Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Disability and Rehabilitation

Volumn 33, Issue 2, 2011, Pages 113-121

  Buchanan, R ^a   Huang, C ^b  

^a MISSISSIPPI STATE UNIVERSITY   (United States)

^b INDIANA UNIVERSITY   (United States)

Author keywords

caregiver; health related quality of life; Multiple sclerosis

Indexed keywords

ARTICLE; CAREGIVER; FEMALE; HUMAN; INFORMATION PROCESSING; MALE; MIDDLE AGED; MULTIPLE SCLEROSIS; NURSING; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; REGRESSION ANALYSIS; STATISTICAL MODEL;

CAREGIVERS; DATA COLLECTION; FEMALE; HUMANS; MALE; MIDDLE AGED; MODELS, STATISTICAL; MULTIPLE SCLEROSIS; QUALITY OF LIFE; REGRESSION ANALYSIS;

EID: 78649834878     PISSN: 09638288     EISSN: 14645165     Source Type: Journal    
DOI: 10.3109/09638288.2010.486467     Document Type: Article

References (48)

1. National Multiple Sclerosis Society. Who gets MS? 2008. Electronic Citation. http://www.nationalmssociety.org/aboutmultiple-sclerosis/what-we-know- about-ms/who-gets-ms/index.aspx. Last accessed March 2010.
2. Swain, S. Multiple sclerosis. Primary health care implications. Nurse Pract 1996;21:40,43,47-50.
3. Bradley, W, Daroff R, Fenichel G, Marsden C. Neurology in clinical practice, 2nd ed. Newton, MA: Butterworth-Heinemann; 1996.
4. Lublin F, Reingold S. Defining the clinical course of multiple sclerosis: results of an international survey. Neurology 1996;46:907-911.
5. Rudick R, Cohen J, Weinstock-Guttman B, Kinkel R, Ransohoff R. Drug therapy: management of multiple sclerosis. N Engl J Med 1997;337:1604-1611.
6. National Multiple Sclerosis Society. What is multiple sclerosis? 2008. Electronic Citation. http://www.nationalmssociety.org/about-multiple-sclerosis/ what-we-know-about-ms/what-isms/index.aspx. Last accessed March 20, 2010.
7. National Multiple Sclerosis Society. Frequently asked questions about multiple sclerosis. 2008. Electronic Citation. http://www.nationalmssociety.org/ about-multiple-sclerosis/whatwe-know-about-ms/FAQs-about-MS/index.aspx#bymptoms. Last accessed March 20, 2010.
8. Somerset M, Sharp D, Campbell R. Multiple sclerosis and quality of life: a qualitative investigation. J Health Serv Res Policy 2002;7(3):151-159.
9. Thompson AJ, Hobart JC. 1998. Multiple sclerosis: assessment of disability and disability status. J Neurol 1998;245:189-196.
10. National Multiple Sclerosis Society. Long term care support and services background. 2008. Electronic Citation. http://www.nationalmssociety.org/ download.aspx?id=206. Last accessed March 2010.
11. Minden SL, Frankel D, Hadden LS, Srinath KP, Perloff JN. Disability in elderly people with multiple sclerosis: an analysis of baseline data from the Sonya Slifka longitudinal multiple sclerosis study. NeuroRehabil 2004;19:55-67.
12. National Multiple Sclerosis Society. Research highlights; Winter/Spring. 2007. Sonya Slifka longitudinal study renewed. Electronic Citation. http://www.nationalmssociety.org/download.aspx?id=77. Last accessed March 2010.
13. Aronson KJ, Cleghorn G, Goldenberg E. Assistance arrangements and use of services among persons with multiple sclerosis and their caregivers. Disabil Rehabil 1996;18:354-361.
14. Carton H, Loos R, Pacolet J, Versieck K, Vlietinck R. A quantitative study of unpaid caregiving in multiple sclerosis. Mult Scler 2000;6:274-279.
15. Buchanan RJ, Radin D, Chakravorty BJ, Tyry T. Informal care giving to more disabled people with multiple sclerosis. Disabil Rehabil 2009;31(15):1244-1256.
16. McKeown LP, Porter-Armstyrong AP, Baxter GD. Caregivers of people with multiple sclerosis: experiences of support. Mult Scler 2004;10:219-230.
17. McKeown LP, Porter-Armstyrong AP, Baxter GD. The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabil 2003;17:34-248.
18. O'Hara L, DeSouza L, Ide L. The nature of care giving in a community sample of people with multiple sclerosis. Disabil Rehabil 2004;26:1401-1410.
19. Pakenham KI, The nature of caregiving in multiple sclerosis: development of the caregiving tasks in multiple sclerosis scale. Mult Scler 2007;13:929-938.
20. Khan F, Pallant J, Brand C. Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis. Disabil Rehabil 2007;29(15):1241-1250.
21. Knight RG, Devereux RC, Godfrey HP. Psychosocial consequences of caring for a spouse with multiple sclerosis. J Clin Exp Neuropsychol 1997;19(1):7-19.
22. Figved N, Myhr KM, Larsen JP, Aarsland D. Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms. J Neurol Neurosurg Psychiatry 2007;78:1097-1102.
23. Forbes A, While A, Mathes L, Griffiths P. Health problems and health-related quality of life in people with multiple sclerosis. Clin Rehabil 2006;20:67-78.
24. Benito-Leon J, Morales JM, Rivera-Navarros J, Mitchell AJ. A review about the impact of multiple sclerosis on health-related quality of life. Disabil Rehabil 2003;25:1291-303.
