Parent recommendation to bank sperm among at-risk adolescent and young adult males with cancer.

BACKGROUND: Adolescent and young adult (AYA) males newly diagnosed with cancer are often faced with making quick decisions about whether to cryopreserve ("bank") sperm prior to treatment initiation. Given that parental influence is crucial among young patients, the present study examines the prevalence of and factors associated with parent recommendation to bank sperm. PROCEDURE: Parents of 13- to 21-year-old males newly diagnosed with cancer and at risk for infertility secondary to impending gonadotoxic treatment completed questionnaires typically within one week of treatment initiation. Medical and sociodemographic data, communication factors, and psychological factors were considered in a logistic regression model of parent report of parental recommendation to bank sperm (yes/no). RESULTS: Surveys from 138 parents (70.3% female) of 117 AYA males (mean age = 16.1 years, SD = 2.0) were analyzed. Over half of parents recommended banking to their sons (N = 82; 59.4%). Parents who received a provider recommendation to bank sperm (odds ratio [OR] = 18.44, 95% confidence interval [CI], 4.20-81.01, P < 0.001) or who believed in the benefits of banking (OR = 1.22, 95% CI, 1.02-1.47, P = 0.03) were significantly more likely to recommend sperm banking. CONCLUSIONS: Given parents' role in influencing sperm banking outcomes, provider recommendation and promotion of banking benefits may influence parents and empower initiation of these sensitive discussions with their sons. Utilization of this approach should yield beneficial outcomes regardless of the banking decision.

Perceptions of participating in family-centered fertility research among adolescent and young adult males newly diagnosed with cancer: A qualitative study.

BACKGROUND: Over half of male childhood cancer survivors experience infertility after treatment, which is known to cause distress and impact future quality of life. Sperm banking rates remain low, and little is known about how adolescent and young adult (AYA) males and their families make fertility preservation (FP) decisions. This study examined AYA and parent perceptions of participating in a research study focused on testing a new FP decision tool at the time of cancer diagnosis. METHODS: Forty-four participants (19 mothers, 11 fathers, 14 male AYAs 12-25 years old) from 20 families completed brief assessments at diagnosis and approximately one month later, including a qualitative interview exploring the impact of study participation. Verbatim transcripts were coded through thematic content analysis using the constant comparison method. RESULTS: Two major themes emerged: (1) a positive effect of participating in the study and (2) a neutral effect (no positive/negative effect of participation). Subthemes that emerged for participants who noted a positive effect included (a) participation prompted deeper thinking, (b) participation influenced family conversations, and (c) participation resulted in altruism/helping others. No participant reported a negative effect. CONCLUSIONS: This study demonstrates that participation in family-centered research focused on FP among AYA males, before treatment begins, is perceived as beneficial or neutral at the time of a new cancer diagnosis. These findings provide support for future family-centered FP interventions for this population.

Soldiers' Preferences Regarding Sperm Preservation, Posthumous Reproduction, and Attributes of a Potential "Posthumous Mother".

We present study results regarding soldiers' willingness to conduct posthumous reproduction. Two hundred twelve Israeli soldiers filled in a questionnaire designed to examine their willingness to cryopreserve sperm and evaluate in which familial circumstances they would consent to posthumous reproduction. They ranked the desirability of 46 attributes of a potential mother and a life partner. Findings indicate a relatively high predisposition in favor of posthumous-assisted reproduction; the wishes of soldiers' parents had much more influence on soldiers' willingness to pursue this technology than those of a partner. Soldiers preferred "feminine" jobs for a potential mother that would allow her to dedicate herself to child-rearing. The desired traits of such a mother were rated similarly to partner preferences; however, significant differences were found in attributes that are most related to the potential mother's devotion to maternity. Interpretations of these findings are contextualized in relation to ethical and bereavement considerations.

A fertility needs assessment survey of male cancer patients.

