Most AYAs in our study reported a number of reproductive concerns and fertility-related distress after treatment, which may affect other areas of psychosocial functioning. Females may be more at-risk for distress than males, particularly in situations of uncertainty and limited knowledge. Future work should explore how to best incorporate fertility-related informational and support services more fully into survivorship care. Implications for survivorship care are discussed.
Background Many young adult female cancer survivors (YAFCS) are at risk for premature menopause. This study characterized YAFCS’ post-treatment fertility information needs, reproductive concerns, and decisional conflict about future options for post-treatment fertility preservation (FP). Methods Participants completed a web-based, anonymous survey between February and March 2015. The survey included investigator-designed questions of perceived information needs, the Reproductive Concerns after Cancer Scale (RCACS), and the Decisional Conflict Scale (DCS). Analyses included Pearson’s correlations, t-tests, and multiple regression. Results Participants (N=346) averaged 29.9 years old (SD=4.1) and were 4.9 years post-treatment (SD=5.4; range, 0-27). Main analyses focused on a subgroup of YAFCS with uncertain fertility status who had not previously undergone/attempted FP and either wanted future children or were unsure (n=179). Across fertility information topics, 43-62% reported unmet information needs. The greatest reproductive concerns related to fertility potential and health of future offspring. The regression model controlled for a priori covariates including current age, age at treatment completion, income, relationship status, nulliparity, and prior fertility evaluation. Greater unmet information needs related to greater decisional conflict (β=0.43, p<.001); greater reproductive concerns were associated at the trend level (β=0.14, p=.08; F[8,118]=6.42, p<.001). Conclusions YAFCS with limited awareness or knowledge of their risk for premature menopause and FP options report higher levels of decisional conflict about future FP. Post-treatment survivorship care should include comprehensive reproductive health counseling, including post-treatment FP options and family-building alternatives.
Background: Adolescent and young adult (AYA) cancer survivors are under-represented in research. Social media is increasingly used for recruitment given its ability to reach large audiences. Differences in participant characteristics and potential biases due to recruitment source are not well understood. Purpose: This study aimed to: (a) compare recruitment strategies (hospital-based v. social media) in enrollment metrics, and (b) among enrolled participants, evaluate group differences in patient characteristics and patient reported outcomes (PROs). Methods: Preliminary data from a cancer and fertility study with female AYAs were evaluated. Hospital-based recruitment used electronic medical records (EMR) to identify eligible patients. Social media recruitment involved posting on partner organizations' social media outlets. PROs included validated measures related to the parent study. Descriptive statistics evaluated recruitment metrics. Independent samples t-tests and chi-square identified differences in participant characteristics and PROs based on recruitment. Results: Social media yielded a higher enrollment rate (37%; n ¼ 54/146) compared with hospital-based recruitment (7%; n ¼ 21/289) and required fewer study resources. Compared with hospital-based recruitment, participants from social media were more likely to be White (p ¼ 0.01), with a longer time since treatment (p ¼ 0.03); and reported higher levels of reproductive concern (p ¼ 0.004) and negative mood (p ¼ 0.02), and more negative illness perceptions (ps < 0.05). Conclusion: Recruitment via social media may be a more effective and efficient strategy compared with hospital-based methods. However, group differences were identified that could bias findings and limit generalizability. Advantages of social media should be considered with an understanding of how methodology may impact enrollment and results.
These preliminary findings suggest that unaddressed fertility information needs, concerns, and decision distress may affect general QOL among post-treatment YAFCS who hope to have children in the future. Future work should identify ways to optimally incorporate fertility counseling and support resources into survivorship care programs, including referrals to reproductive specialists as appropriate.
Purpose A cancer and fertility program was established at a large cancer center to support clinicians in discussing treatment-related fertility risks and fertility preservation (FP) options with patients and in referring patients to reproductive specialists. The program provides resources, clinician education, and fertility clinical nurse specialist consultation. This study evaluated the program's impact on patient satisfaction with information received. Patients and MethodsRetrospective cross-sectional surveys assessed satisfaction before (cohort 1 [C1]) and after (cohort 2 [C2]) program initiation. Questionnaires were investigator-designed, gender-specific, and anonymous. ResultsMost C1 (150 males, 271 females) and C2 (120 males, 320 females) respondents were 2 years postdiagnosis; the most frequently reported cancers were testicular, breast, and lymphoma. A significant difference in satisfaction with the amount of information received was seen between C1 and C2. For males, satisfaction with information on fertility risks was high in both cohorts but significantly greater in C2 for information on sperm banking (x 2 = 9.3, P = .01) and finding a sperm bank (x 2 = 13.3, P = .001). For females, satisfaction with information was significantly greater in C2 for information on fertility risks (x 2 = 62.1, P , .001), FP options (x 2 = 71.9, P , .001), help with decision making (x 2 = 80.2, P , .001), and finding a reproductive endocrinologist (x 2 = 60.5, P , .001). Among patients who received and read information materials, 96% of males and 99% of females found them helpful. Among C2 females, fertility clinical nurse specialist consultation was associated with significantly greater satisfaction with information on FP options (x 2 = 11.2, P = .004), help with decision making (x 2 = 10.4, P = .006), and finding a reproductive endocrinologist (x 2 = 22.6, P , .001), with 10% reporting lack of knowledge as a reason for not pursuing FP. ConclusionImprovements in patient satisfaction with information received demonstrate the potential for fertility programs in cancer care settings to improve the quality of clinician-patient discussions about fertility.
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