Loeschner Denise, Wagle Prajjwal Raj, Jung Anna, Neumeister Anne, McLean Anna Cecilia Lawson, Gerlach Ruediger
Department of Neurosurgery, Helios Clinics Erfurt, Nordhaeuser Str. 74, 99089, Erfurt, Germany.
Department of Neurosurgery, Jena University Hospital, Friedrich-Schiller- University, Am Klinikum 1, 07747, Jena, Germany.
J Neurooncol. 2025 Jun 17. doi: 10.1007/s11060-025-05129-3.
To analyze the communication setting of a high-grade glioma (HGG) diagnosis, patients' emotional responses and their needs of further support and information as well as education about the disease to optimize neuro-oncological treatment.
In a single-center survey, a 10-item questionnaire was developed to analyse the setting of communication, emotional aspects, needs and impression of education or information in patients with HGG between March and May of 2024. Three questions focused on the conversation setting, two on education, one on emotional aspects, and four on patients' support. Descriptive statistics and Chi Square tests were used to analyze these multidimensional items.
Patients' age ranged from 27 to 77 years (median 55), 14 patients (28%) were female, and 36 (72%) were male. Most patients (62%, 31/50) received support when informed of their diagnosis, primarily from relatives (42%, 21/50), especially life partners (22%, 11/50). A majority (64%, 32/50) were satisfied with the initial information received, while 32% (16/50) preferred additional details. Less than half of the patients (21/50, 42%) used further possibilities for support. Patients indicated their need of further information in 14% (7/50), additional support in 12% (6/50, 12%) and extended conversation time in 10%.
Each patient should receive individualized medical consultations to adequately communicate the HGG diagnosis and treatment requirements. Discussions about treatment options and recommendations should involve patients' support systems, including family members or close friends. Despite the availability of psycho-oncological support during hospitalization, ongoing community support for patients and caregivers is essential and should be promoted early. Continuous improvements in patient education, accessibility, and caregiver support will enhance coping, resilience and caregivers' mastery in neuro-oncology.
分析高级别胶质瘤（HGG）诊断的沟通场景、患者的情绪反应及其对进一步支持、信息以及疾病相关教育的需求，以优化神经肿瘤治疗。
在一项单中心调查中，于2024年3月至5月期间，设计了一份包含10个条目的问卷，用于分析HGG患者的沟通场景、情感方面、需求以及对教育或信息的印象。三个问题聚焦于对话场景，两个关于教育，一个关于情感方面，四个关于患者支持。采用描述性统计和卡方检验来分析这些多维度项目。
患者年龄在27岁至77岁之间（中位数为55岁），14名患者（28%）为女性，36名（72%）为男性。大多数患者（62%，31/50）在得知诊断结果时获得了支持，主要来自亲属（42%，21/50），尤其是生活伴侣（22%，11/50）。大多数（64%，32/50）对最初获得的信息感到满意，而32%（16/50）希望得到更多细节。不到一半的患者（21/50，42%）利用了更多的支持途径。14%（7/50）的患者表示需要更多信息，12%（6/50，12%）表示需要额外支持，10%表示需要延长对话时间。
每位患者都应接受个性化的医疗咨询，以便充分沟通HGG的诊断和治疗要求。关于治疗方案和建议的讨论应包括患者的支持系统，包括家庭成员或亲密朋友。尽管住院期间有心理肿瘤学支持，但对患者和护理人员持续的社区支持至关重要，应尽早推广。不断改进患者教育、可及性和护理人员支持将增强神经肿瘤患者的应对能力、恢复力以及护理人员的掌控能力。
