Patient-reported outcomes in conservatively managed cerebral cavernous malformations.

Autor: Sandmann ACA; Department of Neurology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.; Amsterdam Neuroscience, Neurovascular Disorders, Amsterdam, The Netherlands., Kempeneers MA; Department of Neurosurgery, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.; Amsterdam Neuroscience, Neurovascular Disorders, Amsterdam, The Netherlands., van den Berg R; Department of Radiology and Nuclear Medicine, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.; Amsterdam Neuroscience, Neurovascular Disorders, Amsterdam, The Netherlands., Vandertop WP; Department of Neurosurgery, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.; Amsterdam Neuroscience, Neurovascular Disorders, Amsterdam, The Netherlands., Verbaan D; Department of Neurosurgery, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.; Amsterdam Neuroscience, Neurovascular Disorders, Amsterdam, The Netherlands., Coutinho JM; Department of Neurology, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands. j.coutinho@amsterdamumc.nl.; Amsterdam Neuroscience, Neurovascular Disorders, Amsterdam, The Netherlands. j.coutinho@amsterdamumc.nl.
Jazyk: angličtina
Zdroj: Journal of neurology [J Neurol] 2024 Dec 12; Vol. 272 (1), pp. 12. Date of Electronic Publication: 2024 Dec 12.
DOI: 10.1007/s00415-024-12805-3
Abstrakt: Background: There is a paucity of studies on patient-reported outcomes and quality of life (QoL) in conservatively managed patients with a cerebral cavernous malformation (CCM).
Methods: This single-center observational study included consecutive adult CCM patients, diagnosed in 2000-2023, managed conservatively, and with at least 6 months of follow-up. Patients completed two validated patient-reported outcome measures (PROMs): EuroQol 5-dimensions 5-levels (EQ-5D-5L), and Patient-Reported Outcome Measurement Information System 29 (PROMIS-29). Results were compared with Dutch reference populations.
Results: Of 246 eligible patients with a CCM, 205 (83%) completed the PROMs. Median age was 46 years and 45% were male. Ninety-six (47%) patients presented with symptomatic hemorrhage (SH), 49 (24%) with a seizure, and 51 (25%) had a brainstem CCM. Median follow-up was 62 months (IQR 38-97). CCM patients had lower utility-weighted EQ index scores than the reference population (0.79 versus 0.87, p < 0.001). Most PROMIS-29 domain scores showed no significant difference, but patients reported more anxiety/fear (54.1 versus 50.3, p < 0.001) and depression/sadness (52.4 versus 50.3, p = 0.005), and less pain (41.6 versus 55.6, p < 0.001). Patients who presented with SH or seizure, or who had a brainstem CCM reported significantly worse scores in several domains compared to those with other presentations, or without brainstem CCM.
Conclusions: Patients with conservatively managed CCMs reported lower overall health than the general population. Mental health was affected most, while other domains were largely comparable, and patients reported less pain. Presentation with SH, seizure, or brainstem CCM was associated with worse scores. These data can help patient counseling, suggesting guidance on mental health.
Competing Interests: Declarations. Conflicts of interest: JMC received financial support from the Dutch Heart Foundation, Medtronic, Bayer and Boehringer (all fees were paid to his employer), and is co-founder and shareholder of TrianecT. RvdB has a non-personal hospital consultancy at Johnson & Johnson (CERENOVUS). All other authors declare that there are no relevant financial or non-financial interests to disclose. Ethics approval: This study was conducted in accordance with the 1964 Declaration of Helsinki and its later amendments. This study was waived for ethical approval by the Institutional Review Board of the Amsterdam UMC because it did not fall under the scope of the Medical Research Involving Human Subjects Act (WMO). Informed consent: All patients provided written informed consent for the use of clinical data and data derived from the questionnaire.
(© 2024. Springer-Verlag GmbH Germany, part of Springer Nature.)
Databáze: MEDLINE
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