FOR MANY adolescents and young adults (AYAs), the most distressing and troubling phase of the cancer continuum that began with diagnosis is survivorship, and among the toughest challenges are those involving sexual health and reproduction, Jessica Gorman, PhD, MPH, stated at the 11th Annual Oncofertility Consortium Conference in Chicago.1
Jessica Gorman, PhD, MPH
Dr. Gorman shared a comment from a young cancer survivor who noted that although the treatment she received for breast cancer had ended, “the fertility issue stays with you for life. It changes the whole course of life…. To not have kids changes everything.”
Dr. Gorman, Assistant Professor, College of Public Health and Human Services, Oregon State University, Corvallis, stressed the importance of physicians and other health-care professionals initiating discussions about the reproductive and sexual health concerns of AYA cancer survivors. The conference was attended by 235 health-care professionals, primarily physicians, nurses, and students, as well as patient navigators, genetic counselors, and others.
Unmet and Changing Needs
AYA CANCER SURVIVORS, “along with their partners, families, and caregivers, need to navigate a system that doesn’t necessarily meet their needs across the cancer continuum. Since this population is so diverse, there isn’t really a one-size-fits-all solution to improving quality of life for this population,” Dr. Gorman said.
“Having opportunities to discuss fertility preservation options is really important.”— Jessica Gorman, PhD, MPH
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“Reproductive and sexual health, education, careers, work, relationships, peers, finances, insurance, as well as management of ongoing health issues are important to the quality of life of AYA cancer survivors. These [concerns] might change across the stage of cancer treatment, diagnosis, posttreatment, survivorship and might also have a different influence and importance across developmental transitions.”
Comments from cancer survivors indicate they don’t always feel understood about issues they are dealing with after cancer, she added, there are “hidden challenges.” Another patient remarked, “Survivorship has been my biggest nemesis.”
Transitions Are Tough
OVERALL QUALITY of life is poorer for AYA cancer survivors than for AYAs who don’t have cancer, Dr. Gorman noted. “We have started to identify some high-risks groups,” she added, that “would be ideal populations for interventions.”
“People have poor quality of life when they are going through a transition,” she said. For AYAs, being out of treatment and just getting back to work or school tend to be “tougher times.” 2 Other groups that tend to be at higher risk of having poorer quality of life overall are “those who lack health insurance, those who are younger, those who are Hispanic, those with less education, females, and those who have two or more cancers,” stated Dr. Gorman.
AYA cancer survivors have “unmet needs for information, supportive services, and even clinical care,” Dr. Gorman reported. These survivors are “one and a half times more likely to report anxiety or depression than AYAs without cancer.” They also report feeling they have less control over their lives and their life goals have been disrupted, factors that may contribute to poor quality of life, Dr. Gorman noted.
“DEPENDING ON what survey you look at, 50% to 85% of AYA survivors want to have children,” Dr. Gorman reported. “Having opportunities to discuss fertility preservation options is really important,” although for many survivors those options “are not always accessible and affordable.”
Data from a survey Dr. Gorman and colleagues conducted among 204 female cancer survivors between the ages of 18 and 35, found that 80% to 85% did want to have children. Only about 20% had a fertility consultation before their treatment, Dr. Gorman reported.3 “Only 40% said they had received enough information, and about an equal proportion (43%) said they really needed information but didn’t know how to get it.”
But the most important point, she added, is “64% felt too overwhelmed to take in information about fertility at the time of diagnosis. This is a conundrum, because we all know we want to give information and options at the time of diagnosis, but those going through that experience are really overwhelmed at that time, and it is really hard to absorb that information.”
Another possibility, she suggested, is to think about how to meet with them later on and to talk with them after their treatment. “In this survey, only 15% accessed fertility care after their treatment ended. This is a population of cancer survivors who want children but aren’t accessing care. This points out the opportunity for an intervention to reach this population that we are missing.” Patients should be made aware, she added, that they can discuss fertility concerns even after their treatment ends.
