Study question: How can the decision process for fertility preservation (FP) in adolescents and prepubertal boys be improved based on patient and parent feelings about FP counseling?
Summary answer: The content of information given to patients and parents and hope for future parenthood appeared to positively impact on the decision to preserve fertility in the pediatric population and, therefore, deserves special attention to improve FP care.
What is known already: A vast body of literature on adult cancer patients shows that reproductive capacity is a major quality-of-life issue. Patients also have a strong desire to be informed of available FP options with a view to future parenthood of their own genetic child, considering that <10% chose to adopt or used donated gametes. Furthermore, the quality of fertility counseling provided at the time of cancer diagnosis has been identified as a crucial factor in the decision-making process. By contrast, in the pediatric population, while it was shown that parents were able to make an informed and voluntary decision for their prepubertal sons despite the heavy emotional burden at the time of diagnosis, there is so far very limited information on patient expectations regarding FP. A lack of awareness often equates to suboptimal care by oncologists and FP specialists, and poor access to FP, therefore improving knowledge and identifying the expectations of pediatric patients and their parents are crucial for optimizing multidisciplinary collaborative care pathways (MCCPs), including counseling and access to FP methods, in the youngest population.
Study design, size, duration: A questionnaire survey was posted to an eligible population between May 2005 and May 2013.
Participants/materials, setting, methods: A total of 348 prepubertal boys and adolescents aged 0-18 years, diagnosed with cancer in a university hospital setting, were eligible. Three different questionnaires for two age groups of children (<12 and 12-18 years) and parents were established based on information from focus groups. Questions were subsequently reviewed by the institutional ethics board before being sent.
Main results and the role of chance: Of the 348 eligible patients, 44 died and 14 were lost to follow-up. Thus, 290 patients (77 aged 12-18 years and 213 aged <12 years) were sent a questionnaire. In total, 120 questionnaires were recovered, 45.5% (n = 35/77) from adolescents and 39.9% (n = 85/213) from children. FP acceptance rates were, respectively, 74 and 78.6% for boys aged <12 and 12-18 years. The content of information provided to patients and parents appeared to positively impact on the decision to preserve fertility (P = 0.04). While the majority of boys aged >12 years considered the information to be clear (72%), complete (80%) and understandable (90.9%), only 33.3% of boys aged <12 years were able to comprehend the information. Pressure from doctors to reduce the delay between diagnosis and cancer treatment increased the number of refusals (P<0.01), while hope for future parenthood favored acceptance (P < 0.01). Family support was considered important for 75% of adolescents and 58% of children, and medical support for 50% of adolescents and 42% of children.
Limitations, reason for caution: This single-center survey does not allow extrapolation of the information to other settings. Recall bias and lack of full external validation of the questionnaires are further limitations. Modification of the current MCCP should be further evaluated according to our results.
Wider implications of the findings: Acknowledging the issues faced and familiarizing oneself with the care of patients undergoing fertility-threatening therapies supply primary care providers with the appropriate quality management tools in the field of FP in centers for reproductive medicine. Expectations reported in the survey allow appropriate support to be included within the MCCP design.
Study funding/competing interests: Funding by hospital/clinic(s); Cliniques Universitaires Saint Luc, Brussels, Belgium. The authors have no conflict of interest to declare.
Trial registration number: NCT02411214.
Keywords: cancer; fertility preservation; quality of life; spermatogonia; spermatozoa.
© The Author 2015. Published by Oxford University Press on behalf of the European Society of Human Reproduction and Embryology. All rights reserved. For Permissions, please email: email@example.com.