Maier Andrea Daniela, Nordentoft Sara, Mathiesen Tiit, Guldager Rikke
Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark.
Department of Pathology, Copenhagen University Hospital, Copenhagen, Denmark.
Palliat Support Care. 2024 Apr;22(2):338-346. doi: 10.1017/S1478951523000585.
Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1-3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis.
This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients ( = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke's guidelines.
Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals.
We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients' identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.
脑膜瘤是最常见的原发性颅内肿瘤，大多数为良性。对于占所有脑膜瘤1%-3%的恶性脑膜瘤患者这一罕见群体，我们知之甚少。我们的目的是探讨恶性脑膜瘤确诊后患者对日常生活质量的感受。
这项定性探索性研究由个体半结构式访谈组成。从2000年至2021年在里格霍斯皮塔尔诊断为恶性脑膜瘤的23名患者的背景人群中，根据参与访谈的能力选择符合条件的患者（n = 12）。我们按照布劳恩和克拉克的指导方针进行了归纳主题分析。
对8名患者进行了访谈。分析揭示了4个总体主题：（1）感知到的疾病和症状原因，（2）身份、角色和互动，（3）未来的威胁和不确定性，以及（4）对权威的信任。疾病对感知到的日常生活质量产生负面影响。患者经历了自我概念和亲密互动的转变，一些人难以接受新的日常生活。与医护人员相比，患者存在预后认知不一致的高风险。
我们提供了急需的以患者为中心的恶性脑膜瘤生活视角：生活质量受到威胁感和未来不确定性的影响。不同受试者对疾病的感知和症状原因的解释各不相同，但一个共同特征是患者的身份、角色和互动受到了影响。共同决策和加强随访期间的连续性可能有助于这个罕见的患者群体。
