Kaviya Devaraja, Maureen Daniels, Derek S. Tsang, Kim Edelstein, Julie Bennett, Cheryl Kanter, Warren Mason, Abha A. Gupta, Jonathan Avery
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引用次数: 0
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.
患有高级别胶质瘤（HGG）的青少年和年轻人（AYA, 18-39）在生命阶段面临着独特的挑战，主要集中在自主性、职业、人际关系和计划生育方面。目的探讨他们的经验，为生命阶段提供适当的支持和资源。方法在这项混合方法研究中，我们调查了玛格丽特公主癌症中心（PM） AYA HGG患者，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Braun和Clarke的框架为指导的主题分析确定了关键的访谈主题。三角测量法对调查结果和访谈结果进行了比较，以便全面了解。结果17例受试者(男性7例，女性10例；平均年龄30.57岁)完成调查和访谈。三角测量揭示了典型的AYA挑战，如教育、职业和人际关系的延迟，以及hgg特有的问题。出现了三个主要主题：(1)管理认知和治疗对生活目标的相关影响，(2)解决影响人际关系的身体和认知障碍，以及(3)处理由于神经症状导致的身份丧失和独立性。结论：这些研究结果强调了在AYA HGG护理途径中进行量身定制的干预和教育支持的必要性。
期刊介绍：
Cancer Medicine is a peer-reviewed, open access, interdisciplinary journal providing rapid publication of research from global biomedical researchers across the cancer sciences. The journal will consider submissions from all oncologic specialties, including, but not limited to, the following areas:
Clinical Cancer Research
Translational research ∙ clinical trials ∙ chemotherapy ∙ radiation therapy ∙ surgical therapy ∙ clinical observations ∙ clinical guidelines ∙ genetic consultation ∙ ethical considerations
Cancer Biology:
Molecular biology ∙ cellular biology ∙ molecular genetics ∙ genomics ∙ immunology ∙ epigenetics ∙ metabolic studies ∙ proteomics ∙ cytopathology ∙ carcinogenesis ∙ drug discovery and delivery.
Cancer Prevention:
Behavioral science ∙ psychosocial studies ∙ screening ∙ nutrition ∙ epidemiology and prevention ∙ community outreach.
Bioinformatics:
Gene expressions profiles ∙ gene regulation networks ∙ genome bioinformatics ∙ pathwayanalysis ∙ prognostic biomarkers.
Cancer Medicine publishes original research articles, systematic reviews, meta-analyses, and research methods papers, along with invited editorials and commentaries. Original research papers must report well-conducted research with conclusions supported by the data presented in the paper.
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