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Patient-reported outcomes in conservatively managed cerebral cavernous malformations
Abel Clemens Adriaan Sandmann1,2, Marinus Abraham Kempeneers3,2, René van den Berg4,2
1Department of Neurology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Journal of Neurology
|December 12, 2024
Summary
Patients with conservatively managed cerebral cavernous malformations (CCM) report lower overall health and more mental health issues compared to the general population. Specific symptoms like hemorrhage or brainstem involvement worsen outcomes.
Area of Science:
- Neurology
- Neurosurgery
- Patient-Reported Outcomes
Background:
- Limited research exists on patient-reported outcomes and quality of life (QoL) for conservatively managed cerebral cavernous malformations (CCM).
- Understanding patient perspectives is crucial for comprehensive CCM management.
Purpose of the Study:
- To assess patient-reported outcomes and quality of life (QoL) in adults with conservatively managed cerebral cavernous malformations (CCM).
- To compare outcomes of CCM patients with the general Dutch population.
- To identify factors associated with worse outcomes in CCM patients.
Main Methods:
- Single-center observational study of adult CCM patients managed conservatively with at least 6 months follow-up.
- Utilized validated patient-reported outcome measures (PROMs): EuroQol 5-dimensions 5-levels (EQ-5D-5L) and Patient-Reported Outcome Measurement Information System 29 (PROMIS-29).
- Compared patient scores to Dutch reference populations.
Main Results:
- CCM patients reported lower overall health (EQ index: 0.79 vs. 0.87) and significantly more anxiety/fear and depression/sadness.
- While most PROMIS-29 domains were comparable, CCM patients reported less pain.
- Symptomatic hemorrhage, seizures, or brainstem CCM presentation correlated with significantly worse scores in several domains.
Conclusions:
- Conservatively managed CCM patients exhibit reduced overall health and mental well-being compared to the general population.
- Mental health domains are most affected, with pain being less prevalent.
- Clinical presentation, particularly symptomatic hemorrhage, seizures, or brainstem location, negatively impacts patient-reported outcomes, informing patient counseling and care strategies.
