Document Type: Original Article
Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran Sina Hospital, Tehran University of Medical Sciences, Tehran, Iran
Department of Neurology, School of Medicine, Tehran University of Medical Sciences, Tehran, Iran
Department of Neurology, Shariati Hospital, Tehran University of Medical Sciences, Tehran, Iran
Background: Caregivers of patients with amyotrophic lateral sclerosis (ALS) may suffer from anxiety, depression, and reduced quality of life (QoL). Our goal was to evaluate the QoL and mood disorders in caregivers and their correlation with the patients' demographic, physical, and mental conditions.
Methods: We analyzed data from 39 patients with ALS and their caregivers. Patients completed questionnaires of anxiety assessed by Generalised Anxiety Disorder Assessment (GAD-7), depression using the Beck Depression Inventory-II (BDI-II), and QoL via 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Physical impairment was also measured in the patients using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). Caregivers were also assessed by BDI-II, GAD-7, and 36-item Short-Form Health Survey questionnaire (SF-36).
Results: The prevalence of depression and anxiety in the patients was 82.1% and 71.8%, respectively. Caregivers also had higher rates of anxiety and depression and lower levels of QoL in comparison with the general population (anxiety: 66.7%, depression:
43.6%). Depression and anxiety were considerably associated with worsened QoL in the caregivers. None of the demographic, physical, or mental characteristics of patients with ALS were related to either mood status or QoL of the caregiver population.
Conclusion: Caregivers experience higher rates of anxiety and depression and lower QoL in comparison with the general population. The severity of mood disorders is inversely associated with the physical and mental domains of caregivers' QoL. Nonetheless, QoL in the caregivers is not affected by the physical or mental disability of the patients.
- Korner S, Kollewe K, Abdulla S, Zapf A, Dengler R, Petri S. Interaction of physical function, quality of life and depression in Amyotrophic lateral sclerosis: Characterization of a large patient cohort. BMC Neurol 2015; 15: 84.
- Jakobsson Larsson B, Ozanne AG, Nordin K, Nygren I. A prospective study of quality of life in amyotrophic lateral sclerosis patients. Acta Neurol Scand 2017; 136(6): 631-8.
- Chen D, Guo X, Zheng Z, Wei Q, Song W, Cao B, et al. Depression and anxiety in amyotrophic lateral sclerosis: Correlations between the distress of patients and caregivers. Muscle Nerve 2015; 51(3): 353-7.
- Kurt A, Nijboer F, Matuz T, Kubler A. Depression and anxiety in individuals with amyotrophic lateral sclerosis: Epidemiology and management. CNS Drugs 2007; 21(4): 279-91.
- Rabkin JG, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? A longitudinal study. Amyotroph Lateral Scler 2009; 10(5-6): 448-55.
- Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med 2010; 15(6): 685-93.
- Olsson Ozanne AG, Strang S, Persson LI. Quality of life, anxiety and depression in ALS patients and their next of kin. J Clin Nurs 2011; 20(1-2): 283-91.
- Chio A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients' perception of being a burden in ALS. Neurology 2005; 64(10): 1780-2.
- World Medical Association. World medical association declaration of Helsinki: Ethical principles for medical research involving human subjects. JAMA 2013; 310(20): 2191-4.
- Brooks BR, Miller RG, Swash M, Munsat TL. El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 2000; 1(5): 293-9.
- Shamshiri H, Eshraghian MR, Ameli N, Nafissi S. Validation of the Persian version of the 40-item amyotrophic lateral sclerosis assessment questionnaire. Iran J Neurol 2013; 12(3): 102-5.
- Montazeri A, Goshtasebi A, Vahdaninia M, Gandek B. The Short Form Health Survey (SF-36): Translation and validation study of the Iranian version. Qual Life Res 2005; 14(3): 875-82.
