Congruence of Reproductive Goals and Fertility-Related Attitudes of Adolescent and Young Adult Males and Their Parents After Cancer Treatment

Abstract

Purpose:

Approximately half of all males experience fertility impairment after cancer treatment, which can diminish quality of life. Parents are often responsible for sharing health-related information, and parental recommendation strongly impacts fertility-related decisions; yet it remains unclear whether adolescents and young adults' (AYAs) and their parents' fertility-related goals/attitudes align. This study examined parent–AYAs congruence on fertility-related attitudes and (grand) parenthood goals during survivorship, and if parents were aware of their sons' parenthood goals and reproductive concerns.

Methods:

Males (15–25 years) and their parents were recruited within 1–8 years of completing cancer treatment. Based on the Health Belief Model, AYAs (N = 38), mothers (N = 33), and fathers (N = 24) reported on parenthood goals, perceived benefits/barriers of fertility testing/preservation, perceived susceptibility/severity of infertility, and fertility knowledge. Analyses included Pearson's correlations and paired-sample t-tests.

Results:

More than 80% of mothers, fathers, and AYAs desired future (grand) children. Mother–son dyads had differences in fertility knowledge (p = 0.037), and father–son dyads differed in parenthood goals (p = 0.024). AYAs perceived more fertility-related barriers than their mothers (p = 0.014) and fathers (p = 0.006). AYA survivors were less likely to report they could accept a life without a biological child compared with their mothers (p = 0.009) and fathers (p = 0.024).

Conclusions:

These findings suggest some similarities, yet important differences between male AYA survivors' and their parents' attitudes toward fertility and parenthood. As infertility is common in this population, and is associated with uncertainty and distress, these findings underscore the need for family-centered fertility-related interventions at the time of cancer diagnosis and throughout survivorship.

Introduction

Nearly 9000 males under the age of 20 are diagnosed with cancer in the United States each year.¹ Due to treatment advances, 5-year survival rates for children with cancer now exceed 80%.² Up to 95% of survivors experience treatment-related late effects, and approximately half of all males have fertility impairment.^3,4 The impact of infertility is far reaching as it can impede psychosexual development and diminish quality of life in survivorship.⁵ Thus, guidelines published by the American Society of Clinical Oncology and American Academy of Pediatrics emphasize the importance of timely counseling about fertility preservation (FP).^6,7 However, at many centers, less than one-third of pubertal males bank sperm.^8–11

Cost, urgency to start treatment, inconsistent counseling, young age/sexual inexperience, and deficiencies in provider knowledge have been established as important challenges to FP across ages.¹² Beyond these barriers, fertility-related decisions may be especially complex for adolescents and young adults (AYAs, 15–39 years¹³) and their families. Developmentally, adolescence and emerging adulthood (18–25 years) are unique periods that involve change as individuals explore life's opportunities, make decisions about romantic relationships and work, and form perceptions on worldviews.¹⁴ Emerging adults explore their freedom by making independent choices and exploring possibilities for their future.¹⁴ However, parents are often responsible for sharing health-related information and making decisions for their children; many emerging adults still live with their parents, and rely on them for emotional and financial support in the setting of a serious illness.

In a recent study, even when male AYAs were advised to bank sperm by the clinical team, only half pursued it.¹⁵ Notably, adolescents were almost four times more likely to bank sperm if their parents recommended it.¹⁶ However, one study showed that adolescent males recently diagnosed with cancer ranked fertility as a “top 3” life goal, whereas parents were more focused on their sons' health and other goals.¹⁷ Similarly, mothers of adolescent females recently diagnosed with cancer underestimated their daughter's reproductive goals.¹⁸ Thus, it is unclear how parents and patients jointly make fertility-related decisions.

