Marino Jennifer L, Peate Michelle, McNeil Robyn, Orme Lisa M, McCarthy Maria C, Glackin Aoife, Sawyer Susan M
Department of Obstetrics and Gynaecology, Royal Women's Hospital, Parkville, Australia.
Centre for Adolescent Health, Royal Children's Hospital, Parkville, Australia.
J Adolesc Young Adult Oncol. 2024 Feb;13(1):180-188. doi: 10.1089/jayao.2023.0037. Epub 2023 Jun 20.
To understand how adolescents and young adults (AYAs) with cancer experience family and partner involvement in fertility preservation (FP) decision-making. As part of a nationally representative Australian cross-sectional study of 15-25-year olds with cancer, 196 participants (mean age 19.9 [standard deviation 3.2] years at diagnosis; 51% male) were surveyed regarding FP decision-making. One hundred sixty-one (83%) participants reported discussion of potential effects of cancer and its treatment on fertility, of whom 57 (35%) did not undertake FP (51% of females; 19% of males). Parental involvement (mothers 62%, fathers 45%) in decision-making was considered helpful, including for 73% of 20-25-year olds with partners. Sisters and brothers were involved less often, yet rated helpful in 48% and 41% of cases, respectively. Older participants were more likely than younger ones to have involved partners (47% vs. 22%, = 0.001) and less likely to have involved mothers (56% vs. 71%, = 0.04) or fathers (39% vs. 55%, = 0.04). This is the first quantitative study to explore family and partner involvement in AYA FP decision-making in both females and males in a nationally representative sample. Parents are important resources who commonly assist AYAs with these complex decisions. Although many AYAs will be the main decision-makers when it comes to FP, particularly as AYAs mature, these data suggest that resources and support should be available for and inclusive of parents, partners, and siblings.
了解患癌青少年和青年(AYA)如何看待家人和伴侣参与生育力保存(FP)决策过程。作为一项针对澳大利亚15至25岁患癌人群的全国代表性横断面研究的一部分,对196名参与者(诊断时平均年龄19.9岁[标准差3.2];51%为男性)进行了关于FP决策的调查。161名(83%)参与者报告讨论了癌症及其治疗对生育力的潜在影响,其中57名(35%)未采取FP措施(女性占51%;男性占19%)。父母参与决策(母亲占62%,父亲占45%)被认为是有帮助的,包括20至25岁有伴侣的参与者中有73%持此看法。兄弟姐妹参与的情况较少,但分别在48%和41%的案例中被认为有帮助。年龄较大的参与者比年龄较小的参与者更有可能让伴侣参与(47%对22%,P = 0.001),而让母亲(56%对71%,P = 0.04)或父亲(39%对55%,P = 0.04)参与的可能性较小。这是第一项在全国代表性样本中探索家人和伴侣参与AYA女性和男性FP决策的定量研究。父母是重要的资源,他们通常会协助AYA做出这些复杂的决策。尽管在FP方面,许多AYA将成为主要决策者,尤其是随着他们逐渐成熟,但这些数据表明,应该为父母、伴侣和兄弟姐妹提供资源并让他们得到支持。