Caregiver quality of life in multiple sclerosis: a multicentre Italian study

The purpose of this study was to evaluate the quality of life (QoL) of multiple sclerosis (MS) caregivers, and to determine relationships that may exist between caregiver and patient QoL. Patients with definite MS (n=445) and their caregivers (n=445) were required to complete the generic, 36-item short-form (SF-36) Health Survey. Median SF-36 dimension scores ranged from 55 to 100 for caregivers and from 46 to 78 for patients. Although the QoL of MS carers was not as severely affected as that of patients, caregiving was associated with lower mental health, vitality and general health scores, compared to healthy subjects. Multivariate analyses revealed significant differences between the predictors of patient QoL and caregiver QoL. The main predictors of patient QoL were Expanded Disability Status Scale (EDSS) score, MS course, fatigue and depression. Female gender and advanced age were the main predictors of lower QoL in caregivers. In addition, patient BDI score was found to be a significant predictor of almost all caregiver SF-36 dimension scores, while EDSS score, disease duration and course, and patient therapeutic characteristics were found to be predictors of some caregiver SF-36 dimension scores. Therefore, caregiver QoL was significantly influenced by patient characteristics, and supportive strategies for MS caregivers are warranted. Multiple Sclerosis 2007; 13: 412-419. http://msj.sagepub.com

[1]  H. Brodaty,et al.  Effect of a training programme to reduce stress in carers of patients with dementia. , 1989, BMJ.

[2]  K. Aronson.  Quality of Life Among Persons with Multiple Sclerosis and their Caregivers , 1997, Neurology.

[3]  J. Burleson,et al.  Spouse caregivers of Alzheimer patients: problem responses to caregiver burden , 2006, Aging & mental health.

[4]  Jacob Cohen.  Statistical Power Analysis , 1992 .

[5]  G. Apolone,et al.  The Italian SF-36 Health Survey: translation, validation and norming. , 1998, Journal of clinical epidemiology.

[6]  N B Lincoln,et al.  Factors associated with carer strain in carers of people with multiple sclerosis. , 2001, Disability and rehabilitation.

[7]  C. Canam,et al.  Quality of life for family caregivers of people with chronic health problems. , 1999, Rehabilitation nursing : the official journal of the Association of Rehabilitation Nurses.

[8]  Angelo Ghezzi,et al.  Validation of Italian multiple sclerosis quality of life 54 questionnaire , 1999, Journal of neurology, neurosurgery, and psychiatry.

[9]  A. Beck,et al.  An inventory for measuring depression. , 1961, Archives of general psychiatry.

[10]  A. Chiò,et al.  Caregiver burden and patients’ perception of being a burden in ALS , 2005, Neurology.

[11]  N. Larocca,et al.  The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. , 1989, Archives of neurology.

[12]  M. Yaffe,et al.  Toward a model of quality of life for family caregivers of stroke survivors , 2004, Quality of Life Research.

[13]  Rohit Bakshi,et al.  Quality of life in patients with multiple sclerosis The impact of fatigue and depression , 2002, Journal of the Neurological Sciences.

[14]  N. Tarrier,et al.  Effectiveness of cognitive–behavioural family intervention in reducing the burden of care in carers of patients with Alzheimer's disease , 2000, British Journal of Psychiatry.

[15]  M. Swash,et al.  The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe , 2000, Journal of Neurology.

[16]  Jacob Cohen,et al.  A comprehensive support program: effect on depression in spouse-caregivers of AD patients. , 1995, The Gerontologist.

[17]  D. Stewart,et al.  Stroke survivors' behavioral and psychologic symptoms are associated with informal caregivers' experiences of depression. , 2006, Archives of physical medicine and rehabilitation.

[18]  C. Sherbourne,et al.  The MOS 36-Item Short-Form Health Survey (SF-36) , 1992 .

[19]  Lublin Fd,et al.  Defining the clinical course of multiple sclerosis: results of an international survey. National Multiple Sclerosis Society (USA) Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. , 1996 .

[20]  W. Engel,et al.  Increased circulation of T lymphocytes bearing surface thymosin α1 in patients with myasthenia gravis , 1983, Neurology.

[21]  M. Amato,et al.  Quality of life in multiple sclerosis: the impact of depression, fatigue and disability , 2001, Multiple sclerosis.

[22]  V. Tomassini,et al.  Relationship between emotional distress in caregivers and health status in persons with multiple sclerosis , 2004, Multiple sclerosis.

[23]  A. Beck,et al.  Psychometric properties of the Beck Depression Inventory: Twenty-five years of evaluation , 1988 .

[24]  J. Kurtzke.  Rating neurologic impairment in multiple sclerosis , 1983, Neurology.

[25]  J. Karlawish,et al.  The Relationship Between Caregivers' Global Ratings of Alzheimer's Disease Patients' Quality of Life, Disease Severity, and the Caregiving Experience , 2001, Journal of the American Geriatrics Society.

[26]  V. Dulieu,et al.  Les aidants familiaux des personnes myopathes : liaisons entre charge de soins, qualité de vie et santé mentale , 2006 .

[27]  T. Riise,et al.  Quality of life in multiple sclerosis , 1999, Neurology.

[28]  S. Reingold,et al.  Defining the clinical course of multiple sclerosis , 1996, Neurology.

[29]  K. Aronson,et al.  Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. , 1996, Disability and rehabilitation.

[30]  R. Knight,et al.  Psychosocial consequences of caring for a spouse with multiple sclerosis. , 1997, Journal of clinical and experimental neuropsychology.

[31]  G Klösch,et al.  Factors influencing quality of life in multiple sclerosis patients: disability, depressive mood, fatigue and sleep quality , 2004, Acta neurologica Scandinavica.

[32]  A. Compston,et al.  Recommended diagnostic criteria for multiple sclerosis: Guidelines from the international panel on the diagnosis of multiple sclerosis , 2001, Annals of neurology.

[33]  F. Patti,et al.  Health-related quality of life and depression in an Italian sample of multiple sclerosis patients , 2003, Journal of the Neurological Sciences.