OBJECTIVE: To describe fertility-related informational needs and practices, and to examine if demographic characteristics are related to these needs and practices. METHODS: A needs assessment survey was conducted at three Canadian cancer centres. RESULTS: 192 male cancer patients (Mage = 33.6) completed the survey. Most patients (70%) recalled having had a discussion with a health care provider regarding their fertility and 44% banked their sperm. Patients reported not getting all the information that they wanted, eg, the risk that a future child may have the same type of cancer (78%), and what was covered by insurance plans (71%). Barriers to sperm preservation were urgency to begin cancer treatment (49%), not planning to have a child in the future (47%) and worries that cancer could be passed on to future children (38%). Participants' age and being the parent of a child were significantly associated with having had a discussion about fertility. Participants' age, province, being the parent of a child and the desire for future children were significantly associated with fertility preservation. CONCLUSIONS: Discussions with health care providers were more frequent, and fertility preservation rates were higher than in past studies, but still not all patients' questions were answered. Misconceptions about passing on cancer to one's child, and that sperm preservation will delay treatment, should be dispelled. Health care providers can ask patients if they have any desire to have children in the future as a way to initiate a discussion of fertility preservation. Key information gaps and psychosocial resource needs are suggested to fully meet male cancer patients' fertility-related concerns.

Patient factors associated with sperm cryopreservation among at-risk adolescents newly diagnosed with cancer.

BACKGROUND: Although survivors of adolescent-onset cancers are at risk of infertility, the majority desire children. Fertility preservation options are available for adolescents, but sperm banking remains underused. To the authors' knowledge, patient factors that influence decisions to bank sperm are poorly understood. METHODS: A cross-sectional study of 146 adolescent males who were newly diagnosed with cancer and who completed surveys within 1 week of treatment initiation was performed. Participants, 65% of whom were white, were aged 13 to 21 years (mean, 16.49 years; standard deviation, 2.02 years) and were at risk of infertility secondary to impending gonadotoxic treatment. Participating institutions included 8 leading pediatric oncology centers across the United States and Canada. RESULTS: Of the patients approached, approximately 80.6% participated. Parent recommendation to bank (odds ratio [OR], 4.88; 95% confidence interval [95% CI], 1.15-20.71 [P = .03]), higher Tanner stage (OR, 4.25; 95% CI, 1.60-11.27 [P < .01]), greater perceived benefits (OR, 1.41; 95% CI, 1.12-1.77 [P < .01]), and lower social barriers to banking (OR, 0.88; 95% CI, 0.81-0.96 [P < .01]) were found to be associated with adolescent collection attempts, whereas meeting with a fertility specialist (OR, 3.44; 95% CI, 1.00-11.83 [P = .05]), parent (OR, 3.02; 95% CI, 1.12-8.10 [P = .03]) or provider (OR, 2.67; 95% CI, 1.05-6.77 [P = .04]) recommendation to bank, and greater adolescent self-efficacy to bank (OR, 1.16; 95% CI, 1.01-1.33 [P = .03]) were found to be associated with successful sperm banking. CONCLUSIONS: Adolescents' perceived benefits of sperm banking, higher Tanner stage, and parent recommendation were associated with collection attempts, whereas perceived social barriers decreased this likelihood. Successful banking was associated with greater adolescent self-efficacy, parent and provider recommendation to bank, and consultation with a fertility specialist. Providers should consult with both adolescents and parents regarding fertility preservation, and interventions should be tailored to address barriers to sperm banking while promoting its benefits.

Fertility Issues in Adolescent and Young Adult Cancer Survivors.

PURPOSE: Many adolescent and young adult (AYA) cancer survivors place great importance on fertility. This study explored AYAs' discussions of fertility in the context of discussing their survivorship experiences. METHODS: Secondary analyses of a qualitative study of young adult survivors of adolescent cancers ("AYA survivors") was performed using semistructured individual interviews and focus groups. Analyses were conducted using grounded theory using thematic content analysis with an inductive data-driven approach. RESULTS: Participants (n = 43) were 16-24 years old, diagnosed with cancer between ages 14 and 18 years, and were at least 6 months post-treatment. Before treatment, 5 males banked sperm and no females preserved fertility. More males (50%) than females (39%) reported uncertainty about their fertility. Three major categories emerged from the data: fertility concerns, emotions raised when discussing fertility, and strategies used to manage fertility concerns. Fertility concerns focused on dating/partner reactions, health risks, and what potential infertility would mean for their life narrative. Emotions included distress, feeling overwhelmed and hopeful/wishful thinking. Females were more likely to feel distressed and overwhelmed than males. Strategies to manage concerns included acceptance/"making do," desire to postpone concerns, and reliance on assisted reproductive technology. CONCLUSIONS: 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.

Women more vulnerable than men when facing risk for treatment-induced infertility: a qualitative study of young adults newly diagnosed with cancer.