Beyond parents' influence on fertility-related decisions at the time of cancer diagnosis, parents remain responsible for their sons' survivorship care after treatment. Both parents and AYA survivors report a desire to have children/grandchildren and regret missed opportunities for FP,¹⁹ yet parents report difficulty talking about this topic with their sons.²⁰ Fertility-related discussions during survivorship visits are uncommon, with recent studies showing less than half of male survivors had talked to health care providers about fertility, and/or had any assessment of gonadal function since treatment ended.^21,22 Years after treatment ends, male AYAs often remain uncertain of their fertility status and report distress about potential infertility.^8,20,22–24 Furthermore, misconceptions about fertility and the heritability of cancer are common in survivorship,^20,25 often resulting in anxiety and sometimes unplanned pregnancies among survivors who incorrectly assumed they were infertile.²⁵

Despite the important role of parents in pediatric and AYA care, there is a paucity of literature examining whether parents are aware of their sons' reproductive goals and concerns after cancer treatment. Given the low rates of fertility testing/preservation among AYA males^9,11,26,27 and the infrequent discussions about this topic in survivorship²², examining fertility-related attitudes and parenthood goals among both AYAs and their parents is important. The goals of this study were to (1) examine parent–AYAs congruence on fertility-related attitudes and (grand) parenthood goals, and (2) examine parents' awareness of their sons' parenthood goals and reproductive concerns.

Methods

Participants and recruitment

Data were collected as part of a study examining fertility-related attitudes and parenthood goals, and exploring potential opportunities for fertility testing/preservation during survivorship between October 2016 and June 2017. After Institutional Review Board approval, study staff screened the institution's cancer registry and clinic rosters at a large pediatric academic center to identify eligible families. Families were invited to participate if they had a child who was (1) male, (2) between 15–25 years old, and (3) within 1–8 years of completing cancer treatment. Participants were excluded if they (1) had a history of CNS malignancy or a pre-existing cognitive or psychiatric condition that would preclude completion of measures; (2) were in hospice care or otherwise terminally ill; and (3) were not proficient in English. In addition, because this pilot study was part of a larger study examining semen parameters after treatment, survivors were excluded if they had both testes surgically removed, or if they had received >20 Gray (Gy) of cranial irradiation (due to concern for central hypogonadism). Eligible families were mailed a letter inviting their participation and/or were approached by study staff during regularly scheduled clinic visits. Study staff obtained consent/assent from all participants. All participants were given a US $10 gift card after completing study measures.

Questionnaire design

Due to a lack of standardized measures examining fertility-related attitudes and parenthood goals among AYA male cancer survivors, the study team created a questionnaire based on the health belief model (HBM, focused on perceptions that predict health behaviors and utilization of health care services).^{17,19,23,25,28–31} AYA questionnaires comprised of multiple-choice questions and 5-point Likert items to assess sociodemographic information, pre-treatment FP completion, post-treatment fertility-related conversations, fertility-related knowledge, perceived benefits and barriers to fertility testing/preservation, perceived susceptibility and severity of infertility. Parent questionnaires contained items to assess their attitudes about these topics, as well as perceptions of their son's attitudes. Information about cancer diagnosis and treatment including cyclophosphamide equivalent dose (CED) was abstracted from each AYA's medical chart.

Questionnaires included six subscales, including parenthood goals (Cronbach's alpha for AYAs, mothers and fathers = 0.16–0.6), perceived benefits (α = 0.88–0.92), perceived barriers (α = 0.26–0.53), perceived susceptibility (α = 0.73 − 0.84), perceived severity (α = 0.70 − 0.82), and fertility knowledge (α = 0.75 − 0.8). The “parenthood goals” subscale included five items for survivors (i.e., I would like to have a child now) and seven parent items (My son would like to have a child now or in the future and I would like to have a grandchild now or in the future). The “perceived benefits” subscale included four AYAs and six parent items (Sperm banking will increase my (my son's) chances of having biological children), whereas “perceived barriers” included 10 AYAs and 9 parent items (I am worried I (my son) will pass cancer onto my child (grandchild)). The “perceived susceptibility” subscale included three items (I feel that I have increased risk of infertility or My son feels that he has an increased risk of infertility). The “perceived severity” subscale included six AYAs and seven parent items (I (my son) can accept a life without biological children). The “fertility knowledge” subscale was comprised of three items that were rated as “correct” or “incorrect” (Men who have been treated for cancer may have a hard time having biological children).