25. Turner-Bowker DM, Bayliss MS, Ware JE, Kosinkski M. Usefulness of the SF-8TM health survey for comparing the impact of migraine and other conditions. Qual Life Res 2003;12:1003-1012.
26. Mitchell AJ, Benito-Leon J, Morales Gonzalez JM, Rivera-Navarros J. Quality of life and its assessment in multiple sclerosis: integrating physical and psychological components of wellbeing. Lancet Neurol 2005;4:56-66.
27. Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW. A health-related quality of life measure for multiple sclerosis. Qual Life Res 1995;4:187-206.
28. Lefante JJ, Harmon GN, Ashby KM, Barnard D, Webber LS. Use of the SF-8 to assess health-related quality of life for a chronically ill, low-income population participating in the Central Louisiana Medication Access Program (CMAP). Qual Life Res 2005;14:665-673.
29. Modi AC, Guilfoyle SM, Zeller MH. Impaired health-related quality of life in caregivers of youth seeking obesity treatment. J Pediatr Psychol 2009;34(2):147-155.
30. F, Amato MP, Battaglia MA, Pitaro M, Russo P, Solaro C, Trojano M. Caregiver quality of life in multiple sclerosis: a multicentre Italian study. Mult Scler 2007;13:412-419. (Pubitemid 46706003)
31. Aronson KJ. Quality of life among persons with multiple sclerosis and their caregivers. Neurology 1997;48:74-80.
32. Sherman TE, Rapport LJ, Hanks RA, Ryan KA, Keenan PA, Khan O, Lisak RP. Predictors of well-being among significant others of persons with multiple sclerosis. Mult Scler 2007;13:238-249. (Pubitemid 46592778)
33. Pozzilli C, Palmisano L, Mainero C, Tomassini V, Marinelli F, Ristori G, Gasperini C, Fabiani M, Battaglia MA. Relationship between emotional distress in caregivers and health status in persons with multiple sclerosis. Mult Scler 2004;10:442-446.
34. The North American Research Committee On Multiple Sclerosis (NARCOMS) Project. Goals and mission. Web site last updated March 1, 2010. Electronic Citation. http://www.mscare.org/cmsc/CMSC-NARCOMS-Information.html. Last accessed March 2010.
35. Marrie RA, Horwitz R, Cutter G, Tyry T, Campagnolo D, Volmer T. Comorbidity, socioeconomic status and multiple sclerosis. Mult Scler 2008;14:1091-1098.
36. The North American Research Committee On Multiple Sclerosis (NARCOMS) Project. Patient Registry Web site last updated March 1, 2010. Electronic Citation. http://www.mscare.org/cmsc/CMSC-NARCOMS-Patient-Registry.html. Last accessed March 2010.
37. Marrie RA, Horwitz R, Cutter G, Tyry T, Campagnolo D, Volmer T. Comorbidity delays diagnosis and increases disability at diagnosis in MS. Neurology 2009;72(2):117-124.
38. Hadjimichael O, Vollmer T, Oleen-Burkey M. Fatigue characteristics in multiple sclerosis: the North American Research Committee on Multiple Sclerosis (NARCOMS) survey. Health Qual Life Outcomes. 2008;6:100 (14 November 2008). Electronic Citation. http://www.hqlo.com/content/pdf/1477-7525-6-100.pdf. Last accessed March 2010.
39. Nortvedt MW, Riise T, Myhr, KM, Nyland HI. Quality of life in multiple sclerosis: measuring the disease effects more broadly. Neurology 1999;53:1098-1103.
40. Public Policy Research Institute, Texas A&M University. Survey Research Laboratory., Capabilities: telephone interviewing. Electronic Citation. http://ppri.tamu.edu/SurveyLab.asp. Last accessed March 2010.
41. R Health Plan Survey 3.0 adult commercial questionnaire. 2008. Electronic Citation. https://www.cahps.ahrq.gov/CAHPSkit/files/ce151ad-engadultcom-3.0.doc Last accessed March 20, 2010.
42. ™). Qual Life Res 2003;12:953-961.
43. ™ health survey. Lincoln, RI: QualityMetric Incorporated, 2001.
44. Steyerberg EW, Harrell FE. Chapter 8: Statistical models for prognostication. In Max MB, Lynn J., editors. Symptom research: methods and opportunities. (Bethesda, MD: National Institutes of Health, 2003). Electronic Citation. http://symptomresearch.nih.gov/index.htm. Last accessed March 20, 2009.
45. Steyerberg EW, Eijkemans MJC, Harell FE, Habbema DF. Prognostic modeling with logistic regression analysis: a comparison of selection and estimation methods in small data sets. Stat Med 2000;19:1059-1079.
46. Waldron-Perrine B, Rapport LJ, Ryan KA, Harper KT. Predictors of life-satisfaction among caregivers of individuals with multiple sclerosis. Clin Neuropsychol 2009;23:462-78.
47. National Multiple Sclerosis Society. Getting to know the MS health care team. 2009. Electronic Citation. http://www.nationalmssociety.org/living-with- multiple-sclerosis/gettingthe-care-you-need/team-of-ms-professionals/ getting-to-knowthe-ms-health-care-team/index.aspx. Last accessed March 2010.
48. Buchanan RJ, Huang C, Kaufman M. Health-related quality of life among young adults with multiple sclerosis. Under publication review. Authors gave permission to cite this study.