The majority of children, adolescents, and young adults diagnosed with cancer will become long-term survivors. Although cancer therapy is associated with many adverse effects, one of the primary concerns of young male cancer survivors is reproductive health. Future fertility is often the focus of concern; however, it must be recognized that all aspects of male health, including pubertal development, testosterone production, and sexual function, can be impaired by cancer therapy. Although pretreatment strategies to preserve reproductive health have been beneficial to some male patients, many survivors remain at risk for long-term reproductive complications. Understanding risk factors and monitoring the reproductive health of young male survivors are important aspects of follow-up care. The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancer (COG-LTFU Guidelines) were created by the COG to provide recommendations for follow-up care of survivors at risk for long-term complications. The male health task force of the COG-LTFU Guidelines, composed of pediatric oncologists, endocrinologists, nurse practitioners, a urologist, and a radiation oncologist, is responsible for updating the COG-LTFU Guidelines every 2 years based on literature review and expert consensus. This review summarizes current task force recommendations for the assessment and management of male reproductive complications after treatment for childhood, adolescent, and young adult cancers. Issues related to male health that are being investigated, but currently not included in the COG-LTFU Guidelines, are also discussed. Ongoing investigation will inform future COG-LTFU Guideline recommendations for follow-up care to improve health and quality of life for male survivors.
There are no clear transition guidelines for adolescent and young adult cancer patients, their parents, and their primary care providers (PCPs) when completing active therapy and within the first few years after therapy. The purpose of this pilot study was to identify needs and concerns of recently treated adolescent cancer patients and their parents, young adult cancer survivors, and the community PCPs of adolescent patients. Four focus group interviews were conducted with survivors and parents, and 3 in-depth interviews were conducted with PCPs. All interviews were audiotaped and transcribed for content analysis. A range of needs were identified, including lack of adequate written and verbal information about their prior treatment, its potential side effects, and appropriate follow-up care. The best sources for education were identified as the primary oncologist, nurse practitioner, or nurse. At completion of treatment, parents and adult survivors felt a lack of psychosocial support. Suggestions from participants included use of informational videos for survivors, weekend education and support programs, ongoing support groups, use of the Internet, and educational newsletters. The PCPs reported a lack of general pediatric oncology knowledge and specific patient information, time constraints in their patient schedules, and having few survivors in their practices as barriers to optimal survivorship care. Further research is needed to look at the unmet educational and psychological needs of childhood cancer survivors and their parents during the critical time when they transition off treatment.
Due to the poor prognosis of high-risk (HR) neuroblastoma (NBL), scant data exist on late effects after treatment. Recently, protocols utilizing intense multimodal treatment have resulted in improved long-term survival. The objective of this study was to determine the prevalence of late effects in survivors of HR NBL. A retrospective review of clinical data for serial patients completing treatment between September 1994 and October 2007 and surviving for at least 1 year was performed. Therapy included aggressive chemotherapy, surgery, radiation and single or tandem SCT. Oncology follow-up was standard; clinical criteria were utilized for referrals to endocrinology and other services. Fifty-one eligible patients were identified. Median follow-up was 6.1 years (range 1.0-15.2). Height was significantly impacted (DZ-score À 1.91 in those treated with TBI and À 0.77 in those without). Pre-diabetes or diabetes, hypothyroidism and ovarian insufficiency were observed in 50, 59 and 75% of at-risk survivors, respectively. Hearing loss and dental issues were common. Nine patients had relapse of NBL; seven died of progressive disease. As there is a high prevalence of late effects in long-term survivors of HR NBL, close monitoring and further studies after treatment are indicated, and in particular after more modern, non-TBI regimens.
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