BACKGROUND: Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study investigates newly diagnosed cancer patients' experiences of fertility-related communication and how they reason about the risk of future infertility. MATERIAL AND METHODS: Informants were recruited at three cancer wards at a university hospital. Eleven women and 10 men newly diagnosed with cancer participated in individual semi-structured interviews focusing on three domains: experiences of fertility-related communication, decision-making concerning fertility preservation, and thoughts and feelings about the risk of possible infertility. Data was analyzed through qualitative content analysis. RESULTS: The analysis resulted in three sub-themes, 'Getting to know', 'Reacting to the risk' and 'Handling uncertainty', and one main theme 'Women more vulnerable when facing risk for infertility', indicating that women reported more negative experiences related to patient-provider communication regarding fertility-related aspects of cancer treatment, as well as negative emotional reactions to the risk of infertility and challenges related to handling uncertainty regarding future fertility. The informants described distress when receiving treatment with possible impact on fertility and used different strategies to handle the risk for infertility, such as relying on fertility preservation or thinking of alternative ways to achieve parenthood. The negative experiences reported by the female informants may be related to the fact that none of the women, but almost all men, had received information about and used fertility preservation. CONCLUSIONS: Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatment-induced infertility. Lack of shared decision-making concerning future fertility may cause distress and it is therefore necessary to improve the fertility-related communication targeted to female cancer patients.

How do men in the United Kingdom decide to dispose of banked sperm following cancer treatment?

Current policy in the UK recommends that men bank sperm prior to cancer treatment, but very few return to use it for reproductive purposes or agree to elective disposal even when their fertility recovers and their families are complete. We assessed the demographic, medical and psychological variables that influence the decision to dispose by contacting men (n = 499) who banked sperm more than five years previously, and asked them to complete questionnaires about their views on sperm banking, fertility and disposal. From 193 responses (38.7% response rate), 19 men (9.8%) requested disposal within four months of completing the questionnaire. Compared with men who wanted their sperm to remain in storage, they were significantly more confident that their fertility had recovered (OR = 1.78, 95% CI = 1.05-3.03, p = 0.034), saw fertility monitoring (semen analysis) as less important (OR = 0.61, 95% CI = 0.39-0.94, p = 0.026), held more positive attitudes to disposal (OR = 5.71, 95% CI = 2.89-11.27, p < 0.001), were more likely to have experienced adverse treatment side-effects (OR = 4.37, CI = 1.61-11.85, p = 0.004) and had less desire for children in the future (OR = 0.41, 95% CI = 0.26-0.64, p < 0.001). Information about men's reasons to dispose of banked sperm may be helpful in devising new strategies to encourage men to engage with sperm banking clinics and make timely decisions about the fate of their samples.

Why don't some men with banked sperm respond to letters about their stored samples?

Abstract Long-term storage of banked sperm, especially when it is not needed, for reproductive purposes, is costly and poses practical problems for sperm banks. For sperm banks to function efficiently, men must understand the implications of unnecessary storage, and make timely decisions about disposal of their own samples. Men who bank sperm prior to cancer treatment are routinely offered follow-up consultations to test their fertility, update consent and, where necessary, expedite referral for Assisted Conception. Yet sperm banks report that men do not respond to letters, suggesting samples are stored needlessly. We conducted semi-structured interviews with six men with a history of not responding to letters, to document reasons for non-response. Interviews were transcribed and analysed using Interpretive Phenomenological Analysis. Men's reasons for not responding are a complex interplay between past, present and future perspectives. In terms of their past, information is important on diagnosis, because men must understand that fertility can change after treatment. Present and future concerns focus on fears of being told fertility has not recovered and being pressured to dispose of banked sperm. The challenge is to devise invitation letters that address men's concerns while offering them tangible benefits and peace of mind.

Testicular tissue cryopreservation in prepubertal male children: an analysis of parental decision-making.

BACKGROUND: Infertility is an unfortunate treatment-related consequence for some pediatric malignancies as well as some non-malignant conditions treated with stem cell transplant. Unlike pubertal males, prepubertal males cannot produce semen for cryopreservation. This manuscript reports on the acceptability and safety of a multi-institutional protocol for offering testicular tissue cryopreservation to families of prepubertal male children at highest risk for infertility. Data on decision influences, decision-making control, and emotional state when considering this option are described. PROCEDURE: Prepubertal males facing gonadotoxic therapy were offered testicular cryopreservation. Post-biopsy, patients were followed for acute side effects. In addition, parents and patients were asked to complete questionnaires, whether or not they chose to cryopreserve tissue. RESULTS: Seventy-four prepubertal male children were approached. Fifty-seven families (77%) consented to the testicular biopsy; 48 of 57 underwent the procedure. There was one post-operative side effect. Parents who agreed to testicular cryopreservation and those that did not felt in control of this decision. Parents who consented to the biopsy and refusers were not deterred by the experimental nature of the protocol. An important decision-making influence was the risk of the biopsy. CONCLUSION: Biopsy and cryopreservation of testicular tissue from prepubertal male children was performed successfully and safely at three institutions. Parents faced with this option at diagnosis can make an informed decision and weigh carefully the risks and benefits. Although asked to make a decision soon after they were given a difficult diagnosis, parents uniformly felt in control of this decision.

