Table of Contents Author Guidelines Submit a Manuscript
Behavioural Neurology
Volume 2015, Article ID 648415, 10 pages
http://dx.doi.org/10.1155/2015/648415
Research Article

Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

1Department of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, 75013 Paris, France
2Health Economics Department, LEDa-LEGOS, PSL, Paris-Dauphine University, 75016 Paris, France
3Department of Neurology, Pitié-Salpêtrière Hospital, 75013 Paris, France
4ER6 Unit, Pierre and Marie Curie University, Pitié-Salpêtrière Hospital, 75013 Paris, France
5CRICM, Inserm UMR S975, Pierre and Marie Curie University, Pitié-Salpêtrière Hospital, 75013 Paris, France

Received 19 February 2015; Accepted 30 April 2015

Academic Editor: Antonio Orlacchio

Copyright © 2015 E. Bayen et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Linked References

  1. R. Buchanan, D. Radin, B. J. Chakravorty, and T. Tyry, “Perceptions of informal care givers: health and support services provided to people with multiple sclerosis,” Disability and Rehabilitation, vol. 32, no. 6, pp. 500–510, 2010. View at Publisher · View at Google Scholar · View at Scopus
  2. Institut National de la Statistique et des Etudes Economiques (INSEE), Enquête Handicap Santé 2008—Aidants Informels (HSA), 2008-2009, http://www.drees.sante.gouv.fr/les-enquetes-handicap-sante,4267.html.
  3. R. J. Buchanan, D. Radin, C. Huang, and L. Zhu, “Caregiver perceptions associated with risk of nursing home admission for people with multiple sclerosis,” Disability and Health Journal, vol. 3, no. 2, pp. 117–124, 2010. View at Publisher · View at Google Scholar · View at Scopus
  4. M. Corry and A. While, “The needs of carers of people with multiple sclerosis: a literature review,” Scandinavian Journal of Caring Sciences, vol. 23, no. 3, pp. 569–588, 2009. View at Publisher · View at Google Scholar · View at Scopus
  5. M. J. Gibson, K. Kelly, and A. K. Kaplan, Family Caregiving and Transitional Care: A Critical Review. Report, Family Caregiver Allliance—National Center on Caregiving, 2012.
  6. V. Braithwaite, “Caregiving burden: making the concept scientifically useful and policy relevant,” Research on Aging, vol. 14, no. 1, pp. 3–27, 1992. View at Publisher · View at Google Scholar · View at Scopus
  7. K. Harvey, J. Catty, A. Langman et al., “A review of instruments developed to measure outcomes for carers of people with mental health problems,” Acta Psychiatrica Scandinavica, vol. 117, no. 3, pp. 164–176, 2008. View at Publisher · View at Google Scholar · View at Scopus
  8. A. Forbes, A. While, and L. Mathes, “Infromal carer activities, carer burden and health status in multiple sclerosis,” Clinical Rehabilitation, vol. 21, no. 6, pp. 563–575, 2007. View at Publisher · View at Google Scholar · View at Scopus
  9. R. H. S. R. Roxburgh, S. R. Seaman, T. Masterman et al., “Multiple sclerosis severity score: using disability and disease duration to rate disease severity,” Neurology, vol. 64, no. 7, pp. 1144–1151, 2005. View at Publisher · View at Google Scholar · View at Scopus
  10. M. Daumer, A. Neuhaus, J. Herbert, and G. Ebers, “Prognosis of the individual course of disease: the elements of time, hetereogeneity and precision,” Journal of the Neurological Sciences, vol. 287, supplement 1, pp. S50–S55, 2009. View at Publisher · View at Google Scholar · View at Scopus
  11. J. Koffman, W. Gao, C. Goddard et al., “Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of black caribbean and white british people,” PLoS ONE, vol. 8, no. 10, Article ID e75431, 2013. View at Publisher · View at Google Scholar · View at Scopus
  12. I. Kister, E. Chamot, A. R. Salter, G. R. Cutter, T. E. Bacon, and J. Herbert, “Disability in multiple sclerosis: a reference for patients and clinicians,” Neurology, vol. 80, no. 11, pp. 1018–1024, 2013. View at Publisher · View at Google Scholar · View at Scopus
  13. A. R. Pachner and I. Steiner, “The multiple sclerosis severity score (MSSS) predicts disease severity over time,” Journal of the Neurological Sciences, vol. 278, no. 1-2, pp. 66–70, 2009. View at Publisher · View at Google Scholar · View at Scopus