Statistical analyses

Data were analyzed using SPSS Statistics version 24.0 (IBM Corp, 2012). Descriptive statistics were used to summarize characteristics of the study sample and survey responses. Pearson's correlations and paired-sample t-tests were used to examine correlations and differences with regard to questionnaire responses within mother–son dyads and father–son dyads across HBM domains (α = 0.05; two tailed). Further, since there is limited research comparing parent–AYA reproductive goals and fertility-related attitudes, exploratory analyses were conducted to examine differences in responses to individual survey items. Simple linear regressions explored whether age at diagnosis, current age, education level of parents, total CED dose, and sperm banking before treatment were associated with discrepancies in subscale scores within dyads. Post hoc analysis revealed sufficient power (∼80%) to identify moderate correlations and small-medium effect sizes within mother–son dyads (n = 66, r = 0.30, d = 0.31) and father–son dyads (n = 48, r = 0.35, d = 0.36) as significant.^32,33

Results

Sample characteristics

Of the 65 families who met eligibility criteria, 55 agreed to participate, and at least one family member from 50 (77%) families completed the questionnaire. Of the 10 families who declined, one mother said her son was “too young to discuss this” (20 years old) and one mother said her son did not like discussing anything related to his treatment (16 years old). One mother said the father would not agree. No reason for decline was provided in the remaining seven families. In total, 110 participants (45 AYA males, 36 mothers, and 29 fathers) completed questionnaires. Of these participants, data were used from 33 mother–son dyads and 24 father–son dyads (38 unique AYA participants, some of whom were in both dyads). On average, AYAs were 14.27 years old (SD = 3.33) at diagnosis, 19.33 years old (SD = 2.56) at time of participation, and 3.74 years (SD = 1.94) post-treatment. Mothers were 47.24 years old (SD = 5.83), and fathers were 49.71 years old (SD = 5.43). Thirteen (34.2%) AYAs reported banking sperm before treatment; 56% of those who did not bank were ≥13 years of age at the time of diagnosis. Additional demographic information is presented in Table 1.

Table 1.

Demographic Characteristics of Sample (n = 95)

	AYA (n = 38)		Mothers (n = 33)		Fathers (n = 24)
Variable	n	% ^a	n	% ^a	N	% ^a
Marital status
Married	−	−	24	73	18	75
Single	−	−	5	15	1	4
In a relationship	−	−	4	12	2	8
Divorced	−	−	0	0	3	13
Race
White	34	89	31	94	23	96
Black or African American	0	0	0	0	0	0
American Indian or Alaskan Native	1	3	0	0	0	0
Asian	1	3	1	3	1	4
Native Hawaiian/Other Pacific Islander	0	0	0	0	0	0
More than one race	1	3	0	0	0	0
Other	1	3	1	3	0	0
Ethnicity
Non-Hispanic or Latino	36	95	30	91	23	96
Hispanic or Latino	1	3	2	6	0	0
Religion
Christian	23	61	21	64	16	67
Catholic	7	18	8	24	3	13
None	4	11	1	3	2	8
Agnostic	2	5	0	0	2	8
Hindu	1	3	1	3	1	4
Muslim	0	0	0	0	0	0
Other	1	3	1	3	0	0
Highest level of education completed
Some high school	12	32	1	3	1	4
High school diploma or GED	13	34	7	21	6	25
Some college, no degree	10	26	7	21	3	13
Associate degree	1	3	6	18	2	8
Bachelor's degree	0	0	6	18	7	29
Graduate or professional degree	1	3	4	12	5	21
Other	1	3	2	6	0	0
Total household income (US $)
Less than 25,000			1	3	1	4
25,000–49,999			8	24	5	21
50,000–74,999			6	18	5	21
75,000–99,999			5	15	4	17
100,000–149,999			6	18	4	17
≥150,000			6	18	4	17
Unsure			0	0	0	0
Cancer diagnosis
Solid tumor	19	50	−	−	−	−
Lymphoma	11	29	−	−	−	−
Leukemia	8	21	−	−	−	−
Cyclophosphamide cumulative dose (CED)
≥4000 mg/m²	23	61	−	−	−	−
<4000 mg/m²	15	39	−	−	−	−

