An unspoken cost of treatment: Addressing the sexual health needs of AYAs with cancer
With today’s instantaneous access to information with the mere swipe of a finger, navigating adolescence and young adulthood has never been more challenging.
A cancer diagnosis during this phase of life can be devastating to the development of a sense of individual identity, establishment of the psychosexual self and beginning of romantic relationships. Delays in these important milestones can lead to lifelong issues with self-esteem and intimacy.
With nearly 90,000 new diagnoses and 5-year survival rates exceeding 80%, the number of survivors of adolescent and young adult (AYA) cancer living in the U.S. is estimated to be 633,000 and will continue to grow. Half of young adult survivors of childhood cancer struggle with at least one major sexual problem within 2 years of diagnosis, and 30% report two or more problems. With a rapidly growing population of survivors experiencing sexual dysfunction, there is a pressing need to discuss sexual health concerns.
APPs play a significant role in the care of AYA patients with cancer and their loved ones and, thus, we can no longer wait for “someone else” to address these issues. APPs are well-positioned to discuss sensitive topics such as sexuality concerns with patients because of their compassion, knowledge, established trust and access to AYA patients.
Sexual practices of AYAs
To comprehend the scope of the sexual health problem, we need to understand sexual practices of AYAs.
Over half of U.S. teens have had sexual intercourse by age 18 years, with the average age of sexual debut being 16 years. AYAs with cancer report similar rates of sexual activity compared with adolescents without cancer; thus, oncology providers must consider addressing issues related to sexual health as a routine part of their role.
In the largest sexual health study of on-therapy AYA patients with cancer to date, Fladeboe and colleagues found 30% of AYAs reported they were dating during therapy; 13% were sexually active; 23% were considering having sex; and 18% were having oral, anal or vaginal sex. A striking 75% of AYAs acknowledged inconsistent birth control use, with an additional 54% disclosing inconsistent condom use. No participants expressed any concern about sexually transmitted infection.
Views on communication
AYAs have articulated their view of communication regarding sexual health in qualitative studies.
According to a study by Albers and colleagues, 82% of AYA patients with cancer surveyed reported information and counseling related to sexuality as an unmet need at the time of diagnosis. Additionally, 79% of AYAs were dissatisfied with the way the information on intimacy and sexuality was provided, and only 12% were able to have any discussion about sexuality with a provider in the first 6 months of their treatment.
Most of the AYAs surveyed listed nurse practitioners (61.8%) as the health care provider most suited to discuss intimacy and sexuality, followed by sex therapist (49.1%), physician (41.8%) and psychologist (38.2%). Further, AYAs felt that the provider should initiate the sexual health conversation, not the AYA.
AYAs have identified perceived provider discomfort, lack of rapport with the clinician, discomfort initiating the conversation and presence of family members as barriers to communication.
AYA patients described their preferred methods for receiving information on sexual health as from a website, having a conversation with a health care professional or by communicating with a fellow AYA. Interestingly, social media or smartphone apps were the least preferred sources of information.
AYAs identified six themes for clinicians to improve care delivery in the area of sexual health, including to initiate the conversation, offer time alone, normalize, engage in ongoing conversation, individualize and directly communicate with the AYA.
Additional tips for successful sexual health conversations include using simple, dignified words; starting with the least sensitive topics first; asking open-ended questions; staying nonjudgmental; and practicing the conversation. It is helpful to have a few conversation starters that feel comfortable and routine. Normalizing examples include, “Many patients I have cared for shared that they are concerned about how cancer can affect their relationship and sex life. Is this something you have thought about?” or, “It is common for teens to feel that cancer has affected their romantic relationships and sense of intimacy. Has this been the case for you?”
Identify trusted resources within your institution, including a fertility team or those in gynecology, urology, adolescent medicine or psychology who can be a reference point for education and/or referrals. Additionally, work with your team to find a list of web resources that patients can safely access for accurate information (see Table).
Considerations for providers
There are a few important considerations that must be mentioned in any discussion related to sexual health.
First, providers need to understand and identify individual biases, as these personal “hot buttons” can influence how we react to different situations. Identifying important cultural, religious and other prior experiences that we bring to each interaction and that shape our responses will better prepare us to listen openly and without judgment.
Another critical issue is understanding the privacy and confidentiality laws that impact adolescent health care. Reviewing with the AYA patient when you may be required to share private information is an important part of maintaining honest communication, and offering to share information together with the AYA and their parent promotes ongoing trust.
Lastly, sexual health is important to all populations regardless of age, sexual/gender identity, religion, culture, relationship status or prognosis. Sexual health encompasses relationships, physical functioning and self-identity, and disruption of psychosexual development and sexual dysfunction are profoundly distressing long-term side effects of cancer treatment.
Despite the prevalence of sexual dysfunction in the AYA population, there are limited guidelines for oncology clinicians on screening and addressing sexual health dysfunction. By legitimizing the topic of sexual health as an essential component of AYA cancer care from the outset of treatment, health care providers support patients’ ability to raise concerns about sexuality throughout their illness and survivorship.
APPs have been identified by AYA patients with cancer as a trusted member of their health care team and are well-positioned to fill the communication gap that exists in addressing sexual health needs.
- References:
- Albers LF, et al. J Adolesc Young Adult Oncol. 2020;doi:10.1089/jayao.2019.0065.
- Chao C, et al. J Clin Oncol. 2020;doi:10.1200/JCO.20.00722.
- Fladeboe KM. J Adolesc Young Adult Oncol. 2020;doi:10.1089/jayao.2020.0001.
- Frederick NN, et al. Pediatr Blood Cancer. 2016;doi:10.1002/pbc.26041.
- Frederick NN, et al. Pediatr Blood Cancer. 2018;doi:10.1002/pbc.27087.
- Frederick NN, et al. Pediatr Blood Cancer. 2019;doi:10.1002/pbc.27673.
- Perez GK, et al. Am Soc Clin Oncol Educ Book. 2020;doi:10.1200/EDBK_279787.
- For more information:
- Stacy Whiteside, APRN, MS, CPNP-AC/PC, CPON, is a nurse practitioner in the Fertility & Reproductive Health Program of the department of hematology/oncology/BMT at Nationwide Children’s Hospital. She can be reached at stacy.whiteside@nationwidechildrens.org.
- HemOnc Today collaborated with Association of Pediatric Hematology/Oncology Nurses on the submission of this column.
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