  14. J. F. Kurtzke, “Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS),” Neurology, vol. 33, no. 11, pp. 1444–1452, 1983. View at Publisher · View at Google Scholar · View at Scopus
  15. P. W. Burgess, N. Alderman, B. A. Wilson, J. J. Evans, and H. Emslie, “The dysexecutive questionnaire,” in Behavioural Assessment of the Dysexecutive Syndrome (BADS), B. A. Wilson, N. Alderman, P. Burgess, H. Emslie, and J. J. Evans, Eds., Thames Valley Test Company, Bury St. Edmunds, UK, 1996. View at Google Scholar
  16. A. Araqi-Houssaini, I. Lahlou, Y. Benkadmir et al., “Multiple sclerosis severity score in a cohort of Moroccan patients,” Multiple Sclerosis, vol. 20, no. 6, pp. 664–665, 2014. View at Publisher · View at Google Scholar · View at Scopus
  17. J. E. Ware Jr., M. Kosinski, and S. D. Keller, “A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity,” Medical Care, vol. 34, no. 3, pp. 220–233, 1996. View at Publisher · View at Google Scholar · View at Scopus
  18. A. Wimo, A. L. Wetterholm, V. Mastey, and B. Winblad, “Evaluation of the healthcare resource and caregiver time in anti-dementia drug trials-a quantitative battery,” in Health Economics of Dementia, J. W. A. S. Chichester, Ed., pp. 465–499, 1998. View at Google Scholar
  19. S. H. Zarit, K. E. Reever, and J. Bach-Peterson, “Relatives of the impaired elderly: correlates of feelings of burden,” Gerontologist, vol. 20, no. 6, pp. 649–655, 1980. View at Publisher · View at Google Scholar · View at Scopus
  20. E. D. Rankin, M. W. Haut, R. W. Keefover, and M. D. Franzen, “The establishment of clinical cutoffs in measuring caregiver burden in dementia,” Gerontologist, vol. 34, no. 6, pp. 828–832, 1994. View at Publisher · View at Google Scholar · View at Scopus
  21. J. Rivera-Navarro, J. Benito-León, C. Oreja-Guevara et al., “Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis,” Multiple Sclerosis, vol. 15, no. 11, pp. 1347–1355, 2009. View at Publisher · View at Google Scholar · View at Scopus
  22. R. J. Buchanan, D. Radin, and C. Huang, “Burden among male caregivers assisting people with multiple sclerosis,” Gender Medicine, vol. 7, no. 6, pp. 637–646, 2010. View at Publisher · View at Google Scholar · View at Scopus
  23. H. Akaike, “Information measures and model selection,” Bulletin of the International Statistical Institute, vol. 44, pp. 277–291, 1983. View at Google Scholar
  24. R. J. Buchanan, C. Huang, and Z. Zheng, “Factors affecting employment among informal caregivers assisting people with multiple sclerosis,” International Journal of MS Care, vol. 15, no. 4, pp. 203–210, 2013. View at Publisher · View at Google Scholar · View at Scopus
  25. H. Carton, R. Loos, J. Pacolet, K. Versieck, and R. Vlietinck, “A quantitative study of unpaid caregiving in multiple sclerosis,” Multiple Sclerosis, vol. 6, no. 4, pp. 274–279, 2000. View at Publisher · View at Google Scholar · View at Scopus
  26. J. Rivera-Navarro, J. M. Morales-González, J. Benito-León et al., “Informal caregiving in mulitple sclerosis patients: data from the Madrid demyelinating disease group study,” Disability and Rehabilitation, vol. 25, no. 18, pp. 1057–1064, 2003. View at Publisher · View at Google Scholar · View at Scopus
  27. R. L. L. Wood, N. Alderman, and C. Williams, “Assessment of neurobehavioural disability: a review of existing measures and recommendations for a comprehensive assessment tool,” Brain Injury, vol. 22, no. 12, pp. 905–918, 2008. View at Publisher · View at Google Scholar · View at Scopus
  28. Legifrance, “Loi n° 2005-102 du 11 février 2005 pour l'égalité des droits et des chances, la participation et la citoyenneté des personnes handicapées,” Journal Officiel de la République Française, vol. 36, p. 2353, 2005. View at Google Scholar
  29. J. Benito-León, J. Rivera-Navarro, A. L. Guerrero et al., “The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis,” Journal of Clinical Epidemiology, vol. 64, no. 6, pp. 675–686, 2011. View at Publisher · View at Google Scholar · View at Scopus
  30. O. Ertekin, S. Ozakbas, and E. Idiman, “Caregiver burden, quality of life and walking ability in different disability levels of multiple sclerosis,” NeuroRehabilitation, vol. 34, no. 2, pp. 313–321, 2014. View at Google Scholar