Percentages were rounded to the hundredths, and therefore may not add up to 100.0%.

Subscale comparisons within mother–son and father–son dyads

Subscales included the following: parenthood goals, perceived benefits, perceived barriers, perceived susceptibility, perceived severity, and fertility knowledge. Results revealed moderate correlations for mothers and AYAs within the following domains: parenthood goals (r = 0.45, p = 0.008), perceived barriers (r = 0.37, p = 0.036), perceived susceptibility (r = 0.6, p ≤ 0.001), and perceived severity (r = 0.32, p = 0.073) (see Table 2). Fathers and AYAs had moderate correlations in the following domains: perceived benefits (r = 0.36, p = 0.088), perceived susceptibility (r = 0.67, p ≤ 0.001), and perceived severity (r = 0.46, p = 0.024) (Table 3).

Table 2.

Mother–Son Differences on Health Belief Model

HBM domain	r	p	Child M (SD)	Mother M (SD)	95% confidence interval	p	d
Parenthood goals	0.45	0.008	3.33 (0.59)	3.20 (0.66)	−0.11 to 0.36	0.29	0.18
Perceived benefits	0.19	0.28	3.48 (0.82)	3.43 (1.02)	−0.38 to 0.46	0.84	0.03
Perceived barriers	0.37	0.036	2.74 (0.52)	2.48 (0.49)	0.06–0.46	0.014	0.46
Perceived susceptibility	0.60	<0.001	3.16 (0.85)	3.19 (0.85)	−0.30 to 0.24	0.82	−0.04
Perceived severity	0.32	0.073	2.82 (0.78)	2.69 (0.74)	−0.19 to 0.44	0.42	0.15
Fertility knowledge	0.13	0.48	1.61 (1.20)	2.18 (1.10)	−1.12 to −0.04	0.037	−0.38

Means (M), standard deviations (SD), correlations (r), standardized mean differences (d), and statistical inference for mean differences on health belief model (HBM) domains for mother and son (N = 33).

Table 3.

Father–Son Differences on Health Belief Model

HBM domain	r	p	Child M (SD)	Father M (SD)	95% confidence interval	p	d
Parenthood goals	0.24	0.26	3.16 (0.55)	3.49 (0.53)	−0.61 to −0.05	0.024	−0.50
Perceived benefits	0.36	0.088	3.26 (0.78)	3.48 (0.84)	−0.61 to 0.17	0.26	−0.24
Perceived barriers	0.29	0.17	2.85 (0.49)	2.50 (0.45)	0.11 to 0.59	0.006	0.63
Perceived susceptibility	0.67	<0.001	2.94 (0.81)	3.18 (0.75)	−0.50 to 0.03	0.081	−0.38
Perceived severity	0.46	0.024	2.78 (0.74)	2.59 (0.60)	−0.11 to 0.49	0.20	0.27
Fertility knowledge	0.09	0.70	1.83 (1.20)	1.92 (1.14)	−0.75 to 0.59	0.80	−0.05

Means (M), standard deviations (SD), correlations (r), standardized mean differences (d), and statistical inference for mean differences on HBM domains for father and son (N = 24).

