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Neurooncol Adv. 2020 Dec 05;3(1):vdaa169. doi: 10.1093/noajnl/vdaa169. eCollection 2021.

The long-term caregiver burden in World Health Organization grade I and II meningioma: It is not just the patient.

Neuro-oncology advances

Amir H Zamanipoor Najafabadi, Pim B van der Meer, Florien W Boele, Martin J B Taphoorn, Martin Klein, Saskia M Peerdeman, Wouter R van Furth, Linda Dirven,

Affiliations

  1. Department of Neurosurgery, University Neurosurgical Center Holland, Leiden University Medical Center and Haaglanden Medical Center & Haga Teaching Hospitals, Leiden and The Hague, The Netherlands.
  2. Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
  3. Leeds Institute of Medical Research at St James's, St James's University Hospital, Leeds, UK.
  4. Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK.
  5. Department of Neurology, Haaglanden Medical Center, The Hague, The Netherlands.
  6. Brain Tumor Center Amsterdam, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
  7. Department of Neurosurgery, Amsterdam University Medical Centers, Amsterdam, The Netherlands.

PMID: 33543144 PMCID: PMC7850085 DOI: 10.1093/noajnl/vdaa169

Abstract

BACKGROUND: Little is known about long-term caregiver burden in meningioma patients. We assessed meningioma caregiver burden, its association with informal caregiver's well-being and possible determinants.

METHODS: In this multicenter cross-sectional study, informal caregivers completed the Caregiver Burden Scale (five domains and total score). Patients completed a disease-specific health-related quality of life (HRQoL) questionnaire focusing on symptoms (EORTC QLQ-BN20) and underwent neurocognitive assessment. Both groups completed a generic HRQoL questionnaire (SF-36) and the Hospital Anxiety, and Depression Scale. We assessed the association between caregiver burden and their HRQoL, anxiety and depression. Furthermore, we assessed determinants for the caregiver burden. Multivariable regression analysis was used to correct for confounders.

RESULTS: One hundred and twenty-nine informal caregivers were included (median 10 years after patients' treatment). Caregivers reported burden in ≥1 domain (34%) or total burden score (15%). A one-point increase in total caregiver burden score was associated with a clinically relevant decrease in caregiver's HRQoL (SF-36) in 5/8 domains (score range: -10.4 to -14.7) and 2/2 component scores (-3.5 to -5.9), and with more anxiety (3.8) and depression (3.0). Patients' lower HRQoL, increased symptom burden, and increased anxiety and depression were determinants for higher caregiver burden, but not patients' or caregivers' sociodemographic characteristics, patients' neurocognitive functioning, or tumor- and treatment-related characteristics.

CONCLUSIONS: Ten years after initial treatment, up to 35% of informal caregivers reported a clinically relevant burden, which was linked with worse HRQoL, and more anxiety and depression in both patients and caregivers, emphasizing the strong interdependent relationship. Support for meningioma caregivers is therefore warranted.

© The Author(s) 2020. Published by Oxford University Press, the Society for Neuro-Oncology and the European Association of Neuro-Oncology.

Keywords: anxiety; caregiver burden; depression; health-related quality of life; meningioma

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