Garcia Fox Rachel, Chukwueke Ugonma N, Sannes Timothy, Miran Damien, Chiu Daniel, Bagley Christina, Holmes Emerson Grace, Peirce Benjamin, Beroukhim Rameen, Youssef Gilbert, McFaline-Figueroa J Ricardo, Aquilanti Elisa, Quant Lee Eudocia, Nayak Lakshmi, Wen Patrick Y, Gonzalez Castro L Nicolas, Reardon David A
Center for Neuro-Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Neurooncol Pract. 2024 Aug 5;12(1):87-99. doi: 10.1093/nop/npae065. eCollection 2025 Feb.
Lower-grade (WHO grades 2-3) gliomas typically affect young and middle-aged adults and exhibit () mutations. For such patients, symptoms related to the tumor and associated treatment contribute to morbidity and erode quality of life. With improved treatment, a better understanding of these effects over time is critically needed. Existing data characterizing unmet needs of lower-grade glioma patients is limited and little consensus exists on addressing these needs in clinical practice.
In order to better identify and address the unmet needs of lower-grade glioma patients, focus groups among patients and caregivers were initially conducted among patients treated at a single academic center. A semi-structured interview guide to comprehensively understand unmet needs was then developed. Each patient-defined unmet need was categorized into domains through qualitative content analysis. In parallel, a database of established local and regional community-based resources was established, and a dedicated resource specialist provided patient-specific referrals and follow-up.
Eighty-five patients were interviewed. Median age was 41 years and the median time from tumor diagnosis was 63 months. Approximately 68% had a WHO grade 2 tumor and 60% were off therapy. Qualitative analysis of interview content identified 5 overarching domains of unmet need: Psychosocial; Neurologic/Cognitive; Lifestyle; Financial; and Other Medical. At least one unmet need was identified by 71% of participants and the most common domains were Psychosocial (40.7%) and Lifestyle (34.9%).
Our program begins to address frequently unmet survivorship needs of lower-grade glioma patients that spanned 5 major domains. Further research aimed to better define and address unmet needs among these patients is warranted.
低级别（世界卫生组织2-3级）胶质瘤通常影响中青年成年人，并表现出（）突变。对于此类患者，与肿瘤相关的症状及相关治疗会导致发病，并损害生活质量。随着治疗方法的改进，迫切需要更好地了解这些影响随时间的变化情况。现有的关于低级别胶质瘤患者未满足需求的数据有限，在临床实践中解决这些需求方面几乎没有达成共识。
为了更好地识别和解决低级别胶质瘤患者未满足的需求，最初在一个学术中心接受治疗的患者中开展了患者和护理人员焦点小组讨论。随后制定了一份半结构化访谈指南，以全面了解未满足的需求。通过定性内容分析，将每个患者定义的未满足需求分类到不同领域。同时，建立了一个基于当地和地区社区的既定资源数据库，并有一名专门的资源专家提供针对患者的转诊和随访服务。
共采访了85名患者。中位年龄为41岁，自肿瘤诊断后的中位时间为63个月。约68%的患者患有世界卫生组织2级肿瘤，60%的患者停止了治疗。对访谈内容的定性分析确定了未满足需求的5个总体领域：心理社会；神经/认知；生活方式；财务；以及其他医疗。71%的参与者至少确定了一项未满足的需求，最常见的领域是心理社会（40.7%）和生活方式（34.9%）。
我们的项目开始解决低级别胶质瘤患者经常未得到满足的生存需求，这些需求涵盖5个主要领域。有必要开展进一步研究，以更好地界定和满足这些患者的未满足需求。