Fertility preservation in the male with cancer.

This article reviews the current concepts, recommendations, and principles of fertility preservation in men with cancer. Obstacles to sperm banking are addressed, as well as future directions for fertility-preserving technologies. All cancer therapies--chemotherapy, radiation, and surgery--are potential threats to a man's reproductive potential. Additionally, cancer itself can impair spermatogenesis. Thus, sperm cryopreservation prior to initiating life-saving cancer treatment offers men and their families the best chances to father biologically-related children and should be offered to all men with cancer before treatment. Better patient and provider education, as well as deliberate, coordinated strategies at comprehensive cancer care centers, are necessary to make fertility preservation for male cancer patients a priority during pre-treatment planning.

Sperm banking is of key importance in patients with prostate cancer.

OBJECTIVE: To assess the need for sperm banking among patients with prostate cancer (PCa) who are candidates for radical prostatectomy (RP). DESIGN: Cross-sectional study. SETTING: Urologic department. PATIENT(S): Cohort of 510 Caucasian-European candidates for RP. INTERVENTION(S): A 10-item self-administered questionnaire to assess opinions on sperm banking before RP, to which descriptive statistics and logistic regression models were applied. MAIN OUTCOME MEASURE(S): PCa patients' wishes for preoperative sperm banking. RESULT(S): Data collection was completed for 495 patients (97.1%). Ninety-nine (20%) expressed a wish for preoperative sperm banking. Men who wanted to bank sperm were younger (mean 62.2 vs. 65.1 years), were more frequently childless (21.2% vs. 8.8%), and more frequently had a more intense desire for fatherhood (64.7% vs. 9.3%) than the patients not interested in banking sperm. Willingness to bank sperm was not affected by the patient's educational or relationship status. Moreover, the interest for sperm banking was maintained regardless of cost issues. Overall, 84% of the patients considered it necessary to have a dedicated service of preoperative sperm cryopreservation. CONCLUSION(S): One out of five PCa patients would bank sperm before RP. Most patients considered it necessary to establish a dedicated service for preoperative sperm cryopreservation, regardless of their own motivation to bank sperm.

Monitoring fertility (semen analysis) by cancer survivors who banked sperm prior to cancer treatment.

STUDY QUESTION: What medical and psychological variables predict why men with banked sperm do not return for semen analysis after their cancer treatment has ended? SUMMARY ANSWER: Men who decline the offer of semen analysis are less likely to have reported adverse side effects during cancer treatment, and have a more negative experience of banking sperm and a more negative attitude towards disposal of their stored semen than those who attend. WHAT IS KNOWN ALREADY: Previous authors have noted that male cancer survivors seem reluctant to have their fertility tested after their treatment has ended. Moreover, the utilization rates of banked sperm are very low (<10%) and the majority of samples are kept for many years without being used. STUDY DESIGN, SIZE AND DURATION: A cross-sectional study of 499 cancer survivors who were sent a questionnaire about their views on sperm banking, fertility and post-treatment semen analysis between April 2008 and December 2010. PARTICIPANTS AND SETTING: Men (aged 18-55 years) who had banked sperm in Sheffield and Nottingham (UK) prior to gonadotoxic treatment for cancer more than 5 years previously. MAIN RESULTS AND THE ROLE OF CHANCE: Completed questionnaires were received from 193 men (38.7% response rate) whose samples had been banked for 9.18 ± 3.70 years (range = 4.94-26.21) and whose current age was 35.08 ± 7.08 years (range = 21.58-54.34; mean ± SD). One-third (35.8%) had never attended for semen analysis. In multivariate analysis, the odds of not attending for semen analysis were significantly greater among men who did not experience adverse treatment side effects [odds ratio (OR) = 5.72, 95% confidence interval (CI) = 2.10-15.56], who reported a more negative experience of banking sperm (OR = 1.82, 95% CI = 1.17-2.82) and a more negative attitude to disposal of their stored semen (OR = 1.56, 95% CI = 1.01-2.42). LIMITATIONS AND REASONS FOR CAUTION: Only 38.7% of those eligible agreed to take part. We do not know the characteristics of men who declined to take part, if they agreed to attend semen analysis without completing the questionnaire or whether they had chosen to have semen analysis performed elsewhere (e.g. private sector). Some of the measures used (e.g. experience of banking sperm) relied on men's recall of events many years previously. WIDER IMPLICATIONS OF THE FINDINGS: New strategies are required to encourage these men to engage with fertility monitoring programmes if sperm banks are to be used cost-effectively and men are to be given appropriate fertility advice. STUDY FUNDING AND COMPETING INTERESTS: This paper was supported by funding from Cancer Research-UK to C.E., A.A.P. and R.R. (C481/A8141). The views expressed are those of the authors. No competing interests declared.

