Professor Fair and the public health major, alongside cancer advocate Megan-Claire Chase, presented their work at the American Psychosocial Oncology Society conference in Atlanta on Feb. 28, and the Society of Adolescent Health and Medicine conference in Washington, D.C., on March 7.
Music’s Lumen Scholar research focuses on adolescents and young adult (AYA) cancer survivors and their experiences with fertility preservation (FP) (interventions that can preserve cancer patients’ reproductive capacity). Though fertility is a well-documented concern for cancer patients, oncologists rarely begin conversations with AYA patients regarding treatment-related infertility. In order to better understand their perspectives, Music conducted a focus group, in-depth interviews, and an online survey of 40 AYA cancer survivors. Through the process of participant recruitment, Music connected with Chase, an advocate and survivor who wrote about her experience with treatment-related infertility on her award-winning blog Life on the Cancer Train. Chase became a critical research collaborator who helped identify additional participants and contributed to qualitative analyses.
The study analyzed fertility preservation-related experiences and factors that influenced such discussions from the understudied perspective of AYAs. Participants also developed recommendations on how and when healthcare providers should address fertility preservation. Rather than providing a voice to this population, the ultimate goal of this research was to amplify their unique perspectives and experiences.
Though the majority of participants were introduced to FP at diagnosis (63%) most were dissatisfied with the quality of the information, too overwhelmed to process the long-term implications, and had to seek additional resources on their own. Slightly more than half of participants reported interest in pursuing FP, however; only 14 participants were actually able to receive FP treatment. Among those who pursued FP, many women felt unprepared for the invasive and painful nature of the process, and were uninformed of the following steps of surrogacy. Those who declined or were unable to access FP described grief, loss of identity, mental health consequences, and relationship stress.
One participant noted, “The struggles of fertility are more difficult to handle than the struggles of cancer. I’ll never be a mother and never even had a chance.” Factors perceived to influence FP conversations included disease severity, patient characteristics (age, medical knowledge, income, and geographic location), and provider characteristics (levels of knowledge and sensitivity). Participants identified a need for AYA-friendly brochures at clinics to explain the possible physical and emotional consequences that treatment can have on fertility as well as FAQs highlighted from other patients. AYAs wanted oncologists to initiate conversations, discuss all FP options, provide specific fertility-related data, and collaborate with other health care providers to refer patients to reproductive specialists and mental health counseling.
They also presented an oral presentation during a symposium with their poster, “The struggles of fertility are more difficult than the struggles of cancer”: Adolescent and Young Adult Cancer Survivors’ Perspectives on Fertility Preservation, at the Society of Adolescent Health and Medicine conference on March 7 in Washington, D.C. Findings are published in the Journal of Adolescent Health.
“This has truly been a transformative experience and this research highlights the fundamental importance of holistic care,” said Music, the only undergraduate presenter at either conference.
For Chase, the presentations offered an opportunity as a survivor to advocate directly to the medical community and let the voices of AYA survivors be heard in a way that was authentic and purposeful. “It was a monumental first step in focusing a spotlight on the emotional, mental and physical toll cancer treatments have on our bodies.”