Adverse health outcomes and health-related quality of life (HRQoL) among long-term adolescent and young adult (AYA) brain tumour survivors: results from the population-based SURVAYA study.

IF 2.8 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES Supportive Care in Cancer Pub Date : 2025-01-14 DOI:10.1007/s00520-025-09155-9

Konstantinos Angoumis, Catarina S Padilla, Mathilde C M Kouwenhoven, Rhodé M Bijlsma, Suzanne E J Kaal, Jacqueline M Tromp, Monique E M M Bos, Tom van der Hulle, Martinus P G Broen, Janine Nuver, Winette T A van der Graaf, Sophie Pauge, Olga Husson

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Abstract

Purpose: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

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青少年脑肿瘤长期幸存者的不良健康后果和健康相关生活质量（HRQoL）：基于人群的 SURVAYA 研究结果。

目的：青少年和青年恶性脑肿瘤（AYA）幸存者面临不良健康结局的风险，这可能影响他们的健康相关生活质量（HRQoL）。本研究旨在探讨(1)AYA-BT长期幸存者的生理和心理不良健康结局的患病率，(2)HRQoL，以及(3)不良健康结局与HRQoL的关系。将不良健康结局和HRQoL与其他AYA癌症（AYAC）幸存者进行比较。方法：对133例AYA-BT和3877例AYAC幸存者的SURVAYA研究进行横断面二次数据分析。对两组受试者自我报告的不良健康结果和HRQoL评分进行分析和比较。采用基于aic的反向消去线性回归模型评估与HRQoL的关联。结果：AYA-BT幸存者面临着严重的疲劳（47.6%）、未来不确定性（45.2%）、视力（34.4%）、语言、味觉或嗅觉（26.2%）损伤、癌症复发和转移（25.4%）等医疗条件问题。神经认知症状被确定为bt特异性问题（13.6-33.6%）。与AYAC幸存者相比，AYA-BT幸存者的报告显著(p)结论：长期AYA-BT幸存者被确定为高负担人群，在其癌症诊断后的HRQoL年受到多方面问题和多方面损害的影响。本研究强调了长期随访和整体多学科的生存护理方法的必要性，以最终提高AYA-BT生存质量。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Supportive Care in Cancer 医学-康复医学

CiteScore

5.70

自引率

9.70%

发文量

751

审稿时长

3 months

期刊介绍： Supportive Care in Cancer provides members of the Multinational Association of Supportive Care in Cancer (MASCC) and all other interested individuals, groups and institutions with the most recent scientific and social information on all aspects of supportive care in cancer patients. It covers primarily medical, technical and surgical topics concerning supportive therapy and care which may supplement or substitute basic cancer treatment at all stages of the disease. Nursing, rehabilitative, psychosocial and spiritual issues of support are also included.