Within mother–son dyads, mothers reported significantly more fertility knowledge than AYAs (p = 0.037). Significant differences were seen within father–son dyads with regard to parenthood goals (p = 0.024). Within both mother–son and father–son dyads, AYAs perceived more fertility-related barriers than their parents (mother–son p = 0.014, father–son p = 0.006). Analysis revealed medium effect sizes for perceived barriers (d = 0.46) and fertility knowledge (d = −0.38) among mother–son dyads, and for parenthood goals (d = −0.50) and perceived barriers (d = 0.63) among father–son dyads (Tables 2 and 3). Demographic characteristics (current age, age at diagnosis, and parents' education level) and medical factors (history of FP completion, CED) were not associated with difference scores within dyads (r = −0.001 to 0.05).

Individual item differences among mother–son and father–son dyads

Most parents reported wanting a grandchild “now or in the future” (85% mothers, n = 28; 88% fathers, n = 22). Similarly, most AYAs reported wanting a child in the future (84%, n = 32), although only 13% (n = 5) reported wanting a child now. AYAs were less likely to report they could accept a life without a biological child when compared with their parents (mother–son p = 0.009; father–son, p = 0.024). Specifically, 82% (n = 27) of mothers reported that they would be “just as happy to have an adopted grandchild as a biological grandchild,” whereas only 32% (n = 12) of AYAs reported that they would be as happy to have an adopted child (p < 0.001). AYAs were also more likely to report a future without a child would make them sad when compared with mothers' perceptions of how they would feel without a grandchild (51% vs. 15%, p < 0.001).

With regard to specific FP barriers, AYAs were more likely to report sperm banking “goes against nature” than their parents (mother–son p = 0.009, father–son p = 0.020). AYAs were also more likely to report worry about passing cancer onto future children than their parents (mother–son p = 0.012; father–son, p = 0.007). Compared with their mothers, AYAs were more likely to report that sperm banking is ethically wrong (p = 0.044), and that talking about sperm banking with a health care provider is embarrassing (p = 0.028). AYAs were also more likely to report embarrassment when talking about sperm banking compared with their fathers (p = 0.005). The remaining items were not significantly different.

Discussion

This study shows many similarities, yet important differences between male AYA survivors' and their parents' attitudes toward future fertility and parenthood goals. Correlations were medium–large on most subscales, demonstrating that AYAs and their parents had similar attitudes with regard to many aspects of fertility and parenthood. As in previous studies, most survivors and parents reported a wish for future children and grandchildren (respectively).^8,19,22–24 However, we also found notable differences on several items, which may influence decisions about biological parenthood and fertility testing/preservation, as well as psychosocial outcomes related to fertility. For instance, while most survivors stated that a future without a child would make them sad, mothers were less likely to report distress about potentially not having a grandchild. This is consistent with previous findings, suggesting that parents of children with cancer are more focused on their child's health than future fertility,^17,20 and may underestimate their adolescents' reproductive goals.¹⁸

Of note, the majority of mothers and fathers in our study stated that they would be just as happy having an adopted grandchild, whereas less than one-third of the survivors reported being equally happy with adopting compared with having a biological child. Again, this is consistent with the previous literature, showing that many survivors would prefer to have a biological child and do not view adoption as an equivalent option.²³ It is important to note that there are several barriers to adoption in the United States, including high cost. Further, recent research shows that cancer survivors who are interested in adoption may face additional barriers in the process.³⁴ These are important considerations, as acceptance of and access to alternative methods of parenthood may impact FP decisions, and the degree of distress experienced in fertility is impaired. Parents should be aware of their sons' reproductive goals and the logistics of adoption to help them make the best possible choices about fertility testing/preservation, and to guide conversations about different options for parenthood and family planning in survivorship.

