与高级别胶质瘤共度人生：青少年和青年的经历与需求

Navigating Life With High-Grade Glioma: Experiences and Needs of Adolescents and Young Adults.

作者信息

Devaraja Kaviya, Daniels Maureen, Tsang Derek S, Edelstein Kim, Bennett Julie, Kanter Cheryl, Mason Warren, Gupta Abha A, Avery Jonathan

机构信息

Institute of Medical Science, University of Toronto, Toronto, Canada.

Department of Supportive Care, Adolescent and Young Adult Program, Princess Margaret Cancer Centre, University of Toronto, Toronto, Canada.

出版信息

Cancer Med. 2025 Apr;14(7):e70867. doi: 10.1002/cam4.70867.

DOI:10.1002/cam4.70867

PMID:40197708

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11976453/

Abstract

BACKGROUND

Adolescents and young adults (AYA, 18-39) with high-grade glioma (HGG) face unique challenges at a life stage focused on autonomy, careers, relationships, and family planning.

AIM

This study explores their experiences to inform life-stage appropriate support and resources.

METHODS

In this mixed-methods study, we surveyed AYA HGG patients at Princess Margaret Cancer Centre (PM) to assess symptom experiences and care satisfaction. Interviews further explored their illness experiences and needs. Descriptive statistics summarized survey data, and thematic analysis guided by Braun and Clarke's framework identified key interview themes. Triangulation compared survey and interview results for a comprehensive understanding.

RESULTS

Seventeen participants (7 men, 10 women; mean age 30.57) completed surveys and interviews. Triangulation revealed typical AYA challenges, such as delays in education, careers, and relationships, along with HGG-specific issues. Three main themes emerged: (1) managing cognitive and treatment-related impacts on life goals, (2) addressing physical and cognitive impairments affecting relationships, and (3) navigating identity loss and independence due to neurological symptoms.

CONCLUSIONS

These findings highlight the need for tailored interventions and educational support integrated into AYA HGG care pathways.

摘要

背景

患有高级别胶质瘤（HGG）的青少年和青年（AYA，18 - 39岁）在一个专注于自主、职业、人际关系和计划生育的生命阶段面临着独特的挑战。

目的

本研究探讨他们的经历，以为适合生命阶段的支持和资源提供信息。

方法

在这项混合方法研究中，我们对玛格丽特公主癌症中心（PM）的AYA HGG患者进行了调查，以评估症状体验和护理满意度。访谈进一步探讨了他们的疾病经历和需求。描述性统计总结了调查数据，以布劳恩和克拉克框架为指导的主题分析确定了关键访谈主题。三角互证法比较了调查和访谈结果以获得全面理解。

结果

17名参与者（7名男性，10名女性；平均年龄30.57岁）完成了调查和访谈。三角互证法揭示了AYA的典型挑战，如教育、职业和人际关系方面的延迟，以及与HGG相关的特定问题。出现了三个主要主题：（1）管理对生活目标的认知和与治疗相关的影响，（2）解决影响人际关系的身体和认知障碍，（3）应对因神经症状导致的身份丧失和独立性问题。