Perceptions of risk of infertility among male survivors of childhood cancer: A report from the Childhood Cancer Survivor Study

Marchak, Jordan Gilleland; Seidel, Kristy; Mertens, Ann C.; Ritenour, Chad W.M.; Wasilewski‐Masker, Karen; Leisenring, Wendy; Sklar, Charles A.; Ford, Jennifer S.; Krull, Kevin R.; Stovall, Marilyn; Robison, Leslie L.; Armstrong, Gregory T.; Meacham, Lillian R.

doi:10.1002/cncr.31343

Cited by 16 publications

(13 citation statements)

References 24 publications

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“…This is, to our knowledge, the first study to systematically highlight the intersection of self-reported infertility risk perceptions and actual fertility status in a large cohort of childfree adult survivors of childhood cancer. Consistent with previous research, 19,36 most survivors perceived themselves at increased risk for infertility. Yet, although female survivors tend to be infertile at lower rates than male survivors, 7,55 both sexes had similar risk perceptions.…”

Section: Discussionsupporting

confidence: 88%

“…Other studies examined survivors' infertility risk perceptions in conjunction with gonadotoxic treatment exposure (as a proxy for increased infertility risk) and reported that risk perceptions did not differ by treatment exposure. 19,36 Although important, reliance on treatmentindicated risk in fertility counseling falls short, because different responses to therapy yield variability in survivors' fertility after treatment. Furthermore, previous studies did not assess whether survivors' fertility-related perceptions align with their actual gonadal functioning.…”

Section: Introductionmentioning

confidence: 99%

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Gonadal Functioning and Perceptions of Infertility Risk Among Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study

Lehmann

Chemaitilly

et al. 2019

JCO

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PURPOSE To describe perceptions of infertility risk among adult survivors of childhood cancer, to test the concordance of survivors’ risk perceptions and their adult fertility status, and to identify explanatory factors (sociodemographic factors, gonadotoxic treatments, reproductive history, sexual dysfunction) associated with these outcomes. PATIENTS AND METHODS Adult childhood cancer survivors (N = 1,067; without children or a history of pregnancies) completed questionnaires that asked about infertility risk perceptions and participated in physical evaluations, including biomarkers of gonadal functioning (eg, semen analysis, blood hormone levels, menses). Multivariable regression models tested associations between explanatory factors and risk perceptions as well as concordance of perceptions and fertility status. RESULTS Most childhood cancer survivors (61.9%) perceived themselves at increased risk for infertility, which was significantly associated with sociodemographic factors (older age, white ethnicity, being married/partnered, higher education), gonadotoxic treatments, fertility concerns, previous unsuccessful attempts to conceive, and sexual dysfunction (all P < .05). Laboratory-evaluated impaired gonadal function was found in 24.3% of female and 55.6% of male survivors, but concordance with survivors’ risk perceptions was low (Cohen’s κ < .19). Most survivors with discordant perceptions overestimated risk (ie, perceived being at risk, though fertility status seemed normal; 19.7% of male and 43.6% of female survivors), whereas a minority underestimated risk (ie, perceived no risk but were impaired/infertile; 16.3% of male and 5.3% of female survivors). Factors related to discordance included sociodemographics, gonadotoxic treatments, fertility concerns, and sexual dysfunction (all P < .05). CONCLUSION Although childfree survivors may correctly consider themselves at risk for infertility on the basis of their previous treatments, such risk perceptions were discordant from laboratory-evaluated fertility status among many survivors in adulthood. Thus, repeated fertility-related communication throughout survivorship is essential, because treatment-indicated risk does not equal fertility status after treatment. Offering fertility testing to those who were at risk and/or those with fertility-related concerns is recommended.

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Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

Gonadal Functioning and Perceptions of Infertility Risk Among Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study

Lehmann

Chemaitilly

et al. 2019

JCO

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“…tested whether they also affect parenthood attitudes given that many childhood cancer survivors are unaware of infertility risks and their own gonadal functioning. [37][38][39]…”

Section: Discussionmentioning

confidence: 99%

Attitudes and Perceptions of Parenthood Among Young Adult Survivors of Childhood Cancer