Sperm banking was perceived as beneficial by survivors, mothers, and fathers, and all three groups agreed about the potential risk (susceptibility and severity) of infertility due to cancer treatment. This is interesting since two-thirds did not complete FP before treatment—some were likely too young/sexually immature and other families may have been uninformed about their risk or declined for unknown reasons. Notably, the survivors in our study were significantly more likely to report fertility-related barriers compared with both mothers and fathers. Compared with parents, survivors were more embarrassed to have conversations about sperm banking (with their parents and clinicians), which is consistent with prior literature.³⁵ Further, as previous studies have shown,^18,23 many survivors were considerably more worried they would pass their cancer onto future children than their parents. Families should be given accurate information regarding their specific diagnosis and the likelihood of hereditability, as most cancers occurring in childhood and adolescence are not genetic.^36–38 Survivors in our study also had significantly less fertility-related knowledge than their mothers. If parents/clinicians are aware that survivors have gaps in knowledge and/or reproductive worries, they may be more capable of guiding AYAs through fertility-related decisions and addressing concerns/reproductive goals before treatment and during survivorship.³⁵ Further, addressing inaccurate perceptions about fertility may help prevent unintended pregnancies.^22,23,25

These findings underscore the importance of more effective fertility-related communication between AYAs and their parents. Throughout adolescence, sexual knowledge and behaviors continuously evolve, and communication between parents and AYAs about these topics should change accordingly.³⁹ Previous research has shown that parents are often unsure about how to talk to their children about sex and fertility, with worries that their children are too young.^20,40 Interventions to improve communication between parents and children about sex have helped parents feel more comfortable and able to have these conversations, improving the quality of conversations overall.³⁹ It is possible that interventions to help parents and children communicate about fertility during survivorship may be equally beneficial, particularly since many patients may be too young to consider/complete FP at the time of diagnosis.

Our findings should be considered within the context of several limitations. This pilot study was conducted among a small sample of male AYA survivors of pediatric cancer at a single institution, limiting generalizability. Although some of the subscale differences were not statistically significant in this study, effect sizes suggest that differences may be meaningful and should be explored in future research. Due to a lack of standardized measures that would be appropriate for our age group, this study used original surveys that will need to be validated in future research. In addition, the surveys did not include open-ended questions, limiting the opportunity for the collection of qualitative data, which may have yielded more in-depth responses. We were unable to examine the association between congruence and clinical/psychosocial outcomes such as fertility testing, preservation, and distress, but this would be an important next step. Parent–AYAs differences should be examined among a larger sample and across multiple institutions/regions to account for social and cultural differences. In addition, from a developmental perspective, our age range was wide, suggesting that some survivors may have been more easily engaged in communication regarding fertility upon their initial diagnosis; future research should explore developmental differences with regard to influence of parents and perhaps romantic partners on fertility-related attitudes. Finally, since this was part of a larger study where semen parameters were examined, we excluded survivors of CNS malignancies and those who received >20 Gy cranial radiation; future studies should consider including this population as they may face additional struggles with infertility and romantic relationships in survivorship.⁴¹

As FP utilization rates remain variable among AYAs,^8,10 and infertility is common in this population,^3,4 more research is needed to explore how families discuss and make decisions related to fertility and parenthood both before and after treatment. Specifically, future studies should examine AYAs' and parents' fertility-related goals and attitudes at the time of a new cancer diagnosis when FP decisions are made. Congruence may be even lower at this time since many parents and AYAs may not ever have had conversations about fertility or future parenthood goals. As AYAs are going through a crucial developmental period during a tumultuous time of being diagnosed with cancer, it is important for clinicians to facilitate multiple conversations with AYAs and their parents about fertility, and mitigate potential barriers to FP to prevent future regret. Longitudinal studies following families from the time of FP decision making into survivorship (when reproduction is a more pressing concern) would allow for an examination of how communication between parents and sons evolves as the AYAs develop. As recent studies have indicated,¹⁶ our study suggests that novel family-centered interventions are needed to improve family communication and address barriers/misconceptions before and after treatment, to optimize FP rates and mitigate distress.

Footnotes

Author Disclosure Statement

The authors have no conflicts of interest to disclose.

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