  31. F. Patti, “Cognitive impairment in multiple sclerosis,” Multiple Sclerosis, vol. 15, no. 1, pp. 2–8, 2009. View at Publisher · View at Google Scholar · View at Scopus
  32. S. Beer, F. Khan, and J. Kesselring, “Rehabilitation interventions in multiple sclerosis: an overview,” Journal of Neurology, vol. 259, no. 9, pp. 1994–2008, 2012. View at Publisher · View at Google Scholar · View at Scopus
  33. K. Boschen, J. Gargaro, C. Gan, G. Gerber, and C. Brandys, “Family interventions after acquired brain injury and other chronic conditions: a critical appraisal of the quality of the evidence,” NeuroRehabilitation, vol. 22, no. 1, pp. 19–41, 2007. View at Google Scholar · View at Scopus
  34. H. Parisé, F. Laliberté, P. Lefebvre et al., “Direct and indirect cost burden associated with multiple sclerosis relapses: excess costs of persons with MS and their spouse caregivers,” Journal of the Neurological Sciences, vol. 330, no. 1-2, pp. 71–77, 2013. View at Publisher · View at Google Scholar · View at Scopus
  35. A. Bogosian, R. Moss-Morris, L. Yardley, and L. Dennison, “Experiences of partners of people in the early stages of multiple sclerosis,” Multiple Sclerosis, vol. 15, no. 7, pp. 876–884, 2009. View at Publisher · View at Google Scholar · View at Scopus
  36. G. Kadushin, “Home health care utilization: a review of the research for social work,” Health and Social Work, vol. 29, no. 3, pp. 219–244, 2004. View at Publisher · View at Google Scholar · View at Scopus
  37. K. I. Pakenham, “The positive impact of multiple sclerosis (MS) on carers: associations between carer benefit finding and positive and negative adjustment domains,” Disability and Rehabilitation, vol. 27, no. 17, pp. 985–997, 2005. View at Publisher · View at Google Scholar · View at Scopus
  38. E. Bayen, P. Pradat-Diehl, C. Jourdan et al., “Predictors of informal care burden 1 year after a severe traumatic brain injury: results from the Paris-TBI study,” Journal of Head Trauma Rehabilitation, vol. 28, no. 6, pp. 408–418, 2013. View at Publisher · View at Google Scholar · View at Scopus
  39. E. Bayen, C. Jourdan, I. Ghout et al., “Objective and subjective burden of informal caregivers 4 years after a severe traumatic brain injury: results from the PariS-TBI study,” Journal of Head Trauma Rehabilitation, 2015. View at Publisher · View at Google Scholar
  40. M. A. Koopmanschap, N. J. A. Van Exel, B. Van Den Berg, and W. B. F. Brouwer, “An overview of methods and applications to value informal care in economic evaluations of healthcare,” PharmacoEconomics, vol. 26, no. 4, pp. 269–280, 2008. View at Publisher · View at Google Scholar · View at Scopus
  41. N. Figved, K.-M. Myhr, J.-P. Larsen, and D. Aarsland, “Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms,” Journal of Neurology, Neurosurgery & Psychiatry, vol. 78, no. 10, pp. 1097–1102, 2007. View at Publisher · View at Google Scholar · View at Scopus
  42. R. J. Buchanan and C. Huang, “The need for mental health care among informal caregivers assisting people with multiple sclerosis,” International Journal of MS Care, vol. 15, no. 2, pp. 56–64, 2013. View at Publisher · View at Google Scholar · View at Scopus
  43. J. S. Kreutzer, T. M. Stejskal, E. E. Godwin, V. D. Powell, and J. C. Arango-Lasprilla, “A mixed methods evaluation of the Brain Injury family intervention,” NeuroRehabilitation, vol. 27, no. 1, pp. 19–29, 2010. View at Publisher · View at Google Scholar · View at Scopus
  44. J. C. Arango-Lasprilla, I. Panyavin, E. J. Merchan et al., “Evaluation of a group cognitive-behavioral dementia caregiver intervention in Latin America,” American Journal of Alzheimer's Disease & Other Dementias, vol. 29, no. 6, pp. 548–555, 2014. View at Google Scholar
  45. L. P. McKeown, A. P. Porter-Armstrong, and G. D. Baxter, “Caregivers of people with multiple sclerosis: experiences of support,” Multiple Sclerosis, vol. 10, no. 2, pp. 219–230, 2004. View at Publisher · View at Google Scholar · View at Scopus
  46. A. Gustavsson, L. Jönsson, and A. Zbrozek, “Willingness to pay for reductions in care need: estimating the value of informal care,” Alzheimer's and Dementia, vol. 4, no. 4, pp. 661–668, 2008. View at Google Scholar