Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study

Marino, Jennifer L.; Peate, Michelle; McNeil, Robyn; Orme, Lisa M.; McCarthy, Maria C.; Glackin, Aoife; Sawyer, Susan M.

doi:10.1089/jayao.2023.0037

Cited by 3 publications

(3 citation statements)

References 42 publications

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“…Studies indicated that in countries where FP treatments are not covered by health insurers, the costs for FP can directly affect accessibility [28,35]. Costs were mentioned as a barrier for FP referral or FP procedures [30,52,67,69]. The costs that need to be considered are not just the financial burden of cancer (i.e., not being able to work) and the cost of medical treatment, but also the anticipated future costs of IVF using stored biological material [38,39,41].…”

Section: Costs Of Fertility Preservation Treatmentmentioning

confidence: 99%

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Patient-Reported Outcomes (PROs) and Patient Experiences in Fertility Preservation: A Systematic Review of the Literature on Adolescents and Young Adults (AYAs) with Cancer

Klijn,

ter Kuile,

Lashley

2023

Cancers

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With better survival rates for patients diagnosed with cancer, more attention has been focused on future risks, like fertility decline due to gonadotoxic treatment. In this regard, the emphasis during counselling regarding possible preservation options is often on the treatment itself, meaning that the medical and emotional needs of patients regarding counselling, treatment, and future fertility are often overlooked. This review focuses on patient-reported outcomes (PROs) and patient experiences regarding fertility preservation (FP)—among adolescents and young adults (AYAs) with cancer. A systematic review of the literature, with a systematic search of online databases, was performed, resulting in 61 selected articles. A quality assessment was performed by a mixed methods appraisal tool (MMAT). Based on this search, three important topics emerged: initiating discussion about the risk of fertility decline, acknowledging the importance of future fertility, and recognizing the need for more verbal and written patient-specific information. In addition, patients value follow-up care and the opportunity to rediscuss FP and their concerns about future fertility and use of stored material. A clear FP healthcare pathway can prevent delays in receiving a referral to a fertility specialist to discuss FP options and initiating FP treatment. This patient-centered approach will optimize FP experiences and help to establish a process to achieve long-term follow up after FP treatment.

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Section: Costs Of Fertility Preservation Treatmentmentioning

confidence: 99%

“…The support of a health care provider is crucial for the decisional satisfaction of patients who decided not to pursue FP [48]. Marino et al also reported that parental or partner involvement in decision-making was considered helpful [67].…”

Section: Decision Making About a Fertility Preservation Treatmentmentioning

confidence: 99%

Patient-Reported Outcomes (PROs) and Patient Experiences in Fertility Preservation: A Systematic Review of the Literature on Adolescents and Young Adults (AYAs) with Cancer

Klijn,

ter Kuile,

Lashley

2023

Cancers

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“…AYA are in a position of particular vulnerability, and are generally ill-equipped to proactively bring up questions of possible future parenthood and engage in patient-led or collaborative decision-making with their treatment team, who may themselves find aspects such as the legal frameworks overwhelming [57,58]. The availability of accessible, clear and age-appropriately worded, up-to-date information about the Swiss legal framework and practice pertaining to AYA parenthood is key to empowering AYA in their decision making and, if the AYA desire this, enabling their partner's and family's support [16,[58][59][60][61]. It is the authors' aim as legal scholars to help bridge this knowledge gap.…”

Section: Aya Organization Categories Examplesmentioning

confidence: 99%

Adolescents and Young Adults with Cancer and the Desire for Parenthood—A Legal View from a Swiss Perspective in Consideration of the Relevance of Cancer Support Organizations

Baur,

Staudinger,

Aebi

2023

Current Oncology

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This commentary focuses on the challenges and possibilities that adolescents and young adults with cancer (AYA) desiring parenthood face under Swiss law. The regulation of reproductive medicine procedures is stricter in Switzerland than in some other countries. Health insurance is compulsory, but the interventions that are covered are in constant flux. Recent changes pertain to the possibilities of future AYA parenthood and keeping up to date with practical and legal ramifications is taxing even for health professionals. AYA facing treatment decisions are uniquely vulnerable and dependent on comprehensive, clear, current, and country-specific information regarding risks and options pertaining to their fertility. This commentary provides a short overview of the Swiss legal framework related to reproductive medicine, highlighting its access restrictions and prohibitions, as well as recent changes. While the importance of patient, peer, caregiver, and interest groups supporting people affected by health conditions has long been recognized in many countries, an AYA organization was only recently established in Switzerland. Such organizations are vital for providing accurate, country-specific information and support, while individualized medical guidance, informed by the most current legal framework and its consequences, remains essential in addressing AYAs’ specific needs in connection with the desire to have children.

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Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents

Glackin,

Marino,

Peate

et al. 2024

Journal of Adolescent and Young Adult Oncology

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Experiences of Family and Partner Support in Fertility Decision-Making Among Adolescents and Young Adults with Cancer: A National Australian Study

Cited by 3 publications

References 42 publications

Patient-Reported Outcomes (PROs) and Patient Experiences in Fertility Preservation: A Systematic Review of the Literature on Adolescents and Young Adults (AYAs) with Cancer

Patient-Reported Outcomes (PROs) and Patient Experiences in Fertility Preservation: A Systematic Review of the Literature on Adolescents and Young Adults (AYAs) with Cancer

Adolescents and Young Adults with Cancer and the Desire for Parenthood—A Legal View from a Swiss Perspective in Consideration of the Relevance of Cancer Support Organizations

Experiences of Oncofertility Decision-Making and Care in a National Sample of Adolescent and Young Adult Cancer Patients and Parents

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