- Ghassemzadeh H, Mojtabai R, Karamghadiri N, Ebrahimkhani N. Psychometric properties of a Persian-language version of the Beck Depression Inventory-Second edition: BDI-II-PERSIAN. Depress Anxiety 2005; 21(4): 185-92.
- Beck AT, Steer RA, Brown GK. BDI-II, beck depression inventory: Manual. New York, NY: Psychological Corporation; 1996.
- Naeinian MR, Shairi MR, Sharifi M, Hadian M. To study reliability and validity for a brief measure for assessing generalized anxiety disorder (GAD-7). Clinical Psychology & Personality 2011; 3(4): 41-50. [In Persian].
- Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci 1999; 169(1-2): 13-21.
- Mohamadi M, Mohaqeqi Kamal SH, Vameghi M, Rafey H, Setareh Forouzan A, Sajjadi H. A meta-analysis of studies related prevalence of depression in Iran. J Research Health 2017; 7(1): 581--93.
- Hajebi A, Motevalian SA, Rahimi-Movaghar A, Sharifi V, Amin-Esmaeili M, Radgoodarzi R, et al. Major anxiety disorders in Iran: Prevalence, sociodemographic correlates and service utilization. BMC Psychiatry 2018; 18(1): 261.
- Mittelman MS, Ferris SH, Shulman E, Steinberg G, Ambinder A, Mackell JA, et al. A comprehensive support program: Effect on depression in spouse-caregivers of AD patients. Gerontologist 1995; 35(6): 792-802.
- Schulz R, O'Brien AT, Bookwala J, Fleissner K. Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. Gerontologist 1995; 35(6): 771-91.
- Harding R, Higginson IJ, Donaldson N. The relationship between patient characteristics and carer psychological status in home palliative cancer care. Support Care Cancer 2003; 11(10): 638-43.
- Peters M, Jenkinson C, Doll H, Playford ED, Fitzpatrick R. Carer quality of life and experiences of health services: A cross-sectional survey across three neurological conditions. Health Qual Life Outcomes 2013; 11: 103.
- Folkman S, Chesney MA, Cooke M, Boccellari A, Collette L. Caregiver burden in HIV-positive and HIV-negative partners of men with AIDS. J Consult Clin Psychol 1994; 62(4): 746-56.
- Cifu DX, Carne W, Brown R, Pegg P, Ong J, Qutubuddin A, et al. Caregiver distress in parkinsonism. J Rehabil Res Dev 2006; 43(4): 499-508.
- Gillen R, Tennen H, Affleck G, Steinpreis R. Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil 1998; 13(3): 31-43.
- Lillo P, Mioshi E, Hodges JR. Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: A comparative study. BMC Neurol 2012; 12: 156.
- Miyashita M, Narita Y, Sakamoto A, Kawada N, Akiyama M, Kayama M, et al. Care burden and depression in caregivers caring for patients with intractable neurological diseases at home in Japan. J Neurol Sci 2009; 276(1-2): 148-52.
- Rabkin JG, Albert SM, Del Bene ML, O'Sullivan I, Tider T, Rowland LP, et al. Prevalence of depressive disorders and change over time in late-stage ALS. Neurology 2005; 65(1): 62-7.
- Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology 2007; 68(12): 923-6.
- Ferentinos P, Paparrigopoulos T, Rentzos M, Zouvelou V, Alexakis T, Evdokimidis I. Prevalence of major depression in ALS: Comparison of a semi-structured interview and four self-report measures. Amyotroph Lateral Scler 2011; 12(4): 297-302.
- Taylor L, Wicks P, Leigh PN, Goldstein LH. Prevalence of depression in amyotrophic lateral sclerosis and other motor disorders. Eur J Neurol 2010; 17(8): 1047-53.
- Grabler MR, Weyen U, Juckel G, Tegenthoff M, Mavrogiorgou-Juckel P. Death anxiety and depression in amyotrophic lateral sclerosis patients and their primary caregivers. Front Neurol 2018; 9: 1035.