PO.PS01.10 · 人群科学
青少年和青年癌症生存者中父母对遗传性风险的担忧
Parental concerns about hereditary risk in adolescent and young adult cancer survivors
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
背景：青少年和青年癌症生存者（AYAs；在15–39岁之间被诊断）报告对其子女健康的担忧，尤其是关于子女罹患癌症的可能性。本研究描述了族裔多样的AYA癌症生存者中生殖健康担忧的频率，并考察遗传咨询如何影响这些担忧。
方法：从两家NCI指定的综合癌症中心和一家安全网医院招募诊断时年龄在18–39岁之间的AYAs。使用三条目的儿童健康子量表（Child's Health Subscale，CHS）——癌症后生殖担忧量表（Reproductive Concerns after Cancer Scale）的一个子集——评估对未来子女健康的担忧。是否接受遗传咨询由自我报告。进行了描述性统计和总体平均分比较，并按族裔和是否接受咨询分层。
结果：样本包括58名AYAs（48%为西班牙裔，79%为女性），平均诊断年龄为36岁（SD=5）。最常见的癌症类型为乳腺癌（22%）和脑/脊髓肿瘤（19%）。样本中纳入的其他癌症类型包括宫颈癌、子宫癌、卵巢癌、霍奇金淋巴瘤、非霍奇金淋巴瘤、结直肠癌、黑色素瘤、肉瘤和卵巢癌。总体而言，56%（n=32）的AYAs报告未接受任何形式的咨询。AYAs的平均CHS评分为2.11（SD=0.8；范围1–3，评分越高反映担忧越大），表明对未来子女健康有中等程度的担忧。接受过咨询者与未接受咨询者的平均CHS评分无显著差异（分别为2.3 [SD=.7] 对 2.1 [SD=.9]，p=.2）。平均总体CHS评分与族裔之间未发现显著差异。
结论：本研究中，无论是否接受遗传咨询，AYAs对未来子女健康均表达中等程度的担忧，提示当前的咨询实践可能未能充分解决驱动这些担忧的因素。此外，未接受咨询的AYAs（推测为那些未被认定有咨询指征者）中存在的高担忧水平，凸显了在生存者照护中如何传达风险信息和给予安慰方面的潜在缺口。这些发现表明，需要在整个生存者连续照护过程中加强生殖健康和遗传风险的讨论，确保有指征和无指征的生存者都能获得适当的指导、安慰和支持。
查看英文原文 English abstract
Background: Adolescent and young adult cancer survivors (AYAs; diagnosed between ages 15-39) report worries regarding the health of their children, particularly regarding their chance of developing cancer. This study describes the frequency of reproductive health concerns among ethnically diverse survivors of AYA cancer and examines how genetic counseling impacts these concerns.
Methods: AYAs between 18-39 years at diagnosis were recruited from two NCI-designated comprehensive cancer centers and a safety-net hospital. Concerns regarding the health of future children were evaluated using the three-item Child's Health Subscale (CHS), a subset of the Reproductive Concerns after Cancer Scale. Receipt of genetic counseling was self-reported. Descriptive statistics and mean overall score comparisons were examined, stratified by ethnicity and receipt of counseling.
Results: The sample included 58 AYAs (48% Hispanic, 79% female) diagnosed at a mean age of 36 years (SD=5). The most common cancer types were breast (22%) and brain/spinal cord (19%). Additional cancer types included in our sample were cervical, uterine, ovarian, Hodgkin lymphoma, non-Hodgkin lymphoma, colorectal, melanoma, sarcoma, and ovarian. Overall, 56% (n=32) of AYAs reported they did not receive any form of counseling. AYAs had a mean CHS score of 2.11 (SD=0.8; range 1-3, where higher scores reflect greater concern), indicating moderate concern about their future child's health. Mean CHS scores did not differ significantly for those who had received counseling versus those who had not (2.3 [SD=.7] vs 2.1 [SD=.9], p=.2, respectively). No significant differences were found between mean overall CHS scores and ethnicity.
Conclusion: In this study, AYAs expressed moderate concerns about their future child's health regardless of whether they received genetic counseling, suggesting that current counseling practices may not fully address the factors driving these concerns. Moreover, high concern levels among AYAs who did not receive counseling (presumably those not identified as having an indication for it) highlight potential gaps in how risk information and reassurance are conveyed within survivorship care. These findings indicate the need to strengthen reproductive health and genetic risk discussions across the survivorship continuum, ensuring both indicated and non-indicated survivors receive appropriate guidance, reassurance, and support.
利益披露 Disclosure
D. Ruiz, None..
J. Stal, None..
A. C. Betts, None.