Testicular Biopsy for Fertility Preservation in Prepubertal Boys with Cancer: Identifying Preferences for Procedure and Reactions to Disclosure Practices.

PURPOSE: Fertility preservation options are limited in prepubertal boys with cancer. Worldwide there has been growing interest in testicular tissue cryopreservation as a promising experimental strategy to address future infertility. We measured and compared parent, male cancer survivor and provider willingness to accept the risk of testicular biopsy among prepubertal boys with cancer, and identified reactions to disclosure practices. MATERIALS AND METHODS: We conducted a multicenter study that included 153 parents of prepubertal boys with cancer, 77 male survivors of childhood cancer and 30 oncology providers. The threshold technique was used to measure subject relative willingness to accept risk of testicular biopsy under 4 different aspects of care, ie chance of infertility, complications from biopsy, development of technology to use tissue and tissue storage cost. A total of 47 in-depth interviews were conducted to identify reactions to disclosure practices. RESULTS: A total of 52 survivors (67%), 22 providers (73%) and 110 parents (72%) selected to have testicular biopsy (vs no biopsy). Median minimum infertility risk to make biopsy worthwhile varied from 25% to 30% among the 3 respondent groups. Interviews revealed that some providers would not offer biopsy in cases of greater perceived risk than benefit, that parents preferred having information regardless of risk of infertility and that nondisclosure elicited adverse feelings from some parents. CONCLUSIONS: Parents, survivors and providers were willing to accept risk of prepubertal testicular biopsy. Parental/survivor desire for information and provider decision not to disclose suggest that barriers to information delivery need to be addressed.

An approach to fertility preservation in prepubertal and postpubertal females: a critical review of current literature.

Advancements in childhood cancer treatment have led to increasing survivorship, creating a greater emphasis on long-term management of patients, including quality of life and side effects from therapy; foremost of which is preserving fertility. The American Society of Clinical Oncology (ASCO) recently revised their guidelines and recommend fertility preservation options be discussed at the earliest possible opportunity for newly diagnosed patients, including methods available for children that remain investigational. Herein, we discuss the current barriers to and the impact of these guidelines for pediatric oncologists caring for young female patients, and provide some suggestions on how to approach this complicated topic.

Conceptual framework for health-related quality of life assessment in acute gastroenteritis.

BACKGROUND AND OBJECTIVES: To date, most trials in pediatric acute gastroenteritis have evaluated short-term clinical disease activity (eg, duration of diarrhea or vomiting, level of dehydration), laboratory outcomes (eg, rotavirus, norovirus), or a composite of these outcomes. Measuring health-related quality of life may also be important in evaluating the effect of interventions for acute gastroenteritis in children. The objectives of this study were to conduct individual interviews and, when possible, focus group discussions, with parents of children with acute gastroenteritis; to determine how parent and child quality of life is negatively affected by acute gastroenteritis; and, from the perspective of parents and children, to develop a conceptual framework for quality of life instrument specific to pediatric acute gastroenteritis. METHODS: We conducted interviews and focus groups with parents of children (3 months-5 years of age) given a diagnosis of gastroenteritis in a hospital emergency department. Interviews and focus groups were conducted to determine the effect of gastroenteritis on quality of life in parents and children (as perceived by the parents). RESULTS: Interviews and focus groups involving 25 parents suggested a conceptual framework that, for children, includes 2 domains (physical and emotional function) and 14 subdomains. For parents, our framework includes 3 domains (physical, emotional, and social function) with physical function including 4 subdomains, emotional function including 7 subdomains, and social function including 2 subdomains. The framework has been used to develop a preliminary quality of life questionnaire for parents and children. CONCLUSIONS: Acute gastroenteritis has an important adverse effect on health-related quality in both children and parents involving physical symptoms and restrictions in physical function and disturbed emotional function. Upon further research on the psychometric properties of the proposed questionnaires, future trials of effectiveness should consider measuring patient important outcomes such as health-related quality of life.