Stein Daniel M, Victorson David E, Choy Jeremy T, Waimey Kate E, Pearman Timothy P, Smith Kristin, Dreyfuss Justin, Kinahan Karen E, Sadhwani Divya, Woodruff Teresa K, Brannigan Robert E
Department of Urology, Feinberg School of Medicine, Northwestern University , Chicago, Illinois. ; Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University , Chicago, Illinois.
Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University , Chicago, Illinois. ; The Robert H. Lurie Comprehensive Cancer Center of Northwestern University , Chicago, Illinois.
J Adolesc Young Adult Oncol. 2014 Jun 1;3(2):75-82. doi: 10.1089/jayao.2014.0007.
In this study, we set out to determine the preferences, concerns, and attitudes toward fertility preservation of adult male survivors of pediatric cancer and their parents. We conducted 3 focus groups with a total of 15 male survivors of pediatric cancer (age at diagnosis: mean=14, range: 10-20; age at study: mean=35, range: 25-47) and 2 groups with a total of 7 parents of survivors. Grounded theory methodology was used for the identification and analysis of recurrent themes expressed by survivors and their parents in the course of focus group discussions. Themes most frequently expressed by survivors included concern regarding long-term treatment effects and a retrospective desire for fertility impairment to have been discussed when they were originally diagnosed with cancer. Parental themes included the same hindsight desire, as well as reliance upon the treating oncologist for direction in selecting the course of treatment, and an acknowledgment that input from a specialist in fertility preservation would have been beneficial. Although future reproductive potential was not consistently reported as a source of apprehension when diagnosed with cancer, both survivors and their parents noted it to be a paramount concern later in life. Parents and survivors both reported that fertility preservation discussions should be routinely incorporated in the clinical context of a pediatric cancer diagnosis.
在本研究中,我们着手确定小儿癌症成年男性幸存者及其父母对生育力保存的偏好、担忧和态度。我们开展了3个焦点小组,共有15名小儿癌症男性幸存者(诊断时年龄:平均 = 14岁,范围:10 - 20岁;研究时年龄:平均 = 35岁,范围:25 - 47岁)以及2个小组,共有7名幸存者的父母参与。扎根理论方法用于识别和分析幸存者及其父母在焦点小组讨论过程中表达的反复出现的主题。幸存者最常表达的主题包括对长期治疗效果的担忧,以及回顾性地希望在最初被诊断出癌症时就讨论生育力受损问题。父母表达的主题包括同样的事后想法,以及在选择治疗方案时依赖主治肿瘤学家的指导,并且承认生育力保存专家的意见会有所帮助。尽管未来的生殖潜力在被诊断出癌症时并非一直被报告为担忧的来源,但幸存者及其父母都指出这在他们日后的生活中是至关重要的问题。父母和幸存者都报告说,生育力保存讨论应常规纳入小儿癌症诊断的临床背景中。