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
Affiliations
- Department of Neurosurgery, University Neurosurgical Center Holland, Leiden University Medical Center and Haaglanden Medical Center & Haga Teaching Hospitals, Leiden and The Hague, The Netherlands.
- Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
- Leeds Institute of Medical Research at St James's, St James's University Hospital, Leeds, UK.
- Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UK.
- Department of Neurology, Haaglanden Medical Center, The Hague, The Netherlands.
- Brain Tumor Center Amsterdam, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
- 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
References
- Gerontologist. 2002 Jun;42(3):356-72 - PubMed
- Neuro Oncol. 2017 Jul 1;19(7):897-907 - PubMed
- Nephrol Dial Transplant. 2017 Apr 1;32(suppl_2):ii1-ii5 - PubMed
- J Neurooncol. 2013 Oct;115(1):87-94 - PubMed
- J Clin Epidemiol. 2010 Jan;63(1):28-36 - PubMed
- Gerontologist. 2020 Nov 23;60(8):609-619 - PubMed
- Lancet. 2004 May 8;363(9420):1535-43 - PubMed
- Int J Palliat Nurs. 2004 Feb;10(2):67-75; discussion 75 - PubMed
- BMC Med Res Methodol. 2008 Oct 30;8:70 - PubMed
- Support Care Cancer. 2017 Jan;25(1):245-253 - PubMed
- Arch Phys Med Rehabil. 1996 Feb;77(2):177-82 - PubMed
- Lancet Neurol. 2009 Sep;8(9):810-8 - PubMed
- Nurs Inq. 2004 Mar;11(1):43-53 - PubMed
- J Gerontol A Biol Sci Med Sci. 1998 Mar;53(2):M147-54 - PubMed
- Psychooncology. 2018 Feb;27(2):607-612 - PubMed
- Neuro Oncol. 2019 Jan 14;21(Suppl 1):i32-i43 - PubMed
- Psychol Med. 1997 Mar;27(2):363-70 - PubMed
- J Neurooncol. 2016 Jun;128(2):195-205 - PubMed
- Med Care. 1993 Mar;31(3):247-63 - PubMed
- Psychooncology. 2008 Oct;17(10):986-96 - PubMed
- Am J Epidemiol. 2012 Sep 15;176(6):506-11 - PubMed
- Qual Life Res. 1996 Feb;5(1):139-50 - PubMed
- Cochrane Database Syst Rev. 2019 Jul 02;7:CD012582 - PubMed
- J Head Trauma Rehabil. 2015 Nov-Dec;30(6):411-23 - PubMed
- Curr Med Res Opin. 2007 Apr;23(4):731-9 - PubMed
- J Cardiopulm Rehabil Prev. 2019 Nov;39(6):E6-E11 - PubMed
- Acta Psychiatr Scand. 1983 Jun;67(6):361-70 - PubMed
- Neurooncol Pract. 2020 Mar;7(2):228-238 - PubMed
- Res Nurs Health. 2006 Apr;29(2):105-20 - PubMed
- Neurooncol Pract. 2020 Mar;7(2):239-248 - PubMed
- Neuro Oncol. 2018 Oct 1;20(suppl_4):iv1-iv86 - PubMed
- Eur J Cancer Care (Engl). 2018 Jan;27(1): - PubMed
- Neurosurgery. 2020 Dec 15;88(1):155-164 - PubMed
- Acta Neurochir (Wien). 2017 Nov;159(11):2149-2159 - PubMed
- Am J Kidney Dis. 2006 Dec;48(6):955-63 - PubMed
- Neuro Oncol. 2019 Jul 11;21(7):911-922 - PubMed
- Med Care. 1992 Jun;30(6):473-83 - PubMed
- Mov Disord. 2007 May 15;22(7):924-31; quiz 1060 - PubMed
- BMC Geriatr. 2019 Sep 9;19(1):249 - PubMed
- Epilepsy Res Treat. 2014;2014:808421 - PubMed
- J Clin Nurs. 2008 Mar;17(6):790-9 - PubMed
- Patient Educ Couns. 2015 Aug;98(8):1011-6 - PubMed
- J Neurosci Nurs. 2015 Oct;47(5):271-84 - PubMed
- Amyotroph Lateral Scler. 2011 Mar;12(2):105-8 - PubMed
- Health Qual Life Outcomes. 2008 Jul 02;6:46 - PubMed
- Mult Scler. 2009 Nov;15(11):1347-55 - PubMed
- Epilepsia. 2017 Oct;58(10):1706-1715 - PubMed
- Eur J Cancer. 2010 Apr;46(6):1033-40 - PubMed
- Stroke. 2005 Oct;36(10):2181-6 - PubMed
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