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Pediatr Blood Cancer. 2019 Aug 12:e27966. doi: 10.1002/pbc.27966. [Epub ahead of print]

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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Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio.
Divisions of Endocrinology, Nationwide Children's Hospital, Columbus, Ohio.
The Ohio State University College of Medicine, Columbus, Ohio.
Hematology/Oncology, Nationwide Children's Hospital, Columbus, Ohio.
Center for Innovation and Pediatric Practice, The Research Institute at Nationwide Children's Hospital, Columbus, Ohio.
Department of Obstetrics and Gynecology, New York University School of Medicine, New York, New York.



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.


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.


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.


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.


adolescents and young adult males; cancer; fertility


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