Fertility Preservation in Pediatric and Adolescent Oncology Patients: The Decision-Making Process of Parents

Li, Nancy; Jayasinghe, Yasmin; Kemertzis, Matthew A; Moore, Paddy; Peate, Michelle

doi:10.1089/jayao.2016.0061

Cited by 41 publications

(43 citation statements)

References 40 publications

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“…In pediatric oncology, developmental stages and maturity of patients vary greatly, as does risk for infertility . Additionally, fertility preservation options vary by a child's age and sex, and remain experimental for young children . Families can also be overwhelmed by fertility‐related and cancer‐related information, or parents may choose not to share such information with their child .…”

Section: Introductionmentioning

confidence: 99%

“…7 Additionally, fertility preservation options vary by a child's age and sex, and remain experimental for young children. [8][9][10] Families can also be overwhelmed by fertility-related and cancer-related information, or parents may choose not to share such information with their child. 11,12 Due to the interplay of such factors, some survivors grow up knowing that they could be at-risk for infertility, whereas others may be surprised to learn about such risk in survivorship.…”

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confidence: 99%

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The perceived impact of infertility on romantic relationships and singlehood among adult survivors of childhood cancer

et al. 2019

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Objective To examine whether adult survivors of childhood cancer perceive a direct impact of potential/confirmed infertility on their romantic relationships/singlehood. Methods Open‐ended qualitative phone interviews were conducted with 57 adult survivors of childhood cancer and analyzed through thematic content analysis until saturation was reached (N = 30). Results Interviews revealed three major themes: (1) impact on survivors, (2) impact on partners/romantic relationships, and (3) alternative routes to parenthood. An overarching theme related to (4) timing also emerged. In describing the impact on themselves, survivors shared subthemes of (1.1) becoming aware of infertility as potential late effect of childhood cancer treatment and (1.2) their emotional reactions (ie, worries/concerns, distress, guilt, no emotional reaction). The impact on partners/romantic relationships also included subthemes: (2.1) partner communication, (2.2) partner reactions, and (2.3) the journey of active family planning. Conclusions The perceived impact of potential/confirmed infertility on romantic relationships of adult survivors of childhood cancer varied across individuals and time. Its presence or absence depends on life circumstances (eg, marital status, life goals), and if present, negative effects were typically resolved over time by having a pregnancy. Other survivors found joy and comfort in step‐children, considering adoption, or embracing a life without children. While more research is needed, findings indicate that discussions about infertility and fertility testing should be tailored to individual survivors and their needs, which may change over time. Timely referrals to reproductive specialists or adoption agencies are recommended for those who want children and have difficulties conceiving.

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Section: Introductionmentioning

confidence: 99%

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confidence: 99%

The perceived impact of infertility on romantic relationships and singlehood among adult survivors of childhood cancer

et al. 2019

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“…They are often rushed as decisions usually need to occur prior to cancer treatment, and occur at a time of vulnerability. These conditions are ripe for the development of decisional conflict (uncertainty around whether to accept or reject fertility options) and decisional regret (the belief that had their fertility choice been different their current situation would be better) . The gold standard approach to facilitating complex decision making when there is more than one reasonable choice and when personal values affect consideration of benefits and risks is to use an evidence‐based decision aid (DA) .…”

Section: What Support Do Patients Require?mentioning

confidence: 99%

“…FP is complicated by moral, ethical and legal issues, which can be considerable barriers . Assent and consent for FP is complicated by the age of the patient, the timing of discussion occurring when patients have only just been told about a cancer diagnosis, the referral for FP being time sensitive, the difficulty of consenting patients who are unwell and parental third party consent . The selection of patients for FP is based on gonadotoxic risk and also the chance of survival; therefore, wide variations exist between HCPs and patients about what degree of survival should qualify for FP …”

Section: How Can We Reduce Barriers To Oncofertility Care?mentioning

confidence: 99%

“…53 and decisional regret (the belief that had their fertility choice been different their current situation would be better). [54][55][56][57] The gold standard approach to facilitating complex decision making when there is more than one reasonable choice and when personal values affect consideration of benefits and risks is to use an evidence-based decision aid (DA). 58 These are evidence-based tools, developed using International Patient Decision Aid Standards.…”

Section: Decision Aidsmentioning

confidence: 99%

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Oncofertility—An emerging discipline rather than a special consideration

Anazodo

Ataman

Jayasinghe

et al. 2018

Pediatric Blood & Cancer

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Originally absent from the oncologist's consult, then placed in a 'quality of life' rubric, oncofertility should now be an essential part of a comprehensive cancer treatment plan in patients of reproductive age, including adolescents and young adults (AYAs). Oncofertility encompasses the endocrine health of the patient, as well as fertility management options. Thus, pubertal transitions in males and females, bone health, and menstrual health are all part of this discipline, enabling practitioners to work in interdisciplinary teams to solve problems in reproductive health. This review provides a summary of the essential considerations required for the assessement of reproductive risk and choice of fertility preservation options as well as considerations for developing oncofertility services for AYAs.

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

Nahata

Dattilo

Lipak

et al. 2019

Pediatric Blood & Cancer

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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. K E Y W O R D Sadolescents and young adult males, cancer, fertility Childhood cancer survival rates exceed 80%, 1 but more than half of males experience infertility as a late effect of treatment. [2][3][4] Survivors often want biological children, and infertility may cause psychosocial distress and have a negative effect on intimate relationships and quality of life. 5-8 Thus, it is paramount to proactively address infertility risk and offer fertility preservation (FP) options before treatment. 9,10 Sperm banking is a safe and effective FP method available to pubertal males. 11 Although the increasing number of fertility programs Abbreviations: AYA, adolescent and young adult; FP, fertility preservation. has expanded FP access, 12-14 sperm banking rates remain under 40% at many pediatric cancer centers. 6,15 Older age, sexual experience, and provider recommendation increase the likelihood of sperm banking. 16,17 However, many adolescents and young adults (AYAs) advised to bank by their healthcare team still ultimately decline FP. 16 Fertility and sexual/reproductive health are sensitive topics, often difficult to discuss within families. 18,19 A recent study conducted immediately after the initiation of cancer treatment highlighted the importance of parent involvement in sperm banking decisions. 20However, AYAs and their parents may have discordant reproductive

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Fertility Preservation in Pediatric and Adolescent Oncology Patients: The Decision-Making Process of Parents

Abstract: Unique ethical issues arise in the pediatric and adolescent population. Considering that the decision to pursue FP is known to be difficult in the adult population, decisional conflict and regret may be greater for parents who are making the decision for their child.

Cited by 41 publications

References 40 publications

The perceived impact of infertility on romantic relationships and singlehood among adult survivors of childhood cancer

The perceived impact of infertility on romantic relationships and singlehood among adult survivors of childhood cancer

Oncofertility—An emerging discipline rather than a special consideration

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

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