Perception of infertility risk mostly inaccurate among young female cancer survivors
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Key takeaways:
- Most young female cancer survivors reported perceived risk for infertility.
- Women with amenorrhea and irregular cycles also reported higher odds for perceived increased fertility risk.
Female adolescent and young adult cancer survivors reported higher rates of perceived infertility risk and frequently overestimated or underestimated their risk, according to study results published in JAMA Network Open.
The findings indicate that infertility risk counseling throughout the cancer survivorship continuum could decrease misalignment between perception and actual fertility risk, decrease fertility-associated psychological distress and inform family planning decisions, researchers concluded.
Rationale and methodology
“We know that adolescent and young adult cancer survivors worry about their future fertility, but it is not known what factors influence how they perceive their fertility and whether that perception is accurate,” Hena N. Din, PhD, researcher at University of California San Diego's Herbert Wertheim School of Public Health and Human Longevity Science, told Healio.
Din and colleagues sought to assess estimated treatment gonadotoxicity and post-treatment menstrual patterns and higher infertility risk perception among 785 female young adult cancer survivors (mean age at diagnosis, 25.9 years; mean age at study enrollment, 33.2 years; 74.5% white) recruited from two state cancer registries, social media and clinician referrals.
Study participants self-reported their menstrual pattern and researchers determined estimated treatment gonadotoxicity through a medical record review. Researchers categorized survivor-reported infertility risk perception as increased risk or no increased risk compared with female individuals their age.
They additionally used multivariable logistic regression to identify factors associated with perceived infertility and underestimation or overestimation of infertility risk.
Findings
Results showed that 61.5% of participants reported a perceived risk for infertility.
In addition, those previously exposed to moderate- or high-gonadotoxicity treatments reported higher odds for perceived increased infertility risk (adjusted OR = 2.73; 95% CI, 1.87-3.97) compared with those exposed to low-gonadotoxicity treatments (adjusted OR = 15.39; 95% CI, 5.52-42.96).
Researchers additionally observed higher odds for increased perceived fertility risk among those with amenorrhea (adjusted OR = 3.98; 95% CI, 2.13-7.41) and irregular cycles (adjusted OR = 1.69; 95% CI, 1.19-2.4).
“Perceived infertility risk had minimal agreement with objective risk (kappa = 0.19),” the investigators wrote.
Results also showed an association between multiparity (adjusted OR = 4.17; 95% CI, 2.61-6.64) and increased odds for underestimation of fertility risk.
Conversely, researchers observed an association between older age (adjusted OR = 0.94; 95% CI, 0.89-0.98]), endocrine comorbidity (adjusted OR = 0.35; 95% CI, 0.18-0.69) and prior infertility (adjusted OR = 0.16; 95% CI, 0.07-0.38) with lower odds for underestimation of fertility risk.
They also observed an association with lower odds for overestimation and multiparity (adjusted OR = 0.48; 95% CI, 0.27-0.86), breast cancer (adjusted OR = 0.38; 95% CI, 0.2-0.73) and skin cancer (adjusted OR = 0.24; 95% CI, 0.11-0.51).
“Receiving more gonadotoxic treatments and abnormal menstrual patterns are both related to cancer survivors perceiving lower fertility, but frequently their fertility perceptions were misaligned with their objective infertility risk based on their cancer treatments and ovarian reserve measures,” Din said.
Researchers acknowledged study limitations, including the lack of standardized risk stratification, and the possibility that different data or consensus statements used by providers could change categorization of risk. In addition, cancer survivors who chose not to participate in the study may have had fewer resources or less health literacy; therefore, researchers may have underestimated the proportion of those with misaligned risk perception.
Implications
The findings indicate that fertility counseling is needed throughout the cancer care continuum, not just at diagnosis, Din told Healio.
“This way, adolescent and young adult cancer survivors can improve understanding of their individualized infertility risk, make fertility and family building plans accordingly, and decrease fertility-related distress,” she said. “Further research is needed on cancer treatment-related reproductive risks among adolescent and young adult cancer survivors, particularly novel therapies, and disseminating those findings to cancer survivors, their families, and their oncology and fertility teams to improve fertility care and — ultimately — fertility outcomes.”
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