Banking sperm is only the first of many decisions for men: what healthcare professionals and men need to know.

Sperm banking is recommended for all males prior to cancer treatment where there are risks of infertility. Subsequent decisions about monitoring fertility, use of banked sperm or disposal are less well understood, with adverse consequences for men and cost implications. We review the literature around key decision points: Diagnosis of cancer, monitoring fertility, use of banked sperm and sperm disposal. The results suggest that decisions about banking are compromised by concerns to initiate treatment quickly; subsequent decisions about monitoring fertility, use of banked sperm or disposal are coloured by the views of family members, men's failure to understand the longer-term implications and their reluctance to avail themselves of health care generally. Methodological limitations of current research include low response rates, increased focus on germ cell cancers and a lack of research outside North America. There is evidence that men and oncologists could use sperm banks more "wisely". Lack of longitudinal work means it is not possible to determine the long-term consequences of banking for men's general health and well-being, or identify barriers to fertility monitoring or disposal. We argue that sperm banking should be considered as a series of decisions, all involving implications for fertility, contraception and social and psychological adjustment to cancer.

Parents' choices in banking boys' testicular tissue.

Researchers are working to derive sperm from banked testicular tissue taken from pre-pubertal boys who face therapies or injuries that destroy sperm production. Success in deriving sperm from this tissue will help to preserve the option for these boys to have genetically related children later in life. For the twin moral reasons of preserving access and equity in regard to having such children, clinicians and researchers are justified in offering the option to the parents of all affected boys. However, some parents may wish to decline the option to bank tissue from their boys because the technique may seem too unfamiliar or unusual, but over time people may become more comfortable with the technique as they have done with other novel assisted reproductive treatments (ARTs). Other parents may wish to decline the option because of moral or religious reasons. A prominent natural law theory holds, for example, that the ARTs that would be involved in using sperm derived from banked tissue to produce a child are morally objectionable. Some parents might not want to bank tissue in order to shield their son from using ARTs they see as objectionable. Clinicians and researchers should respect parents who wish to decline banking tissue, but parents should ordinarily embrace choices that protect the possible interests their sons may have as adult men, including the wish to have genetically related children.

Parental desire and acceptability of spermatogonial stem cell cryopreservation in boys with cancer.

BACKGROUND: In the near future, a substantial proportion of adults will be childhood cancer survivors. The cryopreservation and transplantation of spermatogonial stem cells (SSCs) is currently successful in animals; application in humans seems likely in the near future. Cryopreserving SSCs might become an important issue in childhood cancer. Because this might require testicular biopsies or hemicastration, parental desire/acceptability for SSC collection was enquired for. METHODS: Three hundred eighteen parents of boys surviving at least 2 years after the diagnosis of cancer were asked about collecting SSCs by biopsy or hemicastration and collecting sperm by masturbation or electrostimulation. Opinions were assessed as if at the time of diagnosis and at the present time. RESULTS: Sixty-three per cent of parents responded. At diagnosis, SSC collection by means of biopsy was approved by 61%, hemicastration by 33% and collecting sperm by 70% (P < 0.013). The acceptability of performing hemicastration was significantly lower than all other forms of SSC/sperm collection. No differences were observed between parents' present opinion and opinion at diagnosis. No differences related to treatment intensity, presumed negative fertility effects and pubertal state were found. CONCLUSIONS: Infertility is a major topic for parents. For prepubertal boys, the collection of SSCs might be a great relief in respect of the fertility issue. Collecting SSCs by biopsy is desired and accepted by the majority of parents; hemicastration is accepted by one-third of parents. The translation of SSC cryopreservation and transplantation from animal models to humans is eagerly awaited.