Himelhoch

Datillo

Tuinman

et al. 2022

Journal of Adolescent and Young Adult Oncology

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Increasing numbers of childhood cancer survivors enter adulthood and encounter decisions surrounding parenthood. However, limited research has systematically examined how childhood cancer may influence parenthood attitudes among survivors. Methods: Adult survivors of childhood cancer, who had or wanted to have children (N = 77; M age = 30.2 years, range: 22-43; 91% White), rated their perceived impact of cancer at enrollment and parenthood attitudes using the ''Attitudes to Parenthood After Cancer Scale'' 2 years later. First, internal consistencies for the parenthood measure were examined, and modified subscales were proposed. Second, hierarchical stepwise regressions analyzed the contribution of background factors and cancer's impact on parenthood attitudes. Results: Reevaluation of parenthood items yielded four subscales with improved internal consistency (a's > .78): improved parenting due to cancer, no children due to cancer, concerns about a (potential) child's health, and parenthood desire irrespective of own health concerns. Already having children (n = 38) was related to more favorable ratings on most subscales. Older age was associated with perceiving improved parenting due to cancer (r = .24) and shorter time since diagnosis was related to considering having no children due to cancer (r = -.23). Hierarchical stepwise regressions reconfirmed parenthood status as related to more favorable parenting attitudes. Cancer preoccupation and perceiving cancer as a most difficult life experience predicted more concerns toward parenthood (R 2 = .044-.216). Conclusions: Parenthood attitudes were more favorable among survivors with children, who were older, and/or further into survivorship. Survivors burdened by their cancer experience reported more concerns about parenthood. Childhood cancer may shape parenthood perceptions positively and negatively, warranting further research to inform interventions.

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“…These results highlight the importance of discussing fertility risk and available preservation options with patients newly diagnosed with NHL. While clinical practice guidelines have been developed to aid providers in identifying and counselling cancer survivors at risk for infertility (Kenney et al , ; Loren et al , ; Metzger et al , ), discordant perceptions and worry about risk have been described among both male and female childhood cancer survivors (Gilleland Marchak et al , , ), suggesting a need for ongoing patient education regarding fertility risks throughout the continuum of cancer and survivorship care.…”

Section: Fertilitymentioning

confidence: 99%

Long‐term survivors of childhood, adolescent and young adult non‐Hodgkin lymphoma

Ehrhardt¹,

Hochberg

Bjornard³

et al. 2019

Br J Haematol

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Progress in overall survival rates for childhood non-Hodgkin lymphoma (NHL) can be largely attributed to effective development and conduct of a number of international treatment studies. Knowledge gained from these studies has shifted the treatment paradigm from a "one-size fits all" strategy to a histologically dependent approach. More specifically, many now adhere to a risk-stratified approach, prescribing cumulative doses and intensities of chemotherapeutic exposures based upon the aggressiveness of disease. Moreover, recognition that high cure rates could be achieved without the use of radiation has eliminated the use of this modality in frontline settings for the majority of newly diagnosed children. These changes have contributed to the emergence of a heterogeneous group of NHL survivors. As the number of NHL survivors continues to increase, providers will encounter a wide spectrum of individuals whose risk for long-term complications are accordingly diverse. The following review summarizes the existing literature surrounding late effects, such as chronic health conditions, functional and neurocognitive performance outcomes, and health-related quality of life, that are unique to NHL survivors, as well as those extrapolated from the broader childhood cancer survivor population.Keywords: non-Hodgkin lymphoma, late effects of therapy, paediatric oncology.It is estimated that approximately 1050 new cases of non-Hodgkin lymphoma (NHL) are diagnosed annually in the United States among individuals under the age of 20 years, reflecting an annual incidence rate of 22Á1 per million population (Noone et al, 2018). In the paediatric/adolescent age range, NHL is the fourth most common malignancy, representing approximately 7% of new cancers. Populationbased data from the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) program document the progressive improvement in survival realized over the past four decades (Fig 1).The heterogeneity in NHL histology and corresponding treatment approaches (Hudson et al, 2012 andMinard-Colin et al, 2015) has rendered late effects studies challenging. Much of the progress in childhood NHL survivorship can be attributed to effective development and conduct of a number of international treatment studies (Minard-Colin et al, 2015). Knowledge gained from these studies has shifted the treatment paradigm over the past several decades from a "one-size fits all" strategy to a histologically 0 0 5 Fig 1. Overall survival rates for childhood non-Hodgkin lymphoma by 5-year intervals. From: Noone et al (2018).

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Perceptions of risk of infertility among male survivors of childhood cancer: A report from the Childhood Cancer Survivor Study

Cited by 16 publications

References 24 publications

Gonadal Functioning and Perceptions of Infertility Risk Among Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study

Gonadal Functioning and Perceptions of Infertility Risk Among Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study

Attitudes and Perceptions of Parenthood Among Young Adult Survivors of Childhood Cancer

Long‐term survivors of childhood, adolescent and young adult non‐Hodgkin lymphoma

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