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Journal of Adolescent and Young Adult Oncology

Special Edition on Prioritizing Diversity and Inclusion in Quality Oncofertility Care


Since the term Oncofertility was coined 15 years ago the field has given more patients the opportunity to preserve their future fertility following a cancer diagnosis. The collaborations between scientists and clinicians, across a number of different specialities and across different health care professionals has led to over 30 international guidelines discussing the benefits of oncofertility care for cancer patients.

Clinicians understand that the term Oncofertility is broader than just fertility and that patients require management for other reproductive complications of cancer treatment (hormonal management, contraception management, management of sexual and psychosexual dysfunction and reproductive preventative screening) during and following a cancer diagnosis. The development of ‘Precision Oncology’ care and integration of new novel agents and immunotherapy has also resulted in a lack of reproductive knowledge around certain newer cancer treatments.

Despite the advances in Oncofertility care less than 50% of cancer patients are given the opportunity to hear about the gonadotoxic risks of their treatment or opportunities for fertility preservation. Following cancer treatment many patients are frustrated by the lack of reproductive continuity of care and the lack of advice and support they receive.

A number of barriers exist that prevent uniformed access for all patients including the cost of oncofertility care, access to age-appropriate care, availability of oncofertility collaboration and referral pathways between cancer and fertility centres, availability of specialist expertise and training, timely referrals and ability to reach patients in rural and regional communities.

The barriers to oncofertility care are amplified in certain patient groups as a result of a lack of funding and universal access to fertility preservation, a lack of understanding about culture and religious views, and poorer health literacy or heteronormative presumptions of sexuality which hinder patient centric discussions about reproductive choices without stigma.

Oncofertility models of care are essential to ensure greater access for all cancer patients but these models have a number of different domains that need to be developed and implemented into standard cancer care across paediatric, AYA and adult services. They include access to age appropriate oncofertility care, referral pathways between cancer and fertility services, clear communication irrespective of risk or survival, fertility related psychological support and access to decisional support, oncofertility training of health care professionals and reproductive survivorship care.

In this special edition we are pleased to bring together a roundtable discussion on Oncofertility Inclusion and Diversity to initiate the conversation about how we can ensure that services that benefit all patients are being developed. We have also republished 12 articles which bring together research on important aspects of the Oncofertility model of care from diagnosis to survivorship care.


Roundtable Discussion

Inclusion and Diversity in Oncofertility Care

Moderators: Leslie Appiah, Antoinette Anazodo, Participants: Mahmoud Salama, Joyce Reinecke, Julie Sroga Rios, Lennie Sender, and Terri Lynn Woodard

Emotional Expression and Oncofertility

Influence of Negative Emotional Expressions on the Outcomes of Shared Decision Making During Oncofertility Consultations in Japan

Tomoe Koizumi, Kazuko Nara, Tomoko Hashimoto, Satoru Takamizawa, Kouhei Sugimoto, Nao Suzuki, and Yoshiharu Morimoto

Male Infertility Understanding

Adolescent Males' Understanding of Infertility as a Long-Term Effect of Cancer Therapy

Sophie I.G. Roher, Abha A. Gupta, Barbara E. Gibson, Armando J. Lorenzo, and Jennifer L. Gibson

Male Cancer Patients Oncofertility Goals

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

Leena Nahata, Taylor L. Morgan, Amanda C. Ferrante, Nicole M. Caltabellotta, Nicholas D. Yeager, Joseph R. Rausch, Sarah H. O'Brien, Gwendolyn P. Quinn, and Cynthia A. Gerhardt


Fertility-Related Perceptions and Impact on Romantic Relationships Among Adult Survivors of Childhood Cancer

Vicky Lehmann, Leena Nahata, Amanda C. Ferrante, Jennifer A. Hansen-Moore, Nicholas D. Yeager, James L. Klosky, and Cynthia A. Gerhardt