Authors Wyns C, Collienne C, Shenfield F, et al.
Review Date September 2015
Citation Human Reproduction 2015; 30(9): 2022–2030
Young males with cancer being treated with gonadotoxic therapies have several options available for fertility preservation (FP). For adolescent boys the most common technique is cryopreservation of mature sperm collected by masturbation. For pre-pubertal boys, however, cryopreservation of immature testicular tissue is the only option but is still experimental. As there are many competing priorities at the time of a cancer diagnosis, the discussion of fertility preservation may get missed, and it can be difficult for young boys given parenthood is not something they may have thought about yet. Providing support and information to help parents and boys make decisions about fertility preservation are therefore integral to the care of young males with cancer.
The authors aimed to critically analyse the multidisciplinary collaborative care pathway (MCCP) in the paediatric population, focusing on factors influencing the decision around fertility preservation, and to elucidate and characterize the feelings of patients and their parents, with a view to better fulfilling their expectations.
A total of 348 pre-pubertal boys and adolescents aged 0–18 years, diagnosed with cancer between May 2005 and May 2013, in a university hospital setting in Belgium, were eligible to participate in the study. At the time of cancer diagnosis, all patients/parents were provided information by paediatricians and oncologists and were then referred to a reproductive medicine specialist. Children 5 years or older were encouraged to be part of the discussion with their parents. Boys 12 years or older were offered an opportunity to discuss fertility preservation without parents present. Follow-up sessions were offered to adolescents 1 year after cancer treatment finished and to pre-pubertal boys at any time after cancer treatment and/or when they turned 18 years.
Data were collected via postal questionnaire. Three different questionnaires were developed for two age groups of children (younger than 12 and 12–18 years) and parents, based on information from focus groups and the literature. Questions were subsequently reviewed by the institutional ethics board before being sent. Questions were closed-ended with multiple choice response with space for free-text responses to provide further information. Proportions were compared using the chi-square test or Fisher’s exact test.
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 completed by parents, with or without corresponding questionnaires from the child: 45.5% (n=35) of adolescents and 39.9% (n=85) of children < 12 years of age. 23 adolescents aged 12-18 years and 28 boys under 12 years of age also completed questionnaires. FP acceptance rates were, respectively, 74 and 78.6% for boys aged <12 and 12–18 years. It appeared that decisions were made jointly by the boys and their parents. Reasons for refusal of FP were the urgency of cancer treatment, diminished general health, the FP procedure not being a priority or the experimental status of FP before puberty.
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 favoured acceptance (P < 0.01).
76% of children and 48% of adolescents considered their health to be more important than the ability to have a family. Family support was considered important for 75% of adolescents and 58% of children, and medical support for 50% of adolescents and 42% of children.
As technology for effective FP methods for children and adolescents improves, it is important to understand the factors that may contribute to their uptake. Discussion around FP should provide full and understandable information with an emphasis on the possibility of future parenthood. There is a need for the care team to be resourced to offer support and information in an efficient manner so that the need for initiating treatment does not preclude the opportunity for FP.
Points to Note
- This study from one Belgian university medical centre showed a high uptake of FP by young boys and adolescents in the context of well-resourced multidisciplinary collaborative care pathways.
- Study limitations include: the results are likely to be specific to this centre and may not be extrapolated to other settings; a low response rate, particularly to the second part of the questionnaire on communication/information needs; the authors were not clear about how the answers given by the children were incorporated into the answers from parents in the analysis; retrospective data collection.
- The finding that pressure from doctors to get treatment started had a negative impact and hope for future parenthood had a positive impact on the decision to undertake FP has implications for how multidisciplinary care teams manage information provision, support and access to FP in paediatric cancer settings.
- Results suggest that even quite young children can be participants in decision-making about their own fertility and health care providers should not make assumptions based on age.
- FP should be an integral part of care for young males undergoing gonadotoxic treatments, particularly as technologies progress.