Fertility Preservation and Adolescent Cancer Patients: Lessons from Adult Survivors of Childhood Cancer and Their Parents

Nieman, Carrie L.; Kinahan, Karen E.; Yount, Susan; Rosenbloom, Sarah; Yost, Kathleen J.; Hahn, Elizabeth A.; Volpe, Timothy; Dilley, Kimberley; Zoloth, Laurie; Woodruff, Teresa K.

doi:10.1007/978-0-387-72293-1_15

Cited by 76 publications

(77 citation statements)

References 36 publications

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“…Our study presents data from 209 participants, outnumbering participation in the majority of similar studies (pre-or post-ASCOR) [3,5,6,[10][11][12][13][14]. Nonetheless, it is important to note that the response rate to this survey was low.…”

Section: Study Limitationsmentioning

confidence: 95%

Results from the survey for preservation of adolescent reproduction (SPARE) study: gender disparity in delivery of fertility preservation message to adolescents with cancer

Köhler

Kondapalli

Shah

et al. 2010

J Assist Reprod Genet

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164

133

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Purpose Diminished reproductive capacity is a devastating consequence of life-sparing therapies for childhood malignancy. In 2006, the American Society of Clinical Oncology (ASCO) published fertility preservation recommendations (ASCOR) emphasizing the importance of early discussion and intervention for fertility preservation strategies. Using the Survey for Preservation of Adolescent REproduction (SPARE), we sought to determine fertility preservation attitudes and practice patterns post-ASCOR from pediatric oncology specialists nationwide. Materials and methods The SPARE survey consists of 22 questions assessing pediatric oncology specialists' attitudes and practice patterns toward fertility preservation. Broad perspectives on fertility preservation, including a willingness to discuss fertility, knowledge of current fertility preservation methods and awareness of ASCOR, were assessed. Genet (2011) 28:269-277 DOI 10.1007 Capsule The SPARE survey captured marked disparities between pediatric oncologists' attitudes and practice patterns regarding fertility preservation for male and female pediatric oncology patients. Statement of Financial SupportResults The majority of respondents acknowledged that fertility threats are a major concern for them and agreed that all pubertal cancer patients should be offered a fertility consultation, but only 46% reported they refer male pubertal cancer patients to a fertility specialist prior to cancer treatment >50% of the time, and only 12% reported they refer female pubertal cancer patients to a fertility specialist prior to cancer treatment > 50% of the time. While 44% of respondents were familiar with the 2006 ASCOR, only 39% of those utilized them to guide decision-making in greater than half of their patients. Conclusion Our study demonstrates pediatric oncologists' motivation to preserve fertility in pediatric cancer patients; however, barriers to both gamete cryopreservation and referral to fertility specialists persist. Female pubertal patients are referred to fertility preservation specialists with much less frequency than are male pubertal patients, highlighting a disparity.

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Section: Study Limitationsmentioning

confidence: 95%

Results from the survey for preservation of adolescent reproduction (SPARE) study: gender disparity in delivery of fertility preservation message to adolescents with cancer

Köhler

Kondapalli

Shah

et al. 2010

J Assist Reprod Genet

Self Cite

164

133

View full text Add to dashboard Cite

show abstract

“…Currently, preservation methods for females include established methods such as embryo and oocyte cryopreservation and shielding the ovaries from radiation, as well as experimental methods such as ovarian tissue cryopreservation. 10 Concerns about potential infertility may not be solicited by parents or healthcare providers during treatment discussions for a variety of reasons. Previous studies suggest parents and healthcare providers do not see fertility as a priority, 11,12 do not have adequate knowledge or referral sources available, [11][12][13] or feel uncomfortable discussing sexuality with adolescents.…”

mentioning

confidence: 99%

Coping Styles of Female Adolescent Cancer Patients with Potential Fertility Loss

Quinn

Murphy

Knapp

et al. 2013

Journal of Adolescent and Young Adult Oncology

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Purpose: The purpose of this qualitative study was to assess the coping styles of female adolescent cancer patients regarding potential loss of fertility. Expectations and desires for the future, coping styles in typical adolescence, and coping styles when faced with potential loss of fertility due to cancer treatment are discussed. Methods: Female adolescents diagnosed with cancer aged 12-18 years at study (N = 14) were administered a 10-item values clarification tool to pilot test the readability and relevance of the items on reproductive concerns, followed by a cognitive debriefing interview asking participants how they would respond to each item. These qualitative responses were assessed for coping style type using the constant comparative approach. Results: All adolescent participants reported having a strong desire for biological children in the future. Reactions to questions regarding the loss of fertility fell into two categories of coping styles: emotion-focused coping or problem-focused (engagement) coping. Within emotion-focused coping, there were three distinct styles: externalizing attribution style, internalizing attribution style, and repressive adaptation. Problem-focused coping adolescents displayed optimism. Conclusion: Successful interventions aimed at promoting adaptive coping styles should seek to uncover adolescents' values about future parenthood and reproduction. Development of an age-appropriate assessment to stimulate dialogue regarding fertility and initiate an adolescent's cognitive processing of potential fertility loss is warranted.

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“…Parents are often making decisions for their children with little to no input from them [10,28]. Ethical and legal considerations are also at play, as adolescent patients are minors who cannot give informed consent unless emancipated from their parents or guardians [29].…”

Section: Barriers To Treatment and Referralmentioning

confidence: 99%

“…Since release of the ASCOR, only a few studies have been published regarding fertility preservation utilization among pediatric oncology patients [10][11][12][13][14]. Despite the existence of the ASCO recommendations, similar themes emerge from these studies, including a need for improved communication between pediatric oncology providers and specialists in reproductive medicine, a lack of fertility preservation counseling by health care providers, patient and patient guardian misconceptions, and poor patient guardian fertility preservation satisfaction rates [15][16][17].…”

Section: Introductionmentioning

confidence: 99%