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The experience of living with malignant meningioma
Andrea Daniela Maier1,2, Sara Nordentoft1, Tiit Mathiesen1,3,4
1Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark.
Objectives:
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.
Methods:
This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 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.
Results:
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.
Significance Of Results:
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.
Insights
Malignant meningioma diagnosis negatively impacts patients' quality of life, affecting their sense of self and future outlook. Improved shared decision-making and continuity of care are recommended for this rare patient group.
Area of Science:
- Neuro-oncology
- Qualitative Health Research
- Patient-Reported Outcomes
Background:
- Meningiomas are common primary intracranial tumors, with malignant forms representing 1-3% of cases.
- Little is understood about the lived experiences and quality of life for patients with malignant meningioma.
Purpose of the Study:
- To explore patient-perceived quality of daily life following a malignant meningioma diagnosis.
- To gain a patient-centered perspective on the impact of malignant meningioma.
Main Methods:
- Qualitative explorative study utilizing individual semi-structured interviews.
- Inductive thematic analysis of data from 8 interviewed patients diagnosed with malignant meningioma.
- Patients selected from a cohort diagnosed between 2000-2021 at Rigshospitalet.
Main Results:
- Four themes emerged: perceived illness/symptoms, identity/roles/interaction, future threat/uncertainty, and belief in authority.
- Quality of life is negatively impacted, with shifts in self-concept and social interactions.
- Patients may have differing prognostic awareness compared to healthcare professionals.
Conclusions:
- Malignant meningioma significantly affects quality of life through perceived threat and future uncertainty.
- Patient identity, roles, and interactions are consistently altered.
- Enhanced shared decision-making and continuity of care are crucial for supporting this patient group.
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