversation, and patients don’t feel like you’re targeting them.”
Provide brief counseling based on the conversation, give any appropriate resources (eg, pamphlets, website links), and make any necessary referrals. “This is where it’s really important to know who your partners are within your community,” she noted.
- Arrange follow-up.
Schedule a follow-up appointment to review identified problems or concerns.
According to Dr Frederick, helpful provider resources for initiating these conversations can be found through the National Coalition for Sexual Health (https://nationalcoalitionforsexualhealth.org) and Physicians for Reproductive Health (https://prh.org/medical-education).
“What it really comes down to is being comfortable with the conversation,” Dr Frederick said. “You need to find the technique that works for you, but the most important step you can take is to ask.”