Angoumis Konstantinos, Padilla Catarina S, Kouwenhoven Mathilde C M, Bijlsma Rhodé M, Kaal Suzanne E J, Tromp Jacqueline M, Bos Monique E M M, van der Hulle Tom, Broen Martinus P G, Nuver Janine, van der Graaf Winette T A, Pauge Sophie, Husson Olga
University of Bielefeld, School of Public Health, 33615, Bielefeld, Germany.
Department of Medical Oncology, Netherlands Cancer Institute - Antoni van Leeuwenhoek, 1066 CX, Amsterdam, the Netherlands.
Support Care Cancer. 2025 Jan 14;33(2):95. doi: 10.1007/s00520-025-09155-9.
Adolescent and young adult (AYA) malignant brain tumour (BT) survivors are at risk of adverse health outcomes, which may impact their health-related quality of life (HRQoL). This study aimed to investigate the (1) prevalence of physical and psychological adverse health outcomes, (2) the HRQoL, and (3) the association of adverse health outcomes and HRQoL among long-term AYA-BT survivors. Adverse health outcomes and HRQoL were compared to other AYA cancer (AYAC) survivors.
A cross-sectional secondary data analysis of the SURVAYA study among 133 AYA-BT and 3877 AYAC survivors was conducted. Participant self-reported adverse health outcomes and HRQoL scores were analysed and compared between the two populations. Associations with HRQoL were assessed using linear regression modelling with AIC-based backward elimination.
AYA-BT survivors faced significant issues of fatigue (47.6%), future uncertainty (45.2%), and medical conditions like vision (34.4%), speech, taste, or smell (26.2%) impairments, cancer recurrence, and metastasis (25.4%). Neurocognitive symptoms were identified as BT-specific issues (13.6-33.6%). Compared to AYAC survivors, AYA-BT survivors reported significantly (p < 0.05) lower functioning scores on the role, cognitive, emotional, and social HRQoL, with cognitive (56.0%) and emotional (40.0%) domains being the most affected. Adverse health outcomes were negatively associated with HRQoL, ranging from small to large clinical relevance.
Long-term AYA-BT survivors were identified as a highly burdened population, affected by multifaceted issues and multidimensional detriments in HRQoL years beyond their cancer diagnosis. This study highlights the necessity of long-term follow-up and a holistic, multidisciplinary approach to survivorship care to ultimately improve the quality of AYA-BT survivorship.
青少年及青年（AYA）恶性脑肿瘤（BT）幸存者面临健康不良后果的风险，这可能会影响他们的健康相关生活质量（HRQoL）。本研究旨在调查（1）长期AYA-BT幸存者身体和心理不良健康后果的患病率，（2）健康相关生活质量，以及（3）不良健康后果与健康相关生活质量之间的关联。将不良健康后果和健康相关生活质量与其他AYA癌症（AYAC）幸存者进行比较。
对SURVAYA研究中的133名AYA-BT幸存者和3877名AYAC幸存者进行横断面二次数据分析。分析并比较了两组人群中参与者自我报告的不良健康后果和健康相关生活质量得分。使用基于AIC的向后消除法进行线性回归建模，评估与健康相关生活质量的关联。
AYA-BT幸存者面临疲劳（47.6%）、未来不确定性（45.2%）以及视力（34.4%）、言语、味觉或嗅觉（26.2%）受损、癌症复发和转移（25.4%）等医疗问题。神经认知症状被确定为BT特有的问题（13.6%-33.6%）。与AYAC幸存者相比，AYA-BT幸存者在角色、认知、情感和社会健康相关生活质量方面的功能得分显著较低（p<0.05），其中认知（56.0%）和情感（40.0%）领域受影响最大。不良健康后果与健康相关生活质量呈负相关，临床相关性从小到大都有。
长期AYA-BT幸存者被确定为负担沉重的人群，在癌症诊断后的数年里，他们受到多方面问题和多维度的健康相关生活质量损害的影响。本研究强调了长期随访以及采用全面、多学科的方法进行生存护理的必要性，以最终提高AYA-BT幸存者的生存质量。