Scale to Measure Concerns
DR. GORMAN and colleagues developed and validated the 18-point Reproductive Concerns After Cancer (RCAC) scale to measure young adult female cancer survivors’ concerns about fertility and parenthood, “so they can be better addressed.” 4 The scale assesses worries about being able to have and take care of children; passing on genetic risks for cancer; and the stress, time, and effort of pregnancy.
“This scale has been translated into seven languages now, and we have also created a male version,” Dr. Gorman reported.
Using that scale with the survey of 18- to 35-year-old female survivors, we found 65% had moderate to high reproductive concerns, and 10% had heightened concerns, which were associated with higher risks of depression. “We know this persists well into survivorship. So, it is important to think about ways we can help intervene.”
Contraception and Sexual Relations
“I AM DOING some work now with couples, AYA female survivors and their partners, about how they communicate with each other and their health-care providers about fertility and parenthood issues, contraception, and sexual health,” Dr. Gorman said. “We know young survivors are sexually active and [may] not [be] using contraception that is in line with what their parenthood goals are; and they are not often receiving adequate counseling [about] contraception.” 5 Results from several recent studies, Dr. Gorman said, indicate “female survivors are less likely to use highly effective contraception and have a threefold greater risk of unintended pregnancy compared to the general population.”
About “half of AYAs experience a negative impact on sexual health from their cancers,” Dr. Gorman indicated. Those reporting such a negative impact are likely to be older than age 25, to have no children, to experience fatigue, and to be concerned about how cancer has affected their appearance. Concern about “cancer’s impact on body image and intimate relationships” is highly prevalent in the AYA survivor population and impacts quality of life. Failure to address issues of sexual relations and diminished libido, Dr. Gorman said, “is a missed opportunity for health-care providers to give survivors an opportunity to talk about it.”
Possible Communication Approaches
DR. GORMAN suggested some possible approaches to improve quality of life for AYAs. “One strategy is a patient-centered care approach, and central to that is patient-centered communication. This has been proposed as a strategy to help fill some of these information and supportive care gaps,” she said. “We know young survivors do want to have discussions about fertility, contraception, and sexual health. With patient-centered communication, it is not just about information exchange. It is also about shared decision-making, managing uncertainty and emotions, and bringing the family or partner into those conversations as well.” She noted a literature search found a lot of potential strategies that can be used to improve patient-centered communication, “although very little evidence” that such improvement will lead to improved quality of life among AYA cancer survivors.
Other proposed approaches include a Web-based program6 to alleviate sexual health distress and peer survivor events and activities, such as First Descents, an outdoor adventure program for AYAs with cancer.7 Dr. Gorman said she is also testing a mindfulness-based intervention, “with the goal of providing a safe, respectful environment for learning, psychological growth, and cultivation of present moment awareness and guiding survivors through a connection or reconnection with their sexual interest.”
Coming from a public health perspective, Dr. Gorman believes it is important to think about “moving beyond just the patient-provider perspective and thinking about how we can introduce interventions into the community that bring in family, partners, and parents (thinking about the peer survivor community as a potential level of intervention) and then health system intervention changes.” ■
DISCLOSURE: Dr. Gorman reported no conflicts of interest.
2. Husson O, Zebrack BJ, Block R, et al: Health-related quality of life in adolescent and young adult patients with cancer: A longitudinal study. J Clin Oncol 35:652-659, 2017.
3. Gorman JR, Su HI, Roberts SC, et al: Experiencing reproductive concerns as a female cancer survivor is associated with depression. Cancer 121:935-942, 2015.
4. Gorman JR, Su HI, Pierce JP, et al: A multidimensional scale to measure the reproductive concerns of young adult female cancer survivors. J Cancer Surviv 8:218-228, 2014.
5. Dominick SA, McLean MR, Whitcomb BW, et al: Contraceptive practices among female cancer survivors of reproductive age. Obstet Gynecol 126:498-507, 2015.
6. Wiklander M, Strandquist J, Obol CM, et al: Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress. Support Care Cancer 25:3675-3682, 2017.
7. Zebrack B, Kwak M, Sundstrom L: First Descents, an adventure program for young adults with cancer: Who benefits? Support Care Cancer 25:3665-3673, 2017.